NEWSLETTER January 2013

unveiled a dementia mapping tool Highlights in this issue Editorial and also released new home care resources. 2 January: AE welcomes Kate 2 Alzheimer Ellis Europe started Back in Brussels, the Commission is the new year by 14 January: EMA approves 9 recruiting post-doc researchers - welcoming a new two generic dementia drugs including specialists in the life and colleague: Kate health sciences - as well as experts 24 January: Commission seeks 4 Ellis joined us on expert advisors from all fields for the Horizon 2020 2 January as a programme. The Commission also 30 January: Commission hiring 11 replacement for launched a new health initiative post-docs researchers Gwladys, who is now on maternity targeting chronic diseases and 31 January: MEP Marina 3 leave. In addition, we bid farewell multimorbidity. Meanwhile, Yannakoudakis becomes EAA to Jan Frederik Meijer, one of the Ireland took over the EU Council Vice-Chair founding members of the Presidency and will try to conclude European Working Group of the discussions around research People with Dementia. funding in Horizon 2020. The European Alzheimer’s Alliance In scientific news, the EMA also saw a departure, as Frieda approved two generic drugs for Brepoels resigned from the dementia and a Dutch group - European Parliament. She was an including Alzheimer Nederland - is ardent EAA activist and we thank researching ways to ease the her for her efforts. We’re also very impact of lumbar punctures. The pleased to welcome Marina NILVAD project, in which AE is a Yannakoudakis as the new Vice- partner, has appointed a new Chairperson of the alliance. Scientific Medical Advisor and has

In a few weeks we’ll be holding the also secured additional funding. first lunch debate of the year at The DECIDE project is drawing to the European Parliament. The an end, with a final workshop and debate will focus on clinical trials conference planned in February. and we’ll also circulate the latest Table of contents January also saw the release of a issue of Dementia in Europe report from Mental Health Europe, Editorial ...... 1 magazine. This will be followed by urging governments to replace a Public Affairs meeting where Alzheimer Europe ...... 2 existing guardianship policies with we’ll outline our research plans for supported decision-making. AE Projects ...... 2 2013. We hope to see many delegates from our member Finally, our website has been European Alzheimer’s Alliance ...... 3 associations in Brussels - especially updated with the latest news AE Networking 2013 ...... 3 as they’ll play a major role in our about the 23rd Annual Conference research. in Malta. The abstracts are already EU Developments ...... 4 coming in and we look forward to Our members were also Members’ News ...... 5 reading many more by the 30 April productive in January. The Dutch deadline. For those who are Science Watch ...... 8 association provided funding for unfamiliar with our conferences, dementia-related research and Dementia in Society ...... 10 we suggest a visit to the AE Jersey launched a new specialised website: it now features videos New Publications & Resources...... 10 nursing service. Slovenia continues from our 2012 conference in to attract crowds to its Alzheimer Job opportunities ...... 11 Vienna. Café sessions. Portugal opened a AE Calendar 2013 ...... 11 new care home designed for people with dementia and the Future Conferences ...... 12 association’s new Board members Jean Georges took office. Spain’s CEAFA also Executive Director elected a new Board and Federazione Alzheimer Italia began their annual awareness campaign. The UK Alzheimer’s Society

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Alzheimer Europe AE Projects 2 January: Kate Ellis joins Alzheimer Europe 2 January: NILVAD welcomes new Scientific Medical Advisor Alzheimer Europe is pleased to welcome Kate Ellis, who joined the team on 2 The NILVAD partners are delighted January. Kate will replace Gwladys during to welcome Dr. Sean Kennelly to her maternity and parental leave and will the project as Scientific Medical stay with us until July 2014. You can reach Advisor to Dr. Brian Lawlor, Project Coordinator. her every afternoon at: Dr. Kennelly, a Consultant Geriatrician at Dublin’s Tallaght [email protected] Hospital, has been informally associated with the project 14 January: Jan Frederik Meijer resigns from since it began. He will provide his expertise and input EWGPWD during the clinical trial phase. Dr. Lawlor said: “Going forward, I hope that Sean will also be able to contribute to Jan Frederik Meijer, Vice Chairperson of the European the some of the scientific developments that will arise Working Group of People with Dementia, has resigned from our work.” from the Group following a second opinion that contradicted his initial dementia diagnosis. 9 January: NILVAD partner secures funding for sub-study Mr Meijer’s second opinion concluded that he is not suffering from any form of dementia. It was issued at VU Dr. Olga Meulenbroek, NILVAD partner University Medical Center (VUmc) in Amsterdam, an from Radboud University Nijmegen institution that specialises in dementia at younger ages. Medical Centre in the Netherlands, has Jan Frederik was initially diagnosed four years ago at the recently received funding for the age of 58. proposed sub-study on cerebral blood flow (CBF). She made successful Alzheimer Europe was very pleased to hear that Jan applications to both ADDF (Alzheimer’s Disease Drug Frederik is not living with dementia. This highlights once Foundation) and Alzheimer Nederland. again the importance of obtaining an early and accurate diagnosis, for all age groups. It is particularly critical in ADDF, founded in 2004, is a public charity that supports younger people like Jan Frederik, where dementia is less the advancement of drugs to prevent, treat, and cure prevalent but often more difficult to diagnose. Alzheimer’s disease, related dementias, and cognitive aging. Alzheimer Nederland has provided help and The EWGPWD was very glad to have Jan Frederik in the information to people with dementia and their group, even for such a short time. The remaining communities for more than 25 years. members, along with everyone at Alzheimer Europe, thank him for his contributions and wish him all the best The CBF sub-study will monitor the effects of Nilvadipine for the future. on cerebral autoregulation, blood pressure, cerebral blood flow and cerebral damage of the participants in 15 January: AE announces abstract deadline for Nijmegen throughout the clinical trial, using sophisticated 2013 Conference blood monitoring and measurement techniques that include Arterial Spin Labelling (ASL) MRI, transcranial The deadline for submitting abstracts for the 2013 doppler and near infra-red spectroscopy. Alzheimer Europe Conference is 30 April 2013. For more information and updates, please visit the AE website. www.nilvad.eu

www.alzheimer-europe.org/Conferences/St.-Julian-s-Malta-2013 21 January: DECIDE will hold training sessions and user forum 15 January: Videos from Vienna are online The DECIDE project team will hold The videos and photos from the 22nd Alzheimer Europe a training session for new users Conference are now available on the AE website. There and a forum for existing users on are videos of all the plenary sessions and many of the 21-22 February. parallel sessions, including the German-language sessions and those involving people with dementia. DECIDE is an FP7-funded project aimed at implementing an e-infrastructure and e-service for the automatic www.alzheimer-europe.org/Conferences/Previous-conferences/2012- Vienna/Conference-Photos-and-Videos extraction of disease markers for Alzheimer's disease from RMI and PET/SPECT images and EEG traces.

DECIDE is already available to trained users through a simple web interface. The service is primarily aimed at researchers and clinicians. It is intended for research purposes and also as a support to early diagnosis of the www.alzheimer-europe.org/Donation disease. On 22 February, the DECIDE User Forum will bring together early adopters and newly trained users, in order

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to discuss the exploitation of DECIDE applications in real This decision follows her victory in the local elections of patient cases. By discussing case histories, users can gain October 2012 in Belgium last October: Frieda became a better understanding of the service, while the project Mayor of her hometown Bilzen on 1 January 2013. can collect valuable feedback to further improve the tools it offers and fit them to the real needs of clinical and Alzheimer Europe warmly thanks Frieda for her unfailing research users. support to dementia during her two mandates in the European Parliament and wishes her all the best for the Participants may attend the User Forum training in Rome, future. Italy, or access the session remotely. In either event, they are invited to register at: Marina Yannakoudakis (UK, ECR), a long-standing and http://agenda.ct.infn.it/confRegistrationFormDisplay.py/d supportive member of the Alliance, has accepted to take over as Vice-Chair of the Alliance. isplay?confId=883 For more information, please see: She said: “I am delighted to take over as European http://agenda.ct.infn.it/event/decide_UF Alzheimer’s Alliance Vice-Chair. We need more awareness of Alzheimer’s as well as ensuring quality care for those The DECIDE Applications Training on 21 February is affected and adequately funded research into the causes intended for those who have not yet been trained, or wish of the disease. I hope that as Vice-Chair of the European to learn more about the other applications. Three Alzheimer’s Alliance that I can help to begin to achieve application tracks are available: these goals.”

• GridSPM (PECT/SPECT diagnostic applications) For more information on Marina’s activities, please see www.marinayannakoudakis.com • GridMRIseg and GridGDI (RMI diagnostic application) The European Alzheimer’s Alliance was set up in the European Parliament in 2007. This is a non-exclusive, • GridEEG (EEG research application). multinational and cross-party group that currently brings Participants for the training - which can also be followed together 65 MEPs committed to support Alzheimer remotely - can register at: Europe and its members to make dementia a public http://agenda.ct.infn.it/event/DECIDE_training_Rome health priority in Europe. Over the years, the coordinated work of the European Alzheimer’s Alliance, Alzheimer Participation is free of charge for both events. A limited Europe and its members has significantly raised budget is available to cover travel expenses of awareness about dementia in Europe and helped to participants, in case their organisation cannot support prioritise dementia on the EU agenda. their attendance. However, no reimbursement will be granted without the prior assent of the project managers. Photos: Frieda Brepoels (left), Marina Yannakoudakis. For more details, participants are kindly requested to contact [email protected] European Alzheimer’s Alliance 31 January: Marina Yannakoudakis replaces Frieda Brepoels as EAA Vice-Chair

On 31 January 2013, Frieda Brepoels, MEP (Belgium) www.alzheimer-europe.org/EN/Policy-in-Practice2/European-Alzheimer-s- and Vice-Chairperson of Alliance the European Alzheimer’s Alliance (EAA), resigned from the European Parliament. Alzheimer Europe Networking 2013

On 9 January (Brussels, Belgium) Dianne attended a meeting of the proposed FP7 project PACE. On 10 January 2013 (Brussels, Belgium) Annette attended the Sanofi EU Patients Workshop dedicated to Clinical Trials. On 10-11 January (Malta) Gwladys had a meeting in Malta for the 23rd Alzheimer Europe conference. On 17 January (Luxembourg, Luxembourg) Jean met Marc Wortmann from ADI. On 21 January (Brussels, Belgium) Dianne attended the ALCOVE meeting on advance directives and competence assessment organised by the King Baudouin Foundation. On 25 January (Prague, Czech Republic) Dianne attended the INTERDEM meeting. On 28 January 2013 (Brussels, Belgium) Annette attended the Europabio/Pfizer meeting in the European Parliament on “The future of clinical trials”. On 29-30 January (Brussels, Belgium) Dianne attended the EFGCP seminar “Virtual future: the ethical dimensions of emerging technologies in clinical trials and research”.

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Members of the European Alzheimer’s Alliance

Currently, the total number of MEPs in the Alliance stands at 65, representing 22 Member States of the European Union and all seven political groups in the European Parliament. Alzheimer Europe would like to thank the following MEPs for their continued support of the European Alzheimer’s Alliance:

Austria: Becker K. Heinz (EPP), Werthmann Angelika (NI). Belgium: Ries Frédérique (ALDE), Staes Bart (Greens/EFA), Tarabella Marc (S&D). Bulgaria: Parvanova Antonyia (ALDE). Cyprus: Triantaphyllides Kyriacos (GUE-NGL). Czech Republic: Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP). Denmark: Christensen Ole (S&D), Rohde Jens (ALDE), Schaldemose Christel (S&D). Finland: Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli (ALDE), Pietikäinen Sirpa (EPP). France: Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise (EPP), Juvin Philippe (EPP), Morin-Chartier Elisabeth (EPP), Pargneaux Gilles (S&D). Germany: Niebler Angelika (EPP), Roth- Behrendt Dagmar (S&D), Ulmer Thomas (EPP), Weisgerber Anja (EPP). Greece: Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni (S&D), Kratsa- Tsagaropoulou Rodi (EPP). Ireland: Aylward Liam (ALDE), Childers Nessa (S&D), Crowley Brian (ALDE), McGuiness Mairead (EPP), Mitchell Gay (EPP). Italy: Mauro Mario (EPP), Panzeri Pier Antonio (S&D), Toia Patrizia (S&D). Lithuania: Vilija Blinkeviciute (S&D). Luxembourg: Engel Frank (EPP), Lulling Astrid (EPP). Netherlands: De Lange Esther (EPP), van Nistelrooij Lambert (EPP), Wortmann-Kool Corien (EPP). Poland: Łukacijewska Elżbieta (EPP). Portugal: Carvalho Maria da Graça (EPP), Coelho Carlos (EPP), Matias Marisa (GUE/NGL). Romania: Antonescu Elena Oana (EPP), Busoi Cristian (ALDE), Sârbu Daciana Octavia (S&D). Slovakia: Mikolasik Miroslav (EPP), Zaborska Anna (EPP). Slovenia: Peterle Alozj (EPP). Spain: Badia i Cutchet Maria (S&D). United Kingdom: Ashworth Richard (ECR), Hall Fiona (ALDE), McAvan Linda (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Taylor Keith (Greens/EFA), Vaughan Derek (S&D), Watson Graham (ALDE), Willmott Glenis (S&D), Yannakoudakis Marina (ECR).

EU Developments 10 January: Launch of 2013 European Year of Citizens 8 December: EU announces Joint Action on chronic diseases On 10 January 2013, the European Year of Citizens 2013 was officially launched in Dublin, Ireland, by European On 8 December 2012, the European Commission Commission President José Manuel Barroso, Irish Prime announced the launch of a Joint Action called “Addressing Minister Enda Kenny and Deputy PM Eamon Gilmore. chronic diseases and promoting healthy ageing across the lifecycle”. This will address the burden of chronic diseases The launch was immediately followed by the first Citizens' - with a special focus on multimorbidity - with a budget of Dialogue of the European Year with European Commission EUR five million. Vice-President Viviane Reding and Irish Minister of State for European Affairs, Lucinda Creighton. This Dialogue An additional budget of EUR one million will be made gave the audience the opportunity to discuss the EU’s available for project grants in support of the Joint Action. future, their rights, the kind of Europe they want to live in, The grants will focus on the promotion of healthy and their expectations for the European Union. Their lifestyles among the 65+ age group through the opinions will feed into future Commission proposals on prevention of specific risks, e.g. unhealthy lifestyles and strengthening rights in the Union. social isolation. The European Year will raise awareness of EU citizens' http://ec.europa.eu/eahc/documents/health/calls/2013/HP_work_plan_for_ 2013.pdf rights and will trigger public debate on the development http://ec.europa.eu/health/major_chronic_diseases/reflection_process/inde of EU citizenship in particular and of Europe in general, x_en.htm with a view to the EP elections of 2014. 1 January: Ireland takes over the EU Council To support its members and other stakeholders to spread Presidency key messages at local and regional level, the Committee of the Regions has developed an online toolkit with On 1 January, Ireland took over background information and communication material. the Presidency of the Council of the European Union from A range of events, conferences and seminars will be Cyprus for the next six months. organised across the EU at Union, national, regional or local level. Ms Reding and other EU Commissioners will The Presidency programme “For stability, jobs and join forces with national and local politicians to hold growth” was officially launched on 9 January and will debates with citizens all across Europe – to listen to them continue the EU drive for recovery. It aims to secure and answer their questions. stability in the aftermath of the economic crisis, particularly investment in sustainable jobs and growth. http://europa.eu/citizens-2013 http://europa.eu/citizens-2013/en/news/european-year-citizens-2013- In the field of justice and home affairs, the Presidency will officially-launched www.cor.europa.eu/ey2013 seek to strengthen the rights of the citizens within the http://ec.europa.eu/european-debate scope to the European Year of Citizens. In research, the Presidency will seek to reach an agreement on Horizon 2020 - the next EU programme for research and innovation. In health policy, the Presidency will promote the legislative proposals to improve public health and support research and innovation. This will cover cross- border health threats, Health for Growth (the next EU www.alzheimer-europe.org/Donation Public Health programme), tobacco and pharmaceutical and medical devices.

http://eu2013.ie/

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24 January: Commission seeks expert advisors for Members’ News Horizon 2020 The European Commission has launched a call asking 28 December 2012: Correction to “Scottish experts from all fields to participate in shaping the agenda Dementia Working Group celebrates 10th of Horizon 2020, the EU funding programme that will birthday” follow FP7. The photo caption in this Advisory groups will provide advice for the preparation of article from last month’s the Horizon 2020 calls for project proposals. Groups will newsletter was incorrect. be set up on topics of major concern - including coping The gentleman is Edward with the challenges of ageing - and they will remain active McLaughlin, not David until 2020. Batchelor. He is pictured with Nicola Sturgeon and Agnes Houston (right). Alzheimer Europe regrets the error. The expert advisory groups will start their work during spring 2013 and the first Horizon 2020 calls are expected 2 January: Jersey launches Admiral Nurse Service to go out by the end of the year. Interested individuals can register until 6 March 2013. More information is available on the Horizon 2020 website. On 2 January, the Jersey Alzheimer’s Association was very http://ec.europa.eu/research/horizon2020/index_en.cfm?pg=h2020-experts pleased to welcome Carol Courtney, an Admiral Nurse who will operate the first such service outside the UK. 28 January: Future and Emerging Technology winners Admiral Nurses are specialist mental health nurses who work exclusively with families affected by dementia to On 28 January, the European Commission announced the offer specialist psychological support, information and “Human Brain Project” and “Graphene” as the winners of advice on all aspects of caring. They may be involved at the multi-billion euro Future and Emerging Technologies different points over time, from pre-diagnosis to beyond (FET) competition. bereavement. The Admiral Nurse Service is fully funded by the Jersey Alzheimer’s Association. These projects will receive one billion euros to deliver ten years of world-beating science at the crossroads of Carol Courtney, RMN, PG DIP (Health science and technology. Each initiative involves Sciences Research) Diploma in researchers from at least 15 EU Member States and nearly Counselling (Gestalt), PG Cert Systemic 200 research institutes. Practice, Behavioural Family Therapy (Trainer), has over 23 years’ experience The Human Brain Project will create the world's largest of working in both adult and older adult experimental facility that will develop a highly detailed mental health. She has been an Admiral model of the human brain, study how the brain works and Nurse for 10 years in the UK. Prior to develop personalised treatments for neurological and this, she worked in clinical dementia research at related diseases. The project involves scientists from 87 Birmingham University for six years. Carol also heads a institutions and is led by Prof Henry Markram of the École special interest working group for Dementia UK on family Polytechnique Fédérale de Lausanne. therapy and Admiral Nursing; she is working towards a The project intends to advance knowledge in PhD on using and adapting family therapy models for neuroscience and neuro-informatics, as the brain families dealing with dementia. simulation will collect and integrate experimental data, 6 January: Alzheimer Portugal celebrates identifying and filling gaps in our knowledge. In medicine, the project's results will facilitate better diagnosis, anniversary and opens first dementia care home combined with disease and drug simulation. In computing, On 6 January, Alzheimer Portugal new techniques of interactive supercomputing will impact celebrated the 10th anniversary of its a range of industries, while devices and systems, first Day Care Centre in Lisbon - the modelled after the brain, will overcome fundamental first centre conceived specifically for limits on the energy-efficiency, reliability and people with dementia in Portugal. On programmability of current technologies, clearing the the same day, the association road for systems with brain-like intelligence. inaugurated the first care home of the association that is specifically designed for people with dementia. The Home and Day Centre “Casa do Alecrim” is a new

construction, specially designed to cater to the needs of people with dementia. The design favours autonomy, www.humanbrainproject.eu security and respect and features indoor and outdoor http://europa.eu/rapid/press-release_MEMO-13-36_en.htm http://ec.europa.eu/digital-agenda/en/news/graphene-and-human-brain- dining areas. project-win-largest-research-excellence-award-history The home is staffed by six people who can host up to 30 clients in home care, 15 in day care and 50 in home support service. Every new resident is encouraged to contribute to an individual Intervention Plan. This plan

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accommodates the habits, tastes and customs of the The results of the survey also showed that only 11% of all resident and will be reviewed on a regular basis. The memory services in the UK are accredited. The average home, located in Cascais, also offers a range of waiting time for an appointment is 32.5 working days, therapeutic activities for both residents and day clients. more than the 4-6 weeks recommended by the Memory Service National Accreditation Programme. Some memory Maria do Rosario clinics reported waiting times of up to 9 months. dos Reis Zincke, President of the alzheimers.org.uk/dementiamap National 14 January: Alzheimer Scotland comments on the Directorate of Alzheimer launch of Souvenaid Portugal, said: On 14 January, Alzheimer Scotland issued "With this a press release in response to the launch equipment, the of the Souvenaid food supplement, which result of hard work and enormous generosity of various was introduced to the UK market on the individuals and entities, both public and private, same day. Souvenaid is aimed at people in the early Alzheimer Portugal takes another significant step in stages of Alzheimer's disease and can be obtained without improving the quality of life for people with dementia and prescription. their family caregivers. The Casa do Alecrim was designed, and will be, a privileged centre of care and the The Scottish association urges Nutricia (Souvenaid’s dissemination of good practices." maker) to take steps to make the product available via prescription through the NHS, so that it may be January 6 was also the day the new Board took office, reimbursed in the same way as other food supplements. following the elections of 17 November. The new Chairman is João Carneiro da Silva. He is a civil engineer, See also the article on page 9 of this newsletter about the former carer and a very enthusiastic member of launch of Souvenaid. The full text of the press release can Alzheimer Portugal from the very beginnings of the be found on Alzheimer Scotland’s website. association in 1998. www.alzscot.org The election results showed that the new Board has 15 January: Alzheimer Nederland awards EUR 1.8 strong support from the associates. Alzheimer Portugal is million for dementia research very proud of its achievements and remains optimistic on the abilities of the Board to face the huge demanding Alzheimer Nederland has announced awards of EUR 1.8 challenges of these difficult times. million for nine dementia research projects and three fellowships. 6 January: UK dementia map shows regional variations of diagnosis The research projects will investigate potential causes of dementia, including The UK Alzheimer’s Society stress, blood-brain barrier leakage, brain has produced an interactive functioning (fMRI), newly identified proteins map that highlights the in the hippocampus and a novel gene number of people who have a diagnosis of dementia in mutation that causes Amyotrophic Lateral Sclerosis (ALS) different Primary Care Trusts (PCT) in the UK. PCTs are and Fronto-temporal dementia (FTD). units of the NHS that commission health care on a local level. The map shows wide variations in how many people Researchers will also aim to reduce the effects of are receiving diagnoses of dementia. dementia symptoms, namely symptoms of paratonia in Alzheimer’s disease and relieving symptoms of vascular The results are based on a survey of Memory Clinics, with dementia with medicines that stimulate deficit two thirds of all PCTs responding. The aim of the survey neurotransmitters and also reduce factors leading to was to investigate the quality of assessment received by comorbidity. people with dementia. Another project will study the effects of the drug Results show a 3% increase in the number of people in the nilvadipine on blood pressure and cerebral UK that have been diagnosed with dementia. This raises autoregulation, blood flow and damage. the number of people who now have a formal diagnosis to 46%. However, there are thought to be another Finally, three research fellows will receive funding to 428,000 people (54%) who are living with the condition introduce new knowledge from abroad to Dutch research but are not diagnosed. groups. Jeremy Hughes, Chief Executive at Alzheimer’s Society 20 January: FAI launches annual campaign in Italy said: “It’s disgraceful that more than half of all people On 20 January, with dementia are not receiving a diagnosis, and Federazione Alzheimer disappointing to see such a disparity in diagnosis rates in Italia (FAI) started its different regions of the UK. This goes against best clinical annual campaign to practice and is preventing people with dementia from raise awareness and funds for "Pronto Alzheimer" - the accessing the support, benefits and the medical first telephone hotline for families of people with treatments that can help them live well with the Alzheimer's disease in Italy. The campaign will run until 10 condition.” February, supported by a TV spot called "The memory

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room" that will appear on national and local television 23 January: Spominčica holds Alzheimer Cafés in networks. Slovenia The hotline provides callers with information, support, Slovenia’s Spominčica association psychological help and advice relating to the legal, social began the year with two security, psychological and social aspects of living with Alzheimer Café events. The first dementia. In addition, callers are directed towards the one took place in Ljubljana and featured an interactive most appropriate local services available. memory exercise and a cultural programme with poetry Pronto Alzheimer was created 20 years ago to give readings and a song recital. The second Café took place on practical help to people with dementia, their families and 31 January in the town of Domžale. Both events were very caregivers. Since then, it has responded to over 130,000 well attended. requests for help. Štefanija Lukič-Zlobec, Vice President of the association, In 2012, the service recorded 5,127 contacts from all over happily reports that she may soon need bigger venues, as Italy in a dedicated database. 3,176 of these contacts the Café events keep gaining in popularity. There are were from patients’ family members, with many making already four sessions planned for February. multiple contacts. The main topics of interest were:

• information about the disease and patient management, research, diagnostic centres and local services, legal and fiscal problems (2,939 calls) • requests for explanatory documentation and books (506) • psychological support (172) • appointments to receive legal, psychological and social support (152). 26 January: Spain’s CEAFA elects new Board Today, Pronto Alzheimer represents 30% of all FAI activities and has become the national reference point On 26 January, the Confederación both for the families and the professionals who deal with Española de Asociaciones de Familiares Alzheimer’s disease. de personas con Alzheimer y otras Demencias (CEAFA) elected a new Board. The new Board members are:

• President: Mr Koldo Aulestia (pictured) • Vice President: Mr Juan Carlos Rodríguez • Secretary: Mr Josep Gasulla • Treasurer: Mrs Rosa Mª Cantabrana. The new Board members, elected by majority vote of the CEAFA www.youtube.com/user/AlzheimerItalia associations, will work toward 21 January: Alzheimer Hellas organises New Year’s improving the lives and social benefits Celebration event of people with Alzheimer’s disease. In particular, they will continue to campaign for a national Alzheimer’s strategy On 21 January, Alzheimer Hellas and increase CEAFA’s visibility and influence within the celebrated the New Year by holding Spanish government. an event to cut the “Vasilopita”, or

Saint Basil’s pie. This is a very common custom in Greek homes: the pie contains a special coin and tradition holds that whoever finds it will be lucky for the whole year. The successful social event was held in Thessaloniki and www.alzheimer-europe.org/Donation attracted more than 300 people, including people with dementia, their families and caregivers and Alzheimer 28 January: Alzheimer Nederland aims to reduce Hellas staff. They had the opportunity to socialise in a the impact of lumbar punctures friendly environment and the programme also included Alzheimer Nederland, along with three other Dutch health live music and dancing. care associations, is participating in a large research Alzheimer Hellas has more such events planned for 2013, project to reduce the impact of lumbar punctures. These in the continuous effort to improve the quality of life for invasive procedures are commonly used in diagnosing people with dementia. Alzheimer's disease. The associations will support Dutch technology institute “TNO” in its investigation of using non-invasive light

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technology to measure proteins in the spinal fluid. The showed a significant restoration of memory loss and did project team (pictured) signed the agreement on 28 not experience any weight loss, neurological stress or January. signs of toxicity. TFP5 works by partially blocking the activity of Cdk5, a chemical that is abnormally hyperactive in Alzheimer’s disease. Dr. Pant said: "We hope that clinical trial studies in AD patients should yield an extended and a better quality of life as observed in mice upon TFP5 treatment. Therefore, we suggest that TFP5 should be an effective therapeutic compound."

www.fasebj.org/gca?gca=fasebj%3B27%2F1%2F174&allch=&submit=Go

8 January: Beta blockers may protect against www.alzheimer-nederland.nl/actueel/onderzoek/2013/januari/vervanging- dementia ruggenprik.aspx A new study suggests a link between the use of beta blockers and fewer signs of dementia. The study was led Science Watch by Dr. Lon White, Professor of Geriatric Medicine at the 2 January: Alzheimer’s gene variants are found in University of Hawaii. infants Researchers examined the brains of 774 elderly men after death. 610 of these men had high blood pressure or were A recent study shows that brain changes found in adults being treated for high blood pressure. Among the 350 with gene variants linked to Alzheimer's disease can also who had been treated, 15% had received beta blockers be seen in MRI brain scans done on new born babies. alone, 18% had been given beta blockers plus another Researchers from the University of North Carolina (UNC) high blood pressure medication and the rest had received School of Medicine gave MRI scans to 272 babies shortly other drugs. after birth. Each infant’s DNA was screened for common The study found that all the treatments were better at variations in genes associated with disorders like protecting the brain than no treatment. More Alzheimer's disease, schizophrenia and bipolar disorder. importantly, the men who had taken only beta blockers When these brain changes were compared to those from had significantly fewer brain abnormalities than the rest. adults with the same afflictions, the researchers found Those who had taken beta blockers and another drug also many similarities. showed less abnormalities. In addition, all men who had Dr. Rebecca Knickmeyer, study author and Assistant taken any beta blockers had significantly less brain Professor of Psychiatry at UNC, said: "These results shrinkage than the others. suggest that prenatal brain development may be a very Dr. White said: “These results are exciting, especially since important influence on psychiatric risk later in life. This beta blockers are a common treatment for high blood could stimulate an exciting new line of research focused pressure.” on preventing onset of illness through very early intervention in at-risk individuals." The results of this study will be presented at the American Academy of Neurology's annual meeting in March 2013. http://cercor.oxfordjournals.org/content/early/2013/01/02/cercor.bhs401.a bstract?sid=b7395aa3-8956-42bb-a10b-41a2782f108c www.abstracts2view.com/aan/view.php?nu=AAN13L_S44.005&terms= 2 January: Memantine is ineffective in FTD trial 11 January: Bilingual people maintain cognitive A clinical trial of Memantine to treat frontotemporal lobar function in old age degeneration (FTD) has not shown any benefits. Researchers from the University of Kentucky (UK) College The trial, sponsored by the University of California (San of Medicine in Lexington have shown that bilingual people Francisco) and Forest Laboratories, involved 81 maintain more cognitive control abilities as they age. The participants who received memantine or placebo over 26 study team, led by Dr. Brian Gold, Associate Professor of weeks. The treatment had no effect on either NPI or CGIC Anatomy and Neurobiology at UK, performed two tests on measurements. 110 monolingual and bilingual subjects.

www.thelancet.com/journals/laneur/article/PIIS1474-4422(12)70320- The first was an attention-switching task that required 4/fulltext#article_upsell quick sorting of colours and shapes: the bilingual subjects 2 January: TFP5 reverses memory loss in mouse were significantly better than the monolinguals. The subjects then repeated the task while undergoing MRI models scans. Results showed that the brains of the monolingual A new study shows that injections of the TFP5 molecule people were working harder to complete the task, while reversed dementia symptoms and improved memory in the bilingual brains were much more efficient, similar to Alzheimer mouse models. The research team was led by those of young adults. Dr. Harish C. Pant, Senior Investigator at the National For Dr. Gold, these results suggest that lifelong Institute of Neurological Disorders in Bethesda, Maryland. bilingualism offsets age-related declines in the neural Researchers gave injections of TFP5 to a group of mice efficiency for cognitive control processes. and saline injections to the controls. The TFP5 mice

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www.jneurosci.org/content/33/2/387.abstract?sid=bf4fdaf5-8e74-45ce-a8f3- The scientists were led by Dr. Serge Rivest, Professor at a8b52f6cb31d Université Laval's Faculty of Medicine. They gave weekly 14 January: Souvenaid food supplement launches injections of MPL to Alzheimer mouse models over a in UK twelve-week period. This caused an 80% decline of senile plaque and significant improvements in learning and A new food supplement called Souvenaid has been cognitive function. launched in the UK. It is designed to support synapse formation and function in early Alzheimer’s disease. Dr. Rivest sees two potential uses for MPL. It could be administered by intramuscular injection to slow the Souvenaid is marketed in the form of a milkshake and progression of the illness, or incorporated into a vaccine contains a combination of nutritional precursors against amyloid beta. He said: "The vaccine could be given (docosahexaenoic acid, eicosapentaenoic acid, uridine to people who already have the disease to stimulate their monophosphate and choline) and cofactors natural immunity. It could also be administered as a (phospholipids, folic acid, vitamins B, C and E and preventive measure to people with risk factors for selenium). Alzheimer's disease." A clinical trial has shown that the supplement showed www.pnas.org/content/early/2013/01/15/1215165110.abstract?sid=8dab73c some benefit for memory in people with mild Alzheimer’s 9-f54d-4d70-8c8a-1beccb081ff1 disease who were not taking any other medicine. 22 January: Hearing loss is a factor in cognitive Souvenaid is produced by Nutricia, the medical food decline division of Danone Research. A study from Johns Hopkins University shows that older www.ncbi.nlm.nih.gov/pubmed/22766770 adults with hearing impairments are more likely to suffer early memory and thinking problems than those without hearing loss. The study, led by Dr. Frank Lin, lead author and Assistant Professor at Johns Hopkins, concluded that cognitive

problems developed 30-40% faster when hearing declined www.alzheimer-europe.org/Donation to 25 decibels, the threshold of mild hearing loss. 14 January: EMA approves Memantine Merz and The researchers followed 1,984 adults ages 75-84 from Maruxa generics 2001 to 2007, all of whom had normal brain function and hearing when the study began. The participants The European Medicines Agency (EMA) has approved the underwent various cognitive tests and hearing tests at drugs Memantine Merz and Baruxa for the treatment of regular intervals. The people who developed hearing moderate to severe Alzheimer’s disease. Both drugs are impairments took 7.7 years to show mental decline, generic versions of Merz’s Axura and Lundbeck’s Ebixa. compared to 10.9 years for those with healthy hearing. Memantine works by blocking special types of receptor Dr. Lin said: "Our findings show how important it is for called NMDA receptors, to which the neurotransmitter physicians to discuss hearing with their patients and be glutamate normally attaches. Neurotransmitters are proactive in addressing hearing declines. Hearing loss chemicals in the nervous system that allow nerve cells to doesn't directly contribute to dementia, but leads to communicate with one another. cognitive load on the brain." Changes in the way glutamate transmits signals within the http://archinte.jamanetwork.com/article.aspx?articleid=1558452#qundefine d brain have been linked to the memory loss seen in Alzheimer’s disease. 25 January: CRF hormone protects the brain from In addition, overstimulation of the NMDA receptors can memory loss result in cell damage or death. By blocking NMDA A study from the University of Nottingham (UN) shows receptors, memantine improves the transmission of that a stress hormone called CRF produced during signals in the brain and reduces the symptoms of moderate exercise protects the brain from memory loss. Alzheimer’s disease. Dr. Marie-Christine Pardon, Senior Fellow at UN’s School http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/m edicines/002711/human_med_001599.jsp&mid=WC0b01ac058001d124 of Biomedical Sciences, led a team to establish the role of http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/m the stress hormone CRF (corticotrophin-releasing factor) edicines/002658/smops/Positive/human_smop_000472.jsp&mid=WC0b01ac in the onset of Alzheimer's disease. 058001d127 CRF acts as a neurotransmitter, i.e. it sends signals from 16 January: MPL molecule clears plaque in mouse one neuron to another. It’s important in memory models formation and retention; people with Alzheimer's disease A team of researchers from Quebec’s Université Laval and are known to have insufficient levels of it. GlaxoSmithKline (GSK) has discovered that the MPL The researchers blocked CRF in Alzheimer mice and found molecule can stimulate the brain's natural defence that the mice had reduced anxiety, but increased reaction mechanisms in people with Alzheimer's disease. MPL when confronted by a stressful situation - in this case (monophosphoryl lipid A) has been used by GSK as a being placed in a new environment. This was due to the vaccine component for many years. abnormal functioning of the brain receptor CRFR1, which

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is normally activated by CRF. This explains why people Caregivers who regularly used "positive" coping strategies susceptible to stress are more at risk of developing - including problem-focused coping, seeking greater social Alzheimer’s. support, counting blessings - were able to slow cognitive decline. Conversely, "negative" strategies (e.g. avoidance The scientists also found that interrupting the hormone or wishful thinking) resulted in a faster decline of from binding on to the CRFR1 receptor blocked the cognitive and functional measures. improvement of memory normally promoted by exercise. However, a regular exercise routine restored the normal Dr. JoAnn Tschanz, Assistant Professor of function of the CRF system. Neuropsychologist at USU, is the lead author of the Cache County Dementia Progression Study. The study, which These results are in line with the idea regular exercise is a also involved researchers from Johns Hopkins University, means of improving one’s ability to deal with everyday assessed 226 people with dementia and their caregivers stress in addition to keeping sharp mental abilities. semi-annually for up to six years. Dr. Pardon said: “This is the first time researchers have Dr. Tschanz said: "Except for psychiatric symptoms, few been able to identify a brain process directly responsible studies have examined how caregiver characteristics for the beneficial effects of exercise in slowing down the affect the rate of dementia progression, and our findings progression of the early memory decline characteristics of indicate significant associations between caregiver coping Alzheimer’s disease. strategies and the rate of cognitive and functional decline “Overall, this research provides further evidence a healthy in dementia. Greater use of problem-focused coping may lifestyle involving exercise slows down the risk of be mutually beneficial for both patients and caregivers.” Alzheimer’s disease and opens avenues for the new www.ajgponline.org/article/PIIS1064748112000097/abstract interventions targeting the altered CRFR1 function associated with the early stages of the disease.” New Publications & Resources www.j-alz.com/issues/34/vol34-3.html 10 January: MHE presents results of guardianship Dementia in Society survey 7 January: Austrian study targets drivers with On 10 January, Mental Health Europe (MHE) released the results of a 2012 dementia survey to determine the status of A recent study shows that most drivers with dementia guardianship and related decision- give up driving at the behest of their caregivers – not making policies in 27 EU countries. because of accidents or revoked licenses. The results show that 25 member states implement The study was led by Dr. Stephan Seiler, Researcher at the plenary substitute decision-making, which is contrary to Department of Neurology of Graz Medical University the United Nations Convention for the Rights of Persons (Austria), who sought to find which factors were with Disabilities (UN CRPD). This type of guardianship considered when dementia patients stopped driving. effectively denies people with mental health problems input in such basic decisions like choosing a place to live, The results come from a survey of 240 people with refusing medical treatment or signing contracts, on the dementia who were former or current car drivers. They sole basis of their disability. show that around 40% of people with mild to moderate dementia are still driving. Among people who had MHE believes that governments should develop stopped driving, 136 (98%) said they stopped because of legislation that abolishes existing guardianship regimes unacceptable risk, as judged by their caregivers. Car and policies and replaces them with supported decision- accidents and revocation of the driving license were cited making. This would respect a person’s autonomy, by only 9 people. preferences and wishes. Governments should also review any law that would allow for the deprivation of liberty on The decision by caregivers to have people stop driving the basis of disability and should abolish involuntary may have been made based on symptoms: in this study, confinement linked to mental health problems. people with more severe symptoms were more likely to have stopped driving. Also, people whose caregiver had a Links to the full press release and the survey report are higher level of burden were more likely to have stopped shown below. driving. www.mhe-sme.org/news-and-events/mhe-pressreleases/stripped_of_dignity.html The authors conclude that caregivers' risk judgments - and http://issuu.com/silvanamhe/docs/mapping_exclusion not accidents or license issues - were the reason most people with dementia stopped driving. 29 January: UK Alzheimer’s Society offers new resources www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0052710 The UK Alzheimer’s Society 9 January: Problem-focused coping helps to slow has released a new training dementia DVD for homecare workers. A new study from Utah State University (USU) shows that The DVD features people the decline of brain function in Alzheimer's disease can be with dementia, their family members and those who care slowed by changing the environment of the diagnosed for them. The training package is presented in four person. modules that cover the experience of dementia,

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communication and behaviour, person-centred approaches and wellbeing and relationships. It also Job opportunities includes facilitator notes, learner notes and exercises. The 30 January: The Commission is hiring post- DVD is available via email to [email protected] doctorate researchers The Society also launched a new tool called the “Handy The Joint Research Centre (JRC) of the European Guide to Selecting a Care Home”. This is designed as an Commission has launched a selection procedure for fixed independent aid for people when choosing care homes. It term positions to set up a database of over 3,000 suggests some issues to think about and questions that successful candidates with a research background. They may be useful to ask staff when visiting potential care will be placed on a reserve list and called for interview homes. according to the needs of the services. The selection is aimed at researchers in the following areas:

• Natural sciences • Quantitative sciences • Human and social sciences • Agricultural, environmental and earth sciences • Health sciences

Most of the posts available will be for the JRC Institutes in www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1597 Germany, Belgium, Italy, Spain and the Netherlands. Some positions will also be offered in Brussels for other 25 January: JPND publishes first newsletter Commission Directorates-General. The EU Joint Programme - More information can be found on the EPSO website, Neurodegenerative Disease which will also handle registrations until 1 March 2013. Research (JPND) has launched its first newsletter. http://europa.eu/epso/apply/jobs/cast/2013/cast_jrc/index_en.htm http://ec.europa.eu/dgs/jrc/index.cfm?id=7000&lang=en The newsletter will be produced every six months and provides a synopsis of JPND news stories for the international Contact Alzheimer Europe at: neurodegenerative disease research community. Content Alzheimer Europe, 145 route de Thionville, L-2611, Luxembourg will include updates on JPND activities, featured research [email protected], www.alzheimer-europe.org from JPND-funded projects as well as interviews with Alzheimer Europe Board JPND Scientific Advisory Board and stakeholder Chairperson: Heike von Lützau-Hohlbein (Germany); Vice-Chairperson: Iva Holmerová (Czech Republic); Honorary Secretary: Charles Scerri (Malta); representatives. Honorary Treasurer: Maria do Rósario Zincke dos Reis (Portugal); Members: Patrick Maugard (France), Maurice O’Connell (Ireland), Sirpa Pietikäinen JPND is the largest global research initiative aimed at (Finland), Helga Rohra (Germany), Alicja Sadowska (Poland), Henry Simmons tackling the challenge of neurodegenerative diseases. (UK - Scotland). JPND aims to increase coordinated investment between Alzheimer Europe Staff participating countries in research aimed at finding Executive Director: Jean Georges; EU Public Affairs Officer: Annette Dumas; Administrative Assistant: Kate Ellis; Editor – Dementia in Europe Magazine: causes, developing cures, and identifying appropriate Julie Fraser; Information Officer: Dianne Gove; Conference and Event ways to care for those with neurodegenerative diseases. Coordinator: Gwladys Guillory; Communications Officer: Alex Teligadas; Administrative Assistant: Grazia Tomasini. The newsletter is available on the JPND website. http://neurodegenerationresearch.eu/fileadmin/Newsletter/JPND_Newslette r_-_January_2013_edition_01.pdf

AE Calendar 2013

Date Meeting AE Representative 12 February Meeting with Nutricia (Luxembourg, Luxembourg) Jean 18-19 February EFNA’s workshop on the ‘European Month of the Brain’ (Brussels, Belgium) Annette Board meeting, Company round table and Dementia Monitor meeting, Lunch debate on “Clinical AE Board, members and 25-27 February trials on AD” and EU Public Affairs meeting (Brussels, Belgium) staff 28 February Presentation at the Romanian Alzheimer Society annual conference (Bucharest, Romania) Annette 28 February-1 March Launch of European Medical Information Framework Programme (Brussels, Belgium) Jean 28 March ALCOVE Final Symposium (Paris, France) Heike, members and staff 12 April EWGPWD meeting (Brussels, Belgium) Helga, AE staff

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Future Conferences

Date Meeting Place 19-20 February 2013 Workshop for “European Month of the Brain”, European Federation of Neurological Brussels, Belgium Associations (EFNA), http://efna.net/emobworkshop/ 27 February-2 March 2013 National Alzheimer Conference, www.alzcongres.ro Bucharest, Romania 6-10 March 2013 11th International Conference on Alzheimer’s and Parkinson’s Diseases, www.kenes.com/adpd Florence, Italy 21-22 March 2013 SDCRN's 3rd Annual Dementia Research Conference: “Nations and Generations”, Stirling, Scotland http://www.sdcrn.org.uk/resources/conference-2013 21-23 March 2013 57. Jahrestagung der Deutschen Gesellschaft für Klinische Neurophysiologie und Funktionelle Leipzig, Germany Bildgebung (DGKN), www.dgkn-kongress.de 28 March 2013 ALCOVE Final Symposium, www.alcove- Paris, France project.eu/index.php?option=com_content&view=article&id=46&Itemid=184 11-14 April 2013 The 7th World Congress on Controversies in Neurology (CONy), Istanbul, Turkey www.comtecmed.com/cony/2013/ 18-20 April 2013 28th International Conference of Alzheimer's Disease International: Dementia: Action for global Taipei, Taiwan change, www.adi2013.org 18-21 April 2013 9th International Congress on Mental Dysfunction & Other Non-Motor Features in Parkinson’s Seoul, Korea Disease and Related Disorders – MDPD 2013, www.kenes.com/mdpd2013 4-12 May 2013 Neural Stem Cells in Development and for Brain Repair, www.nsas.it/neural-stem-cells-for- Cortona, Italy development-and-repair 23-24 May 2013 3rd International Conference on Neurodegenerative Disorders: Immunotherapy and Biomarkers, Uppsala, Sweden http://eventus.trippus.se/immunotherapy_uppsala2013 5-6 June 2013 Pioneers in healthcare [email protected] Brussels, Belgium 8-11 June 2013 23rd ENS 2013 meeting, www.congrex.com Barcelona, Spain 23-27 June 2013 The 20th IAGG Congress of gerontology and geriatrics, www.iagg2013.org Seoul, Korea 21-26 September 2013 XXI World Congress of Neurology, www.oegnt.at Vienna, Austria 5-9 October 2013 26th ECNP (European College of Neuropsychopharmacology), www.ecnp-congress.eu Barcelona, Spain 10-12 October 2013 23rd Alzheimer Europe Conference: “Living well in a dementia-friendly society”, www.alzheimer- St. Julian’s, Malta europe.org/EN/Conferences 17-20 October 2013 8th International Congress on Vascular Dementia – ICVD 2013, www.kenes.com/icvd Athens, Greece 11-14 December 2013 The 16th Asia Pacific regional Conference of Alzheimer’s disease international, www.aprc2013- Hong Kong & Macau hongkong-macau.com 20-23 March 2014 58. Jahrestagung der Deutschen Gesellschaft für Klinische Neurophysiologie und Funktionelle Berlin, Germany Bildgebung (DGKN), www.dgkn-kongress.de 21-24 March 2014 30th International Congress of Clinical Neurophysiology (ICCN), www.iccn2014.de Berlin, Germany 26-29 March 2014 13th Int. Geneva/Springfield Symposium on Advances in Alzheimer Therapy, www.ad- Geneva, Switzerland springfield.com 5-9 July 2014 9th FENS Forum of Neuroscience, http://forum.fens.org/2014 Milan. Italy

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The Alzheimer Europe newsletter arises from the 2013 Work Plan of Alzheimer Europe, which has received funding from the European Union in the framework of the Health Programme.

Page 13 of 13

NEWSLETTER February 2013

dementia drugs are at last eligible Highlights in this issue Editorial for reimbursement. Finland is celebrating 25 years of operation 26 February: AE holds lunch 2 We hope that you were this year and Ireland has debate at the European appointed a new CEO who will Parliament pleasantly surprised by our take office in May. Luxembourg 26 February: AE launches 3 new email won gold for a video clip about European Dementia Monitor design! It intends living with dementia and Portugal February: Two MEPs join the 4 to provide easier is pursuing an art therapy European Alzheimer’s Alliance access to your programme. In Italy, Alzheimer 27 February: MEP Grossetête 5 favourite newsletter, so we are Uniti will research the effects of a wins EURORDIS award eager to hear your comments. multi-sensory room and Slovenia continues its successful series of 1 February: Finnish Alzheimer 9 In February, Alzheimer Europe Alzheimer Cafés. Society turns 25 held a lunch debate at the 1 February: Gerry Martin, new 9 European Parliament and a Public In scientific news, two clinical trials CEO of the Alzheimer Society Affairs meeting with our member have been announced: one will of Ireland associations. The lunch debate was investigate whether inflammation very well attended and we were speeds up the progress of

very glad to see seven MEPs Alzheimer's disease and the other will test masitinib, an existing present or represented. In the

Public Affairs meeting, we cancer drug.

discussed the 2013 Dementia in Several new publications appeared Europe Yearbook: our member in February, including a book on associations will help us to collect dementia released by the Maltese information on national policies Ministry of Health. Helga Rohra, relating to care and support of Chair of the European Working people with dementia. We also Group of People with Dementia,

launched our European Dementia released a book in Romania and Monitor, which will provide a the UK Alzheimer’s Society benchmark of national policies. published a report on life in care

There again our members will homes. The latest issue of provide invaluable support, along Dementia in Europe magazine also with our pharmaceutical partners. appeared in February. The Table of contents The European Alzheimer's Alliance magazine, which is available for sale on the Alzheimer Europe Editorial ...... 1 (EAA) grew by two members in February: we welcome Arlene website, features Italian MEP Alzheimer Europe ...... 2 McCarthy and Rosa Estaràs Roberta Angelilli speaking about how the EU addresses dementia. It European Alzheimer’s Alliance ...... 4 Ferragut and look forward to seeing them at our next lunch also investigates the health AE Networking 2013 ...... 5 debate in June. priorities of the Cypriot EU Presidency and the imminent EU Developments ...... 6 Meanwhile, the Parliament launch of the Irish National Members’ News ...... 8 adopted a resolution on active and Dementia Strategy. Finally, the healthy ageing which views ageing magazine looks back at our Annual Science Watch ...... 11 as an opportunity for the future. Conference in Vienna last year. Dementia in Society ...... 14 The Commission presented its progress in improving long-term We are now accepting New Publications & Resources...... 14 care, including helping countries to registrations for the 2013 Conference in Malta. You can Job opportunities ...... 15 develop strategies for independent living for older adults. register and submit abstracts via AE Calendar 2013 ...... 16 our website. Our member associations are Future Conferences ...... 16 always sources of varied and Jean Georges interesting news, and February Executive Director was no exception. The best news of all came from Bulgaria, where

Page 1 of 17 Newsletter: February 2013

consider the heterogeneity of older people, the Lesbian, Alzheimer Europe Gay, Bisexual and Transgender (LGBT) community and people from minority ethnic groups. 1 February: AE participates in European Patient’s Forum consultation Finally, Alzheimer Europe included some references to the organisation’s work in the field of ethics, advance In February, Alzheimer Europe directives and assistive technologies and some references participated in the European to the recent developments of the European Innovation Patient’s Forum (EPF) Partnership on Active and Healthy Ageing. consultation with its members to develop a formal position 25 February: Alzheimer Europe holds Board statement on the rights and needs of older patients. meeting in Brussels EPF’s paper aims to develop a comprehensive perspective The Alzheimer Europe Board met on 25-26 February in on the needs and rights of older people. EPF and its Brussels. The Board members discussed various financial members will also identify recommendations towards the and operational matters, including: EU institutions and Member States on how to better • adoption of the 2012 financial accounts of the cooperate and work towards achieving the changes that organisation. are needed to meet the needs of older patients and uphold their rights across Europe. • approval of the final report of the operating grant received by the EU health programme. The paper focuses on five priorities that have been • approval of a memorandum of understanding for the identified by EPF and its members: collaboration with Alzheimer’s Disease International. 1. integrated care • discussion on the progress of various 2013 activities, such as the project on the ethical issues linked to 2. an inclusive and holistic approach to health perceptions and image of dementia, the 2013 and social care Yearbook on dementia policies in the care and social 3. shared-decision making and empowerment for sector, the European Working Group of People with older people and their carers Dementia, the project on good incontinence care and the Dementia Monitor. 4. equitable access to high quality and safe therapies for all older patients The next meeting of the Board will take place on 17 and 18 June 2013. 5. making the meaningful involvement of older patients a reality. 26 February: Alzheimer Europe holds lunch debate at the European Parliament Members were invited to answer questions relative to each topic and complete EPF’s proposals. On 26 February, Alzheimer Europe held a lunch debate at the European Parliament entitled “Clinical trials on Alzheimer Europe agreed with these five priorities, but Alzheimer’s disease: update on recent trial results and the stressed that early diagnosis also merits specific attention. new regulatory framework”. The debate was hosted by The organisation also mentioned the following items: MEP Sirpa Pietikäinen (Finland), who is a member of the • promoting older peoples' right to autonomy, European Alzheimer’s Alliance (EAA) and also sits on the including the right to choose one’s place of residence Alzheimer Europe Board. Sirpa welcomed the participants and care and the provision of adequate and varied and introduced the two speakers. healthcare options which are adapted to older people The first speaker was Professor Alexander Kurz, Professor with specific medical conditions. of Psychiatry at Munich’s Technische Universität. He gave • offering community-based healthcare to older a presentation on the evolution of Alzheimer’s disease people, i.e. care in their own homes or in (AD) in the brain, including the latest therapies available establishments which are an integral part of the and results of various clinical trials. community. Currently, the development of new AD medications • developing quality principles on what a quality service focuses on the amyloid beta (Aβ) plaques that accumulate should be. in the brain. Various approaches are being explored and • promoting shared decision making and patients' the removal of Aβ using immunisation strategies is the rights to access information about their health status most advanced. Even so, by the time treatment starts the and any other information necessary to contribute disease has already progressed beyond the scope of any towards making an informed decision. These will strategy. Prof Kurz noted that if we are able to intervene protect them from abuse in decisions about at the prodromal stage - a decade earlier than today - guardianship, mental capacity, informed consent and then we may be able to prevent damage caused by patients’ rights. amyloid deposits. He also presented other research • including older people in clinical trials, while avenues that do not focus on amyloid deposits. These highlighting the ethical issues linked to the include approaches that block the aggregation of tau involvement of people with dementia in clinical trials. proteins and efforts to boost nerve growth and repair. It may be that some of these will be successful for the In addition, the organisation pointed out that end-of-life development of new treatments. care and the use of assistive technologies were missing from the paper. The organisation also invited EPF to

Page 2 of 17 Newsletter: February 2013

Prof Kurz was followed by Mr Fabio D'Atri, an expert from The launch meeting was attended by 28 people and the European Commission’s DG Health and Consumers. included representatives from national Alzheimer Mr D'Atri presented the Commission’s proposal for a new associations and pharmaceutical companies. The “Regulation on Clinical Trials on medicinal products for delegates agreed to provide existing information that will human use”. He explained the proposed changes and be compiled and developed by Alzheimer Europe. The highlighted the key provisions on the involvement of final report will be presented at the European Parliament incapacitated adults and people with dementia in clinical by the end of 2013. trials.

There were more than 40 participants at the debate. The following Members of the European Parliament were present or represented by their assistants:

• Françoise Grossetête, MEP (France) - also EAA Chairperson. www.alzheimer-europe.org/Donation • Margrete Auken, MEP (Denmark) - also Shadow Rapporteur for the revision of the Clinical Trials Directive in the ENVI Committee. 27 February: Alzheimer Europe holds Public Affairs • Christian Ehler, MEP (Germany). meeting • Anneli Jäätteenmäki, MEP (Finland) - also EAA Alzheimer Europe and eight of its member associations member. held a Public Affairs meeting on 27 February. The aim of • Angelika Werthmann, MEP (Austria) - also EAA the meeting was to discuss AE's 2013 Dementia in Europe member. Yearbook project. This year's topic will be national policies • Dan Dumitru Zamfirescu, MEP (Romania). relating to care and social support of people with dementia. Other participants included representatives from 14 national Alzheimer associations and eight pharmaceutical The yearbook will cover training of social and health care companies. professionals in residential and home care. It will also cover the organisation and quality of care and support, 26 February: Alzheimer Europe launches European such as staffing levels, standards of care, needs Dementia Monitor assessments and access to care and support. Another section will examine the provision and organisation of On 26 February, Alzheimer Europe held a meeting to care and support. Finally, the yearbook will address carer launch discussions about the European Dementia support, such as for respite, training and consultation. Monitor. This monitor will be a benchmark of national dementia policies and will compare three key areas: The yearbook will also include the latest dementia prevalence figures in the EU counties and Iceland, Jersey, • Medical/scientific issues: prevalence, diagnosis, Norway, Switzerland and Turkey. There will also be a treatment. directory of national Alzheimer's associations, including • Care and social issues: social support, Alzheimer number of staff, budgets and types of services provided. associations, care. The 2013 Dementia in Europe Yearbook will be published • Policy and legal issues: dementia strategies and in December 2013. research, guardianship.

The European Dementia Monitor aims to highlight the strengths and weaknesses of access to care and treatment between countries. It will also allow national associations to compare their own country to others.

Impressions from the Lunch Debate

Heike von Lützau-Hohlbein (Alzheimer Europe) with Prof Alexander Kurz, Technische Universität München Fabio D'Atri, European Commission Sirpa Pietikäinen , MEP (Finland)

Page 3 of 17 Newsletter: February 2013

Dr. Elisabeth Calov (Merz) and Ersi Grammatikou Sabine Henry (Belgium) with Carolyn Bodnar (GE Julie Fraser (Alzheimer Europe) (Greece) Healthcare)

Jean Georges (Alzheimer Europe), Anne Arndal Angelika Werthmann, MEP (Austria) Laurène Souchet (EPF) and Eila Okkonen (Finland) (Denmark) and Margrete Auken, MEP (Denmark)

innovation – is one of the few areas where EU funding European Alzheimer’s Alliance should be increased. The article is reproduced here and can also be seen online (see link below). Marina is a February: Two MEPs join the European Conservative Party MEP for London and sits on the Alzheimer’s Alliance (EAA) European Parliament's Environment and Public Health Committee. The European Alzheimer's Alliance is pleased to welcome two new members: Ms Rosa Estaràs Ferragut, MEP (Spain) The elusive cure for Alzheimer's and battling dementia and Ms Arlene McCarthy, MEP (UK). I am pleased to have been named the new Rosa Estaràs Ferragut is from Palma de vice-chairwoman of the European Mallorca and a member of EPP, the Alzheimer's Alliance this month, taking Group of the European People's Party. over from Belgian MEP Frieda Brepoels - She sits on the Committee on Regional who has stood down from the European Development and is a substitute on the Parliament to become Mayor of Bilzen. As Committees on Transport and Tourism a member of the European Parliament's Environment and and Women's Rights and Gender Public Health Committee, who follows the European Equality. She joined the EAA on 8 February. health portfolio for the Conservative Party, I been monitoring the issue of dementia - including Alzheimer's - Arlene McCarthy hails from Belfast, for some time. Northern Ireland and joined the EAA on 21 February. She is affiliated with S&D, We have long supported the activities of the European the Group of the Progressive Alliance of Alzheimer's Alliance and we commend its work on Socialists and Democrats in the exchanging best practice between European Union European Parliament. Ms McCarthy, an member states in the care of Alzheimer sufferers as well MEP since 1994, is the Vice-Chair of the co-ordinating transnational projects on the disease. While Committee on Economic and Monetary Affairs. She also Alzheimer's is a disease and not a natural part of ageing, sits on the Delegation for relations with Switzerland and dementia is still growing more prevalent as our Norway and on the EU-Iceland Joint Parliamentary population ages. Dementia not only affects those who are Committee and the European Economic Area (EEA) Joint suffering from the disease but also their family and Parliamentary Committee. friends, many of whom devote their lives to caring for their loved ones. 4 February: EAA Vice-Chair Yannakoudakis emphasises the need for research funding Member states need to work together on tackling and treating Alzheimer's while respecting the sovereignty of Marina Yannakoudakis, national health policies. Research is one area where MEP (UK) and new Vice pooling resources has value-added and I am pleased that Chairperson of the the European Commission's seventh framework European Alzheimer's programme has made more than €600m available to Alliance (EAA), recently published an article on the Public study neurodegenerative diseases, including Alzheimer's. Service Europe website. She explains that research We need a multifaceted approach to address the funding – be it in the field of medical or technological challenge. This means looking at the four themes of

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prevention, diagnosis, treatment and cure. One of the multinational approach and the European Alzheimer's areas which we are looking at in more detail in the United Alliance has an important role to play here. I hope that I Kingdom is early identification of the disease. can do the alliance justice and live up to the expectations of the 10 million Alzheimer sufferers across the EU - as I In my London constituency alone, 68,000 people are take on my new role as vice-chairwoman. suffering from the dementia. And yet, another 40,000 people in the capital do not realise they have the www.publicserviceeurope.com/article/3036/the-elusive-cure-for-alzheimers- and-battling-dementia condition. On average fewer than 50 per cent of cases of www.alzheimer-europe.org/Policy-in-Practice2/European-Alzheimer-s- dementia are diagnosed in Britain and this figure is Alliance woefully low. We must encourage families to be alert for the signs of dementia. A scientist for Alzheimer's Research 27 February: Françoise Grossetête receives UK once described the difference between absent- EURORDIS MEP Award mindedness and the onset of the disease as "not On 27 February, Françoise forgetting where your keys are but forgetting what keys Grossetête, MEP (France) and Chair are for". of the European Alzheimer’s Just because there is currently no cure for Alzheimer's Alliance, received the EURORDIS does not mean we can be complacent about diagnosis. MEP Award. The Awards were Medication can help stave off the condition for several distributed on the occasion of the years and I encourage those who think their loved ones 6th Rare Disease Day. may be at risk to take them to their local doctor and The EURORDIS Awards recognise request a memory test. That way, sufferers can access the excellence and promotes leadership and achievement in support, care and medicine which can help them live well the field of rare diseases. This year, the Awards with the condition. Until we do have a cure, we need to acknowledge the outstanding contributions of patients' increase funding for scientific studies into the disease. advocacy groups, volunteers, scientists, companies, media I have already mentioned European research. Research – and policy makers toward reducing the impact of rare be it in the field of medical or technological innovation – is diseases on people's lives. one of the few areas where I think EU funding should be Ms Grossetête has been a tireless advocate for rare increased. In the UK we have also boosted our dementia diseases in Europe. This Award recognises her work in a funding. British Health Secretary Jeremy Hunt announced series of EU legislations in the field of rare diseases, cross- at the end of last year that the UK government is going to border healthcare and the third EU public health invest £22 m in 21 pioneering dementia research projects. framework programme. The projects cover all areas of scientific activity relevant to dementia including care, cure, cause and prevention. Photo credit: Vivian Hertz Dementia may be the largest healthcare challenge, which http://www.eurordis.org/news-and-events we shall face this century. We need a comprehensive, Alzheimer Europe Networking 2013

On 12 February (Luxembourg, Luxembourg) Jean attended a meeting with Nutricia's Steve Graves. On 18 February (Brussels, Belgium) Annette attended the European Voice Health Check Briefing on Alzheimer’s disease. On 19-20 February (Brussels, Belgium) Annette attended the EFNA workshop on the "European Month of the Brain". On 21 February (Brussels, Belgium): Annette met A. Werthmann (MEP and member of the European Alzheimer’s Alliance) to discuss an EP event on neurodegenerative diseases under the banner of the European Month of the Brain. On 22 February (Rome, Italy) Alex attended the final workshop of the DECIDE project. On 25-27 February (Brussels, Belgium) AE Board, members and staff attended the Board meeting, the Company round table, the Dementia Monitor meeting, the Lunch debate on “Clinical trials on AD” and EU Public Affairs meeting. On 28 February (Brussels, Belgium): Annette met E. Zafeiratou (Vodafone) to exchange information on our respective activities and explore collaboration opportunities. On 28 February-1 March (Brussels, Belgium) Alex attended the launch of the European Medical Information Framework project.

Members of the European Alzheimer’s Alliance

Currently, the total number of MEPs in the Alliance stands at 67, representing 22 Member States of the European Union and all seven political groups in the European Parliament. Alzheimer Europe would like to thank the following MEPs for their continued support of the European Alzheimer’s Alliance:

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Elżbieta (EPP). Portugal: Carvalho Maria da Graça (EPP), Coelho Carlos (EPP), Matias Marisa (GUE/NGL). Romania: Antonescu Elena Oana (EPP), Busoi Cristian (ALDE), Sârbu Daciana Octavia (S&D). Slovakia: Mikolasik Miroslav (EPP), Zaborska Anna (EPP). Slovenia: Peterle Alozj (EPP). Spain: Badia i Cutchet Maria (S&D), Estaràs Ferragut Rosa (EPP). United Kingdom: Ashworth Richard (ECR), Hall Fiona (ALDE), McAvan Linda (S&D), McCarthy Arlene (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Taylor Keith (Greens/EFA), Vaughan Derek (S&D), Watson Graham (ALDE), Willmott Glenis (S&D), Yannakoudakis Marina (ECR).

they might be compelled to reallocate their often limited EU Developments resources or abandon treatment. 6 February: Parliament adopts resolution on the The resolution also stresses the need to achieve equal European Innovation Partnership on Active and opportunities for all European citizens in the field of Healthy Ageing healthcare. On 6 February, the European Parliament adopted Kartika Pillar 3: Active ageing and independent living Liotard's (NL, GUE/NLG) resolution on the European The resolution addresses how to encourage older people Innovation Partnership on Active and Healthy Ageing on to live independently in their own homes for as long as is behalf of the Committee on the Environment, Public viable, stressing that the solution is inter-generationally Health and Food Safety. and comprehensively active neighbourhoods. The This resolution was drafted in response to a resolution considers that the Ambient Assisted Living Joint Communication from the Commission "Taking forward the Programme is an important instrument for the Strategic Implementation Plan of the European Innovation deployment of technical resources to facilitate daily life Partnership on Active and Healthy Ageing" of 29 February and the provision of decent and safe housing in both rural 2012. The European Parliament agreed with the and urban areas. Commission's proposal which views aging as an The resolution concludes with a discussion of issues such opportunity for the future rather than a burden on as age-friendly innovations and services. It also stresses society. the importance of facilitating intergenerational The resolution seeks to reinforce the Commission’s volunteering and the need to establish support systems proposals under three pillars: for family carers. Pillar 1: Prevention, screening and early diagnosis http://www.europarl.europa.eu/sides/getDoc.do?type=TA&reference=P7- TA-2013-0046&language=EN&ring=A7-2013-0029 The resolution invites the Commission and Member States 20 February: Commission presents Working to tackle structural issues, including health illiteracy. It states that serious efforts are needed with regard to Document on long-term care prevention and the promotion of a healthy lifestyle, to On 20 February, the European Commission (DG Social delay or reverse the progression of disease in the early Affairs and Employment) presented its Staff Working stages. While supporting the Commission's approach with Document on "Long-term care in ageing societies - regard to health promotion through integrated Challenges and policy options". This paper accompanies programmes, the resolution emphasises the need to the Commission’s Communication "Towards Social investigate if illnesses are linked to individual behaviour or Investment for Growth and Cohesion", which was environmental conditions. presented on the same day. The resolution also supports the Commission's approach The paper demonstrates that even late in life there are in regard to increasing physical activity levels of the strong arguments for a social investment approach to population. Industry and business are asked to get social protection. The arguments presented focus on the involved in this area. economic and social returns that a strategy of social Pillar 2: Care and cure investment can achieve through a combination of reduced disability in old age, improved capacity of older people to The resolution supports the Commission's objective to manage functional limitations and higher productivity in further develop integrated care and cure systems. care delivery. Member States and competent authorities are invited to develop national, regional and local care and cure systems This paper examines how long-term care (LTC) needs may that incorporate a holistic and integrated approach to the develop given the trends in demography and health. It management of age-related diseases. also describes the diversity of LTC provision across the EU and discusses the strengths and limits of present LTC The resolution adds that the costs of such an approach approaches both from a social protection perspective and should not be met solely by the individual but should be in view of future challenges. It then analyses policies and considered as a societal responsibility, guaranteeing inter- gives examples of good practices that could help Member and intra-generational solidarity. eHealth services and States meet the challenges and provide better protection their impact on the costs of healthcare are also discussed. against LTC risks. The resolution acknowledges that the continuous increase The paper highlights the need for a longer-term strategy in overall healthcare and social support costs cannot be of social investment combining policies of 1) prevention, attributed to an ageing population alone. Where the health promotion and rehabilitation with 2) systematic burden of healthcare costs is increasingly borne by the productivity drives in care delivery and 3) measures that individual, this being likely to create a vicious circle raise the capacity of frail older people to manage self-care whereby people's health and wellbeing are put at risk as and independent living.

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The paper also mentions a new JRC-IPTS project for 2013- homelessness in the European Union and possible 14 that aims to support the Commission in helping strategies to consider. Member States to develop LTC strategies promoting • a Staff Working Document on Investing in Health, independent living of older adults through technology- containing strategies to improve the efficiency and based solutions, better organise the provision of care or effectiveness of health systems in a context of tighter increase the productivity and quality of LTC delivery. The public healthcare budgets and discussing how health main objective is to produce guidelines for the Member can contribute to increasing human capital and social States to design LTC strategies than can increase the inclusion. capacity of older adults for independent living. • a Staff Working Document outlining how the http://ec.europa.eu/social/main.jsp?catId=89&langId=en&newsId=1807&mo European Social Fund will contribute to implementing reDocuments=yes&tableName=news the Social Investment Package. 20 February: Commission presents The Commission will closely monitor the performance of Communication on social investment individual Member States' social protection systems through the European Semester and formulate, where On 20 February, the European Commission (DG Social necessary, Country Specific Recommendations. Affairs and Employment) presented its "Social Investment Package" in a Communication entitled "Towards Social http://europa.eu/rapid/press-release_IP-13- Investment for Growth and Cohesion". 125_en.htm?locale=en#PR_metaPressRelease_bottom http://ec.europa.eu/social/main.jsp?catId=89&langId=en&newsId=1807&furt The Communication calls on Member States to prioritise herNews=yes social investment and to modernise their welfare states through active inclusion strategies and a more efficient and more effective use of social budgets. It also offers guidance to Member States on how best to use EU financial support - such as the European Social Fund - to implement the outlined objectives. www.alzheimer-europe.org/Donation The Social Investment Package is an integrated policy framework that addresses the social, economic and budgetary divergences between Member States. It aims to respond to the significant challenges Member States 21 February: Parliament will re-distribute seats currently face: high levels of financial distress, increasing after 2014 elections poverty and social exclusion and record levels of On 21 February, the Constitutional Affairs Committee unemployment, especially among young people. These adopted a Report proposing a redistribution of seats in challenges are combined with that of ageing societies and the European Parliament after the elections that will take smaller working age populations, which test the place in May or June 2014. This redistribution was made sustainability and adequacy of national social systems. necessary both by the Lisbon Treaty and Croatia's The Package focuses on ensuring that social protection accession to the EU in July 2013. The proposed solution is systems respond to people's needs at critical moments in three parts: throughout their lives. It also calls for simplified and • no Member State gains seats. better targeted social policies, to provide adequate and • sustainable social protection systems. Finally, it aims to the following all lose one seat: Austria, Belgium, upgrade active inclusion strategies in the Member States. Bulgaria, Croatia, Czech Republic, Greece, Hungary, Ireland, Latvia, Lithuania, Portugal, Romania. The Social Investment Package is accompanied by: • Germany loses three seats. • a Commission Recommendation on "Investing in The European Parliament will vote on this proposal in Children: breaking the cycle of disadvantage" that March. The European Council will then decide the contains an integrated policy framework to improve distribution of seats by unanimous vote. The European children's opportunities. Parliament can approve or reject the Council's decision • a Staff Working Document containing evidence on but it cannot change the content of the proposal. demographic and social trends and the role of social The committee also agreed to submit a new proposal policies in responding to the social, economic and before the end of 2015 to establish a durable and macro-economic challenges in the EU. transparent system for allocating seats among EU • a Staff Working Document following up on the 2008 member states before each European election. This Commission Recommendation on Active Inclusion for should take into account demographic developments and people excluded from the labour market. include the possibility of reserving a number of seats to • the 3rd Biennial Report on Social Services of General members elected on transnational lists. Interest to help public authorities and stakeholders http://www.europarl.europa.eu/news/en/headlines/content/20130214STO0 understand and implement the revised EU rules on 5853/html/Battle-for-seats-which-countries-will-have-to-give-up-MEPs-in- social services. 2014 • a Staff Working Document on Long Term Care, presenting challenges and policy options. • a Staff Working Document on confronting homelessness, explaining the situation of

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27 February: President Barroso launches a Science improving documentation and communication among and Technology Advisory Council healthcare providers and payers. Other positive comments were that the imaging agent could reduce the On 27 February, José Manuel Barroso, European number of people treated for Alzheimer's disease if the Commission President, announced the creation of a disease is confirmed. Also, Amyvid could hasten the Science and Technology Advisory Council. This is an understanding of the disease and finding a cure. Finally, if independent and informal group of science and physicians did not see signs of accumulated amyloid technology experts from academia, business and civil through a scan, they might be able to rule out Alzheimer's society. It covers a broad range of disciplines and unites disease as a reason for cognitive decline. expertise from across the European Research Area. 1 February: Bulgarians will be reimbursed for The creation of the Council is another building block that dementia drugs will support the development of research and innovation, as well as the goal to deliver smart, sustainable and Bulgarians with dementia received inclusive growth in Europe. It will operate alongside the excellent news last month, as the Innovation Union, the European Research Area and government passed legislation that Horizon 2020. makes it possible for dementia drugs to be reimbursed by national insurance. The main aim of the Council is to advise the President on how to create the proper environment for innovation by shaping a European society that embraces science, Members’ News technology and engineering. The Council will advise on 25 January: Clinicians discuss Ireland's national the opportunities and risks stemming from scientific and technological progress and how to communicate these in dementia strategy order to foster an informed societal debate and ensure On 25 January, that Europe does not “miss the boat” and remains a the Alzheimer global leader in cutting-edge technologies. Society of The Council members have been selected by the Ireland (ASI) President in consultation with Prof Anne Glover, the first hosted a forum Chief Scientific Adviser. The Science and Technology for clinicians in Advisory Council held its first meeting in Brussels on 27 order to engage February 2013. them in an open discussion around the forthcoming National Dementia http://europa.eu/rapid/press-release_IP-13-168_en.htm?locale=en Strategy. Policy Watch The "Clinicians Roundtable on the National Dementia Strategy" was attended by 27 specialists in Old Age 31 January: Amyvid faces hurdles in US Psychiatry, Geriatric Medicine, Neurology and Psychology. reimbursement process The principal aim of the event was to gauge the doctors' opinions on the Irish national dementia plan, which will In April 2012, the American FDA launch later this year. Another objective was to explore approved the use of florbetapir how ASI can support the active involvement of clinicians (Amyvid) as a test agent for PET scans in the plan. Finally, the roundtable sought to develop clear in detecting amyloid. However, the messages about the core clinical elements of the new scan is not yet eligible for reimbursement by dementia plan toward other clinical areas. Medicare; it must first pass through a national coverage analysis. A recent panel meeting was part of this process, Discussions were structured around three thematic areas: with panellists expressing doubts about the procedure. Clinical Leadership and Developing a Dementia Register; People with Younger Onset Dementia and Early Diagnosis Specifically, the 12-member panel expressed little support and Memory Clinics/Services. The clinicians were very for the idea that an imaging technology can change health active in proposing suggestions and improvements, both outcomes. Some of the panellists questioned the lack of for the dementia plan and ASI's continuing efforts to data on how a positive scan would enable clinicians to support them. affect outcomes and the course of care. Others were concerned that the benefit of having a positive test result The full report is available from the Alzheimer Society of was outweighed by potential false positives and other Ireland website. issues that come with that knowledge. Dr. Rita Redberg, www.alzheimer.ie Professor of Cardiology and Chairperson of the panel, asked: "What's the value to the patient if a scan 1 February: Gerry Martin is the new CEO of The establishes a diagnosis after the process of cognitive Alzheimer Society of Ireland decline from Alzheimer's disease has started?" On 1 February, Gerry Martin was The panellists heard comments from several invited appointed as the new CEO of The speakers, including Dr. William Thies, Chief Medical and Alzheimer Society of Ireland. He will Scientific Officer of the US Alzheimer's Association. Dr. take office on 1 May. This appointment Thies remarked that a positive diagnosis for Alzheimer's seeks to continue the strong leadership disease could better a patient's care later in life. It would of the organisation under former CEO allow doctors to build a care plan and team, while Maurice O’Connell.

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Gerry Martin joins The Alzheimer Society of Ireland from Muistiliitto wants to build a safer life for people with Permanent TSB where he has held leadership roles for the memory-related diseases by raising awareness about past 15 years, and is currently General Manager safety issues and basic human rights. The society is responsible for the bank’s branch network. Gerry holds an challenging all Finns to TAKE CARE! of themselves and the MSc (Management Practice) from The Smurfit Graduate people around them. We all need each other occasionally School of Business (UCD). and no one should have to survive alone. Speaking of this appointment, Kevin Norton, Chairman of The 25th year of the society will be filled with activities: The Alzheimer Society of Ireland says, “We are very these have already begun and will run up to a climax on pleased to welcome Gerry Martin to the team at what is a World Alzheimer’s Day on 21 September. On 1 February, critical time for those living with dementia. There are Muistiliitto held a forum for policy makers, member currently more than 40,000 people living with dementia in associations and the media in the Parliament of Finland, Ireland, and this figure is set to treble over the next 30 so called Little Parlament. The audience first heard a years. With these challenges in mind, we will be working moving speech from the daughter of the woman who died with the Government and other stakeholders in the of exposure and inspired the TAKE CARE! motto. This was development and implementation of the National followed by presentations from Sirpa Pietikäinen (MEP Dementia Strategy. and Vice Chairperson of Muistiliitto), Merja Mäkisalo- Ropponen (MP and Chairperson) and Eila Okkonen Furthermore, I would like to take this opportunity to (Executive Director). Finally, Anna Mäki-Petäjä-Leinonen thank Maurice O’Connell for his significant contribution to (Senior Lecturer in Family Law) introduced the new The Alzheimer Society of Ireland over the last 14 years. Alzheimer Europe report about ethical issues linked to During this time Maurice led the organisation through a restrictions of freedom of people with dementia. period of substantial growth and development. In addition to providing over 1 million hours of service, the Muistiliitto can be reached by email to Executive Director Society is the recognised voice of people with dementia,” Eila Okkonen at [email protected] or Specialist says Norton. Heidi Härmä at [email protected] 1 February: Researchers seek information on www.muistiliitto.fi tablet computer apps for people with dementia 2 February: Norwegian Health Association holds The German Alzheimer Society and seminars for caregivers the Charité dementia care home in In early February, the Norwegian Berlin are conducting a study to Health Association arranged a determine which tablet computer one day seminar where family applications (apps) are the most appropriate for care carers shared their experiences home residents. of dementia with others. The aim Tablet computers are increasingly popular in dementia of the seminar was to allow carers to share their care homes, as they are portable, light and easy to use. knowledge and experience with other people who may be The Charité researchers are looking for apps that are used in the same situation. Participants were encouraged to by people with dementia. They are particularly interested share their stories and were also advised on presentation in how the apps are used and how the residents are techniques, how to relate to media and how to help reacting to them. further educate and inform family members and caregivers. To participate in this study, please send an email to [email protected] http://medsoz.charite.de/forschung/demographie_und_alter/tablet_gestuet The feedback from the participants showed that this was zte_aktivierung_von_demenzpatienten_im_pflegeheim/ an informative and inspiring day that gave motivation to be open about dementia. All the lectures were filmed and will be available on the association’s website for those who were unable to attend. This training event also served to support the family carers that participate as lecturers at one of Norway’s 250 www.alzheimer-europe.org/Donation municipal schools for family carers. These schools are part of the government’s educational programme for 1 February: Muistiliitto turns 25 and urges Finns to caregivers, aiming to give them knowledge about TAKE CARE! dementia and creating meeting points for others in the same situation. More than 75% of all Norwegian In 2013, the Alzheimer municipalities offer a 12 hour educational programme for Society of Finland family caregivers. celebrates its 25th birthday with the motto TAKE CARE! The Norwegian Health Association promotes the opportunity for all family caregivers to participate in their The motto stems from a true recent story: a woman with local communities and for greater transparency regarding Alzheimer's disease wandered outside her home and got dementia in our society. lost during a freezing winter day. She walked around for hours, but nobody stopped her and no one asked her if she needed help; she died later the same day in a hospital.

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College of Arts Maria Amalia. The pairs are creating visual art forms based on meaningful moments in their lives. The resulting art works will become permanent fixtures in the centre, promoting expression, creativity and sharing among generations. They will also serve to enhance the physical space of the centre, both 2 February: Alzheimer Uniti Italy will conduct a inside and outside the building. Snoezelen Room study "Spaces of Memory" is an on-going project and can be Alzheimer Uniti Italy will lead a followed on the website below. controlled study to examine the http://projetoespacosdememoria.blogspot.pt/ therapeutic outcome of a new Snoezelen Room in an Alzheimer's 9 February: New AD diagnostic centre opens in care home near Rome. Iceland The Snoezelen Room is a multi- On 9 February, the Icelandic Alzheimer Association (FAAS) sensory room for people with dementia that offers a attended the opening of a new Alzheimer’s disease variety of sensory experiences through sounds, lighting diagnostic centre in Reykjavík. effects, colours, scents and textures. It has been designed The new centre is operated by Mentis Cura, a local to fit both the cognitive status and behaviour needs of the company that has developed software for care home residents. This soothing type of environment is electroencephalography (EEG) statistical pattern known to improve the quality of life of people with recognition. This helps to diagnose and track the progress dementia - even if it does not change the progress of the of early stage Alzheimer’s disease. FAAS is both a partner disease. and a shareholder of Mentis Cura, which is also The word "Snoezelen" combines the Dutch words developing a diagnostic tool for attention deficit “snuffelen” (to seek/explore) and “doezelen” (to doze). hyperactivity disorder (ADHD). This therapy originated in the Netherlands and has been The opening ceremony was also attended by the in throughout Europe for ten years. The Snoezelen Room President of Iceland, who congratulated Mentis Cura on is specifically designed for people with dementia in what he called “a turning point for human residential and semi-residential settings understanding.” President Grímsson added: “We all know Previous trials have shown significant improvement in examples of individuals who have been written off or behaviour and communication. These results have met judged because of lack of understanding of their with great approval from caregivers, who claim that it also conditions. It will be exciting to watch the impact of the acts as a kind of “leisure time” for people with dementia. diagnostic for Alzheimer’s patients and children.” Ms Fanney Proppé Eiríksdóttir (pictured), Chairperson of FAAS, also congratulated Mentis Cura on the opening and thanked them for their efforts. She said: “Even though the thought of there not being any cure for Alzheimer’s is difficult, the progress is remarkable and early diagnostic is a matter of human rights. It means that patients can fight their own battles, instead of having to rely on their partners or children, take care of their own matters and retire with dignity." 3 February: Alzheimer Portugal launches A September 2012 paper about the effectiveness of the intergenerational art project software can be downloaded from the website shown below. Alzheimer Portugal has launched a new www.karger.com/Article/Abstract/339996 intergenerational project called "Spaces of Memory" that aims to boost inclusion of people with Alzheimer's disease in the local community. The project, which is managed by Dr. Carlos Garcia, takes place in Alzheimer Portugal's day care centre and pairs people with dementia with students from the local

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20 February: Luxembourg's ALA wins top prizes for activities and how to carry them out. It can also video clip remind them of the location of various items or help with decisions on which clothes to wear. • security and safety: the robot can have a surveillance function with an alarm to warn the caregiver of unusual behaviour. This is related to domotic applications, in which the robot can act as an

interface with the caregiver. On 20 February, the Association Luxembourg Alzheimer (ALA) won the jury's top Gold Award for a video clip Finally, the robot can generate periodic reports about the entitled "Living with dementia" at the Luxembourg Media person's favourite activities, in order to help caregivers Awards 2013. The video clip is part of ALA's latest and professional design and adapt daily routines. awareness campaign and appears on local TV and in cinemas. The clip also won first prize among the public, Science Watch who participated by casting e-votes. 31 January: Women with heart disease are more The clip portrays a man who is wandering, apparently lost, prone to vascular dementia in a busy neighbourhood. He seems unable to make any sense of his surroundings, even when he attempts to A recent study shows that older women with heart board a local bus. The man attracts various odd looks disease are at greater risk of developing vascular from people, but no one comes forward to help him find dementia. his way. The study, conducted at the Mayo Clinic in Rochester, The video clip can be seen on ALA's website - Minnesota, followed 1,450 men and women in their 70s www.alzheimer.lu/de/actualites/verschiedenes/alzheimer and 80s. They were free of cognitive impairment at the -spot.html - and pictures from the award ceremony are start of the study and underwent tests to measure brain available on the website below. function every 15 months. http://kultur.rtl.lu/kulturpur/fotoen/13087/overview?back=/kulturpur/fotoe After four years, 348 people had developed some form of n mild cognitive impairment (MCI). Amongst this group, 94 had the type of MCI linked to vascular dementia. The link was particularly strong in women: those with heart problems were about three times more likely to develop it than women without heart concerns. Dr. Rosebud Roberts, Professor of Epidemiology at the Mayo Clinic, said: “If we reduce the risk of the conditions that lead to cardiac disease, hopefully we can reduce the risk of developing MCI, and thereby reduce the risk of developing dementia.” 25 February: New "Robalz" robot will assist Spanish caregivers http://archneur.jamanetwork.com/article.aspx?articleid=1560008 Spain's Fundación Alzheimer 4 February: New clinical trial will study brain España (FAE) has launched a inflammation in AD project, along with UC3M The University of Southampton has just launched a three- Robotics Lab, to develop a year study to see whether inflammation caused by personal robot that will help infections also speeds up progress of Alzheimer's disease. caregivers of people in the early stages of Alzheimer's disease. The research team, led by Dr. Delphine Boche, Lecturer in Clinical Neurosciences, believes that the Alzheimer’s The "Robalz" robot is designed to ease some of the immune system goes beyond its role as protector of the caregiver's burden by accompanying the ill person and body and starts causing damage, like it does in an providing help with entertainment, stimulation, personal autoimmune disease. assistance and security and safety. Some of the robot's potential activities are described below: The study will use brain tissue from people who lived with Alzheimer's disease. Scientists will compare the brains of • entertainment: the robot can be a companion and those who had infections when they died with those who entertainer, e.g. by telling stories or broadcasting did not. They are particularly interested in microglia, news, music and films. This may help avert feelings of immune cells that remove cellular debris. Dr. Boche loneliness and make the person feel wanted and believes that microglia may produce chemicals that are looked after. harmful to surrounding cells and make Alzheimer's worse. • stimulation: the robot can provide memory exercises and various art or music therapies as ways to delay She said: "There is already evidence that the immune cognitive decline. However, these scenarios require system is on high alert in people with Alzheimer's and we further study. think that an extra trigger, like an infection, could tip the balance and make immune cells switch from being • personal assistance: the robot can help with daily protective to harmful." tasks, such as reminding people of their daily

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www.southampton.ac.uk/mediacentre/news/2013/jan/13_17.shtml clinical trials but has been hampered by the accumulation 4 February: Cerebrolysin improves cognitive of amyloid in cerebral blood vessels.” function in vascular dementia www.pnas.org/content/108/12/5063.abstract?sid=44953bbb-d922-4e19- bec8-3f6aaf0ea923 Researchers from Sichuan University in China have shown that Cerebrolysin can help improve cognitive and global 5 February: The amyloid protein is not function in patients with mild to moderate vascular transmissible dementia. A new study from the University of the Pennsylvania Cerebrolysin is a peptide-based drug that supports the School of Medicine suggests that the amyloid protein survival, stability and function of neurons. The drug does not transmit itself from one cell to another, nor can decreases amyloid production, promotes synaptic repair it be transmitted from one person to another. and improves cognitive and behavioural performance. It is Previous studies have suggested that amyloid proteins marketed by Ebewe Pharmaceutical and is already used in might act as prions, which pass from cell to cell in diseases 44 countries for stroke, dementia, and traumatic brain such as Creutzfeldt-Jakob disease. Prions can spread from injury. contaminated food and through blood transfusions and For this study, researchers looked at data from six tissue transplants. randomized controlled trials involving 597 people. All In this study, led by Dr. John Trojanowski, Professor of participants received Cerebrolysin intravenously in Geriatric Medicine and Gerontology, scientists different daily concentrations and for different treatment investigated whether similar prions were at work in periods from a few weeks to three years. neurodegenerative diseases such as Alzheimer’s or The combined results showed significant improvement in Parkinson’s disease. They studied people who had cognitive function compared to standard care alone or received human growth hormone from 1963 to 1985 placebos. Participants were tested on their recall, derived from cadavers. In the mid-1980s, over 200 of arithmetic or other cognitive abilities. The drug also had a these patients developed Creutzfeldt-Jakob disease after small positive effect on patients’ overall clinical state. being inadvertently infected with prion proteins from There was also some suggestion that long-term treatment affected donor tissue. Since then, this group of patients was associated with greater benefits. has been closely monitored with extensive medical records to track for further cases. The study was led by Dr. Li He, Neurology Researcher at Sichuan University. He said: “The results are promising but The researchers looked for signs of an elevated risk of due to low numbers of trials, inconsistencies between Alzheimer’s, Parkinson’s, fronto-temporal lobar trials, risk of bias in the way some of the trials were degeneration and amyotrophic lateral sclerosis (ALS) conducted and lack of long-term follow-up, we cannot yet among the recipients. They found three cases of ALS but recommend Cerebrolysin as a routine treatment for no cases of Alzheimer’s or Parkinson’s. vascular dementia.” Dr. John Trojanowski said: “People wonder if it will be http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD008900.pub2/abstr possible for a person with Alzheimer’s disease to infect act another individual without Alzheimer’s disease, if a kidney 5 February: CD36 protein is linked to amyloid transplant came from an Alzheimer’s patient. build-up "Our findings argue there is no evidence in this large cohort of human-to-human transmission. The likelihood Scientists from Weill Cornell Medical College have shown of a transplant conveying the disease would be very low.” that the CD36 protein is linked to amyloid build-up in mouse models. http://archneur.jamanetwork.com/article.aspx?articleid=1566614 Dr. Costantino Iadecola, Professor of Neurology, led the 8 February: New clinical trials of masitinib for team that investigated whether lowering amyloid burden Alzheimer's disease can reduce signs of Alzheimer’s disease. The researchers removed a receptor called CD36 that appears on the French biotech company AB Science has begun surface of immune cells from the mouse brains. They recruitment for two new studies of its masitinib molecule found that mice without CD36 had less amyloid in their for Alzheimer's disease. brain vessels and performed better on cognitive tests, The first is a phase 3 study in people with mild to suggesting that removing protein from arteries can reduce moderate Alzheimer's disease. This will compare the symptoms of the disease. safety and efficacy of masitinib or placebo during 24 Dr. Iadecola said: “Our findings strongly suggest that weeks, in addition to a stable dose of cholinesterase amyloid, in addition to damaging neurons, also threatens inhibitors and/or memantine. During a phase 2 study, the cerebral blood supply and increases the brain’s Masitinib demonstrated statistically significant susceptibility to damage through oxygen deprivation. improvement on the ADAS-Cog scale (see weblink below). “If we can stop accumulation of amyloid in these blood The other trial is a phase 1 pharmacokinetics study that vessels, we might be able to significantly improve will evaluate the impact of masitinib on the cognitive function in Alzheimer’s-disease patients. pharmacokinetic profile of galantamine and donepezil. Furthermore, we might be able to improve the Masitinib is a tyrosine kinase inhibitor (TKI) that is effectiveness of amyloid immunotherapy, which is in typically used in cancer drugs. AB Science is also running

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phase 2/3 trials of masitinib for various cancers, the study participants had abnormal levels of beta inflammatory diseases and Multiple Sclerosis. amyloid and half vascular brain injury, or infarcts. It was really very clear that the amyloid had very little effect, but http://alzres.com/content/3/2/16 the vascular brain injury had distinctly negative effects. The more vascular brain injury the participants had, the worse their memory and the worse their executive function."

www.alzheimer-europe.org/Donation http://archneur.jamanetwork.com/article.aspx?articleid=1569371 14 February: HRT may delay the onset of 11 February: DNA mutation causes harmful Alzheimer's disease protein production in FTD and ALS A recent study from Stanford University shows that A new study has identified a genetic DNA mutation that hormone replacement therapy (HRT) could delay the causes proteins to form into clumps associated with onset of Alzheimer's disease in women. HRT is used to fronto-temporal dementia (FTD) and Amyotrophic Lateral relieve the symptoms of menopause and has also been Sclerosis (ALS). shown to cut the incidence of heart attacks. It is already known that the mutated C9orf72 gene Researchers tested 70 healthy women aged 45-65 who contains a repetition of a certain DNA sequence. This had been on hormone therapy since menopause. The study, led by Dr. Dieter Edbauer, Neuroscientist at the women were divided into two groups, of which one Ludwig Maximilian University in Munich found that the remained on hormones and the other discontinued mutation also causes the production of three different therapy. All the women underwent periodic blood testing proteins that aggregate into clumps. over a two year period. Dr. Edbauer said: “These are very extraordinary proteins The researchers found that about 20% of the women that usually don’t show-up in the organism. As far as we carried the ApoE4 gene, a major genetic risk factor for know, they are completely useless and scarcely soluble. Alzheimer’s disease. Within this group, the women who Therefore, they tend to aggregate and seem to damage had undergone HRT were six times less likely to develop the nerve cells. We haven’t formally proven toxicity, but cognitive impairment than those who had not. there is ample evidence. The study team was led by Dr. Natalie Rasgon, Professor “As the mechanism of their production is so unusual, we of Psychiatry and Behavioral Sciences at Stanford, who may find ways to inhibit their synthesis without said: "This shows that ApoE4 is contributing to aging at interfering with the formation of other proteins. One the cellular level well before any outward symptoms of could also try to block their aggregation and accelerate decline become apparent. Yet, estrogen appears to have a their decomposition.” protective effect for middle-aged women who are www.sciencemag.org/content/early/2013/02/07/science.1232927.abstract?s carrying this genetic risk factor." id=fb9ce601-5918-489b-b531-f9d7526ad537 www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0054713 12 February: Vascular brain injury causes more cognitive aging than plaque 26 February: Scientists map pathway for brain waste clearance A recent study from the University of California at Davis (UC) shows that vascular brain injury is a far greater risk Researchers at New York's Stony Brook University have factor for cognitive impairment than the deposition of developed a new method to image the brain's entire amyloid plaque. glymphatic pathway. This is the process where cerebrospinal fluid (CSF) filters through the brain and The scientists were led by Dr. Bruce Reed, Professor of exchanges with interstitial fluid (ISF) to clear waste, Neurology at UC. They tested 61 participants who ranged similar to the way lymphatic vessels clear waste from in age from 65 to 90 with an average age of 78. 30 other organs. participants had no dementia diagnosis, 24 were cognitively impaired and seven were diagnosed with The researchers were led by Dr. Helene Benveniste, dementia. The participants underwent both MRI and PET Professor of Anesthesiology and Radiology at Stony Brook. scans, in order to determine whether there was a They used contrast agents and molecular tracers with MRI correlation between vascular brain injury and the to develop the imaging tools. Using these tools, they deposition of beta amyloid plaques. imaged major regions in the brain and produced a map of the entire glymphatic pathway. The images show the CSF- Dr. Reed said: "The first question was whether those two ISF interchange throughout the whole brain, including pathologies correlate to each other, and the simple pathways parallel to major arteries that are also involved answer is 'no'. Earlier research, conducted in animals, has in the waste clearing process. suggested that having a stroke causes more beta amyloid deposition in the brain. If that were the case, people who Dr. Benveniste said: "Our experiments showed proof of had more vascular brain injury should have higher levels concept that the glymphatic pathway function can be of beta amyloid. We found no evidence to support that. measured using a simple and clinically relevant imaging technique. This technique provides a three-dimensional "The second was whether higher levels of cerebrovascular view of the glymphatic pathway that captures movement disease or amyloid plaques have a greater impact on of waste and solutes in real time. This will help us to cognitive function in older, non-demented adults. Half of define the role of the pathway in clearing matter such as

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amyloid beta and tau proteins, which affect brain family caregivers. The video series reveals common processes if they build up." struggles and stresses, and provides insights. www.jci.org/articles/view/67677 The video series responds to needs identified in a 2012 survey of more than 600 Alzheimer's family caregivers in Dementia in Society America. Results showed that many caregivers are not getting the stress relief they need, with many seeking tips 6 February: Americans with AD will nearly triple by on how to be a more effective caregiver and on ways they 2050 can better communicate with family and friends about the person they are caring for. A new study predicts that the number of Americans with Alzheimer's disease will almost triple by 2050. The new videos are a series of short segments that can be watched all at once or individually, to help provide Numbers are projected to rise from about 5 million now caregivers with inspiration, perspective and advice to 13.8 million. Lead author Jennifer Weuve describes this whenever they can find a few minutes throughout the as if "everyone in the state of Illinois had Alzheimer's". In day. European terms, this is more than the entire current population of Greece or some 80% of all Dutch people. http://caregiveraction.org/resources/alzheimer-videos/ Dr. Weuve, Assistant Professor of Medicine at Chicago's 11 February: European Commission publishes Rush Institute for Healthy Aging, also pointed out: "We've "Active and Healthy Ageing - For you & with you" had great success in this country when we've decided to focus on a condition. We've done it with good research in On 11 February, the European Commission (DG Digital heart disease, cancer and HIV, but we are in our infancy Agenda) published a new brochure: “Active and Healthy when it comes to Alzheimer's research." Ageing - For you & with you”. In 2012, US funding for Alzheimer's disease was USD 606 The brochure highlights the challenges and opportunities million (EUR 455 million), compared to HIV's USD 3 billion related to demographic ageing in Europe. It also presents (EUR 2.2 billion) and USD 6 billion for cancer. An a selection of EU-funded IT solutions developed to additional USD 100 million (EUR 75 million) for improve the health and quality of life of seniors. Alzheimer's research for 2013 is awaiting approval. The publication particularly calls upon society to be active The study was financed by the National Institute on Aging, and proactive towards change and innovation and National Institutes of Health and the US Alzheimer's support healthy ageing and smart innovation with ICT Association. technology. http://europa.eu/ey2012/ey2012main.jsp?langId=en&catId=970&newsId=18 www.neurology.org/content/early/2013/02/06/WNL.0b013e31828726f5.abs 06&furtherNews=yes tract?sid=cfef1e67-2463-4d7e-a59f-133f737a5b0a 26 February: UK Alzheimer's Society releases New Publications & Resources report on life in care homes 2 February: Maltese Ministry publishes a book on On 26 February, the UK dementia Alzheimer’s Society published a report entitled: The Malta Department of "Low expectations - Health, the Elderly and Attitudes on choice, care and community for people with Community Care has recently dementia in care homes". The report provides new launched the book "X’ћin hu? evidence on the key issues affecting people with Fatti dwar id-dimensja" dementia living in care homes. It summarises evidence ("What time is it? Facts about from surveys of family members, care home staff and dementia"). people with dementia about their views on care in care The book is authored by Charles Scerri, Secretary of the homes. Malta Dementia Society with the collaboration of the "Low Expectations" finds evidence of a deep-seated well-known local author Trevor Zahra. It provides pessimism about life in care homes. Only 41% of relatives important information about the various aspects of surveyed by Alzheimer’s Society reported that their loved dementia and ways with which individuals ones enjoyed good quality of life. Despite this, three with dementia can have a better quality of quarters of relatives would recommend their family life at home. member’s care home. Dr. Scerri (pictured) also serves as The report also reveals the severe image crisis facing the Honorary Secretary on the Board of care sector. According to a poll commissioned by the Alzheimer Europe. charity, 70% of UK adults say they would be fairly or very 6 February: New video series provides insights for scared of going into a care home. In addition, two thirds do not feel the sector is doing enough to tackle abuse in carers care homes. A new online video series from the Caregiver Action The Society argues that public attitudes and scepticism Network (CAN) paints a picture of the common about whether people with dementia enjoy a good quality experiences of America's diverse Alzheimer's disease

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of life in a care home is leading to a failure to drive up Interested applicants are invited to contact standards of care. [email protected] by 15 March. Jeremy Hughes, Chief Executive at Alzheimer’s Society, www.stir.ac.uk/about/jobs/details/index.html?id=QUUFK026203F3VBQB7V7 9V7NE&nPostingID=351&nPostingTargetID=344&mask=extstirling&lg=UK said: "When you walk into an excellent care home it’s full www.stir.ac.uk/impact/partnership-projects of warmth, activities and interaction. But between these best examples and the worst, which often dominate headlines, there is a forgotten scandal of people with dementia who are failed and left living a life that can only be described as 'OK'. "Society has such low expectations of care homes that people are settling for average. Throughout our lives we demand the best for ourselves and our children. Why do we expect less for our parents? We need the government and care homes to work together to lift up expectations so people know they have the right to demand the best." The report is available on the Alzheimer's Society website. www.alzheimers.org.uk/lowexpectations 27 February: New book on dementia published in Romania

On 27 February, a new book about dementia was published in Romania. “Stepping out of the shadow” describes the personal experience of receiving a dementia diagnosis and the ensuing

consequences. The book was written by Ms Helga Rohra, who was diagnosed with Dementia with Lewy bodies five years ago. Ms Rohra is an ardent dementia activist and also the Chairperson of the European Working Group of People with Dementia (EWGPWD). http://www.alzheimer-europe.org/EN/Alzheimer-Europe/Who-we- are/European-Working-Group-of-People-with-Dementia

Job opportunities

28 February: Stirling University seeks lecturer and offers PhD opportunity Contact Alzheimer Europe at: Alzheimer Europe, 145 route de Thionville, L-2611, Luxembourg The University of Stirling is seeking to appoint a full-time [email protected], www.alzheimer-europe.org lecturer to the team delivering qualifying social work Alzheimer Europe Board education. Applications are invited from potential Chairperson: Heike von Lützau-Hohlbein (Germany); Vice-Chairperson: Iva candidates with a strong commitment to social work Holmerová (Czech Republic); Honorary Secretary: Charles Scerri (Malta); Honorary Treasurer: Maria do Rósario Zincke dos Reis (Portugal); Members: education and research; to team working; and to Patrick Maugard (France), Maurice O’Connell (Ireland), Sirpa Pietikäinen enhancing the contribution of Social Work to Applied (Finland), Helga Rohra (Germany), Alicja Sadowska (Poland), Henry Simmons Social Research. (UK - Scotland). Alzheimer Europe Staff The successful candidate will contribute to the range of Executive Director: Jean Georges; EU Public Affairs Officer: Annette Dumas; duties associated with the successful delivery of qualifying Administrative Assistant: Kate Ellis; Editor – Dementia in Europe Magazine: Julie Fraser; Information Officer: Dianne Gove; Conference and Event social work education. The post holder will also be Coordinator: Gwladys Guillory; Communications Officer: Alex Teligadas; expected to contribute to the School’s research strategy Administrative Assistant: Grazia Tomasini. in terms of both publication and income generation.

The University is also offering a fully funded PhD studentship to investigate services and support for people with alcohol related brain damage. The student will work closely with the University's School of Applied Social Science and the Salvation Army. The project is titled: "Understanding the experiences and support needs of people with cognitive impairment and alcohol problems www.alzheimer-europe.org/Donation among users of Salvation Army services in Scotland."

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AE Calendar 2013

Date Meeting AE Representative European Innovation Partnership on Active and Healthy Ageing action group meeting on ‘age- 1 March Annette friendly communities’(Brussels, Belgium) Meeting with representatives of the Parliament Magazine to discuss event in the EP with A. 4 March Annette Werthmann on Neurodegenerative diseases (Brussels, Belgium) 5 March CEO Initiative on Alzheimer’s disease in European Parliament (Brussels, Belgium) Jean 7 March Innovative Medicines Initiative Symposium “Collaborating for cures (Brussels, Belgium) Jean

f2f AETIONOMY meeting at the Fraunhofer Institute for Algorithms and Scientific Computing (Sankt 8 March Dianne Augustin, Germany)

12 March RightTimePlace Care Project Meeting (Brussels, Belgium) Dianne 13 March Meeting with Michael Hübel, European Commission (Luxembourg, Luxembourg) Jean 14 March European Commission ‘European Month of the Brain’ conference: ‘European brain research : Annette successes and next challenges’ (Brussels, Belgium) 21 March Dianne, Jean Kick off meeting for the “Good incontinence care project” (Luxembourg. Luxembourg)

28 March ALCOVE Final Symposium (Paris, France) AE staff 12 April EWGPWD meeting (Brussels, Belgium) Helga, AE staff Future Conferences

Date Meeting Place 21-22 March 2013 SDCRN's 3rd Annual Dementia Research Conference: “Nations and Generations”, Stirling, Scotland http://www.sdcrn.org.uk/resources/conference-2013 21-23 March 2013 57. Jahrestagung der Deutschen Gesellschaft für Klinische Neurophysiologie und Funktionelle Leipzig, Germany Bildgebung (DGKN), www.dgkn-kongress.de 28 March 2013 ALCOVE Final Symposium, www.alcove- Paris, France project.eu/index.php?option=com_content&view=article&id=46&Itemid=184 11-14 April 2013 The 7th World Congress on Controversies in Neurology (CONy), www.comtecmed.com/cony/2013/ Istanbul, Turkey 18-20 April 2013 28th International Conference of Alzheimer's Disease International: Dementia: Action for global Taipei, Taiwan change, www.adi2013.org 18-21 April 2013 9th International Congress on Mental Dysfunction & Other Non-Motor Features in Parkinson’s Seoul, Korea Disease and Related Disorders – MDPD 2013, www.kenes.com/mdpd2013 4-12 May 2013 Neural Stem Cells in Development and for Brain Repair, www.nsas.it/neural-stem-cells-for- Cortona, Italy development-and-repair 23-24 May 2013 3rd International Conference on Neurodegenerative Disorders: Immunotherapy and Biomarkers, Uppsala, Sweden http://eventus.trippus.se/immunotherapy_uppsala2013 5-6 June 2013 Pioneers in healthcare [email protected] Brussels, Belgium 8-11 June 2013 23rd ENS 2013 meeting, www.congrex.com Barcelona, Spain 13-14 June 2013 EU Summit on active and healthy ageing: An action agenda for European cities and Communities, Dublin, Ireland http://www.ahaconference2013.ie 23-27 June 2013 The 20th IAGG Congress of gerontology and geriatrics, www.iagg2013.org Seoul, Korea 21-26 September 2013 XXI World Congress of Neurology, www.oegnt.at Vienna, Austria 5-9 October 2013 26th ECNP (European College of Neuropsychopharmacology), www.ecnp-congress.eu Barcelona, Spain 10-12 October 2013 23rd Alzheimer Europe Conference: “Living well in a dementia-friendly society”, www.alzheimer- St. Julian’s, Malta europe.org/EN/Conferences 17-20 October 2013 8th International Congress on Vascular Dementia – ICVD 2013, www.kenes.com/icvd Athens, Greece 11-14 December 2013 The 16th Asia Pacific regional Conference of Alzheimer’s disease international, www.aprc2013- Hong Kong & Macau hongkong-macau.com th 20-22 March 2014 58 Annual meeting of the German society for clinical neurophysiology and functional imaging Berlin, Germany (DGKN), www.dgkn-kongress.de 20-23 March 2014 30th International Congress of Clinical Neurophysiology of the IFCN (ICCN), www.iccn2014.de Berlin, Germany 26-29 March 2014 13th Int. Geneva/Springfield Symposium on Advances in Alzheimer Therapy, www.ad-springfield.com Geneva, Switzerland 5-9 July 2014 9th FENS Forum of Neuroscience, http://forum.fens.org/2014 Milan, Italy

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The Alzheimer Europe newsletter arises from the 2013 Work Plan of Alzheimer Europe, which has received funding from the European Union in the framework of the Health Programme.

Page 17 of 17

NEWSLETTER March 2013

report on the recent activities of Highlights in this issue Editorial our current EAA members: MEP Corien Wortmann-Kool spoke 28 February: New Irish 9 March was a busy month for about the fiscal challenges of Working Group of People with dementia and MEPs Daciana Sarbu Dementia us - and also for our readers, and Cristian Busoi took part in March: Three MEPs join the 3 judging by the Romania's National Alzheimer European Alzheimer’s Alliance contributions we Conference, organised by the 1 March: New EMIF project 3 received. Our Romanian Alzheimer Society. holds first conference happiest news Amongst our members, the best 3 March: EMA aims to reduce 12 was the arrival of Emma Lizzie news came from Slovenia, where medication errors McInerney, daughter of Gwladys the government has approved the 5 March: Slovenia approves 8 and Sean, who was born on 29 working document that will guide national dementia plan March. the country's national dementia 5 March: MEP Wortmann-Kool 4 In March, AE joined a new strategy. In Portugal, the speaks at CEO Conference European project called EMIF that parliament approved a new Social 28 March: ALCOVE project 7 aims to create a common Economy law and Alzheimer Hellas holds final conference information framework of held a successful annual Alzheimer's disease patient data. conference amid adverse Meanwhile, the DECIDE project conditions. A new alliance in the UK and Ireland is helping people has ended and we're looking at several opportunities to join new with dementia to stay in their projects. homes and the new Irish Working Group of People with Dementia We also hosted the first meeting held its first meeting. Belgium's of the Incontinence Care project LINAL issued a position paper on and attended the final meeting of euthanasia and the Flemish the ALCOVE Joint Action: this pan- association held an event for European project has yielded new children of people with dementia. knowledge about dementia and will help to improve the health, In scientific news, a new clinical trial will focus on agitation and quality of life, autonomy and dignity of people living with aggression in Alzheimer's disease. Meanwhile, the Connectome Table of contents dementia and their carers. We also attended various meetings and project intends to create a new Editorial ...... 1 symposia, including several in the brain map and has already European Parliament. Our next released some extremely detailed Alzheimer Europe ...... 2 Lunch Debate will take place there images. AE Projects ...... 2 in June and we'll soon be March was a good month for new European Alzheimer’s Alliance ...... 3 announcing the speakers and the publications: an EU report explores topic. the number of healthy years that AE Networking ...... 5 In European affairs, the we may expect to live and a UK EU Developments ...... 5 Commission is gearing up for the survey reveals the huge scale of the adult social care sector. There Policy Watch ...... 8 European Month of the Brain, with many events and activities around is also an interesting study on the Members’ News ...... 8 brain research during May. The benefits of gardens in dementia care homes. Finally, the EU and Science Watch ...... 12 European Medicines Agency is taking steps to reduce medication the UN have produced an online Dementia in Society ...... 15 errors and has also appointed new index that measures how older people can live up to their full New Publications & Resources ...... 16 members to its Board. potential in terms of employment, Job opportunities ...... 17 We are very pleased to welcome participation in social life and three new members to the independent living. AE Calendar 2013 ...... 18 European Alzheimer's Alliance, Future Conferences ...... 18 bringing total membership to 70 Jean Georges MEPs from 23 countries. We also Executive Director

Page 1 of 19 Newsletter: March 2013

Alzheimer Europe AE Projects 21 March: AE hosts meeting of Good Incontinence 22 February: DECIDE project team holds final Care working group workshop On 21 March, Alzheimer Europe hosted the kick-off On 22 February, the DECIDE team members presented the project's meeting of the project on “good incontinence care for people with dementia”. The meeting was chaired by results during a workshop entitled Dianne Gove, Information Officer for Alzheimer Europe "e-Infrastructures for medical research and clinical praxis: and project leader. The participants included Jean Georges, Executive Director of Alzheimer Europe and achievements and the way Nicole Huige of SCA Global Hygiene. Also present were forward" at the Italian Ministry of Health in Rome. Vicky Morris, Daniela Hayder and Kai Leichsenring, The workshop was hosted by Dr. Gaetano Guglielmi, independent experts and researchers in dementia, representing the Italian Minister of Health and Ms Claudia incontinence care and social and welfare policy. Battista, Deputy Director of the GARR Consortium. GARR is an organisation providing high-bandwidth connectivity to the Italian academic and research community and also led the DECIDE project. Ms Battista greeted the 45 delegates and gave a brief presentation of GARR, including its involvement in the DECIDE project. She was followed by Dr. Guglielmi, who explained that the Ministry has worked closely with GARR since 2005, specifically to develop the role of ICT (information and communications technology) in medical research. He added that the Ministry was very pleased The focus of the meeting was on the methodology and with the progress shown by the DECIDE partners and the literature review. It was agreed that there was a promised support for the post-project phase. dearth of evidence-based scientific literature on incontinence care of people with dementia, particularly in The next presenter was Prof Stefano Cappa, who is from the home care setting and that the scope of the project the San Raffaele University and Science Institute and also should be on good incontinence care for people with sits on the JPND scientific committee. He gave an dementia living at home, provided by informal and overview of the challenges posed by dementia and professional carers. Due to the lack of existing research in outlined the various EU health and research programmes this particular area, it was also agreed that an integrative that are addressing these challenges. Prof Cappa pointed literature review and expert consultation should form the out that DECIDE is an excellent example of how ICT can basis for the development of guidelines, rather than of a help to improve the lives of people with dementia: it is care standard, targeted at formal and informal carers, as relatively inexpensive, easy to use and can already be well as service providers and policy makers. A number of used all over Europe. issues will be explored such as data on the prevalence of incontinence and dementia in the home setting, access to He was followed by Prof Roberto Barbera from the incontinence care, the training of carers, ethical issues, University of Catania in Sicily. Prof Barbera described the assessment and diagnosis. evolution and operation of distributed (or grid) computing, which provides the backbone of the DECIDE The next step will consist of an expert discussion about project. Currently, there is a large effort to ensure that the literature review and possible recommendations the various grids across the world are able to involving the full working group and reference group. The communicate with one another. Prof Barbera foresees a European Working Group of People with Dementia will be future where grids will be as common as today's mobile represented in this project by Chairperson Helga Rohra. telephone networks. He also pointed out that DECIDE was The project, which officially started in January 2013 will specially designed with standards that allow the service to end in October 2014 with the presentation of the results already operate worldwide today. at Alzheimer Europe’s annual conference in Glasgow. The project is fully funded by SCA Global Hygiene. Dr. Giovanni Frisoni, Scientific Manager of DECIDE, then gave a detailed demonstration of how the service actually 29 March: Alzheimer Europe welcomes new baby works. He took the audience through all the steps of the staff member "Physician" service, which is one of the three services available. Dr Frisoni described how a neurologist can Alzheimer Europe is very upload an MRI or PET scan and then have it compared to happy to announce the safe the thousands of existing records in the DECIDE database. arrival of Emma Lizzie This comparison takes the form of a statistical report that McInerney. Emma was born gives the physician indications of whether his scan on 7:33 AM at a weight of presents signs of dementia. 3.19 kg for 48 cm. Gwladys is in fine form and both her The morning session ended with a summary by Dr. Fulvio and Sean are very proud of their new daughter. Galeazzi, DECIDE Project Manager. He thanked all the project partners for their efforts and pointed out that the DECIDE services will continue to be used even as the project now reaches its end.

Page 2 of 19 Newsletter: March 2013

The afternoon session consisted of an interactive panel sessions, one of which concentrated on the Alzheimer’s session that explored the sustainability of the DECIDE disease cohorts that will be used in the project. This model, as well as challenges and strategies on how to session gave participants very detailed information about overcome them. Current EU funding rules do not allow for how existing cohorts will be combined. It included the the commercial operation of a project, only its proposed workflow of fingerprinting and selecting the development and proof that it works. However, the most appropriate cohorts, all while making sure that medical community traditionally requires a proven track ethical standards are followed in each country of origin. A record before it will embrace a new technology such as final breakout session focused on the possibilities and DECIDE. Delegates heard from various early adopters of difficulties that are likely to arise when the cohort the service, who provided examples of how the populations are combined. The first day ended with a technology is already used in medical applications today. brief summary of the experiences and outcomes of the breakout sessions. DECIDE is a European project within the Seventh Framework Programme. This workshop was the final The second day began with another round of breakout public event of the two-year project, which began in sessions. These concentrated on cross-topic issues, September 2010 and involved 13 project partners from specifically for the work packages that will have high five countries. interaction with each other. Participants identified overlaps between packages and evaluated how to avoid www.eu-decide.eu conflicts between the groups. The breakouts were 28 February: EMIF holds first General Assembly followed by a plenary session that explored the links Meeting between diabetes and dementia. In particular, the delegates discussed the existing biomarkers and cohorts The European Medical Information for both diseases and how they might combine these to Framework (EMIF) project held its first advance research into the links between the two diseases. General Assembly Meeting on 28 February The morning ended with a rundown of how the project - 1 March 2013 in Brussels. management will work. EMIF is a five year project that aims to develop a common In the afternoon, there was a group discussion about the information framework of patient-level data, with an “Grand Vision” of the project. This consisted of taking a initial focus on Alzheimer’s disease and obesity. The long term view of where the project might lead, such as a project, which began in January 2013, intends to facilitate virtuous circle containing both research and clinical access to existing data sources, ease the creation of links workflows and knowledge. Participants provided ideas between sources and collect additional information and suggestions on how they imagine EMIF may have an wherever needed. To achieve this, the project partners impact on general health levels, as well as how medical will work within 15 work package groups to address such and research professionals may benefit from the project. issues as data standards, interoperability, data privacy The meeting ended with a collection and wrap up of and ethical and legal issues. They will also cooperate to action points over the two days. leverage “tranSMART”, an IT platform that allows access to multiple data sources. Alzheimer Europe is one of 21 partners in Work Package 10, which is entitled “Governance, Federation, DB The meeting was opened by Mr Bart Fingerprinting, Legal and Ethics”. WP10 is headed by Dr. Vannieuwenhuyse, overall Project Miriam Sturkenboom, Professor of Pharmaco- Coordinator and Senior Director of epidemiology at Erasmus Medical Centre (EMC) and Bart Health Information Sciences at Janssen Dewindt, Clinical Research Associate at Janssen R&D. This R&D. He welcomed the 98 delegates and outlined the work package will be most active in the first part of the main objective of this meeting, namely for the numerous project, as it will select and gather data from various delegates to get to know each other and their work cohorts in Europe. Once this is achieved, other groups will package leaders and team members. Mr work to make the data universally accessible via Vannieuwenhuyse was followed by Colm Carroll, the tranSMART. project’s Scientific Coordinator and liaison to IMI. Mr Carroll explained that EMIF - which involves 57 partners The EMIF project has received support from and some 250 people from 14 countries - is by far the EFPIA companies and the European Union (IMI largest IMI project by number of participants and the third JU). largest by budget, at EUR 56 million over five years. Dr. Simon Lovestone, Professor of Old Age Psychiatry at King’s College London, is also on the EMIF Coordination Committee but was unable to attend this meeting. The remaining morning speakers gave more detailed presentations about the main aims of the project. This included the specific focus on Alzheimer’s disease and obesity, along with the associated risk of diabetes leading European Alzheimer’s Alliance to dementia. March: Three MEPs join the European Alzheimer’s The afternoon session opened with a poster presentation, Alliance (EAA) giving delegates the opportunity to meet with their colleagues and discuss their initial impressions of the The European Alzheimer's Alliance is pleased to welcome various work packages. This was followed by breakout three new members: Martina Anderson, MEP (UK), Joseph

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Cuschieri, MEP (Malta) and Mark Demesmaeker, MEP Ms Wortmann-Kool predicted that investing in (Belgium). This brings EAA membership up to 70 MEPs Alzheimer’s disease today will have huge payoffs in the from 23 countries. decades ahead. The structure of such an investment will be complex, as it must be based on a global, cross-sector Martina Anderson belongs to the Confederal and cross-discipline solution. It will also involve a wide Group of the European United Left - Nordic range of government sectors, including health, finance, Green Left (GUE-NGL) and is a Member of its social welfare, family and employment. However, it will Bureau. She also sits on the Committee on alleviate the burden of dementia, as the syndrome the Environment, Public Health and Food prevents millions of people from participating in the Safety and is a substitute on the Committee on Regional workforce and contributing to economic growth. Development. She joined the Alliance on 6 March. The Global CEO Initiative on Alzheimer’s Disease is an Joseph Cuschieri is our first Maltese EAA advocacy effort led by George Vradenburg of member. Merhba! Mr Cuschieri is a member "USAgainstAlzheimer’s". The CEO Initiative is a coalition of of the Group of the Progressive Alliance of pharmaceutical companies – including AC Immune, Pfizer Socialists and Democrats in the European and Sanofi – and other companies who realise the impact Parliament (S&D) and also a member of the of Alzheimer’s on our society – such as Bank of America, Committee on Transport and Tourism. He joined the General Electric and Nestle. Alliance on 21 March. During this meeting, delegates confirmed the following Mark Demesmaeker is from Belgium and recommendations: belongs to the Group of the Greens/European Free Alliance • Alzheimer’s disease must be recognised as a priority, (Greens/EFA). He is also a member of the notably in the area of Research and Innovation. Committee on Foreign Affairs and of the • Alzheimer’s disease needs more investment that is Delegation for relations with Japan. He joined the Alliance better targeted and better coordinated. At the least, on 28 March 2013. this should be done at EU level but preferably at a 5 March: EAA member Corien Wortmann-Kool global level. presents the fiscal challenges of dementia • There is an urgent need for comprehensive plans to address the impact of Alzheimer’s disease, both at On 5 March, Corien Wortmann- national and European level. Kool, MEP (Netherlands) and • Health and social care services must be adapted to member of the European take better account of the specific needs of Alzheimer's Alliance (EAA), was Alzheimer’s patients. a keynote speaker during the launch event of the "CEO The launch event was chaired by Avril Doyle, former Irish Initiative" in the European MEP. In addition to Corien, other EAA members attended Parliament. Her speech focused on Alzheimer’s disease as the meeting: Heinz Becker (Austria), Cristian Busoi a future fiscal and economic challenge that should already (Romania) and Martina Anderson (UK - Northern Ireland), be addressed today. who has just joined the Alliance. The CEOs of Lilly and AC Immune also participated in the successful launch event, She pointed out that many national governments are as did representatives of the media and various European currently working to solve their financial crises and to institutions. Jean Georges represented Alzheimer Europe avoid them in the future. This is mainly done by looking at the meeting and provided an overview of the for macro-economic imbalances and other issues that organisation’s campaign to make dementia a European may provoke future crises. Ms Wortmann-Kool explained priority. that the rapid aging of the population is such an issue - particularly as there is a close correlation between 11 March: Former Alliance member elected as advancing age and the risk of Alzheimer’s disease. Maltese Prime Minister If it is left unchecked, the current situation will become a Dr. Joseph Muscat took office as Malta's st fiscal nightmare in the 21 century, overshadowing the new Prime Minister on 11 March. other health and social challenges we face. In 2010, the worldwide costs of dementia, including Alzheimer’s Previously, he served as a Member of the disease, were estimated to exceed one per cent of global European Parliament in 2004-2008. During gross domestic product (GDP), at more than USD600 that time, he was also the Vice-Chairperson billion (EUR 477 billion). of the European Alzheimer's Alliance. In the EU 27 region, this cost was estimated at EUR 160 Ms Annette Dumas, EU Public Affairs Advisor for billion or EUR 22,000/patient/year for 2008. Informal care Alzheimer Europe, said: "Dr. Muscat was always very costs were estimated at nearly EUR 90 billion (56% of the supportive of the dementia cause while he was an MEP. total cost), resulting mainly from productivity loss, His tenure as Vice Chair of the European Alzheimer's adverse impacts on physical and mental health of carers Alliance was of great benefit to the Alliance." and out-of-pocket expenses.

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Alzheimer Europe Networking 2013

On 1 March (Brussels, Belgium) Annette attended the European Innovation Partnership on Active and Healthy Ageing action group meeting on "age-friendly communities". On 4 March (Brussels, Belgium) Annette attended a meeting with representatives of Parliament Magazine to discuss an event in the EP with A. Werthmann on Neurodegenerative diseases. On 5 March 2013 (Brussels, Belgium) Jean participated in the launch event for the Global CEO Alliance on Alzheimer’s disease in the European Parliament. On 7 March 2013 (Brussels, Belgium) Jean attended a symposium on Alzheimer’s disease at a joint meeting of the Innovative Medicines Initiative and the Critical Path Initiative. On 8 March (Sankt Augustin, Germany) Dianne attended the Aetionomy F2F project meeting. On 12 March (Brussels, Belgium) Dianne attended the advisory board RightTimePlaceCare meeting. On 15 March 2013 (Luxembourg, Luxembourg), Jean met with Michael Hübel and Jürgen Scheftlein from the European Commission. On 21 March 2013 (Brussels, Belgium) Annette had a meeting with MEP J. Cuschieri to discuss Alzheimer Europe’s work in the EU. On 25 March 2013 (Brussels Belgium) Annette met with Parliament Magazine, EMSP and EPDA representatives to discuss an event on neurodegenerative diseases in the EP. On 28 March (Paris, France) Heike, Helga, Annette, Dianne, Alex and Jean attended the presentation of ALCOVE’s project results.

Members of the European Alzheimer’s Alliance

Currently, the total number of MEPs in the Alliance stands at 70, representing 23 Member States of the European Union and all seven political groups in the European Parliament. Alzheimer Europe would like to thank the following MEPs for their continued support of the European Alzheimer’s Alliance:

Austria: Becker K. Heinz (EPP), Werthmann Angelika (NI). Belgium: Demesmaeker Mark (Greens/EFA), Ries Frédérique (ALDE), Staes Bart (Greens/EFA), Tarabella Marc (S&D). Bulgaria: Parvanova Antonyia (ALDE). Cyprus: Triantaphyllides Kyriacos (GUE-NGL). Czech Republic: Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP). Denmark: Christensen Ole (S&D), Rohde Jens (ALDE), Schaldemose Christel (S&D). Finland: Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli (ALDE), Pietikäinen Sirpa (EPP). France: Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise (EPP), Juvin Philippe (EPP), Morin-Chartier Elisabeth (EPP), Pargneaux Gilles (S&D). Germany: Niebler Angelika (EPP), Roth-Behrendt Dagmar (S&D), Ulmer Thomas (EPP), Weisgerber Anja (EPP). Greece: Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni (S&D), Kratsa-Tsagaropoulou Rodi (EPP). Ireland: Aylward Liam (ALDE), Childers Nessa (S&D), Crowley Brian (ALDE), McGuiness Mairead (EPP), Mitchell Gay (EPP). Italy: Mauro Mario (EPP), Panzeri Pier Antonio (S&D), Toia Patrizia (S&D). Lithuania: Vilija Blinkeviciute (S&D). Luxembourg: Engel Frank (EPP), Lulling Astrid (EPP). Malta: Joseph Cuschieri (S&D). Netherlands: De Lange Esther (EPP), van Nistelrooij Lambert (EPP), Wortmann-Kool Corien (EPP). Poland: Łukacijewska Elżbieta (EPP). Portugal: Carvalho Maria da Graça (EPP), Coelho Carlos (EPP), Matias Marisa (GUE/NGL). Romania: Antonescu Elena Oana (EPP), Busoi Cristian (ALDE), Sârbu Daciana Octavia (S&D). Slovakia: Mikolasik Miroslav (EPP), Zaborska Anna (EPP). Slovenia: Peterle Alozj (EPP). Spain: Badia i Cutchet Maria (S&D), Estaràs Ferragut Rosa (EPP). United Kingdom: Anderson Martina (GUE-NGL), Ashworth Richard (ECR), Hall Fiona (ALDE), McAvan Linda (S&D), McCarthy Arlene (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Taylor Keith (Greens/EFA), Vaughan Derek (S&D), Watson Graham (ALDE), Willmott Glenis (S&D), Yannakoudakis Marina (ECR).

an important role to play for the achievement of the EU Developments Europe 2020 strategy and of the Innovation Union. 1 March: The European Month of the Brain is in The Commission has organised two conferences, one on May 2013 14 May in Brussels and the other on 27-28 May in Dublin. There will also be activities in other member states and The European Commission invites the Commission is encouraging people to send in ideas you to "Open your mind!" during about events to [email protected] May 2013, the European Month of the Brain. This will be a full month packed with

events and activities to make decision-makers, stakeholders, the http:// ec.europa.eu/research/conferences/2013/brain- media and the public aware of the successes achieved and month/index_en.cfm?pg=home the challenges still laying ahead for brain research. 12 March: European Commission adopts proposal Understanding the human brain and its diseases is one of for 2014 elections the greatest scientific and philosophical challenges. On 12 March, the European Commission adopted a During the last decades, brain research has made great proposal that calls for political parties to nominate a progress on all fronts but much more is still to be candidate for European Commission President in the next discovered. Advances in neuroscience are crucial to keep European elections and to display their European political our ageing societies and our economy healthy. Brain- party affiliation. The proposal aims to better inform voters related disorders will affect at least one in every three of about the issues at stake in next year's European us during our life and treating these disorders costs Parliament elections, encourage a Europe-wide debate already now some EUR 800 billion in Europe every year. and ultimately improve voter turnout. The Commission is Deciphering how our brain works is good for our health, also calling on Member States to agree on a common our society and our industrial competitiveness. It also has

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voting date for the elections, traditionally spread out over extent to which older people can realise their full a period of four days. potential in terms of employment, participation in social and cultural life and independent living. It also measures The 2014 European elections will be the first to be held the extent to which the environment they live in enables under the Lisbon Treaty, which enhances the role of seniors to lead an active life. citizens as political actors in the EU. The Treaty also strengthens the powers of the European Parliament, The website is open to all and will be continuously consolidating its role as co-legislator and giving it updated with the latest information available. It includes a additional responsibility: it elects the President of the special introductory policy brief, information on the AAI Commission on the basis of a proposal by the European conceptual framework, methodology and results. It also Council taking into account the results of the European provides potential users with access to an excel file that elections. contains detailed data sets for EU Member States. The Commission will put forward its proposals for Treaty The AAI is a product of a joint project undertaken in 2012 changes in time to allow a real debate on the future of by the European Commission Directorate General for Europe before the elections. Employment, Social Affairs and Inclusion together with the Population Unit of the UNECE and the European http://europa.eu/rapid/press-release_MEMO-13-202_en.htm Centre for Social Welfare Policy and Research in Vienna.

http://ec.europa.eu/social/main.jsp?langId=en&catId=89&newsId=1837&furt herNews=yes http://www1.unece.org/stat/platform/display/AAI/Active+Ageing+Index+Ho me www.alzheimer-europe.org/Donation 25 March: EMA Management Board welcomes 13 March: European Parliament proposes reforms new civil-society members to allocation of seats after 2014 On 25 March, the European Medicines Agency’s On 13 March, Members of the European Parliament Management Board welcomed four new civil-society backed the overall reform of the EU voting system at a members as full members. plenary sitting. This reform was needed because of Nikolaos Dedes (European AIDS Treatment Group) and Dr. Croatia's entry into the EU in summer 2013. The new W. Wientjens (International Diabetes Federation Europe) Croatian MEPs will cause the Parliament to exceed the will represent patient organisations. limit of 751 MEP seats specified in the Lisbon Treaty. Dr. Wolf-Dieter Ludwig (Standing Committee of European During the plenary session, MEPs agreed that reallocation Doctors) and Dr. Christophe Hugnet (Federation of of seats per Member State should be viewed in two steps: Veterinarians of Europe) will represent healthcare • reallocation should be done in line with the principle professionals. They all have a three-year mandate. of degressive proportionality and with due respect to www.ema.europa.eu/ema/index.jsp?curl=pages/news_and_events/news/20 the lower (6 MEPs/Member State) and upper (96 13/03/news_detail_001749.jsp&mid=WC0b01ac058004d5c1 MEPs/Member State) limits set by the Lisbon Treaty. 26 March: Commission answers question on costs • a political compensation between the gains and incurred by people with disabilities losses, according to the principle that no-one gains and no-one loses more than one seat. On 26 March, the European Commission answered a question from Adam Kosa, MEP (Hungary) and Chair of They also noted that the future system of the distribution the EP Intergroup on Disability. His question dealt with of seats among Member States in the European the additional costs incurred by people with disabilities; it Parliament must be transparent, based on objective was raised in relation to the EP Resolution of October criteria and decided in conjunction with the reform of the 2011 on mobility and inclusion of people with disabilities voting system in the Council. and the European Disability Strategy 2010–2020. This This proposal now goes to the heads of state and states that people with disabilities face additional costs in government in the European Council, who must decide by their daily lives, which has a considerable impact on their a unanimous vote. quality of life. www.europarl.europa.eu/news/en/pressroom/content/20130308IPR06302/ Mr Kosa asked the Commission to present the average html/EP-seats-after-2014-elections-no-member-state-to-lose-more-than-one- extra costs incurred by people with disabilities in each MEP disability category (sight or hearing impairment, reduced 15 March: Active Ageing Index is now available mobility, mental disability, autism, etc.) in order to clarify online the magnitude of the expenses incurred in each Member State to decision makers in the context of the fight against On 15 March, the European Commission (DG poverty. Employment, Social Affairs and Inclusion) and the United Nations Economic Commission for Europe (UNECE) The reply came from Viviane Reding, Commissioner for published the Active Ageing Index (AAI) on a dedicated Justice, Fundamental Rights and Citizenship. She stated website. that the Commission recognised that many persons with disabilities are facing additional costs in their daily lives as The AAI is a statistical tool that offers national and a consequence of their disability. The Commission does European policy makers a way to measure the untapped not have detailed data about such extra costs. She added potential of seniors in the EU and beyond. It measures the

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that one can safely assume that there will be a great Hübel stressed the importance of adapting the way we variety in the levels of costs depending on the nature of think about dementia. He added that the Commission the disability, its degree and also the personal living intends to leverage the results of the ALCOVE project to circumstances including the place of residence. This will benefit all EU citizens, including those living with make it a complex exercise to calculate meaningful dementia. The next speakers were Prof Alistair Burns, average data on this subject as a basis for policy making in National Clinical Director for Dementia in the UK and Dr. the context of the fight against poverty. The direct Jean-Yves Graal, France's National Chief Medical Officer competence for such policy lies with the Member States. and representative of the French Ministry of the Elderly The Commission does not know whether any Member and Autonomy. They closed the opening session with an State or any organisation active in the field of disabilities overview of how ALCOVE would help to address the possesses this kind of aggregated data. dementia challenges in their respective countries. 28 March: ALCOVE project holds final conference The morning session was co-chaired by Dr. Armelle Leperre-Desplanques, ALCOVE project leader and Manager of the Department of Pilot Programmes at the French Ministry of Health, along with Dr. Michal Novak, Professor of Neuroscience, Immunology and Microbiology at the Institute of Neuroimmunology of the Slovak ALCOVE, the two-year Joint Action on Alzheimer Academy of Science. This session featured four Cooperative Valuation in Europe, held its final conference presentations that described the project methodology on 28 March in Paris. and the results of the first two work packages: The project brought together 30 partners from the health 1. The challenges of dementia and scientific authorities of 19 countries. Their aim was to improve knowledge on dementia and its consequences, as 2. ALCOVE general presentation well as promote the exchange of information to preserve health, quality of life, autonomy and dignity of people 3. Understanding prevalence & epidemiological living with dementia and their carers in Europe. ALCOVE data about dementia was funded by the European Commission's Public Health 4. Quality & timeliness of dementia diagnosis. Programme and dealt with four main issues: In the afternoon, delegates heard the results of the • Epidemiological data on dementia: improving remaining work packages and participated in a lively Q&A knowledge on dementia, including prevalence, session with the panel experts. The afternoon session available data and best practices for data collection. was chaired by Dr. Carlos Segovia, Deputy Director of the • Early dementia diagnosis: exploring operational International Research Programmes and International criteria in health care systems for timely dementia Relations Department of Spain's Instituto de Salud Carlos diagnosis in ambulatory and nursing home settings. III. The presentations were: • Support systems for behavioural and psychological 1. Strategy for behavioural and psychological symptoms of dementia (BPSD): improving knowledge symptoms of dementia of the availability and efficacy of BPSD management at home, in hospitals and in care homes. 2. Ethical & legal issues for advanced directives & • Rights, autonomy and dignity of people living with competence assessment in dementia dementia: improving the basic rights of people living 3. Contribution to safety: the ALCOVE toolbox for with dementia, with a focus on advance declarations antipsychotics limitation in dementia. of will and competence assessments. The afternoon session concluded with a presentation by The project also explored ways to prevent the excessive Jürgen Scheftlein from the European Commission's prescription of psychotropic drugs to people with Directorate General for Health & Consumers. Mr dementia. Scheftlein expressed his appreciation to all of the project During the conference, some 200 delegates heard the team members, saying that the Commission would be results of the seven work packages and received the final very pleased with the results of the project. He added that report and a list of recommendations. In addition, a panel this work must continue and invited delegates to identify of six dementia experts provided insights and answered topics that could be included in a follow-on project to questions throughout the day. ALCOVE. The conference was opened by Jean-Paul Delevoye, The final ALCOVE Report, the List of Recommendations President of France's Economic, Social and Environmental and various videos can be found on the project website. Council and Dr. Jean-Luc Harousseau, President of the French National Authority for Health. They welcomed the delegates and explained that efforts such as ALCOVE are invaluable, because dementia is a problem with social, economic and medical aspects - as well as a major challenge for public health policy. They were followed by Michael Hübel, Head of Programmes & Knowledge management, Directorate General Health & Consumers, European Commission. Mr www.alcove-project.eu/images/pdf/ALCOVE_SYNTHESIS_REPORT_VF.pdf

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www.alcove-project.eu/images/alcove-recommendations.pdf The draft text states that the Social Economy represents www.alcove- project.eu/index.php?option=com_content&view=article&id=114&Itemid=21 5.64% of Portugal's GDP and 4% of employment. This is 7 based on a social network of nationwide coverage. There has clearly been growth in economic and business Policy Watch activities, mainly fuelled by associations of persons who, in accordance with participatory and social principles, 5 March: Slovenia adopts guidelines for a national direct their activities to their members' collective interest dementia plan and to the general interest. However, the Social Economy has not yet succeeded in getting the status it deserves. On 5 March, Minister of Health Tomaž Gantar officially approved the document Alzheimer Portugal welcomes this initiative as an that will be the basis of Slovenia's important step towards the recognition of the social national dementia plan. sector as a key sector for the social cohesion and as a response to the crisis. This document will guide the activities of a new, dedicated Dementia Working Group within the Ministry. Members’ News The working group consists of ten people, including Dr. Aleš Kogoj (President of Alzheimer Slovenia- Spomincica), 27 February: Romanian Alzheimer Society holds Ms Štefanija Lukič Zlobec (Vice President), Dr. Gorazd annual National Alzheimer Conference Bernard Stokin and Dr. Tatjana Cvetko. The Romanian Alzheimer Society held its 13 March: FDA will relax rules to approve annual National Alzheimer Conference dementia drugs between 27 February and 2 March in Bucharest. The American Food and Drug Administration (FDA) is studying plans The conference was themed "Dementia - between to loosen the rules for approving new Demographic and Economic Crisis" and included the treatments for Alzheimer's disease. following workshops:

Under the new rules, drugs in clinical trial would qualify • "Rights of dementia patients": coordinated by Helga for approval if people at very early stages of the disease Rohra (Chair of the European Working Group of subtly improved their performance on memory or People with Dementia) and Maria Moglan (Romanian reasoning tests, i.e. before they developed any obvious Alzheimer Society). impairments. Moreover, companies would not have to • "Memory Centre: Comparison between Sweden and show that the drugs improved daily, real-world Romania" - coordinated by Dr. Simona Săcuiu and functioning. Currently, drug approval requires proof of Maria Moglan. improvement in physical activities as well as cognitive performance. • "Social Deconstruction of Abuse Toward Old People in The Post-Modern and Global Society" - coordinated The proposal was published by the FDA in The New by Dr. Radu Vrasti. England Journal of Medicine (NEJM), following the • Book Launch - “Stepping out of the Shadow’’ by Helga publication of a set of guidelines. Together, they intend to Rohra. explain the new perspective to a wider audience and to • National Alzheimer Alliance meeting: "Optimising the solicit comments from health professionals, industry and Patient’s Circuit in the Romanian Health System" - the public. coordinated by Dr. Catalina Tudose (President of the Dr. Nicholas Kozauer, co-author of the NEJM paper and Romanian Alzheimer Society). FDA clinical team leader in neurology products, said: “Our Delegates were also able to attend presentations such as goal was to provide as much regulatory clarity as possible. the following: We would encourage companies to start thinking along these lines.” In a separate statement, FDA spokeswoman • "Dementia: A Public Health Priority” - presented by Sandy Walsh said that the FDA is ready to move forward Marc Wortmann (Executive Director of ADI). with the plan. • ”Challenges Facing People with Dementia” - www.nejm.org/doi/full/10.1056/NEJMp1302513?query=featured_home presented by Helga Rohra. www.firstwordpharma.com/node/1064818 • “First Diagnosis in Alzheimer Dementia in Romania - 20 March: Portugal approves draft of the Social National Alzheimer Alliance Report” - presented by Economy law Dr. Cătălina Tudose. On 20 March, the Portuguese parliament The full conference programme can be found on website unanimously approved a draft basic law of the Romanian Alzheimer Society. on the Social Economy. www.alzcongres.ro/EN/ The law originates from a 2009 European Parliament resolution. This urged the Commission to promote the Social Economy in its new policies and to defend the concept of a different business approach, one whose main driver is social profitability rather than financial profitability.

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28 February: Greece holds 8th Conference of Alzheimer’s Disease and Related Disorders The 8th Pan-Hellenic Interdisciplinary Conference of Alzheimer’s Disease and Related Disorders took place in Thessaloniki, Greece on 28 February- 3 March 2013. The conference was organised by The Pan-Hellenic Institute of Neurodegenerative Disorders and the Greek Association Photo: Daciana Sarbu, MEP (Romania) and Helga Rohra of Alzheimer’s Disease and Related Disorders. (EWGPWD) More than 300 delegates attended the three day event, 28 February: Alzheimer Society of Ireland creates a including academic and medical professionals from around the world and representatives of the Greek Working Group of People with Dementia dementia associations. A series of roundtables and poster The Alzheimer Society of Ireland has sessions provided for some 170 presentations on the established the first Irish Working Group latest developments in medical treatments, non- of People with Dementia. The purpose of pharmacological interventions and prevention, as well as the Working Group is to explore ways to sharing best practice and advice on care. This included promote and encourage the direct presentations of researchers and scientists from Belgium, involvement of people with dementia in its work and to France, Ireland, Poland, Portugal, Sweden, Turkey and the ensure that the voice of people with dementia influences UK. the public policy that impacts on their lives. The number of Greeks with The establishment of the Working Group comes at a dementia has been rising quickly crucial time as Ireland prepares to develop a National over the last few years - and so Dementia Strategy. It will be critical that the voice of have the effects of the economic people with dementia is heard through the National crisis. Looking ahead, the organisers Dementia Strategy and in the planning of service provision expressed the need to maintain and for the future. further develop the current services to improve the quality of life for people with dementia and their Maurice O’Connell, CEO of The Alzheimer Society of caregivers. This is particularly urgent, as harsh recovery Ireland, says that it is only by gathering information from measures are placing even basic care services at risk. people that are directly affected by the condition, that the full potential of a national approach to dementia service After the conference, all of the Board members, planning can be realised. employees and volunteers of the Pan-Hellenic Institute of Neurodegenerative Disorders and the Greek Association He added: “Over the past number of years we have been of Alzheimer’s Disease and Related Disorders expressed working tirelessly to enable the voice of the person living their commitment to achieve a better quality of life for with dementia and their carer. This includes a major people with dementia. public awareness and anti-stigma campaign which promoted the early signs and symptoms of Alzheimer’s and dementia in order to encourage people to seek an early diagnosis. "We are pleased to announce that this work has culminated in the establishment of the first National Working Group for People with Dementia in Ireland. 2 March: Flemish Alzheimer association holds Through our work we have met some extraordinary people living with dementia who want to get more event for children of young parents with dementia involved in having their voice heard. We want to harness On 2 March, the Vlaamse this willingness and motivation and grow it through the Alzheimer Liga organised an National Working Group. The rights and the voice of all-day workshop called people with dementia have been neglected in the past "Dad forgets, Mom does and we need to address this.” not remember who I am" for children of people with Mr Dermod Slevin participated in the first meeting of the early-onset dementia who are younger than 65. According Working Group for People with Dementia and he to the Liga, there are 6,000-20,000 Belgian children and emphasises why it is important for him to be involved. young people living in homes where one parent has “The group has given me an insight into other peoples developed an early form of dementia. experience and also a sense of purpose and confidence. In comparison with dementia at an older age, early onset You are talking to others who understand and who are dementia affects families in the prime of their lives. A going through the same experiences,” he says. Mr Slevin young person with dementia may have school-going is also a member of the European Working Group of children, a working spouse and parents that are still living. People with Dementia. He/she could still be working when diagnosed and The first meeting of the Irish group was held in late physically very fit. February and the next one is planned for May 2013.

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A dementia diagnosis can often disrupt family life and when dealing with personal finances and explore ways to routines, especially for the younger members. One make the banking sector more dementia friendly. participant said: “Now that my mother suffers from early onset dementia, I am expected to adapt myself to her Today’s launch of the top tips should encourage people new behaviour. And this demands patience, creativity, living with dementia, their family members and carers to courage and flexibility. Sometimes I don’t know what to think about what they need to do to future-proof the do anymore, all these changes drive me crazy and I ask management of their finances. The top tips include myself: how do other kids deal with this?” information from arranging a power of attorney and applying for the correct benefits, to organising bank The workshop attracted 21 participants aged 12-35 and accounts and preventing salesmen from calling. included a presentation about new or different ways of dealing with the parent's behaviour. The young delegates Over the course of the partnership Lloyds Banking Group heard about successful existing techniques and also hopes to raise at least £2 million (EUR 2.3 million) to fund proposed new ideas of their own. They also participated "Live Well" - Alzheimer Scotland’s and Alzheimer’s in an interactive session where everyone shared their Society’s first UK-wide support programme for people experiences and assisted in preparing their dessert with dementia and their carers. course. Glenda Mackenzie, Deputy Director for Fundraising at The participants were very pleased to attend this event Alzheimer Scotland said: "One of Alzheimer Scotland’s key and everyone seemed to enjoy it. The organisers have aims is to ensure that people with dementia and their taken note of the many ideas that were proposed and are families are given all the information and the support they now discussing further initiatives. need to make important early decisions about their finances. Coming to terms with dementia is a difficult 3 March: Alzheimer Scotland supports quilt process – planning for the future shouldn’t be. project in the Parliament "We are delighted to be working with Lloyds Banking On 3 March, Ann Hill, Alzheimer Scotland's Group for the next two years. The money raised will Quilter-in-Residence, held an exhibition of enable us to improve the lives of thousands of people quilts at the Scottish Parliament. This was with dementia and carers across the country." part of the "Yes we can - together" project campaign led by Ann Hill. This project has involved Ann working with people with dementia, their carers, partners and families to create quilts that convey emotive and poignant experiences from their lives. www.alzheimer-europe.org/Donation The exhibition was very popular and Ann was made very 14 March: German Alzheimer Society launches welcome by everyone who works in the Parliament new website building, including First Minister Alex Salmond (pictured with Ann). The display is just a small selection of the On 14 March, the German Alzheimer thousands of quilts she has received during the project. Society launched a new version of its website to provide easier operation and Henry Simmons, Chief Executive of Alzheimer Scotland greater clarity. The revised design said: "Ann’s work has been a real inspiration to us at features simpler menus and a new arrangement of Alzheimer Scotland. Quilting has proved to be a truly content that will allow quicker access to information. meaningful and emotional way of connecting with people affected by dementia and we are extremely happy to be The new homepage also carries a new short film about involved in the ‘Yes we can – together’ project." the work of the Society. This includes providing contacts

www.annhillquilter.co.uk/alzheimer-quilt-project.html for people with dementia and their families, hosting groups for sharing and support and various other relief and support services.

www.deutsche-alzheimer.de www.youtube.com/watch?v=wx_ZrRquVAE 19 March: New alliance helps people with dementia to stay at home A new alliance in the UK & Ireland has launched a two year campaign to help 9 March: Lloyds Bank gives money tips to people people with dementia stay at home rather than move into a care home. The with dementia alliance members are Alzheimer On 9 March, Lloyds Banking Group released a set of Scotland, the Alzheimer Society of money management tips for people with dementia and Ireland and the UK Alzheimer's Society, along with retail their carers to kick-start its two year charity partnership chains Argos and Homebase. with Alzheimer Scotland and the UK Alzheimer's Society. The alliance members call on people living with dementia The charities and the bank will tackle some of the to seek support early, in order to remain living in the problems faced by people with dementia and their carers comforts of their own home and their community. They will conduct various awareness and fundraising

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campaigns, starting with a new set of tips for living well limitations of legal and family representatives of people with dementia at home. This was published on 19 March with dementia as regards euthanasia. and covers everything from contacting social services to ways to make everyday life easier. LINAL holds that people with dementia have the same rights as any other citizen. However, this is not always Jeremy Hughes, Chief Executive at Alzheimer’s Society borne out by the current law and the paper gives specific said: "Home means something special to all of us. Many recommendations on how to address these discrepancies. people living with dementia have been forced to leave These include amendments to the law but also quicker their safe-havens which is unacceptable. By seeking and clearer responses from lawmakers: the paper support early, people living with dementia may avoid concludes that LINAL would prefer to see more concrete reaching a crisis point unnecessarily which results in them efforts to improve the living conditions of people living moving in to long term care. The money raised through with dementia - rather than endless debates about this partnership with Argos and Homebase will help us whether their rights are being respected. enable them to live at home for longer, maintaining the www.alzheimer-belgium.be lifestyle and independence which makes them who they are." 28 March: James McKillop receives an honorary

www.alzheimers.org.uk/hometips Doctorate 20 March: Royal couple visits Luxembourg nursing Mr James McKillop, founder of the Scottish home Dementia Working Group (SDWG), has been awarded an honorary Doctorate from Hereditary Grand Strathclyde University in Glasgow. Duke Guillaume of Luxembourg and his SDWG is a national campaigning group run wife, Grand Duchess Stephanie, recently visited the "Beim by people with dementia. It acts as the Goldknapp" nursing home that is operated by ALA, the independent voice of people with dementia within Luxembourg Alzheimer Association. Alzheimer Scotland. The Working Group campaigns to improve services for people with dementia and to The royal couple toured the home and attended a improve attitudes towards people with dementia. presentation about ALA's activities around the country. They also donated a new car to the care home, on behalf James' honorary degree has been awarded for his work in of the benevolent "Fondation du Grand-Duc et de la establishing the group and helping to make it an effective Grande-Duchesse". advocate of people with dementia in Scotland. In 2001, James, diagnosed with vascular dementia, and Heather Wilkinson, Social Researcher, met to discuss why there was no support group for people with dementia, similar to the group for carers. The next year, Heather and James organised a successful conference that attracted both professionals and people with dementia. They endorsed the idea for a group for people with dementia. The SDWG was established soon thereafter, with James as the first Chairperson. In 2003, the Group accepted an invitation to work under the umbrella of Alzheimer Scotland, but retained its freedom and independence to determine its own agenda. www.wort.lu/de/view/guillaume-und-stephanie-besichtigen-altenheim- 5149954ee4b0246d64a9bde3 James chaired the Group with great success from 2002 until 2008. He 20 March: Belgium's LINAL debates euthanasia in remains an active member of the the Senate Group and an inspiration to all that Sabine Henry, President of Belgium's meet him. His graduation ceremony will take place in LINAL (Ligue Nationale Alzheimer Liga), November 2013. The Group is incredibly proud of him and recently attended a debate in the Belgian James is well deserving of this achievement. Senate about amendments to the www.sdwg.org.uk country's euthanasia laws. She presented a LINAL position paper on various aspects of the law that apply to people with dementia. The paper highlights several discrepancies in the law that exclude people with dementia from the euthanasia decision process. It also shows cases where these people www.alzheimer-europe.org/Donation have unequal or non-existent access to euthanasia, even if they specifically request it. The paper examines the seeming contradiction that wills and other "future documents" written by people before developing dementia may not be honoured or accepted. Finally, the position paper explores problems with the roles and

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In Europe, the medication-error rate in primary care is Science Watch estimated at 7.5% at prescription and 0.08% at the 21 February: EMA approves 3 memantine generics dispensing stage, whereas in the hospital setting the rates vary between 0.3–9.1% and 1.6–2.1% respectively. Current EU pharmacovigilance legislation provides a clear legal framework for sharing data on medication errors

causing harm. Since July 2012, it has required reporting of On 21 February, the European Medicines Agency (EMA) all suspected adverse drug reactions resulting from approved three versions of memantine generics based on medication errors to EudraVigilance, the EU database of Ebixa. Nemdatine, which is marketed by Actavis Group, adverse drug reactions. received approval for 5, 10, 15 and 20mg tablets. www.ema.europa.eu/ema/index.jsp?curl=pages/news_and_events/news/20 Memantine Mylan is marketed by Generics (UK) and saw 13/03/news_detail_001729.jsp&mid=WC0b01ac058004d5c1 approval for 10 and 20mg tablets. Memantine LEK also http://eudravigilance.ema.europa.eu/human/index.asp received approval for 10 and 20mg tablets and is marketed by Pharmathen. 5 March: Study shows that good nutrition reduces depression rates An additional generic version was approved on 21 March: Memantine ratiopharm, marketed by Ratiopharm, A recent study from Taiwan shows lower levels of received approval for 5, 10, 15 and 20mg tablets. depression in institutionalised dementia patients who received individual instruction on good eating habits. www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicine s/002680/smops/Positive/human_smop_000482.jsp&mid=WC0b01ac058001 The study was led by Professor Li-Chan Lin from National d127 www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicine Yang-Ming University and Assistant Professor Hua-Shan s/002660/smops/Positive/human_smop_000483.jsp&mid=WC0b01ac058001 Wu from Chung Shan Medical University. They explained d127 that people with dementia often miss out on proper www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicine s/002630/smops/Positive/human_smop_000484.jsp&mid=WC0b01ac058001 nutrition. Identifying foods, transferring foods, chewing d127 and swallowing all become progressively more difficult for www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicine people with cognitive problems. Furthermore, previous s/002671/smops/Positive/human_smop_000486.jsp&mid=WC0b01ac058001 d127 studies have linked poor nutritional status to depression, both in healthy adults and those with dementia. 1 March: Elan begins recruitment for a trial on agitation and aggression in Alzheimer’s disease In this six month study, 90 participants were divided into three groups. The first group received individualised Irish biotech company Elan Corporation has begun instruction at regular intervals. A second group also recruitment for a new clinical trial that will study agitation received the same instruction, but at varying intervals and aggression in around 400 people with moderate to dependant on their learning speeds. The third group severe Alzheimer’s disease (AD) over 12 weeks. consisted of controls who did not receive any individual instruction. The phase 2 trial, entitled "Harmony AD", will evaluate the efficacy, safety and tolerability of Elan's oral The results showed significant increases in Mini- compound ELND005, which has scyllo-Inositol as its active Nutritional Assessment scores and body mass index for ingredient. the first and second groups. These groups also showed significant reductions in their Cornell Scale for Depression In previous studies, ELND005 has been shown to inhibit in Dementia scores. The lead researchers said: "The the aggregation of beta amyloid in the brains of mouse improvement in nutritional status may have led to models - and also acted to reduce the levels of myo- reduced fatigue and increased vitality. Once the inositol. This is a chemical found in excess quantities in participants perceived the improvements in their health, certain neurological and psychiatric diseases including AD. pessimism, the sense of multiple illnesses, hopelessness, Finally, Elan has stated that oral ELND005 demonstrated a or even worthlessness seldom emerged." biological effect on beta amyloid in human cerebrospinal fluid (CSF) during a 2010 phase 2 study. http://onlinelibrary.wiley.com/doi/10.1111/jan.12097/abstract

http://clinicaltrials.gov/ct2/show/NCT01735630?term=ELND005&rank=5 5 March: The Human Connectome Project is creating a new brain map 3 March: EMA aims to reduce medication errors Scientists from The Human Connectome Project have The European Medicines Agency (EMA) recently held a published a series of brain scan images that are the most workshop to improve the reporting and prevention of detailed ever produced. This project aims to map all of the medication errors, the single most common preventable neural pathways that underlie brain function and cause of adverse events in medication practice behaviour. These errors are a major public-health burden with an Deciphering this large and complex wiring diagram is estimated annual cost between EUR 4.5 and 21.8 billion. expected to advance knowledge of brain connectivity, its Medication errors refer to mistakes in the processes of relationship to behaviour and the contributions of genetic prescribing, supplying, dispensing, preparing, and environmental factors to individual differences in administering or monitoring medicinal products in clinical brain circuitry and behaviour. In simpler terms, it will practice. reveal much about what makes us uniquely human and what makes each person different from others.

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Researchers are mapping the brains of 1,200 healthy reduces the number of brain capillaries and also plaque adults using four non-invasive neuroimaging techniques: buildup in mouse brains. resting-state functional MRI (rfMRI) and diffusion imaging (dMRI) both provide information about brain connectivity. This follows recent UBC research that showed a near Task-evoked fMRI examines brain function and structural doubling of blood vessels in the brains of mice and MRI captures the shape of the cerebral cortex. In addition, humans with Alzheimer's disease. This seems to be a a behavioural data will provide the basis for relating brain compensatory response to impaired cerebral blood flow. circuits to individual differences in cognition, perception, It suggests that neoangiogenesis - the formation of new and personality. Finally, 100 participants will be studied blood vessels - is a key mechanism underlying plaque using magnetoencephalography (MEG) and formation. electroencephalography (EEG). The scientists were headed by Prof Wilfred Jefferies, a Connectome is an international consortium led by researcher at UBC. He said: "The discovery provides Washington University and the University of Minnesota further evidence of the role that an overabundance of and is funded by the American National Institutes of brain blood vessels plays in AD, as well as the potential Health (NIH). European partners include Oxford efficacy of amyloid beta as basis for an AD vaccine. University, Warwick University and Radboud University in "Now that we know blood vessel growth is a factor in AD, the Netherlands. if follows that drugs targeting blood vessels may be good All datasets and images are freely available to the candidates as an AD treatment." scientific community on the project website. www.nature.com/srep/2013/130228/srep01354/full/srep01354.html http://humanconnectome.org/ 11 March: Sleeping drug helps memory 6 March: New scan technique finds AD risk factor consolidation in healthy brains Sleep researchers at the University of California (UC) have A UCLA study team led by Dr. Paul Thompson, Professor confirmed the mechanism that enables the brain to of Neurology, has identified the SPON1 gene variant as a consolidate memory and found that the sleeping drug new genetic risk factor for Alzheimer's disease. zolpidem enhances the process. The team screened DNA samples from more than 1,000 Previous research had found a correlation between sleep healthy people, looking for genetic code variations that spindles - bursts of brain activity that last for a second or might raise their future risk for developing dementia. less during a specific stage of sleep - and consolidation of These people were also tested with the new memories that depend on the hippocampus. The "Connectome" scan, which measures water diffusion in hippocampus is important in the consolidation of the brain and maps the strength of cerebral connections. information from short-term to long-term memory. It is More specifically, the scan provides images of the brain's also one of the first regions of the brain to suffer damage circuit pathways and how information is routed along from Alzheimer’s disease. these pathways. The current study demonstrated the critical role that When researchers combined these images with the sleep spindles play in consolidating memory in the screening results, they determined that people with the hippocampus. It also showed that drugs can significantly SPON1 variant had weaker connections between the brain improve that process, far more than sleep alone. areas controlling reasoning and emotion. Alzheimer's A total of 49 men and women between the ages of 18 and disease further erodes these connections, making SPON1 39 who were normal sleepers were given varying doses of a clear risk factor. zolpidem or sodium oxybate and a placebo. Researchers Dr. Thompson said: "Much of your risk for disease is monitored their sleep, measured sleepiness and mood written in your DNA, so the genome is a good place to after napping and used several tests to evaluate their look for new drug targets. If we scan your brain and DNA memory. They found that zolpidem significantly increased today, we can discover dangerous genes that will the density of sleep spindles and improved verbal undermine your ability to think and plan and will make memory consolidation. you ill in the future. If we find these genes now, there is a The research team was led by Dr. Sara Mednick, a UC better chance of new drugs that can switch them off psychologist who said: “We found that a very common before you or your family get ill." sleep drug can be used to increase verbal memory. This is www.pnas.org/content/early/2013/02/28/1216206110 the first study to show you can manipulate sleep to improve memory. It suggests sleep drugs could be a powerful tool to tailor sleep to particular memory disorders.” Zolpidem is marketed by Sanofi-Aventis as Ambien. www.alzheimer-europe.org/Donation www.jneurosci.org/content/33/10/4494.abstract 11 March: Aβ immunisation reduces blood vessels 11 March: Clinical trial shows small memory and plaque improvement A research team from the University of British Columbia A recent phase 2 trial of the compound ORM-12741 (UBC) has developed an immunisation protocol that showed a slight improvement in overall memory.

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The trial included 100 people with moderate Alzheimer's and package leaflet of all medicines from September as disease who took memantine plus ORM-12741 or placebo well. over a three month period. The people who took the placebo saw an average 33% decline in memory test The EMA will publish a list of medicines that will need to scores, while those who took the new compound carry this symbol within the next few months. It will improved their scores by 4%. include all medicines that contain a new active substance and all biological medicines authorised after 1 January ORM-12741 is an adreno-receptor antagonist, meaning 2011, medicines for which certain additional information that it acts to reduce activity in the parts of the brain that is required after authorisation and medicines subject to respond to the release of adrenaline. In earlier studies, conditions or restrictions on their safe and effective use. Alzheimer rodent models treated with the compound www.ema.europa.eu/ema/index.jsp?curl=pages/news_and_events/news/20 appeared to improve their memory and ability to 13/03/news_detail_001740.jsp&mid=WC0b01ac058004d5c1 function. 20 March: Oleocanthal improves amyloid The trial was conducted by Finland's Orion clearance in mouse models Pharmaceuticals and led by Dr. Juha Rouru, MD. She said: "The results of the study were clearly positive. The Oleocanthal, a component of extra-virgin olive oil, has beneficial effects were seen particularly on episodic been recently linked to reduced risk of Alzheimer’s memory, which is one of the most important functions disease in two different mouse models. affected by Alzheimer's disease. In addition, caregiver distress was significantly relieved." Previously, this benefit was attributed to the monounsaturated fats in the oil. In this study, researchers These study results were released ahead of their from the University of Louisiana at Monroe (ULM) showed presentation at the American Academy of Neurology that oleocanthal acted to decrease the accumulation of (AAN) 65th Annual Meeting. beta amyloid in the brains of mouse models. www.aan.com/press/index.cfm?fuseaction=release.view&release=1158 Specifically, the presence of oleocanthal boosted the 14 March: Chronic stress increases dementia risk production of P-glycoprotein (P-gp) and LDL lipoprotein receptor related protein-1 (LRP1). Both of these proteins in mice act as garbage trucks, carrying excess amyloid beta out of A new doctoral thesis shows that chronically elevated the brain. levels of the stress steroid allopregnanolone accelerate He study was led by Dr. Amal Khalil Kaddoumi, Assistant the development of Alzheimer's disease. It also Professor of Pharmaceutics at ULM and lead author of the demonstrates that high levels of beta-amyloid correspond paper. She said: "Extra-virgin olive oil-derived oleocanthal to brain synapse dysfunction. associated with the consumption of Mediterranean diet The thesis was written by Ms Sara Bengtsson, a Ph.D. has the potential to reduce the risk of AD or related candidate at Sweden's Umeå University. In her study, neurodegenerative dementias." mice which were given elevated levels of http://pubs.acs.org/doi/abs/10.1021/cn400024q allopregnanolone were compared with those given a placebo. The results showed that 41% of the mice given 21 March: Piramal seeks authorisation to market the placebo exhibited an impaired memory, compared to [18F] florbetaben 79% of the mice which were given high levels of the stress Piramal Imaging, a spinoff company of the Piramal hormone. pharmaceutical group, has submitted applications to the http://urn.kb.se/resolve?urn=urn:nbn:se:umu:diva-66572 EMA and FDA for authorisation to market [18F] 15 March: New EMA symbol will tag drugs needing florbetaben, a PET amyloid imaging agent. Florbetaben is used in the visual detection of beta amyloid in the brains further approval of adults with cognitive impairment who are being On 15 March, the European evaluated for Alzheimer’s disease and other causes of Medicines Agency (EMA) updated cognitive decline. its product information template These applications are based on a successful clinical with a new symbol to label programme, including a phase 3 trial. This trial was the medicines subject to additional first to make a direct comparison between in-vivo PET monitoring and encourage adverse-reaction reporting. imaging of the brain using florbetaben and post-mortem This template is used by companies to create product analyses of brain tissue. The study confirmed that information for medicines marketed in the EU. The florbetaben binds to beta amyloid in the brain at the revised template includes a black inverted triangle, which regional level and is useful for Alzheimer’s disease all medicines subject to additional monitoring will have to diagnosis. include in their summary of product characteristics and www.aan.com/globals/axon/assets/9547.pdf package leaflet from September 2013. www.piramal.com/sites/default/files/pdf/pi-florbetaben-FDA-Eng.pdf The updated product information also encourages 25 March: Sleep disorder may signal dementia patients and healthcare professionals to report adverse with Lewy bodies reactions and specify the different ways to report. This text will appear in the summary of product characteristics A new study shows that REM sleep behaviour disorder (RBD) greatly increases the likelihood of developing

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dementia with Lewy bodies in men who already have risk 29 March: Carmustine reduces amyloid beta in factors of the syndrome. mouse models RBD sleep behaviour disorder is when the brain is in REM Researchers from Florida's Torrey Pines Institute for (rapid eye movement) sleep but the body moves to act Molecular Studies have shown that carmustine, a cancer out dreams in the form of kicking, jumping and other drug, can decrease the amount of amyloid beta and motions. reduce the number of amyloid plaques in Alzheimer's The study included 75 people who had "probable" mouse models. diagnoses of dementia with Lewy bodies. Researchers The study arose when scientists noticed that people with conducted MRI brain scans on the study participants and cancer tended not to get Alzheimer's disease and vice analysed their sleep history to see if they had experienced versa. The research team screened a library of all FDA RBD. They found a strong association between having the approved cancer drugs for their ability to reduce amyloid sleep disorder and having a definite dementia diagnosis. beta levels in cells expressing amyloid precursor protein. The association was particularly strong among men and The results showed that carmustine decreased the significantly lower among women. conversion of precursor protein to amyloid β levels by The research project was led by Dr. Melissa Murray, 60%. When tested in a mouse model, long term treatment Neuroscientist at Florida's Mayo Clinic. She said: with carmustine was able to reduce amyloid beta levels by "Screening for the sleep disorder in a patient with 75%. dementia could help clinicians diagnose either dementia The team was led by Dr. Madepalli Lakshmana, who said: with Lewy bodies or Alzheimer's disease. It can sometimes "The level of carmustine needed to achieve reduction in be very difficult to tell the difference between these two amyloid β is much lower than the dose already used in the dementias, especially in the early stages, but we have treatment of some types of brain cancer. Also carmustine found that only 2 to 3 percent of patients with does not appear to act by activating microglia or by Alzheimer's disease have a history of this sleep disorder." blocking secretases which reduces possible side effects This study was presented at the 2013 annual meeting of seen with other anti-amyloid investigational new drugs. the American Academy of Neurology. While more work still needs to be done carmustine appears to be a powerful candidate drug for treatment www.abstracts2view.com/aan/view.php?nu=AAN13L_S44.006&terms= and prevention of Alzheimer's disease."

26 March: Lundbeck and Otsuka will develop a www.biomedcentral.com/1741-7015/11/81/abstract new AD drug Pharmaceutical firms Lundbeck and Otsuka will jointly develop and commercialise Lu AE58054, a Lundbeck compound for the treatment of Alzheimer's disease. www.alzheimer-europe.org/Donation A Lundbeck press release reveals that the clinical programme will begin in 2013, involving several trials and Dementia in Society more than 2,500 participants. The first phase 3 study will test Lu AE58054 as an adjunct treatment to donepezil in 5 March: Alzheimer's disease is the UK's tenth people with mild-to-moderate Alzheimer's disease. cause of death Additional studies are expected to start towards the end of 2013. A recent study shows that Alzheimer's disease is now within the top ten causes of death in the UK. The disease In May 2012, it was announced that Lu AE58054 had met progressed from 24th place in 1990 to 10th place in 2010 its primary endpoint in a fixed dose, randomized, placebo- - and this movement is likely to continue. controlled, 24-week clinical study in 278 patients. The study was conducted in patients suffering from moderate Andrew Chidgey, director of external affairs at the UK Alzheimer's disease, with Lu AE58054 administered as an Alzheimer's Society, said the true number of deaths which add-on to donepezil, a commonly used are due to the disease could be even higher as it was acetylcholinesterase inhibitor. The clinical data from this often not recorded as a primary cause of death. He study will be presented at the annual Alzheimer's added: "These figures lay out the challenge that dementia Association International Conference (AAIC) in Boston on poses to the UK. In fact, as the condition is often not 13-18 July 2013. recorded as a cause of death, this may even be an understatement. Dementia is now one of the top ten, and Lu AE58054 is known as a selective 5-HT6-receptor fastest, rising causes of death." antagonist. It is primarily found in areas of the brain involved in cognition. The drug does not provoke a The results come from the "Global Burden of Disease biological response itself, but binds to a receptor and acts Study 2010", an analysis of worldwide data that compared as a catalyst to block the operation of the receptor. the UK to 14 other countries. More specifically, the report examines the patterns of health loss, the leading http://investor.lundbeck.com/releasedetail.cfm?ReleaseID=750931 http://investor.lundbeck.com/releasedetail.cfm?ReleaseID=677436 preventable risks that explain some of these patterns and how UK outcomes compare with a set of comparable countries in the EU and elsewhere in 1990 and 2010.

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Ms Howard works with people in all stages of dementia 1990 2010 and maintains that healing through words cannot be underestimated. She said: “So many people are saying 1 Heart disease Heart disease they want to be cared for and how to be cared for, that they are not listened to, that they are not heard. They are 2 Stroke Lung cancer saying ‘this is what I want. This is what I need'.” Susanna Howard is associated with "Living Words", an art 3 Lung cancer Stroke therapy programme that uses the spoken and written word to help people feel present in their lives, regardless 4 Respiratory infections Lung disease of circumstance.

http://livingwords.org.uk/home.htm 5 Lung disease Respiratory infections 26 March: New UK report urges parity for mental 6 Breast cancer Colorectal cancer health In a recent report, the UK Royal College of Psychiatry 7 Colorectal cancer Breast cancer (RCP) suggests that mental health should be given the same priority as physical health. 8 Self harm Self harm The report is entitled "Whole-person Care: from rhetoric to reality (Achieving parity between mental and physical 9 Road injury Cirrhosis health)". It explains that people with mental health problems frequently experience stigma and 10 Stomach cancer Alzheimer's disease discrimination, not only in the wider community but also from services. This is exemplified in part by lower http://download.thelancet.com/pdfs/journals/lancet/PIIS0140673613603554 treatment rates for mental health conditions and an .pdf?id=410a13c7e856fa01:17f39863:13da19b9e91:6b611364221569656 underfunding of mental healthcare relative to the scale and impact of mental health problems. 13 March: Sex "champions" will train UK care home staff There is an ambition for the NHS to put mental health on a par with physical health. However, the concept of parity A UK care provider called Family Mosaic has appointed in this context is not always well understood. In this sex "champions" to educate staff to see sex as a natural report, an expert working group defines ‘parity of esteem’ part of life for older people and those with disabilities. in detail, and examines why parity between mental and This training programme stems from a 2012 research physical health does not currently exist and how it might project which found that many older people are being be achieved in practice denied their basic right to have sex. This includes care Prof Sue Bailey, RCP President, said: "Much has been done home residents being unable to lock their doors and only to improve mental health in the last 10 years but it still being given single beds. The research project also found does not receive the same attention as physical health, that most care homes do not have formal policy and the consequences can be serious. People with severe guidelines or staff training aimed at allowing residents to mental illness have a reduced life expectancy of 15 to 20 continue being sexually active. The training programme years yet the majority of reasons for this are avoidable. will also aim to dispel the perception that older people are asexual. This can lead to older people's sexuality in "Achieving parity of esteem for mental health is care homes being overlooked and even discouraged. everybody's business and responsibility. I therefore urge the Government, policy-makers, service commissioners The training addresses the issues of the right to a sex life and providers, professionals and the public to always regardless of age, disability and sexuality, safeguarding think in terms of the whole person - body and mind - and issues and risk, professional boundaries and guidance on to apply a 'parity test' to all their activities and to their how to support people around sexual health issues. attitudes." www.guardian.co.uk/social-care-network/2013/mar/13/care-home-sex- www.rcpsych.ac.uk/usefulresources/publications/collegereports/op/op88.as champions px http://jme.bmj.com/content/early/2012/06/01/medethics-2011- 100453.abstract New Publications & Resources 23 March: UK poet uses words of people with 5 March: Eurostat publishes "Healthy life years in dementia 2011" Susanna Howard is a poet inspired by people with On 5 March, Eurostat, the statistical office of the dementia. She sits with them, notes any words they say European Union, published a report entitled "Healthy life and then composes poems with these words. years in 2011". The result of her work is an individual book that stays with The report shows that women and men in the EU 27 could her "subject". The book can be helpful to further bond the expect at birth to live 62 years in a healthy condition. At person with their carer and help a relative see the identity the age of 50, they could expect to live another 18 years of their loved one as they are now.

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in a healthy condition, while at the age of 65 they could residents and families - but also on seminars and reports expect to have an additional 9 healthy life years. from field teams. Among the Member States, Malta had the highest Results were gathered over several years and show a number of healthy life years at birth in 2011, estimated at growing interest in outdoor spaces and their 71 years for women and 70 years for men. Other development. There is a huge diversity of practices and countries with high life expectancy rates are Sweden (70 examples of creating and maintaining outside spaces that and 71 years) and Greece, Ireland and Luxembourg (all at are attractive and lively. It is quite clear that such spaces 67 and 66 years). The lowest rates are in Slovakia (52 provide resources and benefits to people with cognitive years for both) and Slovenia (54 years for both). impairments. http://europa.eu/rapid/press-release_STAT-13-35_en.htm Gardens are often perceived as privileged places, as they 14 March: Adult social care contributes EUR 50 are meeting points between the care home and the outside world. They provide a space for pleasant and billion to UK economy memorable activities, which help to improve the living A survey conducted by "Skills for Care" in the UK revealed environment and quality of life of the residents. In that the adult social care sector is worth £43bn (EUR addition, many care home residents are keen gardeners, 50bn) and supports the equivalent of 2.8m full-time jobs actively participating in its operation and upkeep. in the English economy. Residents are also routinely consulted on design, landscaping and other future plans for outdoor spaces. In In terms of value, the adult social care sector directly this sense, a garden becomes a living space that residents, contributes £20bn (EUR 23.1bn) in gross value added, care professionals, family members and visitors can all call higher than the food and drink service industry (£19bn) their own. and the production and distribution of electricity and gas (£16bn). Gross value added measures the value of goods The report is available free of charge (in French) on the and services produced in an area, industry or sector of an foundation's website. economy. www.fondation-mederic-alzheimer.org/Nos-Travaux/Nos-etudes In comparison to other sectors, the adult social care 19 March: US Alzheimer's Association publishes sector directly employs 1.5 million people in England, 2013 report which is more than the construction industry (1.1 million) or all restaurants, cafes, pubs and bars in the food and The US Alzheimer's Association drink service industry (1.3 million). recently published its "2013 Facts and Figures" report. This contains A further spend of £22.4bn (EUR 26bn) comes from the the latest American data, broken indirect effects of spending on goods and services down by state, on dementia provided by suppliers to the adult social care sector, as prevalence, mortality, caregiving and use and costs of well as the induced effect of the wages being spent by health care services. The report also includes a special workers in the sector. A significant part of this amount will report on long-distance caregivers. be spent through local suppliers, with the social care setting being the hub of a myriad of services. • Alzheimer's disease is the sixth leading cause of death in the United States. These figures are a powerful argument for seeing adult social care providers as not only players in the lives of • More than 5 million Americans are living with the their communities, but also as key contributors to the disease. prosperity of these same communities. • One in three seniors dies with Alzheimer's or another dementia. This research strongly supports the case for continued • In 2012, 15.4 million caregivers provided more than investment in the adult social care sector. This will ensure 17.5 billion hours of unpaid care valued at $216 that this significant workforce, living and working in every billion (EUR 167 bill.) community across the country, is appropriately skilled and capable of provide high quality care and support now and • Nearly 15% of caregivers for people with Alzheimer's into the future. or another dementia are long-distance caregivers. • In 2013, Alzheimer's will cost the nation USD 203 The full report can be downloaded from the Skills for Care billion (EUR 157 bill.). This number is expected to rise website. to USD 1.2 trillion (EUR 927 bill.) by 2050. www.skillsforcare.org.uk/EIreport2013 The report can be downloaded from the association's 19 March: New report shows the benefits of website. gardens in care homes www.alz.org/downloads/facts_figures_2013.pdf The Fondation Médéric Alzheimer (FMA) has released a report on the benefits of gardens and other outdoor Job opportunities spaces in care homes for people with cognitive disorders. 19 March: University of Bradford seeks Lecturer This report analyses operational features of 21 gardens in care homes and day care centres that are supported by The University of Bradford is hiring a Lecturer in Dementia FMA. The results are mainly based on site surveys - Studies for its Bradford Dementia Group. including observation, interviews with professionals,

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Ideally, the candidate will be a self-motivated and enthusiastic team player to assist the Group in meeting the unprecedented opportunity for improving the quality Contact Alzheimer Europe at: of life and quality of care for people with dementia and Alzheimer Europe, 145 route de Thionville, L-2611, Luxembourg their families. [email protected], www.alzheimer-europe.org Alzheimer Europe Board His/her main duties include furthering the academic Chairperson: Heike von Lützau-Hohlbein (Germany); Vice-Chairperson: Iva development of dementia studies through publications Holmerová (Czech Republic); Honorary Secretary: Charles Scerri (Malta); and externally funded research, in collaboration with Honorary Treasurer: Maria do Rósario Zincke dos Reis (Portugal); Members: people with dementia, family carers, care providers and Patrick Maugard (France), Maurice O’Connell (Ireland), Sirpa Pietikäinen (Finland), Helga Rohra (Germany), Alicja Sadowska (Poland), Henry Simmons practitioners. (UK - Scotland). Alzheimer Europe Staff The post holder will hold a PhD and will contribute to the Executive Director: Jean Georges; EU Public Affairs Officer: Annette Dumas; Group's portfolio of knowledge transfer including Administrative Assistant: Kate Ellis; Editor – Dementia in Europe Magazine: accredited education, short course training, practice Julie Fraser; Information Officer: Dianne Gove; Conference and Event development and quality improvement initiatives. Coordinator: Gwladys Guillory; Communications Officer: Alex Teligadas; Administrative Assistant: Grazia Tomasini. The position is located in Bradford and the closing date for applications is 2 April 2013. Informal enquiries prior to may be made by email to Murna Downs, Professor in Dementia Studies at to [email protected]

www.bradford.ac.uk/academic-posts AE Calendar 2013

Date Meeting AE Representative 3 April EMA Scientific Advice Meeting (London, United Kingdom) Jean 3 April Meeting with Maria Carrillo from US Alzheimer’s Association (London, United Kingdom) Jean 4 April Meeting with Piramal (Luxembourg, Luxembourg) Jean EFPIA dinner with Think Tank representatives to discuss pharmaceutical industry transparency Annette 9 April (Brussels, Belgium) 12 April EWGPWD meeting (Brussels, Belgium) Helga & Dianne 16-20 April Alzheimer’s Disease International Conference (Taipei, Taiwan) Jean 17 April DECIDE final project review (Rome, Italy) Alex 18 April European Commission conference on "Frailty in old age : a public health concern at EU level" Annette (Brussels, Belgium) 23 April Meeting with Lilly (Luxembourg, Luxembourg) Jean 26 April GSK Health Advisory Board (London, United Kingdom) Jean Future Conferences

Date Meeting Place 11-14 April 2013 The 7th World Congress on Controversies in Neurology (CONy), www.comtecmed.com/cony/2013/ Istanbul, Turkey 18-20 April 2013 28th International Conference of Alzheimer's Disease International: Dementia: Action for global Taipei, Taiwan change, www.adi2013.org 18-21 April 2013 9th International Congress on Mental Dysfunction & Other Non-Motor Features in Parkinson’s Seoul, Korea Disease and Related Disorders – MDPD 2013, www.kenes.com/mdpd2013 4-12 May 2013 Neural Stem Cells in Development and for Brain Repair, www.nsas.it/neural-stem-cells-for- Cortona, Italy development-and-repair 23-24 May 2013 3rd International Conference on Neurodegenerative Disorders: Immunotherapy and Biomarkers, Uppsala, Sweden http://eventus.trippus.se/immunotherapy_uppsala2013 5-6 June 2013 Pioneers in healthcare, [email protected] Brussels, Belgium 7-8 June 2013 Final PROGRESS project conference: "Alzheimer, intergenerational springboard for social inclusion Toulon, France and employment", [email protected] 8-11 June 2013 23rd ENS 2013 meeting, www.congrex.com Barcelona, Spain 13-14 June 2013 EU Summit on active and healthy ageing: An action agenda for European cities and Communities, Dublin, Ireland www.ahaconference2013.ie 23-27 June 2013 The 20th IAGG Congress of gerontology and geriatrics, www.iagg2013.org Seoul, Korea 21-26 September 2013 XXI World Congress of Neurology, www.oegnt.at Vienna, Austria 5-9 October 2013 26th ECNP (European College of Neuropsychopharmacology), www.ecnp-congress.eu Barcelona, Spain 10-12 October 2013 23rd Alzheimer Europe Conference: “Living well in a dementia-friendly society”, www.alzheimer- St. Julian’s, Malta europe.org/EN/Conferences 17-20 October 2013 8th International Congress on Vascular Dementia – ICVD 2013, www.kenes.com/icvd Athens, Greece 11-14 December 2013 The 16th Asia Pacific regional Conference of Alzheimer’s disease international, www.aprc2013- Hong Kong & Macau hongkong-macau.com th 20-22 March 2014 58 Annual meeting of the German society for clinical neurophysiology and functional imaging Berlin, Germany (DGKN), www.dgkn-kongress.de 20-23 March 2014 30th International Congress of Clinical Neurophysiology of the IFCN (ICCN), www.iccn2014.de Berlin, Germany 26-29 March 2014 13th Int. Geneva/Springfield Symposium on Advances in Alzheimer Therapy, www.ad-springfield.com Geneva, Switzerland 5-9 July 2014 9th FENS Forum of Neuroscience, http://forum.fens.org/2014 Milan, Italy

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The Alzheimer Europe newsletter arises from the 2013 Work Plan of Alzheimer Europe, which has received funding from the European Union in the framework of the Health Programme.

Page 19 of 19

NEWSLETTER April 2013

Amongst our members, the top Highlights in this issue story is the creation of the Editorial Mediterranean Alzheimer Alliance. 4 April: Formation of the 9 This initiative, conceived by Mediterranean Alzheimer In April, we went Monaco's AMPA, aims to increase Alliance to the ADI awareness of dementia and assist 4 April: Dutch government 7 Conference in in making a national priority in all commits funds to dementia Taipei and an countries on the Mediterranean plan EMA Scientific Sea. Our members from France, 8 April: European Alzheimer’s 3 Advice meeting. Greece, Malta and Portugal are all Alliance welcomes new We also attended involved. member the GSK Advisory Board meeting and hosted visitors Alzheimer Portugal is also part of a 12 April: EWGPWD holds third 4 from Lilly and Piramal in new partnership at home, with a meeting Luxembourg. In Brussels, we went similar goal of improving the lives 17 April: DECIDE project holds 3 to an EFPIA meeting and joined the of people with dementia. Our successful final review EU conferences on frailty and the Norwegian colleagues have European Month of the Brain. launched a new awareness campaign along with their The European Working Group of government. The German People with Dementia also met in association published a new guide Brussels, in preparation for our on nursing care and the UK Annual Conference in October. We Alzheimer's Society released a were very pleased to receive over report that explores the quality of 160 abstract proposals for the life of people with dementia. Conference! These are now in the Finally, Alzheimer Uniti Italy held a hands of the Scientific Committee, very popular poetry workshop. which will announce its selections by the end of May. The EMA released two new interesting publications in April: The DECIDE project held a the first is a survey of the origin of successful final review and our people in clinical trials and the other projects are proceeding Table of contents locations of these trials. The other smoothly. In addition, we are in is a glossary that contains all the Editorial ...... 1 talks to participate in three new terms used in the regulatory potential EU projects beginning in process of approving drugs. Alzheimer Europe ...... 2 2014. AE Projects ...... 3 We've also included two calls for The European Alzheimer's Alliance awards, one for young European Alzheimer’s Alliance ...... 3 was pleased to welcome Romanian neurologists and the other for MEP Tanasescu to its ranks. We Alzheimer Europe Networking 2013 ... 4 projects that improve involvement would also like to thank former of people with dementia and their EU Developments ...... 4 MEP Mario Mauro, who left the carers in the local community. EAA after winning an election to Policy Watch...... 7 the Italian Senate. Finally, this month we have a Members’ News ...... 8 special section on education In policy news, the Dutch opportunities. This contains calls Science Watch ...... 10 government has agreed to for participants in upcoming Dementia in Society ...... 13 participate in a new dementia plan courses on Nursing Ethics and Grid and the Welsh government & Cloud Computing. New Publications & Resources...... 14 pledged its support to develop

Education Opportunities ...... 15 dementia-friendly communities. Meanwhile, Croatia has elected its AE Calendar 2013 ...... 16 first MEPs and the new EU Future Conferences ...... 16 Commissioner for Consumer Protection also hails from the new Jean Georges EU Member State. Executive Director

Page 1 of 17 Newsletter: April 2013

meeting. Nina Balackova will be a keynote speaker during Alzheimer Europe the third plenary session: as the youngest member of the group, she intends to raise awareness that young people 12 April: EWGPWD holds third meeting in Brussels can have dementia too. Stig Atle Aavik has agreed to be her stand-by if needed. The group also discussed the The European Working Group of People with Dementia possibility of having a poster, while AE agreed to produce held its third meeting on 12 April in Brussels. Ten of the a leaflet on behalf of the group. This year, the Conference eleven members of the group were in attendance, along will feature a special session organised by the EWGPWD. with their carers and a representative from Alzheimer The group is still discussing the content of this session, Europe. Led by Chairperson Helga Rohra, the group which will be open to all delegates. covered a busy agenda that included updates on recent activities, the election of a new Vice-Chair and planning The next meeting of the EWGPWD will take place on 9 for the Malta conference. October 2013 in Malta.

The meeting began with an update from the AE board www.alzheimer-europe.org/Alzheimer-Europe/Who-we-are/European- meeting in February 2013. During this discussion, the Working-Group-of-People-with-Dementia EWGPWD decided to make several proposals during the 30 April: Alzheimer Europe closes call for abstract next AE board meeting in June. The members also agreed submissions that their Board should prepare a document listing the objectives of the EWGPWD. The call for abstracts for the 23rd Alzheimer Europe Conference is now closed. Alzheimer Europe is very The group then held elections for the vacant post of Vice- pleased to have received more than 160 abstracts. These Chairperson, following the resignation of Jan Frederik are being reviewed by the members of the Scientific Meijer in January 2013. Three candidates agreed to stand Committee and acceptance or rejection will be based on and Nina Balackova won the election on the second an average mark. All submitting authors will be informed round. She joins the EWGPWD Board alongside Jean- of the Committee's decision by 30 May 2013. Pierre Frognet and Agnes Houston, the other two Vice- Chairs of the group. www.alzheimer-europe.org/EN/Conferences/St.-Julian-s-Malta-2013

Alzheimer Europe's 23rd Annual Conference will take place in Malta in October. The EWGPWD will be represented in several ways and these were all discussed during the

Impressions from the EWGPWD meeting

Schtroumpf, the official mascot of the meeting Helga and Stig Agnes, Donna and Dermod

Nina with Helga and Jean-Pierre Ingegärd and Rolf Ranveig and Stig

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AE Projects European Alzheimer’s Alliance 17 April: DECIDE completes a successful final 31 March: Mario Mauro leaves the EAA review Mario Mauro, MEP (Italy) and EAA member, has resigned On 17 April, the DECIDE project team from the European Parliament. This follows his successful held a successful final review in election to the Italian Senate. Rome. The project achieved all of its Alzheimer Europe would like to thank Mr Mauro for his objectives and also demonstrated sustainability beyond support and wishes him all the best for the future. the project lifetime. The review was held at the premises of GARR, the Italian 8 April: MEP Claudiu Tanasescu joins the Alliance research and educational organisation that also acted as The European Alzheimer's Alliance is Project Coordinator. The Commission's review team was pleased to welcome a new member: headed by Ms Athina Zampara and included Ms Juliane Claudiu Ciprian Tanasescu, MEP Jark, Mr Kamen Beronov and Mr Michal Mozdzonek. After (Romania). This brings EAA hearing presentations, seeing a demonstration of the membership up to 70 MEPs from 23 service and holding discussion sessions with the project countries. team members, they concluded that the project accomplished what it set out to do. Mr Tanasescu belongs to the Group of the Progressive Alliance of Socialists and Democrats in the The reviewers specifically cited the scientific and European Parliament (S&D). He sits on the Committee on technological excellence of the project. They also pointed the Environment, Public Health and Food Safety and is a out various areas for improvement; these will be member of the Delegation for relations with Canada. He addressed in the final report that will be delivered in the joined the Alliance on 8 April. coming weeks. 16 April: EPP Group elects MEP Mairead DECIDE is an operational service that assists in the earlier McGuinness as new Vice-Chairwoman diagnosis of Alzheimer's disease and other forms of dementia. Fortunately, the service will continue to On 16 April, the EPP Group in the operate after the end of the project life. This is mainly due European Parliament completed its to the Italian Ministry of Health, which has already Presidency team by electing Irish MEP approved funding for several follow-on projects involving Mairead McGuinness as Vice- DECIDE. Chairwoman at its Group meeting. The seat became vacant when former The project partners are also seeking a role for the service MEP Ioannis Kasoulides was in various European FP7 projects. In addition, there has nominated as Minister of Foreign been a formal offer for the DECIDE diagnostic service for Affairs in Cyprus. daily clinical practice to a group of leading European memory clinics. It is hoped that these efforts will ensure Ms McGuinness sits on the Committee on Agriculture and that the service will remain available for at least the next Rural Development and is a substitute on the Committee several years. on the Environment, Public Health and Food Safety. She has been a member of the European Alzheimer's Alliance DECIDE was funded by the European Commission within since September 2009. the 7th Framework Programme.

www.eu-decide.eu 14 April: Commission replies to MEP Werthmann's question about research in Alzheimer’s disease On 14 April, the European Commission (DG Research) responded to Angelika Werthmann, MEP (Austria) and member of the European Alzheimer’s Alliance, about how the EU supports research on Alzheimer’s disease and other forms of dementia. The Commission said that FP7, the 7th Framework Programme for Research and Technological Development, has allocated EUR 200 million to research on Alzheimer's disease. The next Framework Programme for Research, Horizon 2020, will very likely provide further opportunities to support research on Alzheimer's.

Regarding national programmes, the Joint Programming Initiative on Neurodegenerative Diseases (JPND) carried out in 2011 a mapping exercise of the main national research programmes and funding support in Europe in this area. In its response, the Commission added that encourages the alignment and coordination of institutional and

Page 3 of 17 Newsletter: April 2013

competitive funding that has been committed under should enable EU citizens to lead healthy, active and national research programmes. This funding accounts for independent lives while ageing and to improve 88% of the public research investments in Europe. sustainability and efficiency of social and health care systems. In terms of international cooperation, Canada joined the JPND in 2012 and the JPND organised a meeting on 9 November 2012 to exchange views with the United States. The Commission provides support to the JPND and, under the Health programme, to the Joint Action Alzheimer cooperative Valuation in Europe (ALCOVE). The Commission is also organising a European Month of the www.alzheimer-europe.org/Donation Brain in May 2013. This will provide a framework to raise awareness on brain research and health care issues. Finally, the Commission response mentions the European Innovation Partnership on Active and Healthy Ageing. This

Alzheimer Europe Networking 2013

On 3 April (London, UK) Jean attended the EMA Scientific Advice Meeting and had a meeting with Maria Carrillo from US Alzheimer’s Association. On 4 April (Luxembourg, Luxembourg) Jean met with Piramal. On 9 April (Brussels, Belgium) Annette had an EFPIA dinner with Think Tank representatives to discuss pharmaceutical industry transparency. On 12 April (Brussels, Belgium) Dianne attended the EWGPWD meeting. On 16-20 April (Taipei, Taiwan) Jean attended the Alzheimer Disease International Conference. On 17 April (Rome, Italy) Alex attended the DECIDE final project review. On 18 April (Brussels, Belgium) Annette attended the European Commission conference ‘Frailty in old age: a public health concern at EU level’. On 23 April (Brussels, Belgium) Annette attended the STOA ‘European Month of the Brain’ meeting on ‘What does it mean to have a brain disease?’ On 25 April 2013 (Luxembourg, Luxembourg) Jean met with Lilly. On 26 April (London, UK) Jean attended the GSK Health Advisory Board (London, United Kingdom).

Members of the European Alzheimer’s Alliance

Austria: Becker K. Heinz (EPP), Werthmann Angelika (NI). Belgium: Demesmaeker Mark (Greens/EFA), Ries Frédérique (ALDE), Staes Bart (Greens/EFA), Tarabella Marc (S&D). Bulgaria: Parvanova Antonyia (ALDE). Cyprus: Triantaphyllides Kyriacos (GUE-NGL). Czech Republic: Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP). Denmark: Christensen Ole (S&D), Rohde Jens (ALDE), Schaldemose Christel (S&D). Finland: Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli (ALDE), Pietikäinen Sirpa (EPP). France: Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise (EPP), Juvin Philippe (EPP), Morin-Chartier Elisabeth (EPP), Pargneaux Gilles (S&D). Germany: Niebler Angelika (EPP), Roth-Behrendt Dagmar (S&D), Ulmer Thomas (EPP), Weisgerber Anja (EPP). Greece: Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni (S&D), Kratsa-Tsagaropoulou Rodi (EPP). Ireland: Aylward Liam (ALDE), Childers Nessa (S&D), Crowley Brian (ALDE), McGuiness Mairead (EPP), Mitchell Gay (EPP). Italy: Panzeri Pier Antonio (S&D), Toia Patrizia (S&D). Lithuania: Vilija Blinkeviciute (S&D). Luxembourg: Engel Frank (EPP), Lulling Astrid (EPP). Malta: Simon Busuttil (EPP), Joseph Cuschieri (S&D). Netherlands: De Lange Esther (EPP), van Nistelrooij Lambert (EPP), Wortmann-Kool Corien (EPP). Poland: Łukacijewska Elżbieta (EPP). Portugal: Carvalho Maria da Graça (EPP), Coelho Carlos (EPP), Matias Marisa (GUE/NGL). Romania: Antonescu Elena Oana (EPP), Busoi Cristian (ALDE), Sârbu Daciana Octavia (S&D), Tanasescu Claudiu Ciprian (S&D). Slovakia: Mikolasik Miroslav (EPP), Zaborska Anna (EPP). Slovenia: Peterle Alozj (EPP). Spain: Badia i Cutchet Maria (S&D), Estaràs Ferragut Rosa (EPP). United Kingdom: Anderson Martina (GUE-NGL), Ashworth Richard (ECR), Hall Fiona (ALDE), McAvan Linda (S&D), McCarthy Arlene (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Taylor Keith (Greens/EFA), Vaughan Derek (S&D), Watson Graham (ALDE), Willmott Glenis (S&D), Yannakoudakis Marina (ECR).

From July onwards, the European Commission will start EU Developments working on a practical guide regarding the Annexes of the 10 April: Parliament and Council agree on text for Directive. This guide will also contain working procedures as well as specific information and training measures for MRI derogation MRI workers exposed to electromagnetic fields and will be On 10 April, the European Parliament and the Council implemented through a delegated act. reached an agreement on a final text of the draft directive http://eu2013.ie/news/news-items/20130328emfpr/ on electromagnetic fields, including the MRI derogation. 14 April: Croatia elects Members of the European The plenary vote in the Parliament should take place in Parliament June 2013. The Council will formally adopt the draft directive before the summer break and the On 14 April, Croatia held its first elections for the implementation date has been set for July 2016. European Parliament, with twelve MEPs elected.

Page 4 of 17 Newsletter: April 2013

The coalition list consisting of 3 (of 4) ruling parties will  There are large differences in the burden of chronic have 5 MEPs within S&D, the Progressive Alliance of diseases among EU Member States and also among Socialists and Democrats in Europe. They are Marino social economic groups or regions within the States. Baldini, Biljana Borzan, Sandra Petrović Jakovina, Tonino  Chronic disease prevalence and mortality vary Picula and Oleg Valjalo. considerably among EU Member States. The The opposition coalition list will have 6 MEPs from EPP, differences in mortality are the main cause of the the European People's Party: Zdravka Bušić, Ivana Maletić, differences in life expectancy at birth among Member Andrej Plenković, Ruža Tomašić, Davor Ivo Stier and States. Dubravka Šuica. The authors of the report recommend the following The Croatian Labour Party will be represented by Nikola actions for the EU and Member States: Vuljanić, as soon as his political affiliation is confirmed.  The EU and Member States should stimulate the use The elected MEPs will be in office until next year's of effective interventions for the prevention and European elections, at which time their number will be treatment of chronic diseases. reduced from 12 to 11. Turnout for this election was just  The EU and Member States should use an integrated 20.75% – the lowest ever in any election in the country and intersectoral approach to combat the growing and one of the lowest in any member state for elections and unequally distributed burden of chronic diseases. to the European Parliament. Health should be an issue in all policies.  Croatia applied for EU membership Member States should learn from each other’s in 2003 and negotiations ended in experiences by an exchange of best practices. 2011. The country of 4.3 million  The EU and Member States should invest further in people will become the 28th EU sustainable and harmonised data collection in the Member State on 1 July. Currently, the European area of chronic diseases. Parliament has 12 Observers appointed by the Croatian  The EU will take responsibility for improving current parliament, reflecting the political composition in the data in Europe by stimulating joint data collection and national assembly. facilitating the central coordination of data

http://libraryeuroparl.wordpress.com/2013/04/20/croatias-european- harmonisation and quality control and the exchange elections-14-april-2013/ of best practices in data collection. 17 April: Commission presents report on chronic Another chapter deals with the relationship between diseases and economic activity among older chronic diseases and economic activity. A relevant health working people outcome measure, especially in view of dementia and Alzheimer’s disease, is cognitive functioning. The authors On 17 April, the European Commission presented a report report some studies that found no significant effect of of the Dutch National Institute for Public Health and the retirement on problems with cognitive functions. Environment (RIVM) entitled "Europeans of retirement http://ec.europa.eu/health/major_chronic_diseases/docs/rivm_report_retire age: chronic diseases and economic activity". ment_en.pdf RIVM prepared this report in 2012 in response to a call by 18 April: Commission holds conference on frailty the European Commission's Directorate-General for Health and Consumers. It is a review of the impact of On 18 April, the European Commission organised a high- chronic diseases on the population of pre- and post- level conference entitled "Frailty in old age: a public retirement age in the EU. health concern at EU level". This was part of the European Innovation Partnership on Active & Healthy Ageing, where The report primarily focuses on five chronic diseases prevention of functional decline and frailty has been (cardiovascular diseases, cancers, diabetes, chronic lung identified as a concrete action. diseases and depression) but also includes some neurodegenerative diseases (such as dementia) because The objectives of the conference were to initiate a policy of their importance among older age groups. debate on frailty guidelines, showcase the commitments being implemented in the frailty action group and discuss The findings are: the latest evidence that can feed into the work of the  The burden of chronic diseases for Europeans of Partnership. retirement age is substantial and increases with age Tonio Borg, Commissioner for Health and Consumer in both men and women. Policy, opened the conference by reminding the audience  The burden of chronic diseases will increase due to that innovation is the key to Europe’s future success and the ageing of the population and lifestyle risks. must be at the very core of all efforts. He acknowledged  Only five EU countries can expect their citizens to that many people currently experience significant reach retirement age without activity limitations: functional decline in old age. To mitigate this decline, we Bulgaria, Ireland, Greece, Malta and Sweden. need to identify and implement targeted interventions to postpone the onset of disability where possible and  Each year, approximately three million productive life ensure that people can lead meaningful and contented years are lost due to premature mortality from lives. chronic diseases among older Europeans of working age. Mr Borg also mentioned that the Commission is collaborating with the WHO and the OECD to develop a

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global agenda to address functional and cognitive decline health systems toward a more positive attitude fostering and dependence. He said that we must now highlight the technological developments and innovation. She called main challenges posed by frailty and define common for a better research network and multidisciplinary approaches that could be adopted by different actors systems for long-term care. across Europe. Colin Blakemore, School of Advanced Study, University of The Commissioner praised the work of the Partnership London and University of Oxford, gave a very and highlighted the emergence of common drivers such comprehensive speech about neuroscience. He praised as screening, anticipatory care and prevention of the EU for having a great tradition in neuroscience and functional decline in older people. Another driver is the wished this would continue. He told the audience that increased use of innovative, co-ordinated and most neurons could not be replaced and that it was comprehensive community based prevention, delivered essential for an individual to retain as many cells as within an integrated health and care system. This will possible during lifetime. However, there are some limited dramatically improve the quality of life of old people and areas of the brain where nerve cells can be replaced. reduce both the number and the length of hospital stays. Some research in mouse models has shown that neurons in the hippocampus can be created based on exercise. Mr Kathleen Lynch, Irish Minister for Disability, Equality, Blakemore cited this as evidence for the importance of Mental Health and Older People, also stressed that we physical exercise. should see the opportunities of old age and that we were working for our future. As an example, she cited Ireland's Monica di Luca, from the Federation of Neuroscience "Mental Capacity Bill". This Bill protects the rights of Societies and the European Brain Council, talked about people with disabilities to make decisions about their the economic and social revolution triggered by the lives. It is important that their preferences be taken into ageing of the population. She mentioned the dependency account: people know what is good for them and they do ratio that will reach 20% of the population over 65 by not want others to tell them what to do or how to do it. 2020 and that two-thirds of the people who reach 65 live alone. This has an impact on the structure of society and The policy implications of preventing frailty, how care is provided: there are fewer people to cope for understanding and tackling frailty and key ideas for EU an increasing number of people. She added that delaying action were discussed during the plenary sessions. Four the onset and progression of the disease by five years workshops addressed: 1) risk conditions, early diagnosis would significantly reduce its cost. and prevention, 2) malnutrition and frailty, 3) functional and cognitive decline and 4) the impact of frailty on health Audrey Craven, representing the European Federation of and social services. Neurological Associations (EFNA), called for a "coalition of the willing" at EU level to help reduce the impact of http://ec.europa.eu/commission_2010- 2014/borg/docs/speech_18042013_en.pdf neurodegenerative diseases. She thus launched EFNA’s http://ec.europa.eu/dgs/health_consumer/dyna/enews/enews.cfm?al_id=13 pledge asking all stakeholders to put neurology patients 65 first and support essential investment in neuroscience 23 April: Parliament's STOA conference addresses research. brain diseases All presenters agreed that brain research was important, as there is currently no treatment or cure for brain On 23 April, the STOA Unit (Science and Technology diseases. They called for more support for research to Assessment Options) of the European Parliament understand brain functions and diseases, develop new organised a conference entitled "What does it mean to treatment and preventive strategies, improve health and have a brain disease?" The conference was held within social care and alleviate the economic and social burden the context of the European Month of the Brain and was of brain diseases. chaired by Antonio Correia de Campos, MEP (Portugal) and Chairman of the STOA Bureau. They also called for the creation of a strong European platform for both basic and clinical brain research. In Mr Correia de Campos started the event by setting the addition, healthcare strategies should be coordinated scene: by 2025, one in five Europeans will be 65 or older. between member states in order to create an all- The increase in life expectancy and the consequent ageing encompassing European system. of the population will lead to an increase in the number of people having neurodegenerative or brain diseases like www.europarl.europa.eu/news/en/headlines/content/20130426STO07641/h Alzheimer’s disease and Parkinson’s disease. Less than tml/Month-of-the-Brain-experts-warn-MEPs-over-expected-rise-in-brain- diseases one in two Europeans currently receives some form of medical attention. 25 April: Croatia names EU Commissioner for Brain diseases cost Europe EUR 800 billion in 2010 - more Consumer Protection than the total cost of cardiovascular disease and diabetes On 25 April, Croatia named Neven Mimica as - and this will increase drastically in the coming years. Out Commissioner-designate. President Barroso has met Mr of this EUR 800 billion, 37% accounted for direct health Mimica and has confirmed his agreement for this care costs, 23% for direct non-medical costs and 40% for candidacy. Mr Barroso also indicated his intention to indirect costs. Indirect costs include disability support and assign Mr Mimica the portfolio of consumer protection. lost earnings for people with brain disorders. The Council will appoint the new Commissioner after Elena Becker-Barroso, Editor of The Lancet Neurology consultation with the European Parliament. Mr Mimica is journal, advised to move from the alarmist conceptions due to take his post on 1 July 2013, when Croatia that neurodegenerative diseases are a threat to the becomes the 28th EU Member State. He is currently

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Croatia's Deputy Prime Minister for Foreign Affairs and These rulings were made as part of court cases brought by European Integration, with a long-standing commitment pharmaceutical companies AbbVie and InterMune. The to European integration and extensive experience as a companies are challenging the Agency’s decisions to grant Minister and diplomatic adviser. access to non-clinical and clinical information (including clinical study reports) submitted by companies as part of 30 April: European Commission presents the marketing-authorisation applications in accordance with "European Month of the Brain" its 2010 access-to-documents policy. According to an EMA press release, this is the first time that the policy has been On 30 April, the European Commission presented a legally challenged. The agency is considering whether to Question & Answer memo to explain the "European appeal the interim decisions. Month of the Brain". The press release is available on the EMA website. This initiative is not just about health: brain research also involves genetics, cell biology, physiology, imaging, www.ema.europa.eu/ema/index.jsp?curl=pages/news_and_events/news/20 bioinformatics, anatomy, ICT, nanotechnology and 13/04/news_detail_001779.jsp&mid=WC0b01ac058004d5c1 nutrition. In addition, a wide range of services and products could stem from unlocking the secrets of how Policy Watch the brain works. 4 April: Dutch government commits funds to a The EU's FP7 research programme has already invested new dementia plan EUR 1.9 billion in brain research and innovation. More than EUR 750 million has funded research for brain On 4 April, the Dutch Ministry of Ministry functions and processes and more than EUR 400 million of Health, Welfare and Sport announced for neurodegenerative disorders - including EUR 202 that it will allocate EUR 32.5 million to million for Alzheimer’s disease. Research for neurological the fight against dementia over the next disorders has been funded with EUR 400 million and four years. This money is intended for the "Deltaplan public health with EUR 75 million. Dementia". This plan - analogous to the Dutch water works - is intended to limit the consequences of the EU-supported brain research comes in various formats, foreseen explosive rise in people with dementia. including international collaborative projects, frontier research through the European Research Council (ERC), The contribution of the government will be used to public-private partnerships (Innovative Medicines initiate a research program that concentrates on (1) Initiative), networks (European Stroke Network), global rapidly improving the efficiency of healthcare, so today's co-operations (International Initiative for Traumatic Brain patients can benefit of the results and (2) fundamental Injury Research), training and mobility schemes for young research into the origins of the dementia to improve researchers and the large-scale "Human Brain Project". diagnostics and find ways to prevent or cure dementia . The second objective will receive two thirds of the The EU also supports national research efforts through research budget and aims to improve the situation of the State-led Joint Programming Initiative on tomorrow’s patients. Neurodegenerative Diseases (JPND), the recently completed EU Joint Action ALCOVE (Alzheimer The Deltaplan Dementia is a public-private partnership; a Cooperative Valuation in Europe) and the European number of private partners have shown interest to Innovation Partnership on Active and Healthy Ageing. support the financing of research projects and also the other two pillars of the plan. One of these is a registry On a wider scale, the EU is co-operating with the US that will monitor diagnosis and received care of Dutch National Institute of Neurological Disorders and Stroke patients, thereby contributing to a high national standard and the Canadian Institute of Health Research. Canada of care. The other pillar is an online portal that will help also participates in the JPND and the US recently patients, cares and professionals to receive or provide the announced the "Brain through Advancing Innovative best possible care. Neurotechnologies" (BRAIN) project. Alzheimer Nederland, one of the Deltaplan initiators, is Finally, the memo presents how the next EU research delighted with the contribution of the government. Maria programme (Horizon 2020) for the period 2014-2020 will van der Hoeven, Chairman of the Supervisory Board of cover brain disease. Alzheimer Nederland, said: "The financial contribution of http://europa.eu/rapid/press-release_MEMO-13-390_en.htm?locale=en the Ministry of Health, Welfare and Sport in a time of budget cuts is a strong signal that dementia is recognised 30 April: EMA receives interim court decisions on as a major social issue. Moreover, the financial support of access to clinical and non-clinical information dementia research is testament to the proactive and long- term vision of the ministry. This problem requires a joint effort of government, private sector and the public to find solutions. The impact of the explosive growth of dementia cases in the future would otherwise be unmanageable and unaffordable for Dutch society. A dam is needed to Following interim rulings by the General Court of the turn the tide - while we still can." European Union, the EMA has been ordered not to provide documents as part of two access-to-documents Alzheimer Nederland will support the Deltaplan Dementia requests until a final ruling is given by the court. with EUR 12.5 million over the next four years. Director Gea Broekema-Prochazka said: "With the contributions of the Ministry of Health, Welfare and Sport and Alzheimer

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Nederland, the first 50% of the research money for the order to guarantee their basic human rights, first four years of the Deltaplan is already secured. This is including the right to self-determination. an important first step to fulfil our ambition. It is important that more private partners and private donors 3) Good care and rehabilitation is essential. It is give their support to the Deltaplan Dementia". important that memory-related diseases be recognised, diagnosed and treated as early as 23 April: Wales declares support for dementia- possible. There will be a particular focus on the friendly communities entire care chain and its quality. First Minister Carwyn Jones 4) Support for high quality research and recently unveiled a programme competence of professionals are important. which he hopes will help to create Research efforts must be adequately dementia supportive communities resourced, in order to support the areas above in Wales. and to ensure further development. This includes developing the knowledge and The aim of the programme - which is supported by the competencies of health care professionals. Alzheimer's Society - is to make people in Wales more aware of dementia and how it affects the day to day lives The new English translation is available on the websites of of people living with the syndrome. There are some the Ministry and Alzheimer Europe. 44,500 Welsh people with dementia and that number is www.stm.fi/julkaisut/raportteja-ja-tyoryhmamuistioita/nayta/- predicted to rise to 56,000 by 2021. /_julkaisu/1800855#en www.alzheimer-europe.org/Policy-in-Practice2/National-Dementia- The Alzheimer’s Society, the Welsh Government and the Plans/Finland#fragment-1 Older People’s Commissioner will work together on a number of initiatives to build awareness of dementia and Members’ News build dementia supportive communities. 3 April: Norway launches dementia awareness Sue Phelps, director of Alzheimer’s Society in Wales, said: campaign “We seek nothing less than the creation of a social movement to change quality of life for people with On 3 April, Norway’s Department of dementia and their families. A dementia supportive Health launched a new public community requires a change in attitudes and behaviours awareness campaign about dementia towards dementia. We want people in the local called “Talk about it” during an event community to have a better understanding of dementia, hosted by the Norwegian Alzheimer’s Association. The and the problems people face.” campaign aims to increase openness about dementia and to encourage people who suspect they may have Gwenda Thomas, Deputy Minister for Social Services, said dementia to seek advice from their GP. that building dementia friendly communities is about much more than investing in health and social care Openness about the early symptoms of dementia services. She added: "While this is essential and increases the opportunity of an early diagnosis. In turn, something the Welsh government will continue to work to diagnosis allows the person with dementia to plan for the deliver, all of us – individuals, businesses, statutory future, talk with their family and live as well as possible services, the voluntary sector, and government at all with dementia. Recent research has shown that nearly levels – have a role to play." three quarters (74%) of Norwegians say it would be difficult to talk about dementia with someone they 29 April: Finland publishes English text of its suspect might have it. National Memory Programme The Norwegian Minister of Health and Care and Alzheimer The Finnish Ministry of Social Affairs Norway's Director of Health both spoke at the event. They and Health has published an English underlined the importance of keeping the focus on the language version of the text of person - not the diagnosis - and emphasised the vital roles Finland's National Memory of relatives and volunteers in supporting and caring for Programme 2012-2020. people with dementia in Norway. The programme launched in May 2012 and aims to create The Norwegian association often receives complaints a "memory-friendly Finland" through four main areas of from people with dementia and their relatives who activity: experience a long wait when inquiring about dementia diagnoses from their GP. Lisbet Rugtvedt, General 1) The promotion of lifelong brain health and the Secretary, pointed out in the national media that GPs prevention of memory-related diseases. Brain must pay more attention to concerns from relatives about health will be promoted both on a personal memory loss and changes in behaviour, and also start level and on a very broad level across society, their inquiries at an earlier time. including social and health services and education. 2) The ageing of the population is causing a marked increase of memory-related diseases in Finland. The plan will promote positive www.alzheimer-europe.org/Donation attitudes towards people with dementia in

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4 April: New Mediterranean Alzheimer Alliance issues declaration of collaboration On 4 April, nine organisations from countries adjoining the Mediterranean Sea joined together to form the Mediterranean Alzheimer Alliance (MAA). These countries (France, Greece, Lebanon, Malta, Monaco, Morocco, Portugal, Spain and Tunisia) are united 16 April: German Alzheimer Society releases new by historical, geographical and cultural links, but more importantly by common values of solidarity. The partners, guide to nursing care including eight national Alzheimer associations, The German Alzheimer Society has established the MAA as an alliance in the struggle against released the 14th edition of its "Guide to Alzheimer's disease. Nursing Care". The guide provides detailed This initiative was conceived by Monaco's AMPA information on long-term care benefits, such as how to Alzheimer Association and stems from the fact that apply for the benefits and the conditions of the Alzheimer's disease is much more than a health issue; it authorisation. It specifically addresses the provisions of also has a huge impact on social, cultural and economic the new care restructuring law that was enacted in sectors of each society. The only solution is an integrated January 2013. package of diagnosis along with sufficient support for The German-language guide is available for sale at EUR 6 people with dementia, their caregivers and families. on the Society's website.

During the conference, which was attended by over 70 http://shop.deutsche-alzheimer.de/broschueren/ people, the signatories issued the Marrakech Declaration. This calls for associative, scientific and professional 19 April: Alzheimer Uniti Italy organises poetry organisations across the Mediterranean involved in workshop for people with dementia dementia to collaborate towards the following aims: On 19 April, Alzheimer Uniti Italy held a  Create a Mediterranean Alzheimer expert network poetry workshop called “Caproni and and incite exchanges between organisations involved me" at the Alzheimer Day Center of in dementia. Fondazione Roma. This featured poetry  Improve and increase knowledge by identifying the readings and then a poem writing needs and emerging issues of Alzheimer’s disease in session, all under the close guidance of the Mediterranean region. a contemporary poet.  Promote and diffuse the best local experiences, good She first read a poem by the famous Giorgio Caproni, who practice and innovative initiatives in the lived in the same borough of Rome as the Day Center. Mediterranean. Next she read one of her own poems, which had been  Issue recommendations and enforce plans on a local inspired by that same Caproni poem. Then the two poems and international level to ensure that dementia were “dismantled” and “reassembled” by the participants becomes a priority in the Mediterranean area. in the group who were encouraged to speak freely about emotions, memories and thoughts that came to mind. The  Extend this network with experts or research teams resulting words were written down and then rearranged specialised in issues concerning the Mediterranean. into new verses by the group.  Encourage associative and scientific collaboration and partnerships in the Mediterranean. Reading and writing poetry has a positive effect on  Develop and support training for professionals in persons with dementia, bringing out creativity, language Mediterranean countries. and autobiographical memory and encouraging verbalisation. This first conference was seen as a great success by delegates; for some, it was an important first step toward The verses written at the Alzheimer Day Center will be making dementia a priority in their respective countries. read in a theatre in the near future, along with the poetry Dr. Charles Scerri, Secretary of the Malta Dementia of other writers. Society, said: "MAA is still in its early stages, but has a 22 April: Alzheimer Portugal supports community huge potential for moving forward. The next step is actions for dementia meeting in Malta in October to continue discussing the way forward and getting more Mediterranean countries Alzheimer Portugal, along with various involved and signing the Declaration." partners, is developing a new project called “CuidarMelhor” - Taking Better Care. For more information about the Mediterranean Alzheimer The main goals of the project are: Alliance, please contact Federico Palermiti, AMPA Monaco: [email protected] 1. to determine the prevalence of dementia in the Cascais, Sintra and Oeiras municipalities 2. to open CuidarMelhor centres that will support people with dementia and their carers in these municipalities

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3. to raise public awareness of the various issues score was less strongly associated with declines and only related to dementia on three of the five tests. 4. to train dementia carers The research team was led by Dr. Sara Kaffashian, a doctoral fellow at the French National Institute of Health

5. to adapt and develop the Memory Café and Medical Research. The study involved 7,830 concept in Portugal. participants in the Whitehall II study, who had an average The first CuidarMelhor centre opened to the public on 22 age of 55 when they entered the longitudinal British April in Cascais and another is due to open in several cohort. weeks. The centres employ multidisciplinary, person- The researchers compared the performance of the CAIDE tailored approaches that aim to inform and provide social, test with the Framingham cardiovascular tool in 4,374 psychological and legal support to people with dementia participants who were free of cardiovascular disease. and their carers. They also compared the CAIDE test with the stroke tool in The staff is highly specialised and can offer advice on the 5,157 people free of strokes and transient ischemic causes and signs of dementia, as well as diagnosis and attacks. intervention. In addition, a group of lawyers working on a Participants were tested three times in four cognitive voluntary basis provides legal support. domains over ten years. On both the Framingham tools, During April, Alzheimer Portugal also higher scores at baseline were associated with greater organised two Memory Cafés - the first to decline on all tests except memory, they found. On the take place in the country. Both events other hand, a higher CAIDE risk was associated with were very well attended by people with greater decline in reasoning, vocabulary, and global dementia together with their carers. The cognition. Memory Cafés aim to provide emotional support and Dr. Kaffashian said: "Cardiovascular risk scores may have information to people with memory problems or an advantage over the dementia risk score for use in dementia and to promote the sharing of experiences. prevention and for targeting changeable risk factors since They are also useful tools to raise awareness of the issues they are already used by many physicians." surrounding dementia and to encourage people in the local community to become actively involved. The Dr. Michael Rafii, Adjunct Professor of Neurosciences at Memory Cafés are scheduled to take place twice a month. the University of California (San Diego), commented that the varied outcomes might reflect differences in the type The other partners in CuidarMelhor are the Gulbenkian of dementia being measured. He was not involved in the Foundation, the MontepioFondation, the Institute of study, but said: "The measures that are being looked at Social Sciences of the Portuguese Catholic University, with the stroke measures are more reliable in predicting private company Sonae Sierra and the municipalities of vascular dementia than Alzheimer's disease" and added Cascais, Sintra and Oeiras. that the "dementia tool seems to be less correlated with vascular dementia down the road".

www.neurology.org/content/80/14/1300.abstract

www.alzheimer-europe.org/Donation 2 April: Hormonal hunger signalling may help reduce AD plaque A new study shows that hormonal hunger signalling may represent a new way to fight Alzheimer's disease. A Science Watch research team from the University of Alabama in Birmingham (UAB) demonstrated improved memory and 1 April: Cardiovascular and stroke risk tools are reduced amyloid plaque buildup in mouse models that also effective for dementia were kept in a hungry state. A new cohort study shows that the standard risk The researchers, led by Dr. Inga Kadish, Assistant prediction tools for heart disease and stroke may be Professor at UAB's School of Medicine, argue that better at predicting declining mental powers than a hormonal signals are the middlemen between an empty specific dementia risk score. gut and the perception of hunger in the brain. Manipulation of these signals may effectively counter age- French scientists found that higher risks on the widely related cognitive decline in the same way as caloric used Framingham cardiovascular disease and stroke restriction. scores were strongly associated with declines on four out of five cognitive tests. Caloric restriction is a regimen where an individual consumes fewer calories than average. Studies in various They also found that higher risk on the recently proposed species have suggested that this could protect against Cardiovascular Risk Factors, Aging and Dementia (CAIDE) neurodegenerative disorders and extend lifespans.

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However, the effect has never been confirmed in human Prof Goate said: “It appears APOE influences risk in more clinical trials. The research team theorises that feeling than one way. Some of the effects are mediated through hungry creates mild stress. In turn, this stress activates amyloid-beta and others by tau. That suggests there are metabolic signalling pathways that inhibit plaque buildup at least two ways in which the gene can influence our risk in Alzheimer's disease. for Alzheimer’s disease.” Dr. Cuchaga added: “We know there are some individuals with high levels of amyloid- This study examined the long-term effects of a synthetic beta who don’t develop Alzheimer’s disease. We don’t form of the ghrelin hormone in three types of Alzheimer know why that is, but perhaps it could be related to the mouse models. More specifically, it looked at whether or fact that they don’t have elevated tau levels.” not the feeling of hunger could counter Alzheimer's pathology in the absence of caloric restriction. In addition to APOE, the research team found that the GLIS3, TREM2 and TREML2 genes also affect tau levels The ghrelin hormone is known to create hunger signals by and Alzheimer’s risk. interacting with the arcuate nucleus in the brain's hypothalamus, which sends out signals that help the body www.sciencedirect.com/science/article/pii/S0896627313001840 sense and respond to energy needs. 4 April: Study shows beneficial effects of beta Study mice were divided into three groups: one that amyloid and tau proteins received synthetic ghrelin, a second that underwent caloric restriction and a control group. Study measures Two recent studies from the Stanford University School of looked at each group's ability to remember, their degree Medicine have uncovered new, beneficial effects of of Alzheimer's pathology and their level of related, amyloid-forming proteins. potentially harmful immune cell activation. The first study, published in August 2012, showed that the Results showed a 67% reduction of AD pathology in beta amyloid protein could reverse the symptoms of a caloric-restricted mice as compared to control mice and a variant of multiple sclerosis in mouse models. The second 48% reduction of plaque deposits when comparing the study, from April 2013, determined that small fragments ghrelin-treated mice with the control group. They also of several amyloid-forming proteins, such as tau and showed that the treated mice had reduced levels of prions, can also quickly alleviate symptoms in mice. This is microglial activation compared to the control group. despite the fact that the fragments form the long tendrils, or fibrils, that are thought to be harmful to neuron health. Dr. Kadish said: "This is the first paper, as far as we are aware, to show that the sensation of hunger can reduce Taken together, the studies suggest that amyloid-forming Alzheimer's disease pathology in a mouse model of the proteins may be produced by the body as a protective disease. If the mechanisms are confirmed, hormonal rather than destructive force. In particular, the proteins hunger signaling may represent a new way to combat may function as molecular chaperones, escorting and Alzheimer's disease, either by itself or combined with removing molecules involved in inflammation from injury caloric restriction." sites. www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0060437 Dr. Lawrence Steinman, Professor of Neurology and Neurological Sciences at Stanford, was involved in both 4 April: APOE gene is linked to elevated tau levels studies. He said: "We began this research because these molecules are present in the brains of people with Researchers at Washington University School of Medicine multiple sclerosis. We expected to show that the presence in St. Louis have identified a new set of genetic markers of beta amyloid made the disease worse in laboratory for Alzheimer’s disease. These are based on the tau animals. Instead, we saw a great deal of benefit. protein and seemingly point to a second pathway through which the disease develops. "What we're finding is that, at least under certain circumstances, these amyloid peptides actually help the The team - headed by Dr. Alison Goate, Professor of brain. We know the body makes a lot of amyloid-forming Neurology and Genetics and Dr. Carlos Cruchaga, proteins in response to injury. I'm doubtful that that's Assistant Professor of Psychiatry - performed a genome- done to produce more harm. For example, the prion wide association study (GWAS) on tau in cerebrospinal protein exists in every cell in our bodies. What is it doing? fluid. They analysed the genomes of 1,269 individuals who It's possible that any therapeutic maneuver to remove all had undergone spinal taps as part of ongoing Alzheimer’s of these proteins could interfere with their natural research. function. Results showed several genes that are related to high "The lessons we learn from our study of amyloid-forming levels of tau and higher risk for Alzheimer’s disease. Three proteins in multiple sclerosis could be helpful for stroke genes have no known effect on amyloid beta, suggesting and brain trauma, as well as for Alzheimer's disease." that they operate through a completely different pathway. http://stm.sciencemag.org/content/5/179/179ra42.abstract?sid=b728e6db- 2f3b-4b32-a1ab-9e49668c3025 Another gene, APOE, is known as an Alzheimer's risk http://stm.sciencemag.org/content/4/145/145ra105.abstract factor through its association with amyloid beta. 10 April: New rat model mimics AD symptoms However, in this study it also seemed to be connected to elevated tau levels. The finding that APOE influences better than mice more than one pathway could help explain why the gene Researchers at the University of Southern California (USC) has such a big effect on Alzheimer’s disease risk. have developed a genetically modified rat that is the first

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rodent model to exhibit the full range of brain changes compared to whites. It's a highly significant risk that found in Alzheimer's disease. doesn't exist in other populations. In order to find interventions, we need to explore all the various risks." In recent years, drug companies have developed several The National Institute on Aging is part of the NIH, the Alzheimer's drugs that seemed to work in animals - agency that funded the study. especially mice - but did not help people. This led to experimentation with rats: the new TgF344-AD model http://jama.jamanetwork.com/article.aspx?articleid=1677372 comes from a line that is known to develop some of the 11 April: AMPK enzyme triggers synaptic loss in same health problems as humans when they get older. In addition, rats are 4-5 million years closer evolutionarily to mice humans, so their brains are more like ours. A recent study has linked overactivation of the AMPK The researchers were led by Dr. Terrence Town, Professor enzyme to the typical synaptic loss of early Alzheimer’s of Physiology and Biophysics at USC. They confirmed the disease in mouse models. presence of both amyloid plaque and tau tangles in the The study was led by Prof Franck Polleux from The Scripps new rats. The scientists also discovered specialised glial Research Institute in California. His team established that cells (neural support cells) before the development of the presence of amyloid beta signals certain neuronal amyloid plaque. While mouse models do develop plaque, receptors to accept an influx of calcium ions into the they cannot have tau tangles or specialised glial cells. neurons. This calcium influx triggers the activation of an Dr. Town reported: "The big shocker came when we enzyme called CAMKK2, which seems to be the main started counting numbers of neurons in their brains. It activator of AMPK in neurons. turns out that they lose up to about 30 or 35 percent of Amyloid beta also causes the destruction of neurons' the neurons in brain regions that are classically associated dendritic spines, which act as communications paths to with Alzheimer's disease. other neurons via synaptic connections. The researchers "The rats also began to lose their ability to do mental showed that dendritic spine loss can only occur when tasks, like navigate a maze. And as the animals get older, AMPK is overactivated - and also that AMPK they perform even worse, much as you would see in a overactivation on its own can cause the damage. When human being that would have these mutations". the scientists blocked AMPK, the mouse models were protected from synaptic loss. He hopes that the new transgenic rats will also help researchers uncover principles applicable to other Prof Polleux said: "These findings open up many new neurological diseases, such as amyotrophic lateral avenues of investigation, including the possibility of sclerosis (ALS) and Parkinson's disease. developing therapies that target the upstream mechanisms leading to AMPK overactivation in the brain." www.jneurosci.org/content/33/15/6245.abstract?sid=eb16f873-af98-4494- 872c-0289ff5cecd3 Dr. Simon Ridley, head of research at Alzheimer’s Research UK, said: “This study suggests AMPK could be an 10 April: Gene mutation increases dementia risk in important link between the build-up of amyloid in the African Americans brain and the breakdown of communication between American researchers have identified a new mutation in nerve cells in mice, leading the way towards further the ABCA7 gene that nearly doubles the risk of developing studies in people. As AMPK is involved in many biological Alzheimer's disease in African Americans. processes, much more work would be needed to know whether it could be a target for new Alzheimer’s drugs." ABCA7 is involved in producing cholesterol and lipids, Alzheimer's Research UK was not involved in the study. which suggests that these may be a more important www.cell.com/neuron/retrieve/pii/S0896627313001335 pathway to Alzheimer's disease in blacks than in whites. High cholesterol and lipid levels - which are more 15 April: A wrong signal from APP causes neuron common in blacks - can lead to vascular disease, heart death attacks and strokes. Therefore, treatments that lower these levels may potentially be an effective way to reduce Researchers at Ruhr-Universität in Bochum (Germany) or delay Alzheimer's in people with the gene variant. have developed a new hypothesis on the development of Alzheimer's disease, based on the interaction of the APP "The first thing this tells us is there are probably many and FE65 proteins. different ways to get Alzheimer's" said Dr. Richard Mayeux, lead author of the study and Professor of The amyloid precursor protein APP is already known as a Neurology, Psychiatry and Epidemiology at Columbia player in Alzheimer's disease. It spans the membrane of a University Medical Center. "It might be like some forms of neuron and anchors FE65 to that membrane. From there, cancer where the type of cancer you have dictates the FE65 moves into the nucleus, where it plays a role in DNA type of treatment you receive." replication and repair. Several gene mutations have been linked with increased In Alzheimer's disease, APP's activity is modified. The Alzheimer's risk with APOE-e4 as the most significant in scientists believe that this modification also changes the both whites and blacks. This study shows that both ABCA7 behaviour of FE65 when it moves into the nucleus. and APOE-e4 are major genetic risk factors in blacks. Instead of regulating DNA replication, it acts to instruct the entire neuron to replicate. However, neurons cannot Dr. Neil Buckholtz, Director of Neuroscience at the normally divide so they degenerate and die. National Institute on Aging, said: "This is a major finding because it shows that blacks have an additional risk factor http://jcs.biologists.org/content/early/2013/04/09/jcs.121004

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15 April: Sanofi cuts back on Alzheimer's research Dementia in Society French drug maker Sanofi has announced that it will no longer commit major resources toward a therapy for 4 April: US annual cost of care exceeds USD 50,000 Alzheimer’s disease. A study in the New England Journal of Medicine shows According to CEO Chris Viehbacher, more research needs that the average annual cost of care for a patient with to be done before taking drugs into expensive, later-stage dementia can exceed USD 50,000 (EUR 38,000) in the trials. He said: "We have to do a lot more basic science United States. work to understand what’s going on. We really, at best, Researchers determined the annual costs to be between partially understand the cause of the disease. It’s hard to USD 41,689 and 56,290. This adds up to between USD come up with meaningful targets. Unless we’ve got better 159-215 billion (EUR 121-164 billion) in American health targets, we’re not really making any progress.” care dollars, of which USD 11 billion (EUR 8.4 billion) is 29 April: CD33 gene exhibits radical differences in paid for by Medicare. behaviour The authors also projected that the aging of the US population will result in an increase of nearly 80% in total American scientists have determined that controlling the societal costs per adult by 2040. activity of the CD33 gene may reduce amyloid build-up in the brain. This study was funded by the National Institute on Aging.

The team headed by Dr. Rudolph Tanzi, Professor of www.nejm.org/doi/full/10.1056/NEJMsa1204629 Neurology at Harvard Medical School, first identified CD33 in 2008. They found that a subset of brain cells known as 8 April: Margaret Thatcher microglia showed high levels of CD33 and deduced that passes away at age 87 the gene acts as a molecular housekeeper. It patrols the Former UK Prime Minister Baroness nervous system and removes materials that don't belong Margaret Thatcher passed away on and could impair normal brain function - such as amyloid 8 April at the age of 87 after protein deposits. However, under certain conditions the suffering a stroke. gene dramatically changes its activity and destroys the same cells it is meant to protect. It was well known that Baroness Thatcher lived with dementia When the team looked at the brains of people who had during the last years of her life. This was originally died of Alzheimer's disease, they found that CD33 revealed by her daughter in 2005 but never officially appeared in high quantities along with very large amounts confirmed. of dead neurons. Instead of engulfing and removing amyloid, the microglia with CD33 were targeting healthy Baroness Thatcher (13 October 1925 – 8 April 2013) was cells. To confirm this, the researchers conducted tests in Conservative Prime Minister from 1979 to 1990 and the culture and mouse models. first woman to hold the post. While serving as Education Secretary, she successfully challenged former Prime They found that when microglia were stripped of CD33, Minister Edward Heath for her party's leadership in 1975. they went back to performing their original cleaning She won general elections in 1979, 1983 and 1987. duties. Alzheimer mouse models without CD33 showed lower levels of amyloid than animals with the gene, Margaret Hilda Thatcher is survived by her daughter suggesting that CD33 was clearing the protein away. Carol, her son Mark and two grandchildren. Dr. Tanzi said: "At some point, as the amyloid is making 20 April: ADI organises successful 28th the cells sick, and forming tangles as lots of neurons are International Conference in Taipei dying, the microglia put on their battle gear and turn radical, killing whatever they think is attacking the brain. Alzheimer’s Disease International The result is friendly fire, and they start to kill so many (ADI) organised its 28th International neurons that the microglia are now detrimental; they are Conference in collaboration with the no longer clearing but they're rounding up nerve cells and Taiwanese Alzheimer’s Disease shooting out free radicals and causing a lot of damage. Association (TADA Chinese Taipei) from 18 to 20 April. "We just need to take advantage of the housekeeping Held under the motto “Dementia: Action for Global functions of CD33 and entice them to stay helpful and not Change”, the conference was attended by over 1,000 go crazy." participants and brought together people with dementia, professional and family carers, researchers, clinicians, www.cell.com/neuron/retrieve/pii/S0896627313003164 scientists and staff of national Alzheimer associations. The conference also provided an opportunity for ADI to organise a meeting of its Elected Board and a Council Meeting bringing together the representatives of its www.alzheimer-europe.org/Donation national member organisations. The ADI Board approved the new partnership agreement with Alzheimer Europe which aims at improving the communication and collaboration between the two organisations.

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The organisers of the conference also commemorated the occasion by organising an International Memory Walk. New Publications & Resources More than 3,000 participants joined the walk, including 4 April: EFID issues call for 2014 award proposals the Taiwanese President Ma Ying-Jeou and the Mayor of Taipei who announced their continued commitment to The European Foundations’ Initiative on Dementia (EFID) supporting people with dementia and their carers. has issued a second open call for proposals for its 2014 award. The award is designed to reward initiatives promoting the integration, support and involvement of people with dementia and their carers in the local community through a large range of activities. It is available to groups and communities in all EU member states. The following are examples of project elements that could win the award:

 support encounters between people with and without dementia  support daily and practical tasks, and encourage neighbourly assistance, to allow people with 30 April: British police will use GPS to track people dementia and their relatives to continue taking part with dementia in community life and reduce their isolation A British police force has announced plans to begin  give people with dementia a stronger "voice" and tracking people with dementia using GPS locators. The greater empowerment, respecting their autonomy aim is to quickly locate people who are at high risk of and citizenship becoming lost around the Sussex area in south-eastern  raise public awareness about the topic in order to England. GPS locators are already in wide use by British reduce stigmatisation, and change the societal health and social services agencies, but this is the first perception of dementia by informing and educating, time a police force is involved. and by conveying different, more balanced views of dementia. The devices are worn around the neck or attached to a keychain and send a person's location to a website every EFID is an initiative of the Network of European four minutes. This information can be accessed by the Foundations (NEF) under the chairmanship of the King police and the person's family. Tanya Jones, Chief Baudouin Foundation of Belgium. Is consists of several Inspector of the local police force, described this as a cost- foundations that have joined forces to fight stigmatisation effective strategy that would save police time and and work towards changing the societal perception of resources by not having to frequently search for lost dementia, through an awareness-raising campaign and people. the support of local projects. The other foundations participating in EFID are The Atlantic Philanthropies (USA), However, the National Pensioners Convention on Robert Bosch Stiftung (Germany) and Fondation Médéric Wednesday called the initiative inhumane, arguing that Alzheimer (France). patients could be stigmatised and made to feel like criminals. Dot Gibson, General Secretary of the group, More information and applications can be found on the said: "Dementia patients need human interaction, not NEF website. tagging." She added that dementia patients haven't www.nef-europe.org/call-for-proposals/ committed any crime and that this was more about saving www.nef-europe.org/wp-content/uploads/2013/05/FAQ.pdf money than treating people with dignity. 9 April: UK Alzheimer's Society releases a report On the other hand, some experts said the GPS technology on loneliness can be enormously helpful if used properly. Dr Julia Botsford, head researcher for the Dementia UK charity, The Alzheimer's Society has released a new report that said: "This could empower people to be freer in terms of explores the quality of life of people with dementia. their movement and give families peace of mind, but the "Dementia 2013: The hidden voice of loneliness" reveals challenge is to ensure the patients' civil liberties are being that nearly two thirds (62%) of more than 250,000 people respected." She added that such devices could allow with dementia who live on their own are lonely, dementia patients to live longer on their own. compared to just 24% of people over the age of 55. In Similarly, Chris Quince from the Alzheimer's Society said: addition, over half of the general public (54%) believe that "It's vital that consent is always sought from a person with people with dementia have a bad quality of life. This was dementia, unless their carer or family member has power echoed in feedback from people with dementia, with 70% of attorney and makes decisions on their behalf. Any saying they had stopped doing things they used to do attempt to determine what is best for an individual who because of lack of confidence. The majority of people with does not have capacity to consent would require careful dementia also felt anxious or depressed (63%) and a third inquiry and judgment. Any tracking system must support of people (35%) said they’d lost friends after a diagnosis. and never replace good quality care." Jeremy Hughes, Chief Executive of Alzheimer’s Society, said: "This report reveals the stark truth that too many

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people with dementia, especially the thousands who live neurobiological research by a young scientist of 35 years alone, are truly isolated. We need to put a stop to this of age or younger, as described in a 1,000 word essay epidemic of loneliness, not only to improve quality of life based on research performed during the past three years. but also to save thousands from reaching crisis point and being admitted to hospital unnecessarily or care homes This prize acknowledges the increasingly active and early. important role of neurobiology in advancing our understanding of the functioning of the brain and the "The Prime Minister’s Challenge has put dementia in the nervous system - a quest that seems destined for spotlight. However, the reality is that many people still dramatic expansion in the coming decades. The prize was feel disconnected from society. It’s time for all of us to established in 2002 and encourages the work of promising play a part in helping people with dementia live well with young neurobiologists by providing support in the early the condition." stages of their careers. The report is available free of charge on the Alzheimer The winner of the Eppendorf and Science Prize for Society website. Neurobiology is awarded USD 25,000 and publication of his or her essay in the journal Science. The essay and www.alzheimers.org.uk/site/scripts/news_article.php?newsID=1542 those of up to three finalists are also published on Science 9 April: EMA publishes a glossary of regulatory Online. The award is announced and presented at a terms ceremony concurrent with the annual meeting of the Society for Neuroscience in the USA. Eppendorf provides The European Medicines Agency (EMA) has released a financial support to help enable the grand prize winner new website containing a glossary of the main regulatory and finalists to attend the event. terms that are currently used by the agency. The website also provides useful links to related terms. The glossary The application deadline is 15 June 2013. More has been developed to help users understand regulatory information is available on the Science website. terminology, but definitions may differ from those given www.sciencemag.org/site/feature/data/prizes/eppendorf/howto.xhtml in European Union legislation. www.ema.europa.eu/ema/index.jsp?curl=pages/document_library/landing/g Education opportunities lossary.jsp&mid=WC0b01ac05800973d7 29 April: Join the summer school on Grid and 10 April: EMA publishes report on clinical trial Cloud Workflows and Gateways participation The organisers of a weeklong study course on European The European Medicines Agency (EMA) has released a grid and cloud infrastructures are looking for participants report detailing the origins of patients in clinical trials to attend the course and/or to be speakers about connected to EMA marketing authorisations. The report Workflow Interoperability. covers the period 2005-2011 and also shows the geographical locations of these trials. In 2005, some The course will take place during 1-6 July 2013 in 87,000 people participated in clinical trials, compared to Budapest, Hungary. It is organised by the SZTAKI Cloud nearly 143,000 people in 2011. project and two current FP7 projects called SCI-BUS and ER-flow. Results show that only 38.1% of trial participants were from EU/EFTA/EEA countries. More than 34% of patients Participants will most likely be application and workflow were enrolled in North America and the regions developers, science gateway developers, system Central/South America and Middle East/Asia/Pacific each administrators and staff members of companies who accounted for 9.4% of patients. Smaller numbers were would like to establish and use company level private recruited in the CIS region (4.4%), Africa (2.6%), Australia- clouds or other commercial clouds via a high-level New Zealand (1.5%) and Eastern Europe-non EU (0.5%). gateway service. Central/South America had the strongest growth in number of patients, followed by the CIS and Middle There are already several well established grid and cloud East/Asia/Pacific. infrastructures in Europe. The next issue is how to exploit these infrastructures, how to port and develop application The locations of clinical trials show a similar trend: the for these infrastructures and how to extend their user highest numbers of sites were located in North America communities. The main goal of this summer school is to (42.4%) and EU/EEA/EFTA (36.2%), followed by Middle give answers for these questions and to promote best East/Asia/Pacific (6.6%) and Central/South America practice examples for potential application developers (6.0%). The Middle East/Asia/Pacific and CIS regions saw and users of e-science infrastructures. the biggest growth in clinical trial sites during the period, closely followed by Central/South America. The report is The registration deadline is 27 June 2013. Applicants are available on the EMA website. invited to visit www.lpds.sztaki.hu/summerschool2013/ for more information. www.ema.europa.eu/docs/en_GB/document_library/Other/2009/12/WC500 016819.pdf 30 April: University of Leuven seeks applicants for 16 April: Eppendorf & Science issue call for annual Nursing Ethics course neurobiology prize The Centre for Biomedical Ethics and Law of the University of Leuven (Belgium) is accepting applications The Eppendorf & Science Prize for Neurobiology is for an English-language course on Nursing Ethics in awarded annually for the most outstanding December 2013.

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This intensive, three-day course will focus on foundational approaches as well as contemporary and educational issues in the field of Nursing Ethics. It is based on an interdisciplinary perspective and will include philosophical, theological, nursing and clinical-ethical aspects. The course is part of the Erasmus Mundus Master of Bioethics programme. It is intended for participants from diverse professional backgrounds, such as nursing, medicine, philosophy and theology, health care administration and PhD students undertaking courses of Contact Alzheimer Europe: study in these areas. Additional information is available Alzheimer Europe, 145 route de Thionville, L-2611, Luxembourg on the University's website. [email protected], www.alzheimer-europe.org Alzheimer Europe Board https://med.kuleuven.be/nl/erasmus-mundus-bioethics/documents/nursing- Chairperson: Heike von Lützau-Hohlbein (Germany); Vice-Chairperson: Iva ethics Holmerová (Czech Republic); Honorary Secretary: Charles Scerri (Malta); Honorary Treasurer: Maria do Rósario Zincke dos Reis (Portugal); Members: Patrick Maugard (France), Maurice O’Connell (Ireland), Sirpa Pietikäinen (Finland), Helga Rohra (Germany), Alicja Sadowska (Poland), Henry Simmons (UK - Scotland). Alzheimer Europe Staff Executive Director: Jean Georges; EU Public Affairs Officer: Annette Dumas; Administrative Assistant: Kate Ellis; Editor – Dementia in Europe Magazine: Julie Fraser; Information Officer: Dianne Gove; Conference and Event www.alzheimer-europe.org/Donation Coordinator: Gwladys Guillory; Communications Officer: Alex Teligadas; Administrative Assistant: Grazia Tomasini.

AE Calendar 2013

Date Meeting AE Representative 13 May IMI Stakeholder Forum (Brussels, Belgium) Annette 13-14 May NILVAD project meeting (Hohenkammer, Germany) Alex European Commission "Month of the Brain" conference "European brain research : successes and 14 May Annette next challenges" (Brussels, Belgium) S&D discussion in the European Parliament on ‘Access to quality long-term care : a right for all’ 15 May Annette (Brussels, Belgium) Ethics work on restrictions of freedom at the Identity and Belonging workshop at the Edinburgh 16 May Dianne School of Law (Edinburgh, UK) 16 May EMIF project meeting (Barcelona, Spain) Alex European Patients’ Forum General Assembly Meeting, EPF Annual Conference "10 Years of active 22-24 May involvement: how far have we come, where do we need to go?" and EGAN conference on "Effective Annette healthcare requires good nutritional care" (Dublin, Ireland) 28 May 22nd Annual Conference of La Ligue Alzheimer (Libramont, Belgium) Alex European Commission D4 Action Group meeting (European Innovation Partnership on Active and 29 May Annette Healthy Ageing) (Brussels, Belgium) Future Conferences

Date Meeting Place 23-24 May 2013 3rd International Conference on Neurodegenerative Disorders: Immunotherapy and Biomarkers, Uppsala, Sweden http://eventus.trippus.se/immunotherapy_uppsala2013 5-6 June 2013 Pioneers in healthcare, [email protected] Brussels, Belgium 8-11 June 2013 23rd ENS 2013 meeting, www.congrex.com Barcelona, Spain 13-14 June 2013 EU Summit on active and healthy ageing: An action agenda for European cities and Communities, Dublin, Ireland http://www.ahaconference2013.ie 23-27 June 2013 The 20th IAGG Congress of gerontology and geriatrics, www.iagg2013.org Seoul, Korea 1-2 July 2013 NeuroConnection, www.neuroconnection.eu Marseille, France 21-26 September 2013 XXI World Congress of Neurology, www.oegnt.at Vienna, Austria 5-9 October 2013 26th ECNP (European College of Neuropsychopharmacology), www.ecnp-congress.eu Barcelona, Spain 10-12 October 2013 23rd Alzheimer Europe Conference: “Living well in a dementia-friendly society”, www.alzheimer- St. Julian’s, Malta europe.org/EN/Conferences 17-20 October 2013 8th International Congress on Vascular Dementia – ICVD 2013, www.kenes.com/icvd Athens, Greece 11-14 December 2013 The 16th Asia Pacific regional Conference of Alzheimer’s disease international, www.aprc2013- Hong Kong & Macau hongkong-macau.com 20-22 March 2014 58th Annual meeting of the German society for clinical neurophysiology and functional imaging Berlin, Germany (DGKN), www.dgkn-kongress.de 20-23 March 2014 30th International Congress of Clinical Neurophysiology of the IFCN (ICCN), www.iccn2014.de Berlin, Germany 26-29 March 2014 13th Int. Geneva/Springfield Symposium on Advances in Alzheimer Therapy, www.ad-springfield.com Geneva, Switzerland 5-9 July 2014 9th FENS Forum of Neuroscience, http://forum.fens.org/2014 Milan, Italy

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The Alzheimer Europe newsletter arises from the 2013 Work Plan of Alzheimer Europe, which has received funding from the European Union in the framework of the Health Programme.

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NEWSLETTER May 2013

In other EU news, the Irish Highlights in this issue Editorial Presidency highlighted the May was another European Month of the Brain by 5 April: EMA invites comments 3 hosting a conference on brain for safer medicines busy month for us. We attended research and healthcare. IMI held 7 May: Baxter trial fails to 5 various project a forum to evaluate its current meet endpoints meetings and projects. The Commission 14 May: Luxembourg launches 7 conferences and appointed an expert panel for national dementia plan finalised the health issues while the EMA is 29 May: EP committee 4 programme for calling for opinions on making endorses new rules for clinical the 23rd Alzheimer Europe safer medicines for older people. trials Conference in Malta. Many interesting publications 31 May: AE finalises 23rd 3 The NILVAD project is on track and appeared in May, including an EU conference programme the clinical trial has already begun brochure on Joint Action projects and the first newsletter of the in Ireland. EMIF is also proceeding smoothly and the partners have European Brain Council. The UK made progress in the first few Alzheimer's Society re-issued a months of the project. popular activity book for people with dementia and the NHS Our top news item in May is the launched an online e-learning launch of the national dementia course for dementia workers. plan in Luxembourg. This long- awaited strategy is now in place Our next lunch debate will take and will benefit all people who are place on 18 June and will focus on living with dementia, their families the results of the ALCOVE project. The new issue of Dementia in and caregivers. Portugal has also made progress by clearing a major Europe Magazine will appear on hurdle on the way to its own plan. the same day. Issue 14 features Minister Kathleen Lynch speaking Table of contents In our other member countries, about Ireland's national dementia Norway's Health Association is this strategy and MEP Alojz Peterle Editorial ...... 1 year's recipient of a large grant outlining the challenges of living Alzheimer Europe ...... 2 and Scotland continues to turn out with dementia in Slovenia. We also new Dementia Champions. The report on the latest meeting of the AE Projects ...... 2 Greek and Bulgarian associations European Working Group of Alzheimer Europe Networking 2013 ... 2 have launched a new e-learning People with Dementia and many tool and there is also a new online activities of our partners and EU Developments ...... 3 forum from our Danish colleagues. member associations. Policy Watch...... 5 Spain's CEAFA issued a stern proclamation against austerity and There are now only three weeks Members’ News ...... 6 the Ligue Alzheimer in Belgium left to take advantage of the Early Bird registration rates for our 23rd Science Watch ...... 7 held a very successful annual conference. Conference. We encourage Job opportunities ...... 11 delegates to visit our website and On the scientific front, Baxter's sign up early. The final conference Dementia in Society ...... 9 immunoglobulin trial failed to programme will be published very New Publications & Resources...... 10 meet its goals, even as TauRx soon. began recruiting for global phase 3 AE Calendar 2013 ...... 12 trials for both Alzheimer's disease We'll also be doing our best to address the backlog of updates for Future Conferences ...... 12 and fronto-temporal dementia. The European Commission is also the website. We are grateful to interested in clinical trials and is receive your suggestions and producing new rules to make them promise to implement them as as safe and transparent as soon as we can! possible. Jean Georges Executive Director

Page 1 of 13 Newsletter: May 2013

on site initiation, randomisation training and adverse Alzheimer Europe effect reporting. 31 May: Alzheimer Europe finalises programme According to the project team leaders, recruitment has for 23rd Annual Conference already commenced at the lead site in Dublin (St. James's Hospital) and recruitment will start shortly in the other Alzheimer Europe would like to thank all the people who sites across Europe. The delegates also looked at potential submitted abstracts for its 23rd Annual Conference in strategies to exploit the NILVAD study and patient data, Malta. The Scientific Committee has approved 95 oral and such as new partnering proposals and funding 67 poster presentations and notifications have been sent applications. out to all applicants. The NILVAD project (2012-2017) has received support We are very pleased to have a wide variety of interesting from the European Commission’s Seventh Framework and relevant topics for our delegates. The final Programme. Conference programme will soon be available on our www.nilvad.eu website. If you have not yet registered for the Conference, our "Early bird" reduced rates are still available up to 30 June.

www.alzheimer-europe.org/Conferences/St.-Julian-s-Malta-2013/AE- Conference-Registration-Form AE Projects

13 May: NILVAD project team holds General

Assembly

The NILVAD project partners held a General Assembly on 13- 14 May in Hohenkammer near Munich, Germany.

This project will conduct a Phase 3 clinical trial of the drug www.alzheimer-europe.org/Donation nilvadipine in 500 subjects with mild to moderate Alzheimer's disease in nine European countries. During the conference, the partners discussed the preparation of the trial sites and compared notes on the progress of the first months of recruitment. This included presentations

Alzheimer Europe Networking

On 13-14 May, Alex attended the NILVAD General Assembly (Hohenkammer, Germany). On 14 May, Annette attended the European Commission "Month of the Brain" conference "European brain research: successes and next challenges" (Brussels, Belgium). On 15 May, Annette attended the S&D discussion in the European Parliament on "Access to quality long-term care: a right for all" (Brussels, Belgium). On 16 May, Dianne presented the ethics work on restrictions of freedom at the Identity and Belonging workshop at the Edinburgh School of Law (Edinburgh, United Kingdom). On 16 May, Alex attended an EMIF project meeting (Barcelona, Spain). On 21 May, Luisa Bartorelli, head of Alzheimer Uniti Italy, visited the premises of Alzheimer Europe and ALA's day care centre (Luxembourg, Luxembourg). On 22-24 May, Annette attended the European Patients’ Forum General Assembly Meeting, EPF Annual conference "10 Years of active involvement: how far have we come, where do we need to go?" and EGAN conference on "Effective healthcare requires good nutritional care" (Dublin, Ireland). On 27-28 May, Julie attended the conference "Healthy Brain Healthy Europe - A new horizon for brain research and healthcare" (Dublin, Ireland). On 28 May, Alex attended the 22nd Annual conference of La Ligue Alzheimer (Libramont, Belgium). On 29 May, Annette went to the European Commission D4 Action Group meeting of the European innovation partnership on active and healthy ageing (Brussels, Belgium). On 29 May, Jean attended the negotiation meeting for the IMI funded AETIONOMY project (Brussels, Belgium). On 30 May, Annette attended the EBC/ESF/FENS event in the European Parliament: "The prospects of brain research with Horizon 2020: responding effectively to carers’ social needs" (Brussels, Belgium).

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Members of the European Alzheimer’s Alliance

Austria: Becker K. Heinz (EPP), Werthmann Angelika (NI). Belgium: Demesmaeker Mark (Greens/EFA), Ries Frédérique (ALDE), Staes Bart (Greens/EFA), Tarabella Marc (S&D). Bulgaria: Parvanova Antonyia (ALDE). Cyprus: Triantaphyllides Kyriacos (GUE-NGL). Czech Republic: Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP). Denmark: Christensen Ole (S&D), Rohde Jens (ALDE), Schaldemose Christel (S&D). Finland: Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli (ALDE), Pietikäinen Sirpa (EPP). France: Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise (EPP), Juvin Philippe (EPP), Morin-Chartier Elisabeth (EPP), Pargneaux Gilles (S&D). Germany: Niebler Angelika (EPP), Roth-Behrendt Dagmar (S&D), Ulmer Thomas (EPP), Weisgerber Anja (EPP). Greece: Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni (S&D), Kratsa-Tsagaropoulou Rodi (EPP). Ireland: Aylward Liam (ALDE), Childers Nessa (S&D), Crowley Brian (ALDE), McGuiness Mairead (EPP), Mitchell Gay (EPP). Italy: Panzeri Pier Antonio (S&D), Toia Patrizia (S&D). Lithuania: Vilija Blinkeviciute (S&D). Luxembourg: Engel Frank (EPP), Lulling Astrid (EPP). Malta: Simon Busuttil (EPP), Joseph Cuschieri (S&D). Netherlands: De Lange Esther (EPP), van Nistelrooij Lambert (EPP), Wortmann-Kool Corien (EPP). Poland: Łukacijewska Elżbieta (EPP). Portugal: Carvalho Maria da Graça (EPP), Coelho Carlos (EPP), Matias Marisa (GUE/NGL). Romania: Antonescu Elena Oana (EPP), Busoi Cristian (ALDE), Sârbu Daciana Octavia (S&D), Tanasescu Claudiu Ciprian (S&D). Slovakia: Mikolasik Miroslav (EPP), Zaborska Anna (EPP). Slovenia: Peterle Alozj (EPP). Spain: Badia i Cutchet Maria (S&D), Estaràs Ferragut Rosa (EPP). United Kingdom: Anderson Martina (GUE-NGL), Ashworth Richard (ECR), Hall Fiona (ALDE), McAvan Linda (S&D), McCarthy Arlene (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Taylor Keith (Greens/EFA), Vaughan Derek (S&D), Watson Graham (ALDE), Willmott Glenis (S&D), Yannakoudakis Marina (ECR).

urgent need for new drugs. Researchers are currently EU Developments investigating schizophrenia, depression, chronic pain, 5 April: EMA invites comments about safer autism and Alzheimer’s disease. The latter is being addressed in the PharmaCog and EMIF-AD projects, which medicines for older people both include Alzheimer Europe as a partner. The European The afternoon session concentrated on IMI’s place in the Medicines Agency European Research Area. IMI is currently the largest (EMA) has opened a public-private partnership in healthcare research, consultation for a concept paper to investigate the quality covering all aspects of science, research, health, aspects of medicines for older people. regulatory aspects and clinical practice. Existing projects Currently, there is no specific legal requirement for the have shown tangible deliverables within two years, which development of medicines for geriatric use. Nevertheless, has never been achieved by other funding schemes. there is a need to ensure that medicines are fit for use by www.imi.europa.eu/events/2013/03/01/imi-stakeholder-forum-2013 patients of all ages within the indicated patient populations. Given the growing older population, the EMA 21 May: Commission nominates "investing in recognises that it should ensure that the specific needs of health" expert panel the elderly are integrated during the development, approval and use of medicines. On 21 May, the European Commission nominated an independent expert panel to provide advice on effective The EMA is seeking opinions and comments on this topic, ways of investing in health. especially from regulators, pharmaceutical industry, pharmacists, medical practitioners, academic groups, The panel will advise on health planning, budget patient associations and national bodies responsible for prioritisation, health services research, hospital and medicines’ reimbursement. The deadline for submissions healthcare management, healthcare provision and health is 30 June 2013. education and promotion. The Commission will circulate this advice to Member States on an informal and non- It is anticipated that the drafting of the reflection paper binding basis. will start in Q3 2013 and that it will be finalised in Q3 2014, with an external consultation in Q1/Q2 2015 and The 12 panellists are Pedro Pita Barros, Margaret Barry, finalization by the end of that year. Helmut Brand, Werner Brouwer, Jan de Maesener, Bengt Jonsson, Fernando Lamata, Lasse Lehtonen, Dorjan www.ema.europa.eu/ema/doc_index.jsp?curl=pages/includes/document/do Marusic, Clifford Martin McKee, Gualtiero Ricciardi and cument_detail.jsp?webContentId=WC500141560&murl=menus/document_li brary/document_library.jsp&mid=0b01ac058009a3dc Sarah Thomson. http://ec.europa.eu/health/healthcare/docs/dec_members_expert_panel_20 13 May: IMI holds annual Stakeholder Forum 13_en.pdf On 13 May, the Innovative Medicines 27 May: Ireland hosts conference on brain Initiative (IMI) held its annual meeting in research and healthcare Brussels. The conference focused on how IMI projects are increasing our On 27-28 May, the Irish EU understanding of brain disorders and leading to the Presidency hosted a conference development of better trials and new drugs for these entitled “Healthy Brain, Healthy disorders. Europe: a new horizon for brain research and healthcare” in Dublin. The morning was dedicated to brain research, an area where IMI is particularly active and where there is an

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The aim of the conference was to showcase achievements down in detail, so as to ensure proper access to in brain research, raise awareness of brain disorders and information and compensation for damages. Specific rules encourage EU countries to coordinate and optimise would also apply to clinical trials on pregnant or resources allocated to brain research and healthcare. It breastfeeding women, on persons deprived of liberty and was also the last of a series of events carried out under on people with specific needs. the “European Month of the Brain”. Glenis Willmott, MEP (UK) is the lead Rapporteur for this Dr. James Reilly, Irish Minister for Health, opened the piece of legislation. Her report was adopted unanimously conference by saying that the most effective way of by the Public Health Committee and she has received a addressing brain disorders is to work together and that mandate to negotiate an agreement with EU ministers. research must be translated into policy. www.europarl.europa.eu/news/en/pressroom/content/20130527IPR10525/ Delegates were able to attend five plenary sessions that html/Clinical-trials-clearer-rules-better-protection explored scientific progress in brain research, the socio- 29 May: Commission publishes report on public economic costs of brain-related care and the new health capacity approaches that will be needed for effective brain care in the future. There was also a panel discussion that On 29 May, the European Commission presented its identified recommendations for action on brain research “Public Health Capacity in the EU - Final report”. and healthcare throughout Europe. The report provides an overview of capacity for public A conference report will soon be available on the Irish EU health in EU Member States, with a view to identifying Presidency website. areas of action which can be taken at national and EU levels to strengthen public health capacity and improve population health. It is based on the results of a 2010-11 study by the Executive Agency for Health and Consumers It includes literature research, a quantitative and qualitative assessment at country level by national public health experts, case studies, policy dialogues and interviews with national stakeholders. There is also a new conceptual model for public health capacity, which was developed after assessing six key domains: leadership and governance, organisational structures, workforce, http://eu2013.ie/ financial resources, partnerships and knowledge development. 29 May: Parliament committee endorses new rules on clinical trials The report also makes recommendations for improvements to Member States’ public health capacity. On 29 May, the Public Health Committee in the European These include the need for additional resources, a Parliament endorsed draft EU rules for clinical trials of stronger focus on the behavioural, socio-economic and new medicines. The new regulation is designed to environmental determinants of health and more “good encourage research while protecting patients' rights and governance”, i.e. strengthening the competences for making simpler, more uniform rules. The new text makes public health at various levels of government as well as specific provision for low-risk trials, clarifies the duties of better processes policy formulation, implementation and ethics committees and details how to obtain informed evaluation. consent from patients. It also simplifies reporting procedures and empowers the Commission to conduct http://ec.europa.eu/health/healthcare/publications/index_en.htm checks. Finally, it stipulates that member states must 29 May: Parliament issues recommendations for respond to applications from clinical trial sponsors within effective 2014 elections fixed deadlines. The Constitutional Affairs Committee of the European Transparency will be improved by requiring that detailed Parliament has prepared a report of recommendations on summaries be published in a publicly accessible EU how EU Member States and political parties can improve database. This includes full Clinical Study Reports, once a the organisation of the 2014 European elections. The decision on authorisation is complete. Fines would be report, drafted by Andrew Duff, MEP (UK) follows recent imposed on sponsors who do not comply with this decisions to bring forward the polling date and to requirement. nominate party political candidates for the Commission For low-risk trials, compensation for damages would be Presidency. covered by the general compensation system established The report recommends that election ballot papers under the national security or health care system. For should list European political parties as well as national other clinical trials, the sponsor would be deemed liable ones. European parties should name their candidates for for damages, but could make use of a national European Commission President well in advance, to allow indemnification system which all Member States should them time to run an EU-wide campaign on EU issues. set up to reduce high insurance costs. National parties should say which European party they are The regulation also clarified the role of ethics committees affiliated with and announce their candidate for in authorising a clinical trial. The rules on obtaining a Commission President. person's informed consent to taking part in a trial are laid

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Political parties should also ensure that the names of 15 May: G8 countries will collaborate on dementia candidate MEPs are made public at least six weeks before research the start of polling. Parties should also field more female candidates and encourage equal representation wherever On 15 May, Prime Minister David Cameron announced possible. Finally, parties are encouraged to include EU that the UK will use its Presidency of the G8 to identify citizens residing in member states other than their own and agree a new international approach on dementia and registered to vote there. research, in recognition that the condition is fast becoming the biggest pressure on care systems around Candidates should be expected to pledge that if elected to the world. serve as an MEP, they will do so - unless they become ineligible by being appointed to a government or The Group of Eight (G8) is a forum for the governments of Commission post. the world's eight wealthiest countries: Canada, France, Germany, Italy, Japan, Russia, UK and To reverse the low turnout across the Member States, the USA. The EU is also part of the group. This year, the UK Committee calls on Member States to conduct campaigns holds the Presidency and can therefore arrange summits. that encourage citizens to vote. On the day, Member States should not publish election results until the close of In September 2013, there will be a specific G8 dementia polling in the member state whose electors are the last to summit in London. This will bring together the members' vote on 25 May 2014. Science and Health Ministers, dementia experts and industry figures in an effort to secure more coordination This non-legislative resolution is to be put to a vote by the and collaboration on dementia globally. full House in July. According to Mr Cameron, the UK and the US are also www.europarl.europa.eu/news/en/pressroom/content/20130527IPR10528/ html/Make-European-elections-more-European-says-Constitutional-Affairs- exploring opportunities to advance thinking on dementia Committee research and identify opportunities for more international collaboration. This joint leadership will help to tackle key issues such as facilitating the discovery and development of drugs and to advance thinking on future treatments and therapies.

www.gov.uk/government/news/uk-to-use-g8-to-target-global-effort-on- www.alzheimer-europe.org/Donation dementia 20 May: Portuguese dementia plan takes a major step forward Policy Watch A recent meeting held under the auspices 14 May: Luxembourg launches national dementia of the Portuguese Health Ministry proved plan to be an important step forward in the preparation of the national dementia On 14 May, Luxembourg's Health and plan in Portugal. Family Ministries presented the country's first national dementia plan during a press On 20-21 May, a group of some 40 dementia experts conference. persuaded the Portuguese government that existing dementia prevalence figures are sufficiently accurate to The two Ministries will work in concert to carry out the allow the next phase of the plan to proceed right away. plan. The Ministry of Health will be responsible for the The original government plan called for a dedicated areas of prevention, diagnostic standards, medical epidemiological study - an expensive and lengthy process. reimbursement and education. Meanwhile, the Family Ministry will develop a dedicated website and conduct an The group included psychiatrists, neurologists, general awareness campaign that includes a psycho-geriatric practitioners, researchers, members of the municipalities training course for health workers. and representatives of Alzheimer Portugal. Their work was coordinated by Prof Joel Menard, one of the At the beginning of the conference, both Ministers made architects of the original French Alzheimer Plan. They put the personal comment that one of their parents was forward a prevalence figure of 160,000 people with afflicted with Alzheimer's disease. Family Minister Marc dementia in Portugal. Spautz likened awareness of dementia today to that of AIDS 20 years ago: the general public had little or no The next phase of the national plan is a study to knowledge about it, so the disease was feared and its determine the needs of people with dementia. This study sufferers were stigmatised. Mr Spautz is confident that is already prepared and can begin very quickly. It will the campaign and the training course will help to begin in the north of Portugal and will return results eliminate these issues in Luxembourg. within six to nine months. According to a government spokesperson, the rest of the country will follow in turn. There are an estimated 6,500 people living with dementia in Luxembourg - of which 60% with Alzheimer's disease - Alzheimer Portugal was represented by Fátima Brito, Vice and they are expected to reach 8,500 by 2025. Chairperson and Celso Pontes, Coordinator of the Scientific Committee. The association is very pleased that http://www.sante.public.lu/fr/catalogue-publications/rester-bonne- its role as an active stakeholder has been acknowledged sante/sante-mentale/plan-action-national-maladies-dementielles/index.html and praised by the participants of this working group.

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situation or experts, e.g. doctors, nurses, psychologists, Members’ News lawyers and social workers. The Association hopes that 5 April: Norwegian broadcaster raises funds for the new site will attract many young people, who are used to seeking information and help on the internet. dementia research www.demensnet.dk The Norwegian Health Association has been elected by the Norwegian 2 May: Scotland gains 210 new Dementia National Broadcaster (NRK) as the Champions organisation that will benefit from their annual fundraising event in October 2013. On 2 May, 210 healthcare and social services professionals graduated from the The total sum is estimated at EUR 30 million. This will second and third cohorts of Scotland’s enable the Association to enhance and structure Dementia Champions Programme. This is Norwegian dementia research. In particular, the the first cohort to include social services staff who will Association will play a facilitating role in establishing a take their skills into local communities. The new Dementia national dementia network. One third of the funds raised Champions will work closely with Alzheimer Scotland’s will be used to create and run a national coordinated Nurse Specialists/Consultants across all NHS Boards in research program focusing on causes, prevention, Scotland. diagnostics and treatment of dementia and also initiate a national research network amongst dementia researchers The graduation ceremony took place in Edinburgh, with a in Norway. keynote address delivered by Alex Neil, Cabinet Secretary for Health and Wellbeing. He said: "It is essential that As a preparatory step, the association organised a one day both health and social care staff are well equipped to seminar that was attended by 50 Norwegian dementia understand the care people with dementia and their researchers - including 18 of the most prominent actors in families are entitled to, in order to ensure that services the field. Participants were informed of the latest are of the highest standards. Today's graduates will be developments in dementia research and also mid- and supported to apply what they have learned in their long-term future topics and strategies. workplaces so that they can improve dementia services right across the country." This was the first time a conference of this kind was organised in Norway. Feedback showed that this was an The original 100 healthcare graduates from 2012 are interesting and informative day. The setting allowed the already making a measureable difference in how people possibility to meet face to face, discuss possible future with dementia are cared for in Scotland’s acute hospitals. research collaborations and build relations. There is clear motivation amongst the researchers to collaborate and to 3 May: CEAFA protests against austerity measures have that the Norwegian Health Association as a partner On 3 May, CEAFA (Spanish and coordinator of a new dementia network. Confederation of Associations of The next step is to formalise, structure and establish the Families of People with Alzheimer's organisation of the research program. This will include and other dementias) issued a press interactive workshops with a smaller group of researchers release that decries the worsening economic situation of to prioritise the content of the programme. many people with dementia and their caregivers. 1 May: Denmark encourages inclusion and The article explains that most of these people are elderly launches new dementia forum pensioners living on fixed incomes. The government recently froze these incomes, but also raised insurance The Danish National Board of Social Services co-payment rates and imposed a new co-payment for has launched a campaign that focuses on the drugs. Further austerity measures have also been importance of maintaining sporting and announced, such as eliminating the Social Security cultural activities for people who live with contributions of family caregivers. dementia. The campaign was organised in CEAFA strongly protests these measures and warns that cooperation with the Danish Alzheimer Association and they are stifling the quality of life and dignity of many numerous leisure clubs and associations. individuals. These people have been paying into insurance The campaign is in line with the Association's activities to and retirement schemes all of their lives, but now their encourage physical and cultural activities for people with needs are being ignored. The austerity measures are dementia. According to Nis Nissen, Director of the Danish condemning many families to poverty, forcing them to Alzheimer Association, people with dementia may be choose between paying for access to health services and forced to withdraw from activities because they can no buying the basic necessities of life. The association is longer cope, but a club mate or a volunteer can easily convinced that there are better alternatives to get out of help by helping with transportation and guiding them the economic crisis than limiting the resources of those through the activities. who already have the least. The Association has also launched a new online dementia www.ceafa.es forum called Demensnet. The forum at www.demensnet.dk is a safe digital meeting place for people with dementia and their relatives. They can blog with other people or get advice from others in the same

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28 May: Belgian Ligue Alzheimer holds 21st Annual are Anzianienonsolo in Italy and Balkanplan Ltd. and NPO Conference in Bulgaria. On 28 May, Belgium’s Ligue Alzheimer held A similar information day is being organised in Bulgaria to a successful 21st Annual Conference present the SET CARE tool to Bulgarian carers. entitled "Living with Alzheimer’s disease For more information, please contact Ms Areti Efthymiou today" in Libramont. (Greece) at [email protected] or Ms Denitza The conference included an update on scientific research Toptchiyska (Bulgaria) at [email protected] and dementia prevalence in the country. These were followed by presentations on the activities of the Ligue's Science Watch regional chapters and a session with three people with dementia. This was conducted informally - in the style of 1 May: Anaesthesia is not a risk factor for an Alzheimer Café meeting - and was much appreciated dementia by the audience and participants alike. A new study from the Mayo Clinic shows that receiving There was also a round-table discussion featuring anaesthesia after the age of 45 is not a risk factor for caregiver experiences, the role of general practitioners dementia. and the development of training programmes in the region. Finally, representatives from the Association According to Dr. David Warner, Pediatric Luxembourg Alzheimer provided an overview of their Anaesthesiologist at Mayo, some elderly people have activities. problems with cognitive function for weeks or months following surgical procedures. There has been concern The conference was very popular, with some 450 that exposure to anaesthesia may be associated with delegates filling the hall to capacity. These included long-term cognitive changes, including dementia. "It's people with dementia and their carers, health and care reassuring we're adding to the body of knowledge that professionals, representatives from the Alzheimer there is not an association of anesthesia and surgery with Associations in Belgium and Luxembourg as well as Alzheimer's. There are a lot of things to worry about when Alzheimer Europe. There was a remarkably large an elderly person has surgery, but it seems that contingent of local residents, including students, who did developing Alzheimer's isn't one of them." not necessarily have dementia in their lives or families. This group was very active during the Q&A sessions and is The study analysed thousands of patient records from the testament to the efforts of the Ligue Alzheimer to raise Rochester Epidemiology Project, which gave researchers dementia awareness in Wallonia. access to the medical records of nearly all residents of Olmsted County, Minnesota. Researchers studied about 31 May: Athens AD association presents new e- 900 patients older than 45 who had dementia and lived in learning tool for carers Olmsted County from 1985 to 1994. They compared that group to people of similar ages in Olmsted County who On 7 June, the Athens did not develop dementia during that time. They found Association of Alzheimer’s that about 70% of the patients in both groups needed Disease and Related Disorders surgery requiring general anaesthesia - meaning those and various partners will host who had dementia and underwent surgery that included an information day for the general anaesthesia did not get worse, and those who did SET CARE project at the University of Athens. not have dementia and had surgery did not develop dementia as a result. The SET CARE partners have developed a self-study e- learning tool for caregivers of elderly people, including www.mayoclinicproceedings.org/article/S0025-6196(13)00124-9/abstract people with dementia. The original content of the course was created in Italy; the partners translated and adapted 6 May: Family longevity delays onset of dementia the material for use in both Greece and Bulgaria. A joint Danish-American study has shown that dementia During the information day, the starts later in families with exceptional longevity. organisers will present the SET Researchers followed more than 1,800 participants (1,510 CARE materials to Greek family members and 360 spouses as controls) in the Long organisations such as job centres, Life Family Study, which is evaluating genetic and non- the local Alzheimer’s association genetic factors associated with extreme longevity. They chapters, NGOs and other public looked at the onset of Alzheimer's disease among blood bodies that can help promote and disseminate this tool. relatives within long-living families and compared that There will be a demonstration of the SET CARE tool, with similar data on their spouses. followed by a discussion with experts on its usability in an educational framework. The information day will also Results showed that older family members (average age feature presentations on dementia, the burden of care, 88) had similar rates of mental decline as their spouses. projects for older people in Greece and distance learning. However, sons and daughters (average age 70) of exceptionally long-lived people had less than half the risk The other Greek partners of the SET CARE project are the of Alzheimer's disease than their similarly aged spouses. Centre of Family and Child Care, 01 plirofoki ekpaideftiki, the Greek-Bulgarian Cultural Association and the The research team was led by Dr. Stephanie Cosentino, Municipality of Korydallos. The partners outside of Greece Assistant Professor of Neuropsychology at New York's Columbia University Medical Center. She said: "Overall, a

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higher proportion of family members than their spouses 10 May: Leukemia drug may help reduce Lewy were dementia-free until age 90. After 95 years of age, bodies however, exceptionally long-lived individuals had a high prevalence of dementia, pointing to a delayed onset of A leukemia drug called nilotinib has been found to slow mental impairment in families with exceptional the production of tau and alpha-synuclein proteins in the longevity." brain. Alpha-synuclein is the main component of Lewy bodies and thus mainly associated with Parkinson's http://archneur.jamanetwork.com/article.aspx?articleid=1684864 disease. 7 May: Baxter's immunoglobulin trial fails to meet Researchers affiliated with Georgetown University endpoints administered nilotinib to mouse models and found that it On 7 May, Baxter announced that its Phase III clinical eliminated abnormal protein build-up in their brains. The study of immunoglobulin (IG) did not meet the co-primary treated mice saw improvements in both cognitive and endpoints of reducing cognitive decline and preserving motor functions and also lived longer compared to mice functional abilities in patients with mild to moderate treated with placebo. Alzheimer’s disease. The research team was headed by Dr. Charbel Moussa, After 18 months of treatment, participants taking the IG Assistant Professor and Head of Laboratory for Dementia treatment did not demonstrate statistically significant and Parkinsonism at Georgetown. He is now planning differences in the rate of cognitive decline or functional clinical trials for Dementia with Lewy Bodies and hopes to ability as compared to placebo. later include Alzheimer's and Parkinson's diseases as well. However, one sub-group showed a positive, numerical Nilotinib is marketed as Tasigna by Novartis in the USA difference in change from baseline versus placebo in and the EU. cognition as measured by the ADAS-Cog and 3MS tests. http://hmg.oxfordjournals.org/content/early/2013/05/09/hmg.ddt192.abstra These participants included people with moderate ct?sid=0b253501-3ce4-4319-935b-c1bbd93347b5 Alzheimer's disease and carriers of the ApoE4 genetic 14 May: New synthetic drug improves memory in marker, while the differences ranged between 16-29%. mice Ludwig Hantson, President of Baxter’s BioScience business, said: “The study missed its primary end-points, A new synthetic compound called J147 has been shown to however we remain interested by the pre-specified sub- reverse memory loss and reduce amyloid levels in aged group analyses, particularly among patients with mouse models. moderate disease and those who carry a genetic risk Researchers from the Salk Institute for Biological Studies factor for Alzheimer’s disease, two patient groups that are in California administered the drug to 20-month-old mice in great need of advances in care. A detailed analysis of with advanced Alzheimer's disease pathology for three the results from the GAP study continues, and we look months. They observed reductions in memory loss and forward to a greater understanding of the full data set.” levels of amyloid, as well as an increase of the BDNF www.baxter.com/press_room/press_releases/2013/05_07_13_gap_study.ht protein. ml BDNF (brain-derived neurotrophic factor) protects 10 May: Depression after age 50 is a risk factor for neurons from toxins, helps new neurons grow and dementia connect with other brain cells and is involved in memory formation. Post mortem studies show lower than normal Analysis conducted by scientists at the University of levels of BDNF in the brains of people with Alzheimer's Pittsburgh's school of Medicine in the US and the Federal disease. University of Minais Gerais in Brazil found that vascular dementia rates are significantly higher in people who The team was headed by Prof David Schubert, Head of the have previously suffered from depression. Cellular Neurobiology Laboratory at Salk. He said: "In addition to yielding an exceptionally promising Dr. Breno S. Diniz, a psychiatrist at Minais Gerais who led therapeutic, both the strategy of using mice with existing the study, said that late-life depression is one of the most disease and the drug discovery process based upon aging common psychiatric conditions in older people. It has long are what make the study interesting and exciting." He been associated with the development of other added that this study "more closely resembles what conditions and higher death rates. happens in humans, who have advanced pathology when The study looked at people aged over 50 who did not diagnosis occurs and treatment begins." have dementia to begin with and analysed them in follow- In a separate experiment, the researchers tested J147 up periods of 6.1 years. The results showed that directly against Aricept and found that it performed as depression after the age of 50 increased the risk of all- well or better in several memory tests. cause dementia by 1.85 times. For Alzheimer’s disease, the risk factor is 1.65 while vascular dementia is the most This study was supported by the Alzheimer's Drug likely form of dementia at 2.52. Discovery Foundation, the Bundy Foundation, the Fritz Burns Foundation, the George E. Hewitt Foundation, the http://bjp.rcpsych.org/content/202/5/329.abstract?sid=416b4def-0796-45ef- b87a-b2b8dfe2a249 Alzheimer's Association, and the National Institutes of Health.

http://alzres.com/content/5/3/25/abstract

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21 May: Vitamin B slows atrophy of brain areas propagate themselves indefinitely, using up normal tau affected by dementia protein and converting it into the toxic aggregates. After destroying the nerve cells where they are initially formed, A research team from Oxford University has shown that a the aggregates go on to infect nearby healthy neurons, treatment based on Vitamin B can slow atrophy of the progressively spreading and accelerating the destruction brain areas affected by dementia. throughout the brain. LMTX stops this aggregation process and releases the trapped tau protein in a form Previous studies have shown that a large daily dose of which can be easily cleared by nerve cells. three types of vitamin B (B12, B6 and B9 or folic acid) can slow mental decline in elderly people who suffer from http://www.clinicaltrials.gov/ct2/show/NCT01626378?term=fronto- mild memory problems. This study was a re-examination temporal+dementia&rank=5 http://www.clinicaltrials.gov/ct2/show/NCT01689233?term=taurx&rank=3 of the previous results. It showed that high doses of the vitamins (particularly B12) can lower the levels of an amino acid called homocysteine, which is associated with 24 May: 2012 bexarotene study results are called an increased risk of cognitive impairment and Alzheimer’s into question disease. The findings of a March 2012 study on bexarotene have The analysis was led by Dr. David Smith, Professor of been partially called into doubt by a team of scientists Pharmacology at Oxford University and carried out by Dr. who were not involved in the original study. Gwenaëlle Douaud, researcher at the Functional Magnetic Resonance Imaging of the Brain Centre in Oxford. Her Amongst other conclusions, the original paper stated that team showed that the atrophy of the brain regions was the drug eliminated a substantial amount of amyloid linked to cognitive decline among the 156 participants in plaque in a very short time period. However, when the the study. In 77 participants with high homocysteine current team re-created the trial, there was no reduction levels, treatment with B vitamins lowered these levels. In in plaque burden in any of the three mouse models that turn, this slowed the shrinkage of the brain regions and were treated. thus resulted in less cognitive decline. The new study was a joint effort by researchers at the Professor Hugh Perry, chairman of the MRC’s University of Chicago, Northwestern University, Neurosciences and Mental Health Board, said: “We Massachusetts General Hospital, Washington University in already know that low levels of B vitamins are associated St. Louis and the University of Tübingen in Germany. They with cognitive impairment. This study adds to that were led by Dr. Sangram Sisodia, Professor of knowledge and shows that high doses of these vitamins - Neuroscience at the University of Chicago. particularly B12 - can lower homocysteine levels and The 2012 study was conducted by scientists at Case reduce the rate of atrophy of those specific parts of the Western Reserve University. They also reported that brain related to Alzheimer’s. The challenge now is to bexarotene reduced the level of soluble amyloid beta in identify the mechanisms by which lower homocysteine the mice and this conclusion was not disputed. influences brain atrophy and to study larger cohorts of patients in trials to confirm that progression to dementia Bexarotene is currently in use as a cancer drug, marketed really can be slowed down.” by Eisai as Targretin. The MRC, or Medical Research Council, funded the www.sciencemag.org/content/340/6135/924.6.abstract?sid=1b30fd89-98ed- 4c05-975c-64d403c4100a original study. www.sciencemag.org/content/335/6075/1503.abstract?sid=8d617a2b-c531- 427f-8b35-fc0c459f130a www.pnas.org/content/early/2013/05/16/1301816110.abstract?sid=4704b5 bd-eb7d-42ff-96f7-49265a9bc4e9 http://users.fmrib.ox.ac.uk/~douaud/VB_vbm.pdf Dementia in Society

17 May: MHE criticises American DSM-5 manual Mental Health Europe (MHE) has issued a press release that criticises various elements of the new edition of the www.alzheimer-europe.org/Donation “Diagnostic and Statistical Manual of Mental Disorders (DSM-5)” published by the American Psychiatric Association (APA). DSM-5 was officially presented released on 18 May and is the fifth edition of this manual. 22 May: TauRx begins recruitment for Phase 3 trial MHE contends that DSM-5 is excessively biased toward a TauRx Therapeutics has begun enrolment of participants biological approach to mental health for its Phase 3 trial of the drug LMTX for mild to moderate issues. Conversely, psychological and Alzheimer's disease. The first enrolments were in the UK, social interventions are relatively with a goal of more than 100 participants at 16 trial downgraded - despite the fact that such centres. Globally, TauRx is recruiting more than 1,500 therapies are in common use to support patients in some 20 countries in trials for both Alzheimer's personal and social recovery. disease and fronto-temporal dementia (FTD). Another concern is the inclusion of diagnostic categories According to the company, LMTX targets a process in the with questionable reliability: the manual continues to brain whereby a normal form of tau protein begins to self- medicalise normal reactions such as grief or shyness. This aggregate due to binding neuronal waste-products. Once increases the risk of diagnosing psychiatric illness on the process has started, the aggregates are able to

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people who would fare much better without one - and the Dr. Irwin claims to have helped at least 25 people to die at subsequent prescription of unneeded psychotropic drugs. the clinic. Assisted suicide is a criminal offence in the UK but is legal in Switzerland. According to Karina Huberman, MHE Acting Director, "mental health problems are not black and white. They In previous cases, critics to assisted suicide have claimed can be fleeting or permanent, stem from a multitude of that it carries the implication that those with dementia causes, and, depending on the individual person, respond should consider killing themselves. They point out that to different interventions. The biomedical approach in the dementia sufferers can live for many years with the DSM 5 is thus restrictive and harmful, and should condition. This man's death is one more element in the definitely be rethought.” debate over the circumstances in which assisted suicide should be permitted. www.mhe-sme.org www.dsm5.org New Publications & Resources 22 May: EPF holds General Assembly On 22 May, the European Patients' Forum (EPF) held a 1 May: EU publishes brochure on Joint Actions General Assembly meeting in Dublin. The European Commission has published a new brochure The presentation of the 2012 Annual entitled “Joint Actions: EU support for key public health Report showed that EPF has been initiatives 2008-2011”. The brochure explains how the active in various EU legislative Joint Actions (JAs) work, how they are funded and how proposals or consultations. These they are monitored to ensure that they contribute include Clinical Trials, Transparency, European added value. There is a detailed overview of all Data Protection, Medical Devices, Rights and Needs of 20 JAs funded between 2008-11, with particular attention Older Patients, Professional Qualifications, Health for to their results, outputs and impact on national health Growth and Horizon 2020. EPF is also involved in 12 EU policies within the EU. projects. JAs are one of four types of actions funded by the EU In 2013, EPF continues to implement the elements of its Health Programme. They are designed to stimulate 2007-2013 Strategic Plan, with particular emphasis on the governments, academic and other non-profit following: organisations to join forces at the EU level in order to tackle problems shared by many EU Member States. JAs • reinforcing EPF capacity through its capacity building involve partner organisations from many different programme, regional advocacy seminar, youth Member State and aim to jointly develop solutions that involvement, reinforced membership and the Policy can be put into practice directly at national level. Further Advisory Group. JAs are continuing up to 2015 and beyond.

• strengthening the influence and impact of the http://ec.europa.eu/health/programme/docs/joint_actions_2008_2011_en.p patients' perspective in the field of chronic diseases, df e-health, access to healthcare, health literacy, 15 May: UK reports on progress of Challenge on structural funds, cross border healthcare, pharmacovigilance and falsified medicines. Dementia • feeding project and patient evidence into policy and The UK Department of Health has released an annual consolidating the EPF communication strategy. progress report on the first year of the Prime Minister's Challenge on Dementia. The Challenge aims to deliver Delegates also adopted the new Strategic Plan (2014- major improvements in dementia care and research by 2020) during the meeting. The new plan is likely to 2015. The report gives an overview of the plan and introduce discrimination as a key priority for the EPF, highlights various activities that have launched in the last especially working with other groups that are already 12 months. active in this field.

www.eu-patient.eu/Events/EPF-10th-anniversary-celebration-and-Annual- Health & care General-Meeting/Presentations-agm/ • A new service that rewards GPs for having a pro- 28 May: Dementia sufferer ends life at the Swiss active approach to the assessment of patients who Dignitas clinic may be showing early signs of dementia. • A "Dementia Care and Support Compact" with major An unnamed 83-year-old man with dementia chose to die care providers to improve care and support for at the Dignitas "suicide clinic" in Switzerland rather than people with dementia living at home and in care become an eventual burden to his family. He was homes. apparently the first British citizen to use Dignitas' services • solely because of dementia. A commitment by some 140 NHS trusts to become "dementia friendly", working in partnership with their Dr. Michael Irwin, retired GP and campaigner for assisted local Dementia Action Alliance. suicide, arranged beforehand for the man to see a • The appointment of senior clinical leads to ensure psychiatrist to produce a report saying he was mentally that staff is trained in dementia care. competent. He said: “His wife said he was grateful. His family was 100 per cent behind him. I have spoken to his Support for carers widow since and she felt that it was handled in a very Some EUR 950,000 has been allocated to develop dignified and proper manner." initiatives to increase awareness of carers’ needs among

Page 10 of 13 Newsletter: May 2013

healthcare professionals and to improve outcomes for education we expect all staff to have before joining the carers including those caring for people with dementia. NHS." Creating dementia-friendly communities The HEE is leading a government-mandated programme to improve the care for those with dementia. The three • The “Dementia Friends” programme was launched to introductory sessions of the course are available free of increase awareness and understanding of dementia charge on the project website. by educating one million people to become Dementia Friends by 2015. More than 2,200 have already www.e-lfh.org.uk/projects/dementia signed up and about 500 have been trained. 27 May: EBC publishes first newsletter • More than 50 cities, towns and villages are already taking local action to become dementia friendly. The European Brain Council (EBC) has published the first Fifteen of these communities are part of a pilot phase issue of its quarterly newsletter “EBC News”. for the recognition process for dementia friendly The EBC coordinates the interests of European communities. organisations in neurology, neurosurgery, psychiatry, • Over 20 Local Dementia Action Alliances have been neuroscience, as well as patient organisations and established. These bring together organisations to industry. The newsletter aims to communicate all the take responsibility for improving the lives of people different elements of brain diseases, including the science with dementia and carers in their area. and challenges that European societies will face in the • A dementia education pioneer programme in 21 future. schools across the country that are testing different EBC News can be downloaded from the Council’s website. approaches to educating children and young people about dementia. www.europeanbraincouncil.org/pdfs/Newsletters_/Spring%202013.pdf • A nationwide campaign to raise awareness of 28 May: Alzheimer's Society launches new dementia and to encourage people to visit their activities book doctor if they are worried about dementia. The UK Alzheimer's Society has Research launched a newly revised version of • Some EUR 25 million of new approved funding for its popular activities book named scientific research. "Taking part: activities for people • A call for up to EUR 15 million in funding for social with dementia". The book is aimed at science research proposals in preventing dementia. health and social care professionals and includes detailed breakdowns of The report is available on the Department of Health more than 80 activity ideas that detail website. precisely "What you need" and "How it's done". www.gov.uk/government/publications/the-prime-ministers-challenge-on- Each chapter is dedicated to a theme e.g. life history dementia-annual-report-of-progress work, gardening, and computers and the internet. 15 May: NHS launches new dementia e-learning Chapters also include an overview of recent research project findings in that area, practical tips and case studies of innovative and successful activity programmes from a The NHS has released an online training course with range of different care settings that bring the ideas to life. lessons on handling the day to day aspects of dealing with people with dementia and their families. The book is available from Alzheimer's Society online shop. The introductory part of the course begins by exploring http://shop.alzheimers.org.uk/product/taking-part-activities-for-people-with- the nature and types of dementia and some of the dementia/ associated common myths and negative attitudes. It addresses the importance of early diagnosis and goes on Job opportunities to identify ways of communicating effectively with someone living with dementia. The course also describes 27 May: DZNE is looking for a Research Group the importance of "living well" with the condition and Leader explores sources of support for those affected by dementia. DZNE - the German Centre for Neurodegenerative Diseases - has a vacancy for a Research Group Leader to An additional ten 30-minute sessions provide support for provide leadership to a research group that focuses on assessing and managing dementia, whilst equipping staff the provision, consultation, adaption, and development of with the skills to provide high quality dementia care. analyses and research methods in the field of dementia- Professor Chris Welsh, Director of Education and Quality specific health services research. Scientific requirements at Health Education England (HEE), said: “Over the coming are as follows: months, we will be working with providers of education to • Excellent scientific expertise, preferably with a PhD ensure that dementia and other long term conditions play preferably in an interdisciplinary context, e.g. social a far greater role in the knowledge and the skills we sciences, psychology, nursing science, medicine. expect of those who graduate to become professionals in the NHS. This will become a mandatory part of the

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• Outstanding knowledge of statistics, including www.alz.co.uk/jobs

multilevel analyses, data mining, psychometric analyses and test theory.

• Proven methodological expertise in empirical social science, including a critical appraisal of the Contact Alzheimer Europe: Alzheimer Europe, 145 route de Thionville, L-2611, Luxembourg application of methods. [email protected], www.alzheimer-europe.org • Experience in conducting and managing scientific Alzheimer Europe Board projects in health services or in social science. Chairperson: Heike von Lützau-Hohlbein (Germany); Vice-Chairperson: Iva • Holmerová (Czech Republic); Honorary Secretary: Charles Scerri (Malta); Excellent English writing and speaking skills. Honorary Treasurer: Maria do Rósario Zincke dos Reis (Portugal); Members: Patrick Maugard (France), Maurice O’Connell (Ireland), Sirpa Pietikäinen Applicants are invited to contact Prof Dr. Martina Roes (Finland), Helga Rohra (Germany), Alicja Sadowska (Poland), Henry Simmons until 30 June 2013 at [email protected] (UK - Scotland). Alzheimer Europe Staff www.dzne.de/en/job-vacancies/job/research-group-leader-fm-code- Executive Director: Jean Georges; EU Public Affairs Officer: Annette Dumas; 700320135.html Administrative Assistant: Kate Ellis; Editor – Dementia in Europe Magazine: Julie Fraser; Information Officer: Dianne Gove; Conference and Event 31 May: ADI is recruiting an Administrator Coordinator: Gwladys Guillory; Communications Officer: Alex Teligadas; Administrative Assistant: Grazia Tomasini. Alzheimer’s Disease International (ADI) has an immediate vacancy for an Administrator at its London office. Further details are available on the association’s website.

AE Calendar 2013

Date Meeting AE Representative 3 June Alzheimer Scotland conference (Glasgow, UK) Jean 4 June EMA Scientific advice meeting Jean 3-4 June 2nd PharmaCog general assembly (Lille, France) Alex 10-11 June EMIF project meeting (Sitges, Spain) Alex First meeting of the ethics working group on perceptions and the portrayal of dementia (Brussels, 12 June Dianne Belgium) Regional Symposium on Preventing Abuse and Neglect of Older Persons in Europe, organised by the 17-18 June Dianne Office of the United Nations High Commissioner for Human Rights (Brussels, Belgium) 17-19 June AE Board, EP lunch debate, dementia monitor meeting and public affairs meeting (Brussels, Belgium) AE staff and Board 19 June EFPIA Think Tank (Brussels, Belgium) Annette Future Conferences

Date Meeting Place 8-11 June 2013 23rd ENS 2013 meeting, www.congrex.com Barcelona, Spain 13-14 June 2013 EU Summit on active and healthy ageing: An action agenda for European cities and Communities, Dublin, Ireland www.ahaconference2013.ie 23-27 June 2013 The 20th IAGG Congress of gerontology and geriatrics, www.iagg2013.org Seoul, Korea 1-2 July 2013 NeuroConnection, www.neuroconnection.eu Marseille, France 4-5 July 2013 2e symposium franco roumain: l'Alzheimer, une approche interdisciplinaire, www.epsm-lille- Lille, France metropole.fr 7-10 July 2013 5th International conference on ageing end spirituality, https://events-made- Edinburgh, UK easy.com/Client_Event_Sites/test8008/2011-10-105/cgi-bin/php/home.php 21-26 September 2013 XXI World Congress of Neurology, www.oegnt.at Vienna, Austria 30 September- 1 October International Conference on Psychology, Autism and Alzheimer’s disease, San Antonio, Texas, USA www.omicsgroup.com/conferences/psychology-autism-alzheimers-2013/index.php 5-9 October 2013 26th ECNP (European College of Neuropsychopharmacology), www.ecnp-congress.eu Barcelona, Spain 10-12 October 2013 23rd Alzheimer Europe Conference: “Living well in a dementia-friendly society”, www.alzheimer- St. Julian’s, Malta europe.org/EN/Conferences 17-20 October 2013 8th International Congress on Vascular Dementia – ICVD 2013, www.kenes.com/icvd Athens, Greece 11-14 December 2013 The 16th Asia Pacific regional Conference of Alzheimer’s disease international, www.aprc2013- Hong Kong & Macau hongkong-macau.com th 20-22 March 2014 58 Annual meeting of the German society for clinical neurophysiology and functional imaging Berlin, Germany (DGKN), www.dgkn-kongress.de 20-23 March 2014 30th International Congress of Clinical Neurophysiology of the IFCN (ICCN), www.iccn2014.de Berlin, Germany 26-29 March 2014 13th Int. Geneva/Springfield Symposium on Advances in Alzheimer Therapy, www.ad-springfield.com Geneva, Switzerland 5-9 July 2014 9th FENS Forum of Neuroscience, http://forum.fens.org/2014 Milan, Italy

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The Alzheimer Europe newsletter arises from the 2013 Work Plan of Alzheimer Europe, which has received funding from the European Union in the framework of the Health Programme.

Page 13 of 13

NEWSLETTER June 2013

important of all, the 2014 EU Highlights in this issue Editorial budget has been approved, with nd June was another an emphasis to boost growth and 3 June: Scotland launches 2 6 create jobs in all EU member dementia strategy busy but productive states. 18 June: AE holds lunch 2 month, as we debate on ALCOVE In our member countries, Scotland tended existing saw the launch of its second 21 June: AE steps up social 2 projects and media presence national dementia strategy and launched a foray France a successful review of its 21 June: EPSCO approves MRI 5 into social media: own plan. The Nordic associations directive you may have noticed a recent organised a conference in Sweden 26 June: Review of French 7 flurry of new AE tweets and and Finland also updated its Alzheimer Plan is complete Facebook wall posts. Preparations advance directive publications. The 28 June: EMA issues warning 11 for Malta are also proceeding and German association issued on drugs with ergot we already have more than 300 recommendations for long-term confirmed registrations. This is care to the government and the more than we anticipated and a Dutch government is reviewing its good indicator that we'll reach or own advance directive laws.

exceed our goal of 400 delegates. Finally, we congratulate the We were pleased to host some 40 Bulgarian and Maltese associations for the recent launch of their people at our latest lunch debate in Brussels, including four MEPs respective newsletters. and members of the European In scientific news, the EMA issued Alzheimer's Alliance. The audience a warning about drugs containing heard Dr. Armelle Leperre- ergot derivatives. June saw the Desplanques presenting the results presentation of "Big Brain", a 3D and future activities of the ALCOVE high-resolution brain model that project. will apparently show details at the

This was followed by a round table level where brain computations meeting with representatives of take place. pharmaceutical companies and AE We also report on other new member associations. We are very resources, including a re-edition of happy with their agreement to the French-language version of the jointly contribute to AE's Dementia Care Manual and a very

Monitor - the first cooperation of comprehensive OECD report on this kind. With their combined Table of contents long-term care. Stirling University input, we expect the Dementia has published a new issue in its Editorial ...... 1 Monitor to become the standard series of books about housing and reference for comparing European the University of Tasmania will Alzheimer Europe ...... 2 dementia policies. We also held a offer a free online course about AE Projects ...... 3 meeting with our members, to dementia. There are open discuss our involvement in future competitions for "healthy" phone Alzheimer Europe Networking 2013 ... 4 European projects and also ways apps and social innovation EU Developments ...... 5 to make dementia a prominent projects, as well as a grant award topic during the upcoming G8 for Alzheimer's researchers. Policy Watch...... 6 conference and the 2014 EU Members’ News ...... 7 election campaigns. This is the last newsletter before we break for the summer. Our Science Watch ...... 8 The elections will take place during next issue will appear in early 22-25 May 2014, according to a Dementia in Society ...... 12 September. Until then, we wish all recent decision of the EU Council. our readers a warm and pleasant New Publications & Resources...... 12 Meanwhile, the EPSCO council summer! adopted the much-awaited MRI AE Calendar 2013 ...... 14 directive and five EP parties agreed Jean Georges Future Conferences ...... 14 on a joint initiative to support Executive Director people with disabilities. Most

Page 1 of 15 Newsletter: June 2013

Alzheimer Europe expects that the Dementia Monitor will Alzheimer Europe be useful for presenting comparative data to the European Parliament and European Commission. In 17 June: AE Board meets in Brussels addition, national organisations can use it to compare their situation to that of other European countries. The Alzheimer Europe Board held a meeting on 17-18 June with nine of ten Board members in attendance. During the meeting, participants discussed the topics that would be included in the monitor and the methodology The members heard about AE's recent meetings and needed to analyse and interpret the data. They also activities, including European initiatives, research projects identified several sources of data and agreed on a and the European Working Group of People with timeline for delivery. The meeting was attended by Dementia (EWGPWD). They also gave positive evaluations representatives from 12 national Alzheimer's associations to applications for full membership from Iceland and and healthcare companies GE Healthcare, Eli Lilly, Monaco. In addition, they reviewed financial accounts Lundbeck, Nutricia and Piramal. from 2013 and the 2014 Work Plan and heard updates on the preparation of Alzheimer Europe's 23rd Annual Alzheimer Europe will compile and develop the final Conference. report, which will be presented at a lunch debate in the European Parliament on 3 December 2013. The next Board meeting will take place on 10 October at the Conference site in St. Julian's, Malta. 19 June: AE holds a Public Affairs meeting 18 June: AE holds a lunch debate near the On 19 June, Alzheimer Europe held a Public Affairs European Parliament meeting that covered the progress of AE's Dementia in Europe Yearbook project and an update of AE’s Marisa Matias, MEP (Portugal) hosted Alzheimer Europe's involvement in EU and WHO initiatives on active and latest lunch debate in Brussels. The debate attracted health ageing and age friendly communities. The meeting more than 40 participants and focused on the results of also included discussion on the impact of social media in ALCOVE, the European Joint Action on Alzheimer's dementia campaigns and the 2014 European elections, as disease. The main presentation was made by Dr. Armelle well as a presentation on the UK's intention to make Leperre-Desplanques, project leader and Manager of the dementia a G8 priority. The Public Affairs meeting was Department of Pilot Programmes at the French Ministry attended by 17 people, including representatives from 11 of Health. She was followed by Bénédicte Gombault from member associations: the King Baudouin Foundation, who presented the project's recommendations for advance care planning. • Alzheimer Bulgaria: Irina Ilieva • ALCOVE, the two-year Joint Action on Alzheimer Alzheimer's Disease Societies (Croatia): Nino Mimica Cooperative Valuation in Europe, involved 30 partners • Ceská alzheimerovská spolecnost (Czech Rep.): Iva from the health and scientific authorities of 19 countries. Holmerová Their aim was to improve knowledge on dementia and its • Muistiliitto ( Finland): Markus Löfström consequences, as well as promote the exchange of • Deutsche Alzheimer Gesellschaft (Germany): Heike information to preserve health, quality of life, autonomy von Lützau-Hohlbein and dignity of people living with dementia and their carers • in Europe. They also explored ways to prevent excessive Greek Association of Alzheimer's Disease and Related prescription of psychotropic drugs to people with Disorders: Ersi Grammatikou dementia. • Malta Dementia Society: Charles Scerri • Alzheimer Portugal: Maria Do Rosário Zincke dos Reis MEPs Martina Anderson, Sirpa Pietikäinen (Finland) and Angelika Werthmann (Austria) all attended the debate • Societatea Alzheimer (Romania): Maria Moglan and Marina Yannakoudakis (UK) was represented by her • Spominčica (Slovenia): Štefanija Lukič-Zlobec assistant. These MEPS are all members of EAA, the • Alzheimer's Society (UK): Nicola O'Brien. European Alzheimer's Alliance. There were also representatives from the European Commission, the 21 June: Alzheimer Europe steps up social media pharmaceutical industry and 12 member associations of presence Alzheimer Europe. On 21 June, Alzheimer Europe joined The next lunch debate will take place on 3 December Twitter and decided to increase its 2013. Additional information about ALCOVE is available Facebook presence. Alzheimer Europe will on the project website. use both social media to inform its followers www.alcove-project.eu and interested individuals about the organisation’s latest activities and campaign priorities. 18 June: AE holds a Dementia Monitor meeting The organisation can already count on 150 Following the lunch debate, Jean Georges, Executive Twitter followers and close to 3,000 Facebook Director of Alzheimer Europe, presented an update of friends. You can join the European dementia AE's Dementia Monitor project. The Dementia Monitor community and follow Alzheimer Europe at aims to be a European benchmark of national dementia https://twitter.com/AlzheimerEurope or befriend the policies. It will be based on data provided by AE's member organisation on www.facebook.com/alzheimer.europe associations and pharmaceutical partners - and will be the first time these two groups work together on such a project.

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Impressions from the Lunch Debate and Dementia Monitor meeting

MEPs Martina Anderson and Marisa Matias, Annette Armelle Leperre-Desplanques (ALCOVE, French The Finns: Markus Löfström, Aino Valtanen, MEP Dumas (Alzheimer Europe), Maria Do Rosário Zincke Ministry of Health) and MEP Angelika Werthmann Sirpa Pietikäinen dos Reis (Portugal)

Irina Ilieva (Bulgaria) and Štefanija Lukič-Zlobec Maria Moglan (Romania), Gökçe Elkap (Lundbeck), 40+ delegates attended the debate (Slovenia) Ersi Grammatikou (Greece)

Helga Rohra (EWGPWD), Maria Moglan (Romania), Charles Scerri (Malta) and Iva Holmerová (Czech Carolyn Bodnar (GE Healthcare) and Steve Graves Nicola O'Brien (UK) Rep.) (Nutricia) project, including assigning priorities to the six AE Projects operational work packages. 31 May: NILVAD project is featured on EU research At the General Assembly, delegates heard updates from website all the Work Packages, including a poster session, as well as a report from the Ethics Advisory Board. They also On 31 May, the NILVAD project was attended a series of four workshops that discussed how featured on the European PharmaCog's work might continue after the end of the Commission's Research & Innovation project in 2014. website. An article entitled "Major human drug trial underway for Alzheimer's" covered all the aspects of the More information about PharmaCog can be found on the project, including a quote from Dr. Brian Lawlor, project project website. coordinator: "We are trying to see if it alters the rate of www.alzheimer-europe.org/index.php/Research/PharmaCog progression of the disease. Animal trials gave promising results and the earlier pilot trial did give an efficacy signal 10 June: EMIF project teams hold progress as well." meeting and workshops The full text of the article is available on the project On 10-11 June, the EMIF project team website. held a progress meeting in Sitges, Spain. www.nilvad.eu/fileadmin/websites/nilvad/media/News/Publications/Europa- The meeting focused on the “Platform” Research_Innovation_31st_May_2013.pdf side of the project and also featured workshops for WP11, WP15 and WP16. 3 June: PharmaCog holds General Assembly The EMIF Platform will provide different degrees of access On 3-4 June, the PharmaCog project to multiple datasets within an integrated environment. partners held a Steering Committee During this meeting, delegates from Work Packages (WP) meeting and a General Assembly in 9-16 heard an overall project update, discussed user Lille, France. requirements and saw a demonstration of the first During the Steering Committee meeting, participants tranSMART and EMIF Catalogue prototypes. There were finalised the progress report for year three of the five- also presentations on the three current Use Cases and the year project, including Key Performance Indicators and two in development. Each Use Case is a model of a milestones achieved. A key achievement is that the specific function of the Platform, such as cohort dataset clinical trial of Work Package 5 has recruited enough integration, data source characteristics feeding and participants to produce significant results. The delegates browsing. also reviewed the remaining tasks and objectives of the

Page 3 of 15 Newsletter: June 2013

In addition, there were meetings of the WP11 (Harmonisation and semantics), WP15 (Sustainability and outreach) and WP16 (Programme management and dissemination) project teams. The WP11 colleagues briefly discussed the immediate actions to take to study the degree of semantics harmonisation required in EMIF. The WP15 colleagues met to discuss the organisation of a workshop to initiate the development of an EMIF- Platform business plan. This aims at ensuring the sustainability of the venture beyond the project timeline. The WP16 team continued to work on the external communications plan, including identification of target audiences and elaboration of key messages. The communications workshop continued on 14 June in Luxembourg.

This work has received support from the EU/EFPIA www.alzheimer-europe.org/Donation Innovative Medicines Initiative Joint Undertaking (EMIF grant n° 115372). Alzheimer Europe Networking On 3 June (Glasgow, UK), Helga and Jean participated in the Alzheimer Scotland conference to mark the launch of Dementia Awareness Week and met Agnes Houston to discuss working methods of European Working Group of People with Dementia. On 3 June 2013 (Brussels, Belgium) Annette participated in the Age-Friendly Environments for Europe (AFEE) meeting organised by WHO Europe and DG Employment and Social Affairs. On 4 June (London, United Kingdom), Jean participated in a discussion meeting at the European Medicines Agency on an Alzheimer’s disease progression model. On 3-4 June (Lille, France), Alex attended the PharmaCog Steering Committee meeting and General Assembly. On 10-11 June (Sitges, Spain), Alex attended the EMIF Platform progress meeting and workshops for WP15/WP16. On 12 June (Brussels, Belgium), Dianne attended the first meeting of the ethics working group on perceptions and portrayal of dementia. On 14 June (Luxembourg, Luxembourg), AE hosted an EMIF WP16 communications workshop. On 17-18 June (Brussels, Belgium), Dianne attended the regional symposium on “Preventing abuse and neglect of older persons in Europe” organised by the United Nations Human Rights Office of the High Commissioner. On 17-19 June (Brussels, Belgium), AE Board and staff members attended the lunch debate and meetings of the Board, Dementia Monitor & Companies and Public Affairs.

Members of the European Alzheimer’s Alliance

Austria: Becker K. Heinz (EPP), Werthmann Angelika (NI). Belgium: Demesmaeker Mark (Greens/EFA), Ries Frédérique (ALDE), Staes Bart (Greens/EFA), Tarabella Marc (S&D). Bulgaria: Parvanova Antonyia (ALDE). Cyprus: Triantaphyllides Kyriacos (GUE-NGL). Czech Republic: Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP). Denmark: Christensen Ole (S&D), Rohde Jens (ALDE), Schaldemose Christel (S&D). Finland: Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli (ALDE), Pietikäinen Sirpa (EPP). France: Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise (EPP), Juvin Philippe (EPP), Morin-Chartier Elisabeth (EPP), Pargneaux Gilles (S&D). Germany: Niebler Angelika (EPP), Roth-Behrendt Dagmar (S&D), Ulmer Thomas (EPP), Weisgerber Anja (EPP). Greece: Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni (S&D), Kratsa-Tsagaropoulou Rodi (EPP). Ireland: Aylward Liam (ALDE), Childers Nessa (S&D), Crowley Brian (ALDE), McGuiness Mairead (EPP), Mitchell Gay (EPP). Italy: Panzeri Pier Antonio (S&D), Toia Patrizia (S&D). Lithuania: Vilija Blinkeviciute (S&D). Luxembourg: Engel Frank (EPP), Lulling Astrid (EPP). Malta: Simon Busuttil (EPP), Joseph Cuschieri (S&D). Netherlands: De Lange Esther (EPP), van Nistelrooij Lambert (EPP), Wortmann-Kool Corien (EPP). Poland: Łukacijewska Elżbieta (EPP). Portugal: Carvalho Maria da Graça (EPP), Coelho Carlos (EPP), Matias Marisa (GUE/NGL). Romania: Antonescu Elena Oana (EPP), Busoi Cristian (ALDE), Sârbu Daciana Octavia (S&D), Tanasescu Claudiu Ciprian (S&D). Slovakia: Mikolasik Miroslav (EPP), Zaborska Anna (EPP). Slovenia: Peterle Alozj (EPP). Spain: Badia i Cutchet Maria (S&D), Estaràs Ferragut Rosa (EPP). United Kingdom: Anderson Martina (GUE-NGL), Ashworth Richard (ECR), Hall Fiona (ALDE), McAvan Linda (S&D), McCarthy Arlene (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Taylor Keith (Greens/EFA), Vaughan Derek (S&D), Watson Graham (ALDE), Willmott Glenis (S&D), Yannakoudakis Marina (ECR).

Page 4 of 15 Newsletter: June 2013

EU Developments 21 June: Employment, Social Policy, Health and Consumer Affairs Council adopts "MRI directive" 6 June: EP political groups join forces to support On 21 June, the main results of the Employment, Social persons with disabilities Policy, Health and Consumer Affairs Council of 20/21 June On 6 June, the leaders of the main political Groups in the were presented. European Parliament announced strong action to support Among the topics adopted without discussion was the the rights of persons with disabilities in Europe. directive on the minimum health and safety requirements This followed a high level meeting between Joseph Daul, regarding the exposure of workers to the risks arising Chairman of the EPP Group, Hannes Swoboda, President from electromagnetic fields. Alzheimer Europe previously of the S&D Group, Anneli Jaatteenmaki, Vice-President of reported on the negotiations and actively campaigned to the ALDE Group, Rebecca Harms, co-President of the ensure the use of MRI would not be restricted through Greens/EFA Group, Gabriele Zimmer, President of the this directive. The new directive takes into account the GUE/NGL Group, and EDF President Ioannis concerns of Alzheimer Europe and the organisations Vardakastanis. which campaigned in the “Alliance for MRI”. The thinking behind this initiative is that it is time to stop On health and consumer affairs, the Council agreed a thinking only about the financial crisis: we also have to general approach on a revised draft EU tobacco directive, think about the social and human rights crisis. The most took note of presidency progress reports on a draft vulnerable and disadvantaged social groups - including regulation concerning clinical trials of medicines and on people with disabilities - are taking the hardest hits. two draft regulations concerning medical devices. The six MEPs all signed a declaration to take up a series of Other topics on the Council’s agenda were the European important initiatives aiming to ensure the full inclusion of Semester in the field of employment and social policy persons with disabilities as well as the enforcement of with a particular focus on youth employment. their rights: www.consilium.europa.eu/uedocs/cms_Data/docs/pressdata/en/lsa/137549. pdf 1. The European Parliament will implement and mainstream the UN Convention on the Rights 27 June: Commission responds to MEP of Persons with Disabilities through the setting Werthmann's question on the cost of brain up of a cross-Committee; diseases 2. The European Parliament will put forward On 27 June, Angelika Werthmann, MEP (Austria) received concrete proposals aiming to protect persons an answer from the European Commission to her with disabilities from the crisis; question about the cost of brain disorders in Europe. 3. In view of the 2014 European elections, the She reminded the Commission that EUR 800 billion is paid political groups will ensure the accessibility of every year in Europe to treat brain disorders and that the their websites, documents and information to ageing of the population will exacerbate the number of persons with disabilities; European citizens affected by brain disorders. 4. The political groups will push for a strong and She asked the Commission what strategies it had to advise ambitious EU legislation on accessibility of the Member States on reducing such costs, what goods and services such as a legally binding programmes focus on preventive medicine and what is European Accessibility Act, with strong the EU contribution to covering these costs. measures at EU level to improve the accessibility of goods and services of high In the reply Health Commissioner Tonio Borg mentioned a quality for persons with disabilities. 2011 study by A. Gustavsson et al. that was published in European Neuropsychopharmacology: "Cost of disorders www.alde.eu/press/press-and-release-news/press-release/article/ep- of the brain in Europe 2010" estimated that the total costs supports-persons-with-disabilities-41592/ of brain disorders, including mental, neurological and 14 June: Council announces dates of 2014 EU neurodegenerative disorders, accounted to EUR 798 elections billion in 2010. On 14 June, the Foreign Affairs Council decided to bring He then mentioned the Commission’s European Month of forward the period of the next European Parliament's the Brain that provided a framework to address brain elections from 5-8 June to 22-25 May 2014. research and healthcare issues. This follows the positive opinion of the European As far as EU health policy is concerned, the Commissioner Parliament given on 21 May. The main objective of explained that the Commission is working with Member advancing the electoral period is to ensure optimal States to implement the European initiative on conditions for the elections and thereby strengthen the Alzheimer’s disease and other dementias (2009) and the European Parliament's legitimacy. European Pact for Mental Health and Well-being (2008). In 2013, a Joint Action on Mental Health and Well-being www.consilium.europa.eu/uedocs/cms_Data/docs/pressdata/EN/genaff/137 was launched. 466.pdf Commissioner Borg added that between 2008 and 2013, some EUR 17.5 million had been invested from the EU- Health Programme 2008-2013 into projects, studies,

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conferences and Joint Actions on mental health and For more information, please contact Areti Efthymiou at dementia. He also added that the Seventh Framework [email protected] or Frank Goodwin at Programme for Research (FP7, 2007-2013) provided [email protected] significant support for brain research. www.innovage.eu www.europarl.europa.eu/sides/getDoc.do?pubRef=-//EP//TEXT+WQ+E- 2013-004864+0+DOC+XML+V0//EN Policy Watch 28 June: Council approves MFF agreement 30 May: Dutch advance directive laws to be re- On 28 June, the Council officially approved the agreement evaluated reached with the European Parliament on the draft regulation laying down the EU's multiannual financial A joint working group of Dutch medical framework (MFF) for 2014-2020 and the inter- and government experts has been formed institutional agreement (IIA) on budgetary discipline and to evaluate and clarify the validity of sound financial management. advance directive laws for people with dementia. The agreement was reached between the Irish presidency Doctors in the Netherlands have expressed difficulties and representatives of the European Parliament and the with advance directives - particularly those for euthanasia Commission on 27 June. It confirmed the expenditure - for several years. They maintain that some ceilings agreed by the European Council as EUR 959.99 communication is essential if they are to properly billion in commitments and EUR 908.40 billion in understand their patients’ suffering and wishes. payments. Meanwhile, medical ethicists argue that doctors are A particular effort has been made to boost growth and placing themselves above the 2002 euthanasia law. This create jobs. states that doctors can act on an advance directive once a patient becomes incompetent. A review of the MFF will take place in 2016 at the latest, allowing the newly elected European Parliament, the The debate began when the Dutch Medical Association Council and the Commission to reassess the priorities for proposed to adapt the law. The association suggested that the remaining years of the financial framework. the legally required second medical opinion must not only see but also communicate with the patient. www.consilium.europa.eu/uedocs/cms_Data/docs/pressdata/EN/genaff/137 642.pdf Before accepting a euthanasia request, doctors in the 28 June: INNOVAGE - a new web platform for Netherlands must be convinced that their patient is suffering hopelessly and unbearably. The acceptance of informal carers requests from patients in the early stages of dementia INNOVAGE is a three year FP7 increased from 25 requests in 2010 to 49 in 2011. project that began in December The working group is expected to report its findings in six 2012. The full project name, Social months. Innovations Promoting Active and Healthy Ageing, indicates its aim to develop social innovations that will www.bmj.com/content/346/bmj.f3545?tab=related have a solid impact on improving the quality of life and well-being of older people. In particular, the project intends to make a major contribution to the EU goal of extending healthy life years. One of the project objectives is to www.alzheimer-europe.org/Donation develop ICT-based services to support 3 June: Scotland launches new National Dementia informal carers. ICT interventions are Strategy increasingly popular among informal and professional carers alike: blogs, e- Mr Alex Neil, Cabinet Secretary for learning courses, telemedicine and smart homes are just a Health and Wellbeing, launched few of the web services offered to carers. INNOVAGE's Scotland’s new National Dementia Work Package 3 is working to combine web-based Strategy at Alzheimer Scotland’s Dementia Connections services in a multilingual web platform for informal carers Conference on 3 June. of dependent older people. A key aim of the new three-year strategy will be to This work package is led by Eurocarers - a improve standards of hospital care for people with non-profit organisation lobbying for dementia. It will see all general hospitals implement an informal carers in Europe - and INRCA, action plan to prevent people with dementia going into the Italian National Institute on Aging. hospital unnecessarily, ensure they get better care when When their work is complete, the in hospital and are helped to get home as quickly as multilingual web platform will host information such as possible once they are ready to leave. social inclusion, reconciliation of unpaid care and paid work and training on care provision. There will also be The strategy will also build upon the achievements of the specific sections for professional carers and their first strategy, including 300+ Dementia Champions, employers. Alzheimer Scotland Dementia Nurses in health boards across Scotland, the Promoting Excellence knowledge and

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skills framework for all health and social care staff and the which allows people to express their will regarding Standards of Care for Dementia in Scotland. personal treatment and care. Secretary Neil said: “I am delighted to launch our second Advance directives are written or spoken expressions of three year National Dementia Strategy, which will further will that specify a person's wishes for good care and improve diagnosis rates, transform the quality of post- rehabilitation. They are commonly used to express diagnostic support and take forward a national action plan preferences for end-of-life care: advance directives allow on improving care for people with dementia in hospitals. people to appoint someone to make certain decisions for them if they are no longer able to do so themselves. “We’ve already seen huge progress since we made dementia a national priority in 2007. Currently 64% of This has been an important part of the Society's advocacy Scots are getting a diagnosis, significantly better than work for years now, as it ensures the best possible quality other parts of the UK. Everyone diagnosed from 1 April of life for people with memory illnesses, based on their this year is entitled to a named support worker to help own wishes and needs. them and their families understand the illness, manage its www.muistiliitto.fi/eng/memory_illnesses/advance_directive/ symptoms and plan for future care, described as a 'world leading' commitment by Alzheimer Scotland." 1 June: Malta Dementia Society launches

www.scotland.gov.uk/Topics/Health/Services/Mental- newsletter Health/Dementia/DementiaStrategy1316 On 1 June, the Malta Dementia Society 26 June: Evaluation of the French Alzheimer Plan launched the first issue of its newsletter completed "Reachout". On 26 June, Marisol Touraine, Health and The newsletter will appear three times per Social Affairs Minister, Geneviève Fioraso, year, featuring local and international information about High Education and Research Minister, dementia. It will be a reference for dementia services in and Michèle Delaunay, Minister for Older Persons and Malta and also act as a forum for readers' questions and Autonomy, received the evaluation report of the third concerns. Finally, each issue will include an interview with French Alzheimer Plan. a local expert on dementia. The evaluation was made by Prof Joël Ankri and Prof Issue 1 of Reachout is available on the website below. Christine Van Broeckhoven. It highlights the major http://issuu.com/reachoutmds/docs/reachout_-_june_2013 achievements of the plan in research, diagnosis, support of people with dementia and support to their families. 1 June: Alzheimer Bulgaria launches dementia The report also lists 56 recommendations for future newsletter action. Alzheimer Bulgaria has launched the first The authors noted the significant progress in patient care issue of a quarterly newsletter called pathways. In addition, French research teams are now "Dementia". The newsletter is intended for better recognised at international level. This is due to families, caregivers and friends of people major achievements in understanding dementia, notably with dementia, but also for social workers in the field of genetics. Efforts to develop innovative and health professionals. Each issue will feature articles biomarkers must continue, to allow early diagnosis of on disease prevention, patient care, research health tips Alzheimer's disease. and the rights of people with dementia. The Dementia newsletter can be downloaded from the association's The report also recommends better national integration website. and collaboration between care structures and service providers, including entry points, adapted care and http://alzheimer-bg.org/ specialised Alzheimer teams in healthcare centres all over 5 June: Alzheimerforeningen hosts Nordic the country. Finally, the report calls for an extension of the Alzheimer Plan, including other neurodegenerative Alzheimer conference diseases that may involve common resources. The three Ministers stated their intention to continue supporting people with dementia and their carers. They This year's Nordic Alzheimer conference was hosted by will work to integrate the recommendations into a new Sweden's Alzheimerforeningen and took place in Lund plan, which will be presented on the occasion of World during 5-8 June. The conference was attended by Alzheimer Day on 21 September 2013. representatives from dementia associations from Aaland, www.plan-alzheimer.gouv.fr/remise-du-rapport-d-evaluation-du.html Denmark, the Faroe Islands, Finland, Iceland, Norway and www.sante.gouv.fr/IMG/pdf/Rapport-evaluation-plan-alzheimer-2012.pdf Sweden. This group has been meeting on a regular basis since 1993. Members’ News The conference agenda included reports from the 17 April: Finland's Muistiliitto publishes advance associations on their daily work, presentations on the directive forms latest knowledge in care practice and science and social outings in one of Sweden's oldest cities. This year, The Alzheimer Society of delegates saw presentations from Swedish experts on the Finland has published an latest developments in diagnosing Dementia with Lewy advance directive form

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Bodies, studying heritability, using PET scan and tests on spinal fluids and preventing dementia by vaccination. Science Watch There was also a field trip to Minneskliniken, a centre of 21 May: EMA approves a new memantine generic diagnosis and research into cognitive dementia symptoms. The clinic is developing a national register of assessing and treating challenging behaviour, as well as a web-based "migration school" in cooperation with a clinic in Copenhagen. This ensures that foreigners in Denmark On 21 May, the European Medicines Agency (EMA) and Sweden can find information on dementia and approved a generic memantine drug named Maruxa, support services in their own language. which is based on Ebixa. Maruxa will be marketed by Krka d.d. Novo mesto (Slovenia) and TAD Pharma GmbH (Germany).

www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicine s/002658/human_med_001631.jsp&mid=WC0b01ac058001d124 1 June: General anaesthesia may raise risk of dementia A French research team has determined that older people who undergo general anaesthesia during surgery are 35% more likely to develop dementia in later years.

The researchers were led by Dr. François Sztark, Professor 6 June: Ljubljana hosts dementia conference of Anaesthesiology at the University of Bordeaux. They examined data from a study called 3C that began On 6 June, the mayor of Ljubljana and the monitoring the health of 9,294 people aged 65 or over in city's Department for Health and Social the French cities of Bordeaux, Dijon and Montpellier in Affairs hosted a round table conference on 1999. dementia. The aim of the conference was to raise public awareness of dementia and to Participants were checked two, four, seven and ten years highlight the challenges faced by Slovenes with dementia. later. Each time, the 7,008 people with no dementia were asked if they had had either a general or local anaesthetic Mayor Zoran Jankovič opened the conference by greeting since the last check-up. After two years, 2,309 (33%) had the delegates and outlining the agenda for the day. The undergone one in that time, of which 1,333 were general keynote speaker was Dr. Aleš Kogoj, psychiatrist and and 948 were local. President of Spominčica, the Slovenian Alzheimer association. A total of 632 participants developed dementia over eight years. The researchers wished to establish whether a Spominčica is very grateful to the mayor and the city for condition known as POCD (postoperative cognitive their continued support. The association has many more dysfunction) was the cause. They found that 37% of activities planned for 2013, including the highly popular people with dementia had been exposed to anaesthesia Alzheimer Cafés and a Memory Walk to commemorate at the two-year follow-up, compared to 32% of people World Alzheimer's Day on 21 September. who did not have dementia. 22% of the people with 27 June: German associations urge government for dementia had undergone a general anaesthetic, term care reform compared to 19% of those who were free of dementia. On 27 June, German Health Minister Daniel Bahr officially They concluded that participants with at least one general received the "Report of the Expert Advisory Group on the anaesthesia event over the follow-up had a 35% increased details of long-term care". This report is the result of a risk of developing a dementia compared with participants joint effort between various organisations including the without anaesthesia. German Alzheimer Society. Dr. Sztark said that it is still uncertain whether POCD can Under current German law, "care" and "long-term care" be a precursor to dementia; there are still questions are defined as physical support needs, excluding those about why this is the case and whether other factors who need help for mental and psychological limitations. could be involved as well. The new report urges the addition of a new definition that This topic was covered at Euroanaesthesia 2013, the includes cognitive impairment. annual congress of the European Society of Bärbel Schönhof, Vice Chairperson of the German Anaesthesiology (ESA). Alzheimer Society, said: "The report calls for the inclusion http://journals.lww.com/ejanaesthesiology/Fulltext/2013/06001/Exposure_t of people with dementia in the future. It also provides a o_general_anaesthesia_could_increase_the.768.aspx new evaluation process and gives concrete 1 June: Metabolomics may speed development of recommendations for implementation. These should provide the government with all the necessary blood biomarkers background to begin a comprehensive reform of nursing Researchers at the Mayo Clinic in Minnesota have care very quickly." developed a blood test that may lead to detection of Alzheimer's disease at its earliest onset.

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The team used a relatively new technique called 6 June: Atrial fibrillation presages cognitive metabolomics, which monitors the activity of metabolics decline (e.g. sugars, lipids, amino acids) inside cells. This technique provides a profile of what is happening in the A new longitudinal study shows that people with atrial body at a given time, providing insight into the cellular fibrillation (a rapid and irregular heartbeat) experience processes that underlie a disease. faster cognitive decline than people without the condition. In this case, the profiles showed metabolite changes in mitochondrial function and energy metabolism. The Dr. Evan Thacker, an epidemiologist at the University of researchers hope that such changes will lead to the panel Alabama at Birmingham, led the analysis of 5,150 people of biomarkers which can be used for early diagnosis, aged 65 years and older who were enrolled in the U.S. monitoring of Alzheimer's progression and evaluating Cardiovascular Health Study. They did not have atrial therapeutic approaches. fibrillation or a history of stroke at baseline. The scientists were led by Dr. Eugenia Trushina, Assistant 552 of the participants developed incident atrial Professor of Pharmacology at Mayo and co-author of the fibrillation during an average of seven years of follow-up. paper. They analysed cerebrospinal fluid and plasma Compared to healthy peers, their memory test scores samples from 45 people (15 with MCI, 15 with Alzheimer's declined faster after developing the condition. disease and 15 controls) and detected significant changes Dr. Thacker said: “Our study shows that problems with in the cerebrospinal fluid and plasma in those with memory may start earlier in people who have atrial cognitive decline and Alzheimer's. More importantly, fibrillation. This means that heart health is an important changes in the plasma accurately reflected the changes in factor related to brain health.” the cerebrospinal fluid. www.neurology.org/content/early/2013/06/05/WNL.0b013e31829a33d1.sho Dr. Trushina said: "We want to use these biomarkers to rt?sid=66367562-aa3e-492d-a5d3-e9e61780321c diagnose Alzheimer's disease before symptoms appear - which can be decades before people start exhibiting 10 June: Hypoglycaemia is a risk factor for memory loss. The earlier we can detect the disease, the dementia better treatment options we will be able to offer." A new study from the University of California in San www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0063644 Francisco (UCSF) shows that diabetics with episodes of significant hypoglycaemia, or low blood sugar, have twice 1 June: Emotional contagion is higher in MCI & AD the chance of developing dementia. A research team from the University of California, San Researchers collected data on 783 diabetic patients aged Francisco (UCSF) has shown that people with MCI or 70-79 and free of dementia at the start of the study in Alzheimer's disease have a higher tendency to develop 1997. Over an average of 12 years of follow-up, emotional contagion, i.e. to mirror the emotions of those participants took periodic tests of mental ability. around them. The results showed that people who were hospitalised for According to Virginia Sturm, lead researcher and Assistant severe hypoglycaemia had twice the risk of developing Professor of Neurology at UCSF, emotional contagion is a dementia compared with those who did not. In addition, rudimentary form of empathy, enabling people to share people with dementia were more than twice as likely to and experience other people's emotions: "It's a way by have severe hypoglycaemia. which emotions travel across people quickly and even without awareness." She added that this process can The research team was led by Dr. Kristine Yaffe, study shape behaviours and cause changes in the brain. author and Professor of Psychiatry, Neurology and Epidemiology at UCSF. While the exact reason is The study involved 237 adults, including 62 with MCI and unknown, she theorised that hypoglycaemia may reduce 64 with Alzheimer's disease. The others were healthy the brain's supply of sugar to a point that causes some controls. They took tests to identify depression and other brain damage. mental health problems and also underwent MRI scans to identify changes in the brain related to emotional http://archinte.jamanetwork.com/article.aspx?articleid=1696172 contagion. 13 June: Lilly ends BACE trial for AD The researchers found higher emotional contagion in On 13 June, Lilly announced that it stopped its Phase 2 those with mild mental impairment and Alzheimer's clinical trial of LY2886721, a beta secretase inhibitor disease, compared to the controls. They also found that (BACE) in testing for Alzheimer's disease. the contagion grew proportionally with damage to the right temporal lobe of the brain. Dr. Gandy said: The trial was halted when monitors detected abnormal "Classically it has been the frontal lobe damage that leads liver biochemical tests. However, Lilly stated that it does to emotional disturbance. Now we know the temporal not currently believe that the abnormal tests are related lobes can play similar roles." to the BACE mechanism.

www.pnas.org/content/110/24/9944.abstract?sid=fdc5b960-c7e7-4db6- https://investor.lilly.com/releasedetail.cfm?releaseid=771353 a0e4-c6568e04309d

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15 June: NAP protects and restores microtubule causes all these symptoms down the line. Once you've hit functions your head, the injury isn't done." A research team from Tel Aviv University (TAU) has The findings drew immediate criticism from experts who developed a drug called NAP or Davunetide that protects believe the researchers went too far in trying to draw a and restores microtubule function inside cells. link between concussion damage and the chronic damage found in Alzheimer's disease. Dr. Ken Podell, a Microtubules are organised in networks that maintain cell Neuropsychologist at the Methodist Concussion Center in structure and act as highways for intracellular and Houston, said: "It's very inconclusive at this time, and extracellular transporters. However, neurodegenerative there's no clinical application of this at this point of time." diseases cause this network to break down, resulting in Dr. Ron Petersen, Director of the Mayo Alzheimer's hindered motor abilities and cognitive function. Disease Research Center, said: "It's an interesting observation, but I think they are making a leap that the NAP is a peptide derived from the ADNP protein, which pattern of changes they see on the scan are indicative of regulates hundreds of genes and is essential for brain what we see in Alzheimer's disease." formation, memory, and behaviour. In this study, NAP was observed to maintain or revive the transport of The study authors agreed that their findings are tentative. proteins and other materials in cells, thus alleviating They would like to see more research that will further symptoms associated with neurodegeneration. explore this potential link.

The researchers were led by Prof Illana Gozes, Director of http://radiology.rsna.org/content/early/2013/06/04/radiol.13122343.abstrac TAU's Adams Super Center for Brain Studies. They used t?sid=9958e99e-dd45-4f3c-9c0f-0625fb3a9fb2 two different animal models with microtubule damage. The first group was made up of normal mice whose microtubule system was broken down through the use of a compound. The second group were genetically- engineered mouse models of ALS, in which the www.alzheimer-europe.org/Donation microtubule system was chronically damaged. In both groups, half the mice were given a single NAP injection 19 June: Silent strokes are strongly linked to while the control half were not. cognitive decline The results showed that NAP maintained or revived the A new American population study shows a significant link transport of proteins and other materials in cells, between people experiencing symptoms of "silent" ameliorating symptoms associated with strokes whose symptoms resolve quickly and the onset of neurodegeneration. cognitive decline. www.nature.com/mp/journal/v18/n7/full/mp201332a.html The study followed 23,830 people of average age 64 who 18 June: New concussion-dementia link causes had no memory problems and had never had a stroke. They completed a stroke symptoms questionnaire at the dispute start of the study and every six months for at least two Researchers at the University of Pittsburgh School of years. The participants' memory and thinking skills were Medicine have concluded that concussion can lead to also tested yearly. During the study, 7,223 people damage in the white matter of the brain that resembles developed stroke symptoms. abnormalities of early Alzheimer's disease. They added The bi-racial study found that Caucasians who had stroke that about 15% of concussion patients suffer persistent symptoms were twice as likely to develop cognitive neurological symptoms. problems (11%) than Caucasians who did not have stroke White matter is the tissue through which messages pass symptoms (5%). African-Americans who had stroke between different areas of grey matter within the brain symptoms were nearly 70% as likely to develop thinking and spinal cord. The researchers reviewed past brain problems (16%) as African-Americans who did not have scans of 64 people who had suffered a concussion, and stroke symptoms (about 10%). compared the scans to symptoms reported by concussed This study was led by Dr. Brendan Kelley, Associate patients - particularly symptoms of Alzheimer's disease. Professor of Neurology at the University of Cincinnati, The results showed a significant correlation between high along with researchers from the University of Alabama concussion symptom scores and reduced water (Birmingham) and Indiana University School of Medicine. movement in the parts of the brain's white matter related Dr. James Pickett, Head of Research for the UK to auditory processing and sleep-wake disturbances. In Alzheimer's Society, commented: "People can think of addition, the distribution of white matter abnormalities in mini-strokes as a temporary medical problem, yet this mildly concussed patients resembled the distribution of research warns us of the lasting damage silent strokes can abnormalities in people with Alzheimer's disease. have on the brain. This study shows how even symptoms Dr. Saeed Fakhran, study author and Assistant Professor of a mini-stroke can still dramatically increase your risk of of Radiology at Pittsburgh, said: "The previous thinking long term cognitive decline." The Alzheimer's Society was before was you get a concussion, and that causes a not involved in the study. certain damage from bopping your head and you get www.neurology.org/content/early/2013/06/19/WNL.0b013e31829a352e.sho these symptoms. We found it acts as a kind of trigger, and rt?sid=df1bda97-6309-428b-9754-b83cfcc2beeb lights a fuse that causes a neurodegenerative cascade that

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20 June: Scientists present high-resolution 3D Medicines containing substances known as ergot brain model derivatives can have serious side effects, called fibrosis and ergotism. As a result, they should no longer be used An international team of scientists has presented the first in the EU to treat a number of conditions involving blood high-resolution 3D digital brain model. circulation problems (that usually affect elderly patients) or problems with memory and sensation, or to prevent "Big Brain" is based on 7,400 sections from the brain of a migraine headaches, as the risks outweigh the benefits. deceased 65-year-old woman, each half the thickness of a human hair. Each slice was stained to bring out the Some ergot derivatives are approved in some EU Member anatomical detail and then scanned into a computer in States for use in other therapeutic indications, including high definition. A total of 80 billion neurons were other circulatory disorders, treatment of dementia captured in this ten year process. (including Alzheimer’s disease) and treatment of acute migraine. These indications were not included in the Prof Paul Fletcher, a Psychiatrist at Cambridge University, CHMP review; therefore these products will remain said that Big Brain will allow him to see details at the level authorised and may continue to be used in those at which brain computations take place. He said: "We will indications. be able to study the responses seen in people and map it on to an atlas that goes close to the individual layers of The full text of the press release can be found on the the brain's cortex, to the very cells themselves". agency's website.

Big Brain will be made available to neuroscientists www.ema.europa.eu/ema/index.jsp?curl=pages/news_and_events/news/20 worldwide. It is one of several large brain mapping 13/06/news_detail_001832.jsp&mid=WC0b01ac058004d5c1 projects, such as the Human Connectome Project in the 28 June: Amylin protein may be a new AD US and the Human Brain Project programme in the EU. biomarker www.sciencemag.org/content/340/6139/1472.abstract www.youtube.com/watch?v=nJpFvQ0YZLk Researchers from the University of California in Davis (UCD) have shown that an amyloid protein called amylin 27 June: New synthetic molecule improves may be a new biomarker for Alzheimer's disease. memory in mouse models Amylin (IAPP - islet amyloid polypeptide) is a hormone A new study shows that a synthetic molecule called produced by the pancreas along with insulin. It circulates MW108 can reduce the activity of enzymes called CNS- in the bloodstream, acting to regulate blood glucose levels active kinase inhibitors that are thought to cause neuron and a high level of amylin in the pancreas is a hallmark of destruction. type 2 diabetes. The UC scientists have demonstrated that amylin also accumulates in the brains of diabetics and These enzymes modify the activity of other proteins people with dementia. The hormone creates its own through phosphorylation, i.e. by chemically adding deposits and has also been detected as a component of phosphate ions to them. The plaque associated with amyloid plaque. Alzheimer's disease is believed to consist of phosphorylated beta amyloid. The team was led by Dr. Charles DeCarli, Professor of Neurology at UCD. He said: "We've known for a long time Scientists led by Dr. Martin Watterson, Professor of that diabetes hurts the brain, and there has been a lot of Molecular Biology and Biochemistry at Northwestern speculation about why that occurs, but there has been no University (Illinois), tested the effects of MW108 on conclusive evidence until now. Alzheimer's mouse models and also brain slices. Live mice that were treated with MW108 showed significant "This research is the first to provide clear evidence that memory improvements in water maze tests, while brain amylin gets into the brain itself and that it forms plaques slices showed higher levels of activity and reduced decay. that are just like the amyloid beta that has been thought www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0066226 to be the cause of Alzheimer's disease. In fact, the amylin looks like the amyloid beta protein, and they both 28 June: EMA restricts medicines with ergot interact. That's why we're calling it the second amyloid of derivatives Alzheimer's disease." The European Medicines Agency’s Committee for The research was conducted using tissue from the brains Medicinal Products for Human Use (CHMP) has of individuals over 65 donated to UCD: 15 people with recommended restricting the use of medicines containing Alzheimer's disease and type 2 diabetes, 14 people with ergot derivatives. These medicines should no longer be Alzheimer's disease without diabetes and 13 healthy used to treat several conditions involving blood controls. Scientists found amylin deposits in the grey circulation problems or problems with memory and matter of the diabetic patients with dementia, as well as sensation, or to prevent migraine headaches, since the in the walls of their cerebral blood vessels. They did not risks are greater than the benefits in these indications. find any deposits in the brains of the healthy control subjects. This is based on a review of data showing an increased risk of fibrosis (formation of excess connective tissue that http://onlinelibrary.wiley.com/doi/10.1002/ana.23956/abstract can damage organs and body structures) and ergotism (symptoms of ergot poisoning, such as spasms and obstructed blood circulation) with these medicines.

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Ms Dench has been a friend of the Dementia in Society University since 2003, when she 1 June: New competition aims to reward social opened a dementia centre on the Stirling campus. The research and innovation training centre was named after Iris A new competition called "Social innovation in ageing - Murdoch, a British novelist who the European award" has been launched by the King developed dementia late in her life. Ms Dench played Iris Baudouin Foundation, in association with La Caixa Murdoch in an award-winning 2002 film. Foundation and UniCredit Foundation. During the award ceremony, she said: "When I formally The award intends to promote and support social opened the Iris Murdoch Building over a decade ago, I innovation in the field of active and healthy ageing in was delighted to see a public building which could provide Europe. The organisers are looking for social innovations an exemplar for dementia-friendly design. in the field of active and healthy ageing which respond to "Coming back to the university, it is so encouraging to see social problems and needs in a sustainable and socially the myriad of ways the Dementia Services Development accepted way. Centre and its staff have informed practice and made a In a simple sense, social innovation aims at improving the positive difference to people's lives. lives of people through new solutions (products, "I would like to thank the university and the centre for processes, services, practices). An idea becomes an honouring me with this degree and I hope my presence innovation through proving its effectiveness, generating here today will further highlight the world-class research impacts, challenging existing solutions and spreading. they carry out." Three winners in this competition will be awarded with EUR 10,000, 5,000 and 3,000. The deadline for New Publications & Resources applications is 15 July 2013. Registration information is available on the website shown below. 3 June: German foundation offers EUR 100,000 for AD research www.changemakers.com/innovationinageing 11 June: York will be a dementia friendly city The Hans and Ilse Breuer Foundation is accepting applications from scientists researching dementia for its The English city of York is proceeding EUR 100,000 Alzheimer Research Award. toward its goal of becoming a dementia- The award is available to scientists in Germany or to friendly city in order to meet the needs of German scientists abroad if they intend to return to the an ageing population. According to the city country. The application deadline is 31 July 2013. More council, the number of residents aged 85+ details are available on the foundation's website. are expected to increase by 60% by 2020. www.breuerstiftung.de/eng/ The city authorities began planning in mid-2011, with the aim of enabling elderly residents to live in their own 3 June: Vodafone Foundation is looking for new homes and communities for as long as possible. Their health apps major challenge was to manage an increasing service requirement while facing a 28% reduction in government The Vodafone Foundation, in cooperation with AGE funding. Nonetheless, a plan to develop two new care Platform Europe and the European Disability Forum (EDF), homes and a community village for older people was has launched a competition for "transformational apps" prepared and recently approved. that are "designed to improve people's lives and deliver substantial public benefit". The community village will provide at least 72 homes, a quarter of which will be affordable housing, providing Creators of the winning apps, in categories including residents with care support from independent living accessibility, mobilising public services, health and through to end-of-life care. The care homes will be education, will receive a shared prize fund of EUR 200,000 designed for those who are frail, elderly or have to be used for the development of their innovations. The dementia. They are based on the household model closing date for entries is 15 October and an awards providing a "home within a home": residents will live in ceremony will be held in Brussels on 5 December 2013. self-contained households of six to 12 people with similar www.mobileforgoodeuropeawards.com needs, and have a kitchen, living areas and enclosed garden. 13 June: OECD publishes report on long-term care These new homes will be a key part of York's efforts to The OECD recently released a new report entitled "A future-proof the city in line with the changing needs of its Good Life in Old Age?" that offers evidence and examples residents. of useful experiences to help policy makers, providers and experts measure and improve the quality of long-term 27 June: Judi Dench wins an Honorary Doctorate care services. On 27 June, Dame Judi Dench was awarded with an According to the report, which was sponsored by the honorary doctorate from the University of Stirling for her European Commission, the fastest-growing age group contribution to film. consists of people over 80 whose number will almost triple by 2060, rising from 4.6% of the population to 12% in 2050 in the European Union. It is estimated that up to

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half of them will need help to cope with their daily 20 June: University of Stirling publishes book on activities. housing Yet even today, families and public authorities are The University of Stirling has released a new book entitled struggling to deliver and pay for high-quality care to "Improving the design of housing to assist people with elderly people with reduced physical and mental abilities. dementia". Moreover, few countries systematically measure whether long-term care is safe, effective, and meets the needs of The book explains why environmental design is so care recipients. important for people with dementia and goes on to describe the design features that follow from this. It This report is about how countries are addressing these describes modifications that are recommended within challenges by developing measures to ensure a high individual houses and flats, along with those that are quality of long-term care - care that is safe, effective and helpful in communal internal spaces within specialist care centred around the needs and abilities of the care housing units. There is also a section on designing outside recipients themselves. spaces. www.oecd.org/els/health-systems/good-life-in-old-age.htm This book is one of a series to raise awareness of 14 June: Tasmanian university offers free online dementia design issues and improve the design of dementia course buildings used by people with dementia. The University of Tasmania is offering a free online course The book is available as a free download and can also be on dementia that is open to anyone with an interest in purchased as a paperback. dementia. www.dementiashop.co.uk/products/improving-design-housing-assist-people- dementia-free-download "Understanding Dementia" is divided into 3 primary themes: the brain, the diseases and the person. It aims to 21 June: New website explains dementia research provide understanding and improve quality of life across and funding the trajectory of dementia for people with the condition, their families and carers. Alzheimer's Research UK has launched a website called The Lab The course builds upon the latest in international research that provides information on new on dementia and draws upon the expertise of research and treatments for Neuroscientists, Clinicians and Dementia Care Alzheimer's and related diseases. Visitors to the site can Professionals at the Wicking Dementia Research and see a 3D virtual laboratory and hospital, with texts, Education Centre. slideshows and videos about how clinical research and new treatments are funded. "Understanding Dementia" provides an opportunity to engage with the perspectives of an international Tim Parry, Head of Communications and Public Affairs, community on this major health issue, without requiring said: "We wanted to explain the process from scientists exams or assignments. having an idea, through to it becoming a treatment, and we wanted people to be able to move through the Further information is available on the university's environment, rather than along it in a left-to-right website. timeline. www.utas.edu.au/wicking/understanding-dementia "People want to know what's going on, and take heart 18 June: New edition of the Care Manual in French from the fact that research is taking place, and scientists are out there trying to do something to help them. We're Alzheimer Europe is pleased to announce the release of very excited about the role The Lab can play in an updated edition of the French-language "Guide des communicating this." Aidants", a guide for carers of people with dementia. The new edition features new information for Belgium, www.dementialab.org

Luxembourg and Switzerland. The 2013 Guide des Aidants Contact Alzheimer Europe: can be obtained from Alzheimer Europe, 145 route de Thionville, L-2611, Luxembourg [email protected], www.alzheimer-europe.org Alzheimer Europe or its Alzheimer Europe Board member associations in Chairperson: Heike von Lützau-Hohlbein (Germany); Vice-Chairperson: Iva Belgium (La Ligue Alzheimer), France (France Alzheimer), Holmerová (Czech Republic); Honorary Secretary: Charles Scerri (Malta); Luxembourg (Association Luxembourg Alzheimer) and Honorary Treasurer: Maria do Rósario Zincke dos Reis (Portugal); Members: Patrick Maugard (France), Maurice O’Connell (Ireland), Sirpa Pietikäinen Switzerland (Association Alzheimer Suisse). (Finland), Helga Rohra (Germany), Alicja Sadowska (Poland), Henry Simmons (UK - Scotland). The update was made possible by funding from the Alzheimer Europe Staff Fondation Roger de Spoelberch, a Geneva-based Executive Director: Jean Georges; EU Public Affairs Officer: Annette Dumas; foundation that promotes and funds research for Administrative Assistant: Kate Ellis; Editor – Dementia in Europe Magazine: neurodegenerative diseases. Julie Fraser; Information Officer: Dianne Gove; Conference and Event Coordinator: Gwladys Guillory; Communications Officer: Alex Teligadas; www.alzheimer-europe.org/EN/Publications/Care-Manual Administrative Assistant: Grazia Tomasini.

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AE Calendar 2013

Date Meeting AE Representative European Parliament breakfast meeting “The challenges of Neurodegenerative Diseases in the 9 July Annette and Jean workplace” 9-10 July Executive of the European Working Group of People with Dementia (Brussels, Belgium) Jean 13-18 July Alzheimer’s Association International Conference (Boston, USA) Jean Future Conferences

Date Meeting Place 7-10 July 2013 5th International conference on ageing end spirituality, https://events-made- Edinburgh, UK easy.com/Client_Event_Sites/test8008/2011-10-105/cgi-bin/php/home.php 19-20 September 2013 5th International conference: „Senior´s training and non-pharmacological interventions for Bratislava, Slovakia Alzheimer´s disease“, www.alzheimer.sk 21-26 September 2013 XXI World Congress of Neurology, www.oegnt.at Vienna, Austria 30 September- 1 October International Conference on Psychology, Autism and Alzheimer’s disease, San Antonio, Texas, USA www.omicsgroup.com/conferences/psychology-autism-alzheimers-2013/index.php 2-4 October 2013 9th Congress of EUGMS: Improving outcomes in geriatric medicine, www.eugms2013.it Venice, Italy 5-9 October 2013 26th ECNP (European College of Neuropsychopharmacology), www.ecnp-congress.eu Barcelona, Spain 10-12 October 2013 23rd Alzheimer Europe Conference: “Living well in a dementia-friendly society”, www.alzheimer- St. Julian’s, Malta europe.org/EN/Conferences 17-20 October 2013 8th International Congress on Vascular Dementia – ICVD 2013, www.kenes.com/icvd Athens, Greece 24-25 October 2013 Colloque Cesco 2013: Ensemble dans l’action: les outils en soutien aux personnes atteintes de la Montréal, Canada maladie d’Alzheimer, www.iugm.qc.ca/index.php/fr/prof/formationcontinue/colloque/289- cesco.html 11-14 December 2013 The 16th Asia Pacific regional Conference of Alzheimer’s disease international, www.aprc2013- Hong Kong & Macau, China hongkong-macau.com th 20-22 March 2014 58 Annual meeting of the German society for clinical neurophysiology and functional imaging Berlin, Germany (DGKN), www.dgkn-kongress.de 20-23 March 2014 30th International Congress of Clinical Neurophysiology of the IFCN (ICCN), www.iccn2014.de Berlin, Germany 26-29 March 2014 13th Int. Geneva/Springfield Symposium on Advances in Alzheimer Therapy, www.ad-springfield.com Geneva, Switzerland 5-9 July 2014 9th FENS Forum of Neuroscience, http://forum.fens.org/2014 Milan, Italy

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The Alzheimer Europe newsletter arises from the 2013 Work Plan of Alzheimer Europe, which has received funding from the European Union in the framework of the Health Programme.

Page 15 of 15

NEWSLETTER July/August 2013

found time for other activities. Highlights in this issue Editorial Alison Cook joined the UK We welcome Alzheimer's Society as the new 1 July: EC publishes guide on 5 Director of External Affairs and the innovation for ageing back our readers with a double Alzheimer Society of Ireland 9 July: MEP Werthmann hosts 4 issue that covers started a campaign for dementia panel on neurodegenerative two months of friendly communities. Finland's diseases activities. In Muistiliitto is actively pursuing 17 July: Dianne Gove earns 2 Luxembourg we new legislation for self- PhD in Dementia Studies continued to determination and Alzheimer 17 July: Pioglitazone trial aims 13 prepare the Malta Conference, in Nederland will be involved in five to delay MCI onset close consultation with the JPND research projects. The Norwegian Health Association 25 July: MEP Kleva Kekuš joins 4 European Working Group of attended a week-long lobbying the EAA People. We also updated our map of dementia plans in Europe and event while Federazione Alzheimer 26 July: AE joins EMA working 2 Italia participated in a government group celebrated the award of Dr. Dianne Gove's PhD. We were pleased to meeting on bioethical issues in 22 August: JPND names 8 be selected for the European Alzheimer's disease. recipients for research funding Medicines Agency's (EMA) PCWP On the scientific front, we've 23 August: Portuguese 9 Working Party but also saddened covered many highlights from the government receives draft to hear of the passing of Sten- 2013 AAIC Conference in Boston. National Dementia Plan Sture Lidén, a valued friend of For instance, the ADNI initiative Alzheimer Europe. will share the genome sequences In Brussels, our European of 800 people with Alzheimer's

Alzheimer's Alliance gained disease and a new Phase 3 trial of Slovenian MEP Mojca Kleva Kekuš pioglitazone to delay the onset of while existing member Angelika MCI. Lilly also announced a Phase Werthmann hosted an interesting 3 trial of solanezumab, as a conference on neurodegenerative continuation of two previous trials. diseases. European Health A new clinical trial simulation tool Ministers held their first meeting has been approved by the EMA under the new Lithuanian and the agency is also issuing new Presidency and Croatia became draft guidelines for ALS treatment. the 28th member of the EU with Finally, a new study shows that 12 representatives in the European dementia rates seem to have Table of contents Parliament. dropped in three European countries. Editorial ...... 1 Meanwhile, the Portuguese This issue also covers new Alzheimer Europe ...... 2 government has received a text for a national dementia plan and the publications, including a new WHO European Alzheimer's Alliance...... 4 Netherlands adopted a new mental health report and an EU report on legal incapacity. The UK Alzheimer Europe Networking ...... 4 dementia standard. Malta named our colleague Charles Scerri to Alzheimer's Society has published EU Developments ...... 5 focus efforts on launching a a dementia guide for doctors and a Policy Watch...... 8 Maltese plan by the end of the new book explores activity year. Both Ireland and Scotland planning in care homes. Members’ News ...... 9 have launched new research We look forward to seeing you all Science Watch ...... 12 initiatives and Wales began a in Malta, where we're expecting programme to support people Dementia in Society ...... 16 more than 400 delegates. The final with dementia. Naturally, our conference programme is now New Publications & Resources...... 17 member associations are fully online and lists all 170+ oral and involved and we wish them every Job opportunities ...... 18 poster presentations. success. AE Calendar 2013 ...... 19 Jean Georges Many of our members are Future Conferences ...... 19 preparing for World Alzheimer's Executive Director Day on 21 September, but also

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Alzheimer Europe 16 July: Charles Scerri is named as Malta's National Focal Point on dementia 17-18 June: Dianne Gove attends UN Human Dr. Charles Scerri, General Secretary of Rights symposium the Malta Dementia Society and On 17-18 June, Dianne Gove, Information Officer for Honorary Secretary of Alzheimer Alzheimer Europe, attended the regional symposium in Europe, has been appointed by the Brussels on Preventing Abuse and Neglect of Older Maltese government as the National Persons in Europe, which was organised by the United Focal Point to develop a national Nations Human Rights Office of the High Commissioner dementia strategy by the end of 2013. and the European Commission Directorate General for The appointment was announced on 16 July by Employment, Social Affairs and Inclusion. Parliamentary Secretary Franco Mercieca. He noted that Issues such as human rights in ageing societies, abuse and there are some 5,200 Maltese people currently living with neglect in care institutions as well as in informal and dementia and this will increase to 14,000 people in the community-based care settings and human rights next 25 years. advocacy were discussed. Barbro Westerholm, Member of Dr. Scerri will lead the task of updating the 2010 draft the Swedish Parliament, highlighted the persistence of dementia strategy and presenting the update by the end ageism and emphasised the need to avoid considering of the year. At that time, the update will be presented for older people as a burden. Francesca Colombo, Senior public consultation with the key stakeholders - including Health Policy Analyst, OECD, described the need for people with dementia and their relatives. measures to monitor the quality of long-term care, which achieve the right balance between factors relating to Dr. Charles Scerri is a lecturer in Neuropathology and clinical quality and those relating to quality of life. In Neuropharmacology at the University of Malta. He has relation to the development of policies, she emphasised been the General Secretary of the Malta Dementia Society the need to strike the right balance between care since its inception in September 2004. In 2008, he was processes which are standardised and those which are elected to the Alzheimer Europe Board as a member and tailored to care recipients’ needs. in 2012 as the Honorary Secretary of the organisation. The conference ended with a lively debate about the 17 July: Dianne Gove earns PhD in Dementia advantages and disadvantages linked to a potential new Studies instrument (i.e. a convention) on older people’s rights. There were mixed opinions as to whether a new We are pleased to announce that Dianne instrument would be helpful or whether existing Gove, Information Officer at Alzheimer instruments should be better used. Europe, was awarded a PhD in Dementia Studies from the University of Bradford on 8 July: EWGPWD Executive Board meets in 17 July 2013. Dr. Gove's thesis is entitled Brussels "GPs, stigma and the timely diagnosis of dementia". On 8-9 July, the Executive of the European Working Dianne would like to thank Jean Georges and the Board of Group of People with Alzheimer Europe for having supported this study, as well Dementia (EWGPWD) held a as her supervisors: Prof Murna Downs and Prof Neil Small meeting in Brussels. from the University of Bradford and Prof Myrra Vernooij- Dassen from Radboud University Nijmegen Medical The Executive consists of Centre, as well as Prof Rob Newell, formerly from the Chairperson Helga Rohra and the three Vice Chairpersons: University of Bradford. Nina Baláčková, Jean-Pierre Frognet and Agnes Houston. The meeting was also attended by carers Kveta Provinska 26 July: Alzheimer Europe joins EMA's PCWP and Marie-Anne Schreder, as well as Jean Georges, working group Executive Director of Alzheimer Europe. On 26 July, Alzheimer Europe was accepted as a member The main purpose of the meeting was to prepare the of the European Medicines Agency's PCWP - the Working group's participation in Alzheimer Europe's 23rd Annual Party with Patients' and Consumers' Organisations - for Conference in October 2013. All of the EWGPWD the period 2013-2016. members will attend the conference, where they will have a dedicated stand to welcome visitors and provide This follows an evaluation of several candidates, which information about their activities. Nina will be a keynote found that Alzheimer Europe "fulfils the criteria to speaker during the third Plenary Session and the group participate in the activities of the EMA and is considered will also hold a special session to present their to be in the position to actively contribute to the experiences during the first year of operation of the operation of the working party." EWGPWD. The PCWP provides recommendations to the European The Executive also discussed how to improve Medicines Agency and its human scientific committees on communication between the members and looked ahead all matters of interest to patients in relation to medicinal to activities of the group in 2014. The next meeting of the products. The working party is composed of EWGPWD will take place in Malta on 9 October. representatives from patients' and consumers' organisations that fulfil the eligibility criteria, as well as the Agency's human scientific committees and the Agency

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secretariat. Additional information on the PCWP can be found on the EMA website. www.ema.europa.eu/docs/en_GB/document_library/Other/2010/02/WC500 073497.pdf www.alzheimer-europe.org/EN¸/Conferences/St.-Julian-s-Malta- 2013/Detailed-programme-and-abstracts 1 August: AE updates map of dementia plans in Europe 31 August: Sten-Sture Lidén, former national secretary of Demensförbundet We are pleased to provide an update of our map of national dementia plans in Europe (see below). There are We were saddened to learn that Sten-Sture Lidén, former currently 12 active dementia plans and several more are national secretary of Sweden's Demensförbundet, has on the way. passed away at age 76 after suffering a stroke. According to reports from our member associations, Sten-Sture represented Demensförbundet in a number of Ireland will very likely be the next country to launch a Annual General Meetings of Alzheimer Europe and was an dementia strategy, with Malta and Switzerland close active participant in AE’s first Lawnet project that brought behind. Last year, Austria committed to establishing a together legal experts from many AE member strategy by 2017 while this year has seen significant organisations. progress in Portugal and Slovenia. He was also the founder of the Uppsala dementia We are always keen to report on new developments - association and was very active at the “Kalmar” meetings please continue to let us know what is happening in your of representatives of the various Nordic Alzheimer country. associations. www.alzheimer-europe.org/EN/Policy-in-Practice2/National-Dementia-Plans In the photo, Sten-Sure (right) is together with Pär Rahmström, also from Demensförbundet, at our 23 August: Final Conference programme is online Luxembourg conference in 2010. The final programme for the 23rd Alzheimer Europe Conference is now online. We are pleased to present an interesting variety of over 110 oral presentations from dementia experts from 23 countries. In addition, some 60 researchers and academics will share their findings by presenting a poster at this year's conference. Over 400 people have already registered for this event, which will take place on 10-12 October 2013 in Malta.

Online registration will remain open until 29 September.

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with the three speakers that brain diseases are costly European Alzheimer's Alliance (EUR 800 billion in Europe in 2010) and that the ageing of 9 July: MEP Werthmann hosts panel discussion on the population is another major EU challenge. He then listed the EU commitments in research on NDDs: Horizon the challenges of neurodegenerative diseases 2020 (the current EU research programme), the Joint On 9 July, Angelika Werthmann, MEP Programming of Neurodegenerative Diseases (JPND) and (Austria) and European Alzheimer’s the European Month of the Brain. Alliance member, organised a panel Mr Cupers also mentioned the European Pact for Mental discussion in the European Parliament to Health and Well-Being - a DG Health initiative launched in discuss "The challenges of 2008 - and the Joint Action on Mental Health that started Neurodegenerative Diseases (NDD) in in 2013. One component of this Joint Action is to support the Workplace". The aim of the meeting employees affected by a disease. was to highlight the challenges faced by people affected by NDDs while still employed and to propose Ms Werthmann closed the meeting by emphasising the recommendations for future actions. role and responsibility of politicians in taking appropriate actions. She also pledged to table a Written Declaration The challenges were discussed by Annette Dumas, EU on the challenges of NDDs in the workplace by early Policy Advisor, Alzheimer Europe, Heather Clarke, autumn 2013. European Political Affairs Officer, European Parkinson’s Disease Association and Shana Pezaro, a person with MS 25 July: MEP Mojca Kleva Kekuš joins the EAA representing the European Multiple Sclerosis Platform. All concurred that diagnosis was made far too late, when the The European Alzheimer's Alliance is symptoms are acute. pleased to welcome Mojca Kleva Kekuš, MEP (Slovenia). Ms Kleva Kekuš belongs to Despite some interesting but rare initiatives to help the Group of the Progressive Alliance of people with NDDs remain at work for as long as possible, Socialists and Democrats in the European people suffering from these three neurodegenerative Parliament (S&D). diseases face common challenges on the workplace: stigma and discrimination, the necessity to give up work She sits on the Committee on Regional Development and and lack of adequate support. is part of the Delegation to the Euronest Parliamentary Assembly. In addition, she is a substitute for the The speakers made clear recommendations for future Committee on Economic and Monetary Affairs and the action in the field of early diagnosis, raising awareness, Committee on Women's Rights and Gender Equality. social legislation, mapping of the needs of the persons as well as their involvement in the identification and the Ms Kleva Kekuš joined the Alliance on 25 July, bringing planning of services and policies. EAA membership up to 71 MEPs from 23 countries. Philippe Cupers, Head of Sector Neurosciences, DG Research & Innovation, European Commission, agreed Alzheimer Europe Networking On 9 July, members of the European Working Group of People with Dementia, Annette and Jean participated in a breakfast debate meeting hosted by Angelika Werthmann, MEP (Austria) on neurodegenerative diseases in the workplace (Brussels, Belgium). On 9-10 July, Jean attended the Executive of the European Working Group of People with Dementia (Brussels, Belgium). On 13-18 July, Jean attended the Alzheimer’s Association International Conference (Boston, USA). On 14-15 July, Jean met with Marc Wortmann from ADI for an exchange of information on the activities of the two organisations. He also met with Diane Stephenson from the Coalition against Major Diseases (CAMD) for an exchange and attended a round table discussion organised by the CEO Initiative against Alzheimer’s (Boston, USA). On 16-17 July, Jean met with representatives of Piramal Imaging to discuss 2013 sponsorship opportunities and attended a meeting of Lancet Neurology to discuss the publication of a policy paper on Alzheimer’s disease (Boston, USA). On 8 August, Jean met with a representative of the Executive Agency for Health and Consumers for a negotiation meeting for Alzheimer Europe’s 2014 operating and conference grants (Luxembourg, Luxembourg).

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Members of the European Alzheimer’s Alliance

Currently, the total number of MEPs in the Alliance stands at 71, representing 23 Member States of the European Union and all seven political groups in the European Parliament. Alzheimer Europe would like to thank the following MEPs for their continued support of the European Alzheimer’s Alliance:

Austria: Becker K. Heinz (EPP), Werthmann Angelika (NI). Belgium: Demesmaeker Mark (Greens/EFA), Ries Frédérique (ALDE), Staes Bart (Greens/EFA), Tarabella Marc (S&D). Bulgaria: Parvanova Antonyia (ALDE). Cyprus: Triantaphyllides Kyriacos (GUE-NGL). Czech Republic: Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP). Denmark: Christensen Ole (S&D), Rohde Jens (ALDE), Schaldemose Christel (S&D). Finland: Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli (ALDE), Pietikäinen Sirpa (EPP). France: Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise (EPP), Juvin Philippe (EPP), Morin-Chartier Elisabeth (EPP), Pargneaux Gilles (S&D). Germany: Niebler Angelika (EPP), Roth-Behrendt Dagmar (S&D), Ulmer Thomas (EPP), Weisgerber Anja (EPP). Greece: Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni (S&D), Kratsa-Tsagaropoulou Rodi (EPP). Ireland: Aylward Liam (ALDE), Childers Nessa (S&D), Crowley Brian (ALDE), McGuiness Mairead (EPP), Mitchell Gay (EPP). Italy: Panzeri Pier Antonio (S&D), Toia Patrizia (S&D). Lithuania: Blinkeviciute Vilija (S&D). Luxembourg: Engel Frank (EPP), Lulling Astrid (EPP). Malta: Cuschieri Joseph (S&D). Netherlands: De Lange Esther (EPP), van Nistelrooij Lambert (EPP), Wortmann-Kool Corien (EPP). Poland: Łukacijewska Elżbieta (EPP). Portugal: Carvalho Maria da Graça (EPP), Coelho Carlos (EPP), Matias Marisa (GUE/NGL). Romania: Antonescu Elena Oana (EPP), Busoi Cristian (ALDE), Sârbu Daciana Octavia (S&D), Tanasescu Claudiu Ciprian (S&D). Slovakia: Mikolasik Miroslav (EPP), Zaborska Anna (EPP). Slovenia: Kleva Kekuš Mojca (S&D), Peterle Alozj (EPP). Spain: Badia i Cutchet Maria (S&D), Estaràs Ferragut Rosa (EPP). United Kingdom: Anderson Martina (GUE-NGL), Ashworth Richard (ECR), Hall Fiona (ALDE), McAvan Linda (S&D), McCarthy Arlene (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Taylor Keith (Greens/EFA), Vaughan Derek (S&D), Watson Graham (ALDE), Willmott Glenis (S&D), Yannakoudakis Marina (ECR).

President for the Digital Agenda and Paola Testori Coggi, EU Developments Director General of DG Health & Consumers.

1 July: Commission publishes guide on "Excellent http://ec.europa.eu/digital-agenda/en/news/excellent-innovation-ageing- european-guide-reference-sites-european-innovation-partnership Innovation for Ageing" http://ec.europa.eu/research/innovation- union/index_en.cfm?section=active-healthy-ageing On 1 July, the European Commission published "Excellent Innovation for Ageing - a European guide". This guide 1 July: Croatian officials and MEPs take up EU presents the Reference Sites of the European Innovation posts Partnership on Active and Healthy Ageing (EIP AHA) that have engaged in innovation for active and healthy ageing On 1 July 2013, Croatia became the 28th Member State of in real life in various European regions, cities and the European Union. communities. In the European Commission, Neven Mimica will be in 32 Reference Sites from 12 Member States (Czech charge of the Consumer Portfolio. He was approved by Republic, Denmark, Finland, France, Germany, Ireland, the European Parliament as Commissioner for Consumer Italy, Portugal, Spain, Sweden, The Netherlands and the Policy on 12 June and the EU Council officially appointed UK) have thus been rewarded for implementing Mr Mimica until the end of the Commission's term of innovative technological, social or organisational solutions office on 31 October 2014. to enhance the efficiency of health and social care Croatia also has 12 MEPs in six Committees: systems, and foster innovation and economic growth. Committee on Constitutional Affairs (AFCO): Zdravka Bušić Reference Sites are coalitions of regions, cities, integrated (EPP), Sandra Petrović Jakovina (S&D) hospitals or care organisations that aim to provide concrete examples of innovative services with proven Committee on Foreign Affairs (AFET): Tonino Picula (S&D), added value to citizens and care systems in EU regions. Davor Ivo Stier (EPP), Nikola Vuljanić (GUE/NGL) Some of them have contributed to growth and job creation in their areas and many have extended elements Committee on Budget (BUDG): Andrej Plenković (EPP), of their best practice from local to regional or national Oleg Valjalo (S&D) level. Committee on Environment, Public Health and Food The 32 (of 56) Reference Sites that were selected Safety (ENVI): Biljana Borzan (S&D), Dubravka Šuica (EPP) underwent an extensive self-assessment and peer review Committee on Economic Affairs (ECON): Marino Baldini covering three criteria: innovation, scalability & (S&D), Ivana Maletić (EPP) replicability and outcomes of good practices. The sites have committed to share their achievements with others Committee on Employment and Social Affairs (EMPL): and transfer knowledge across Europe. They adopted Ruža Tomašić (ECR) several of the six actions of the EIP AHA: medication www.europarl.europa.eu/croatiancommissionerhearing/cms/home adherence, fall prevention, frailty and malnutrition, www.consilium.europa.eu/uedocs/cms_data/docs/pressdata/EN/genaff/137 integrated care, independent living and age-friendly 680.pdf environments. www.europarl.europa.eu/meps/en/search.html?country=HR By showcasing Reference Sites, the EIP-AHA aims to 1 July: Lithuania takes over the EU Presidency identify, rate and award the best places to see workable On 1 July, Lithuania took over the innovation in practice across Europe. Presidency of the Council of the The Reference Sites received their awards at a ceremony European Union, the first Baltic state hosted by Neelie Kroes, European Commission Vice- to hold the post. Lithuania took over

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from Ireland and will hand over to Greece on 1 January In a statement following the vote, Evelyn Regner, Vice- 2014. Chair of the Legal Affairs Committee of the European Parliament (JURI) and Rapporteur on the Statute, The motto of the Presidency is "Growing Europe", welcomed the strong show of support by the European focusing on the three goals of a credible, growing and Parliament and called on the Council to quickly move the open Europe. Efforts will be concentrated on further file forward: “It would be very welcome if an agreement strengthening the ground for financial stability, continuing could be reached during the current legislature,” she work to establish the banking union and implementing stressed. new agreed rules on economic governance. Foundations are increasingly seeking to engage in The Presidency will work to strengthen the European transnational European initiatives, but their efforts are economic and social model by encouraging further hampered by a European legal and operating integration of the single market. This will include energy, environment that does not afford them the advantages of the focus on the digital agenda and measures for better the Single Market. Many European initiatives are delayed employment opportunities - particularly for young people. or abandoned due to a number of barriers, including high Finally, Lithuania will promote closer integration of the EU legal and administration costs, difficulties with the and its Eastern Partners, the continuation of the recognition of foreign legal personalities, and legal enlargement policy, free trade with strategic partners and uncertainties over the recognition of the “public interest” effective management of the EU external borders. nature of resident foundations’ cross-border work and public-benefit status. A European Foundation Statute is www.eu2013.lrs.lt widely recognised as the best policy option to overcome 2 July: EFPIA releases Code on the disclosure these hurdles. transfers of value to healthcare professionals and www.europarl.europa.eu/oeil/popups/ficheprocedure.do?reference=2012/0 organisations 022(APP)&l=en#basicInformation On 2 July, the European Federation of Pharmaceutical Industries and Associations (EFPIA) presented its Code on the "disclosure of transfers of value to healthcare professionals (HCP) and healthcare organisations (HCO)". www.alzheimer-europe.org/Donation This Code reflects EFPIA’s commitment to introduce 4 July: EP adopts resolution on access to care for greater transparency in the industry’s interactions with HCPs and HCOs. vulnerable groups Collaborations and partnerships between HCPs and On 4 July, the European Parliament adopted the report of industry are subject to stringent legislation and require MEP Jean Lambert (UK, Green/EFA) on "The Impact of the that all parties respect high ethical standards. EFPIA’s crisis on access to care for vulnerable groups". code will enhance transparency around these With access to healthcare and other social support relationships and ensure that the industry’s work with services threatened by budget cuts, the report uncovers HCPs and HCOs is well understood by the public and important findings and proposes measures to improve the healthcare stakeholders. access to care, support services and healthcare of the The Code was adopted by the EFPIA Statutory General most vulnerable people in society. Assembly of 24 June and requires implementation in The vote sends a message to the European Commission national codes by 31 December 2013. and EU governments on the need to ensure that austerity The code requires all members of EFPIA to disclose measures do not undermine EU values and prevent the transfers of value to HCP’s and HCO’s as of 2016 regarding most vulnerable citizens, such as undocumented all transfers in 2015. The Code also requires each member migrants, children from poor families and the homeless, company to document and disclose on their websites, or from being able to access healthcare, care services and on common websites: 1) the names of healthcare basic living support. professionals and associations that have received The report reveals that the crisis measures put in place by payments or other transfers of value, and 2) the amounts EU governments are leading to a disproportionately or value transferred, and the type of relationship, such as negative affect on vulnerable groups. As an example, cuts consultancy fees, payment for travel or congress fees. in disability benefit are affecting disabled peoples' ability www.efpia.eu/mediaroom/109/43/Pharmaceutical-Companies-to-Disclose- to live independently, while the long-term unemployed All-Financial-Relations-with-Healthcare-Professionals face increasing difficulty in gaining access to healthcare http://transparency.efpia.eu/the-efpia-code-2 and other social support systems. 2 July: MEPs vote in support of a European The report calls on the Commission and EU governments Foundation Statute to carry out social impact assessments to ensure policies do not run counter to the EU’s Anti-Poverty Strategy and On 2 July, Members of the European Parliament voted by close the gaps in existing schemes to ensure their a large majority in support of a resolution for a European affordability, availability and quality. The report also calls Foundation Statute, which would make it easier for for any financial aid to another EU member state to foundations to support citizens’ initiatives across Europe. include a social protection and care dimension. The The proposed Statute will need to be adopted accompanying policies should be evaluated to ensure they unanimously by the Council.

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do not worsen conditions for groups already seen as 1. WEBAE: Leveraging emerging technologies for vulnerable. pharmacovigilance. It also calls on the European Commission to propose a 2. Developing innovative therapeutic Directive on carers' leave. With cutbacks leading to interventions against physical frailty and increased care costs and many vulnerable people forced sarcopenia (ITI-PF&S) as a prototype geriatric to make difficult decisions on whether to cut back or even indication. cancel the care services they receive, the Commission and Member States should explicitly recognise the work of 3. Driving re-investment in R&D and responsible informal carers and provide tailored measures for both use of antibiotics. voluntary and paid carers, such as on work-life balance, 4. Clinical development of antibacterial agents for better coordination between informal and formal care Gram-negative antibiotic resistant pathogens. providers as well as social security policies and training. IMI encourages small and medium-sized enterprises Finally, the report calls on the Council to adopt long (SMEs), patients’ organisations, regulatory authorities, overdue legislation on anti-discrimination. While EU law academic teams, industry, hospitals already outlaws employment discrimination on the and other organisations to form grounds of sexual orientation, age, disability or religion, consortia and apply for participation there is currently nothing in place to prevent people from in the new IMI projects. being discriminated against in their access to healthcare, education or housing. The deadline for submitting Expressions of Interest is 9 October 2013. More information is available on the IMI www.europarl.europa.eu/oeil/popups/ficheprocedure.do?reference=2013/2 044(INI)&l=en website. www.europarl.europa.eu/sides/getDoc.do?pubRef=-//EP//TEXT+TA+P7-TA- www.imi.europa.eu/content/9th-call-2013 2013-0328+0+DOC+XML+V0//EN&language=EN 8-9 July: Ministers hold Informal Health Council 11 July: Commission updates Public Health meeting website On 8-9 July, the first Informal European Union Council of On 11 July, the European Commission updated the Health Ministers of the Lithuanian Presidency of the content on Health Reporting Systems at national level in European Union took place. The Ministers discussed the its Public Health website. future of EU health systems, with a focus on the In August, there was also an update of population sustainability of the healthcare systems. The shifting indicators and old-age-dependency ratio (ECHI 1) with demographic situation, economic hardships and the 2012 data and some EU28 aggregates. assimilation of new technologies are changes that jeopardise this sustainability. http://ec.europa.eu/health/reports/national/systems/index_en.htm http://ec.europa.eu/health/indicators/echi/list/index_en.htm#id1 At the meeting, Health Commissioner Tonio Borg told the 17 July: Commission issues call to support active Ministers that the Commission was ready to support the ageing strategies EU member states in preparation to deal with the challenges ahead. The European Commission has published a call to support the development of comprehensive active ageing Fabio Pammolli, Professor of Economics and Management strategies. at IMT, stressed that sustainable healthcare was closely linked to sustainability of public finances. The question is The aim is to provide financial support for national public how a shrinking and aging population can satisfy the authorities that are willing to engage in the development increasing demand for financing healthcare. and implementation of comprehensive strategies for active ageing. Josep Figueras, Director of the European Observatory on Health Systems and Policies and head of the WHO Support will be provided in various policy areas as well as European Centre on Health Policy, presented a three different levels of governance and relevant stakeholders step proposal to ensure that a healthcare system was to enhance their capacity to take concrete actions for truly sustainable: concentration on value based coverage, tackling the challenges posed by ageing populations. structural delivery reform and strengthening good governance. The deadline for this call is 30 September 2013. http://ec.europa.eu/social/main.jsp?catId=629&langId=en&callId=384&furth The Member States recognised that although the statistics erCalls=yes of EU healthcare systems are good and improving, every state had to understand the importance of issues ahead 1 August: Asbestos is not a root cause of and work together in order to meet the challenges. Alzheimer's disease www.sam.lt/go.php/eng/EU_Ministers_of_Health_sustainability__t/3986 A recent petition to the European Commission sought www.eu2013.lt/en/news/pressreleases/eu-health-ministers-are-meeting-in- lithuania-to-tackle-key-healthcare-challenges recognition that exposure to asbestos is a cause of th Alzheimer’s disease. It also called for corresponding 9 July: IMI launches 9 call for proposals provisions in terms of welfare benefits and healthcare. The Innovative Medicines Initiative (IMI) has launched its In its response, the Commission pointed out that 9th Call for proposals on the following topics: Alzheimer's disease is not scientifically recognised as a form of occupational ill health linked to exposure to

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asbestos at work. For this reason, it is not included in the Healthcare Evaluation EU's Recommendation 670/2003/EC. ACTIFCare: ACces to Timely Formal Care (Maastricht www.europarl.europa.eu/sides/getDoc.do?type=COMPARL&reference=PE- University, Netherlands) 514.951&format=PDF&language=EN&secondRef=02 ALS-CarE: A Programme for ALS Care in Europe (Trinity 6 August: The eHealthMonitor project - a decision College Dublin, Ireland) support system for dementia treatment CLaSP: Care for Late Stage Parkinsonism (University The eHealthMonitor (eHM) project is a three year FP7 College London, UK) effort that began in December 2012. MEETINGDEM: Adaptive Implementation and Validation The project will provide a service-oriented platform used of the positively evaluated Meeting Centers Support in the process of generating a Personal eHealth Programme for people with dementia and their carers in Knowledge Space (PeKS) as an aggregation of all Europe (VU University Medical Center Amsterdam, knowledge sources relevant for the provision of Netherlands) individualized personal eHealth services. The aim is to significantly increase the individualisation of personal RHAPSODY: Research to Assess Policies and Strategies for eHealth services and thereby the quality and acceptance Dementia in the Young (Technical University Munich, of electronic healthcare services for prevention, Germany) treatment, care and decision support. VD_ALS_EU: Strategies and interventions for vital One of the project teams will focus on dementia, decisions in Amyotrophic Lateral Sclerosis in different providing a PeKS specifically for dementia patients, European countries (University of Ulm, Germany) caregivers and medical professionals on the basis of a Risk Evaluation web-based platform. Within this PeKS, end users will have access to disease- and situation-specific information from APGeM: Pre-clinical genotype-phenotype predictors of numerous sources. Alzheimer's disease and other dementia (Akershus University Hospital and University of Oslo, Norway) PeKS also provides interactive monitoring, which will enhance medical decision support and treatment quality COURAGE-PD: COmprehensive Unbiased Risk factor by connecting patients, their caregivers and medical Assessment for Genetics and Environment in Parkinson‘s professionals. Disease (University of Tübingen, Germany) The eHealthMonitor project is funded by the European PERADES: Defining Genetic, Polygenic and Environmental Commission within the 7th Framework Programme. More Risk for Alzheimer’s Disease using multiple powerful information is available on the project website. cohorts, focussed Epigenetics and Stem cell metabolomics

www.ehealthmonitor.eu (Cardiff University, UK) 22 August: JPND recommends funding for 11 new RiMod-FTD: Risk and Modifying factors in Fronto Temporal Dementia (German Center for projects Neurodegenerative Diseases in Tübingen) The EU Joint Programme – STRENGTH: Survival, Trigger and Risk, Epigenetic, Neurodegenerative Disease eNvironmental and Genetic Targets for motor neuron Research (JPND) has Health (King’s College London, UK) recommended funding for 11 new international research projects under two JPND www.neurodegenerationresearch.eu/initiatives/2012-joint-transnational- Transnational calls. calls/closed-calls/risk-factors-2012/call-results www.neurodegenerationresearch.eu/initiatives/2012-joint-transnational- calls/closed-calls/healthcare-evaluation-2012/call-results These projects aim to increase understanding of the factors that put people at risk of developing neurodegenerative diseases such as Alzheimer’s, but also to evaluate health and social care strategies for people living with these debilitating illnesses.

JPND is the largest global research initiative aimed at www.alzheimer-europe.org/Donation tackling the challenge of neurodegenerative diseases. JPND aims to increase coordinated investment between Policy Watch participating countries in research aimed at finding causes, developing cures, and identifying appropriate 18 July: The Netherlands release a national ways to care for those with neurodegenerative diseases. dementia standard The ultimate goal of JPND is to find cures for neurodegenerative diseases and to enable early diagnosis The first National Standard on for early-targeted treatments. Dementia was released in the Netherlands on 18 July. This is the first The project proposals have been proposed for funding by such integral standard and it includes the respective Peer Review Panels based on scientific welfare, care, cure and housing standards which meet the evaluation and by the respective Call Steering Committees wishes of patients and their families. It encompasses all based on budget availability. They are grouped in two professional guidelines, best practices and evidence based categories: Healthcare Evaluation and Risk Evaluation. interventions.

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This project was led by Alzheimer Nederland and involved (SDRC) on 28 August in Edinburgh. The launch marks a 28 branch organisations and associations of professionals completely new collaborative approach to dementia in dementia care. In 2013, the standard will be used to research in Scotland, one that recognises expertise and procure integrated care in 85 dementia care networks. work from all disciplines. Case management for people with dementia is a crucial part of the national standard. The SDRC includes some 165 members who are engaged in all aspects of dementia research: science and 19 August: UK will host a G8 dementia summit technology; clinical, health and applied practice; psychology and humanities; social and population. They The UK will use its presidency of the G8 to hold a global will work to represent Scotland’s dementia research summit on dementia. Prime Minister David Cameron and interests at a national, UK, European and worldwide level. Health Secretary Jeremy Hunt have invited health Administrative support is provided by Alzheimer Scotland. ministers from the member countries to attend the summit in London on 11 December. The consortium is co-chaired by Prof Emma Reynish, Chair of Dementia Research at the University of Stirling and Dr. Mr Hunt said: "This is a global challenge and one which is Peter Connelly, Co-Director of the Scottish Dementia set to intensify. While we continue to pursue tomorrow's Clinical Research Network and Hon Senior Lecturer in cures, it is critical now more than ever to pay serious Psychiatry at the University of Dundee. attention to what we can do to reduce the average number of years living with the condition. The G8 today Henry Simmons, Chief Executive of Alzheimer Scotland, have a unique chance to come together to help people said: “We are delighted that the Scottish dementia manage dementia better, lead healthier lives and deliver research community has decided to collaborate in this real improvements in care and substantial economic way. It is vital that we develop a better understanding of savings." dementia, not only so we can work towards improved treatments and ultimately a cure, but also so we can 23 August: Draft National Dementia Plan is better support people living with the illness now. People submitted to the Portuguese government with dementia and their carers will also have a voice within the Consortium, helping to shape the dementia The structure of Portugal's National research agenda in Scotland.” Dementia Plan has been submitted to the Ministry of Health for approval. Members’ News The submission follows a May 2013 meeting, where a 20 June: Gabriella Salvini Porro attends national group of dementia experts persuaded the government meeting on AD bioethics that existing dementia prevalence figures are sufficiently accurate to allow the next phase of the plan to proceed On 20 June, Gabriella right away. The group put forward a prevalence figure of Salvini Porro, President of 160,000 people with dementia in Portugal, which negated Federazione Alzheimer the need for a dedicated epidemiological study - an Italia (FAI), attended a meeting of Italy's National expensive and lengthy process. Bioethics Committee of the Presidency of the Council of Ministers. The aim of the meeting was to hear an update The group included psychiatrists, neurologists, general from a working group that is investigating bioethical practitioners, researchers, members of the municipalities issues in Alzheimer's disease. and representatives of Alzheimer Portugal. Their work was coordinated by Prof Joel Menard, an architect of the Ms Porro, who was also a co-founder of original French Alzheimer Plan. FAI, is recognised as an expert on dementia issues. During the meeting, The next phase of the national plan is a study to she provided feedback to the members determine the needs of people with dementia. This study of the working group and also is already prepared and can begin very quickly. It will answered questions about various begin in the north of Portugal and will return results aspects of living with dementia. within six to nine months According to Álvaro de Carvalho, the Coordinator of the National Mental Health 3 July: Ireland focuses on health of family carers Programme, the rest of the country will follow in turn. On 3 July, the Alzheimer Society of Ireland Alzheimer Portugal was represented by Fátima Brito, Vice and the Irish Health Research Board (HRB) Chairperson and Celso Pontes, Coordinator of the announced a plan to co-fund a new large Scientific Committee. The association is very pleased that scale research project on family carers and its role as an active stakeholder has been acknowledged dementia in Ireland. and praised by the participants of this working group. The project will focus on the health of those caring for 28 August: Scotland launches Dementia Research people with dementia and will receive a total of EUR Consortium 300,000 over three years. The research team will recruit 300 spousal dementia caregivers aged over 60 and will be Angiolina Foster, Scotland's Director led by Prof Brian Lawlor, Professor of Old Age Psychiatry of Health and Social Care Integration at Trinity College Dublin. launched the country's first Grainne McGettrick, Policy & Research Manager of the Dementia Research Consortium Society, said that this this research will provide, for the

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first time in Ireland, information on the determinants of Commenting on her new the health of carers of people with dementia. She added: role Alison said: "It has "Irish dementia care policy has a massive reliance on the taken a huge amount of family carer as the main provider of dementia care. By effort from Alzheimer's gaining an understanding of the carers’ health Society, and others, to put dementia at the top of the determinants this research will inform policy into the political agenda; not only for people with the condition future that can point to the development of targeted but for our society and the economy. I feel privileged to interventions in order to improve carers' health and make be given the opportunity to work with the team to make care in the community a viable option.” sure that we continue to capitalise on the political and public spotlight as much as we can. I look forward to 9 July: Flemish cyclists with dementia scale the playing my part in making sure that the Society is Mont Ventoux demanding and facilitating new research and better services on behalf all those who rely on us." On 9 July, the Flemish Alzheimer Association co- Alison replaces Andrew Chidgey, who left his position in organised a cycling event May after over ten years at the Society to take up a Chief on the Mont Ventoux Executive role at a leading HIV and aids charity in Hong mountain, on the same route taken by the 2013 Tour de Kong. France racers a few days later. Four people with early onset dementia were among the group that achieved the 15 July: Dementia Dogs are put to work in climb to the 1,911 metre summit in Provence. Scotland The main organiser was Te Gek!? ("Too Crazy?!"), a Oscar the Golden Retriever and Kaspa the project unit of the psychiatric hospital Sint-Annendael Labrador have become the first assistance Diest. The event was also realised in cooperation with The dogs in the UK to help people with Flemish Centre of Expertise on Dementia. The cyclists with dementia. The dogs have been highly dementia were joined by Te Gek?! employees, a trained to help offer practical assistance and help to psychiatrist and several Flemish celebrities. reduce social isolation and anxiety levels, some of the major problems experienced by couples where one The aim of the event was to break the stigma associated partner has dementia. with early onset dementia and to show that people with dementia are still capable of living a normal and active They are part of the Dementia Dog project, a partnership life. The afflicted cyclists were highly motivated, but did between Alzheimer Scotland, the Glasgow School of Art, encounter some barriers due to the limitations of the Dogs for the Disabled and Guide Dogs Scotland. disease. However, this did not stop any of them from participating in this mini Tour de France and the ascension Oscar and Kaspa can help of Mont Ventoux will certainly erase any remaining people to wake up, fetch doubts about their abilities. medicines when an alarm goes off and take items from one person to another. They also provide a reason for regular walks, which can help maintain social skills and awareness of community activities. The carers find that they are spending less time giving reassurance to their partner because the dog gives a calming new focus for the person with dementia. Joyce Gray, Deputy Director of Development at Alzheimer Scotland, said: “Dementia Dog has had a truly wonderful impact on the families involved and Alzheimer Scotland is delighted to have been part of this ground-breaking project. It has also been a great example of partnership working. Supporting people with dementia and their

families to live well with the illness requires innovative 12 July: Alzheimer's Society welcomes new and imaginative approaches and the Dementia Dog team Director of External Affairs have brought all this and more to the project.” On 12 July, Alison Cook joined the UK Alzheimer's Society http://dementiadog.org http://vimeo.com/50140686 as the new Director of External Affairs. 17 July: Wales to launch nationwide community Prior to joining the Society, Alison was a director at leading consultancy MHP project for people with dementia Health Mandate, successfully supporting The UK Alzheimer’s Society has been awarded over EUR businesses, universities, charities and 835,000 from the Big Lottery Fund for project to support membership organisations with research people living with dementia in Wales. and strategy policy and communications advice. Previous to that role, Alison was The award will fund the society's "Life not just a service" Director of External Affairs at the Royal College of project, which aims to enable people with dementia and Surgeons, and Head of Policy Communications at the their carers to feel more supported and enjoy a full and Department of Health. active life.

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The project will be delivered through a programme of with dementia and their families are supported to live weekly community courses that include art, drama, well and remain active in their community. They are patchwork quilting, family history, and photography. inclusive of people with dementia, and improve their Courses will run for ten weeks and will be offered in many ability to have choice and control over their lives. locations across Wales. People with dementia will be involved in all aspects of the programme, which will run The Alzheimer Society of Ireland is supporting and for three years. building the capacity of eight communities across the country to get involved. It is providing these communities Sue Phelps, Director of Alzheimer’s Society in Wales said: with an award of up to EUR 25,000 over the next three "We are delighted to have been awarded this grant. We years. know that people with dementia report feeling lonely and isolated, and this project aims to address that. The awards are being used to support organisations, local communities, groups and neighbourhoods to play their "We want to make individuals feel more valued as part of part in making their local community more "dementia- family, community and civic life and hope that by doing friendly" and will develop new and inspiring initiatives so, people living with dementia in Wales can be supported which promote genuine inclusion for people with to become more independent, feel less isolated and have dementia in their community. a better quality of life. A national steering group has also been established to "The local, community focus of the project will enable us guide the direction of the work. Also as part of the to reach people living in more isolated, rural areas and in support provided to the communities involved, the harder to reach communities." Society will be developing a Dementia Friendly Communities toolkit that will be comprised of information 8 August: Norwegian Health Association lobbies about the initiative including a guide to example of other for better dementia care dementia friendly activities, awareness raising material and useful checklists. The Norwegian Health Association recently made its The Project Leader for this initiative is Avril Easton, who first appearance at can be reached at [email protected] "Arendalsuka", an annual forum for informal meetings between 22 August: Alzheimer Nederland will co-finance politicians, organisations, business and the media in five JPND research projects Norway. The forum lasts for an entire week, allowing national delegates in politics, society and industry to meet Alzheimer Nederland is one of the each other and the public and to debate and develop contributors of the 2012 JPND call for policies for the present and the future. A particular goal of research into neurodegenerative the forum is to bring organisations and individuals into diseases. The JPND (EU Joint Programme direct contact with key national politicians and business – Neurodegenerative Disease Research) leaders. has selected 11 projects from 11 international consortia for funding of up The Association's presence included an information stand to EUR 25 million. that received numerous visitors - including people with dementia - and provided information about their work Five of these consortia include Dutch research institutes and about living with dementia. Members of the and two projects are led by Dutch researchers. Alzheimer Association also lobbied politicians from all the Norwegian Nederland is contributing to the research projects of all parties on day care, more funding for research and quality five consortia. These are called ACTIFCare, MEETINGDEM, in nursing homes. They also had the opportunity to RHAPSODY, PERADES and RiMod-FTD. network with representatives of 80+ organisations that More information about these projects can be found on were present at the forum. the JPND website and also in the related article on page 8 The Association was very pleased with the results of its of this newsletter. participation and is already planning for a larger presence www.neurodegenerationresearch.eu. at next year's Arendalsuka. Anne Kjersti Toft, Political Advisor, is happy to answer queries about the 30 August: Finland gears up for Memory Week and Association's lobbying work. She can be reached at World Alzheimer's Day [email protected] This year, the 13 August: The Alzheimer Society of Ireland Alzheimer Society of embarks on Dementia Friendly Communities Finland and its Initiative member associations are celebrating 25 years of advocacy for people with memory ailments. In 2013, their motto is The Alzheimer Society of Ireland has embarked on the to TAKE CARE! of each other and everyone around us, development of a new Dementia Friendly Communities including people with dementia. initiative. This initiative is focussed on improving the inclusion and quality of life of people with dementia and During the upcoming World Alzheimer’s Day and Memory their families. Week, all the members will be involved in festivities, actions and events that will hopefully garner media Dementia Friendly Communities demonstrate a high level coverage and increase awareness all over Finland. The of public awareness and understanding so that people Society will be emphasising the need for security,

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autonomy and self-determination for all people with www.ema.europa.eu/ema/doc_index.jsp?curl=pages/includes/document/do cument_detail.jsp?webContentId=WC500146179&murl=menus/document_li memory ailments. brary/document_library.jsp&mid=0b01ac058009a3dc Meanwhile, the Finnish Ministry of Social Affairs and Health is developing new legislation to reinforce the rights of patients for self-determination. The Society is keenly involved in this process, as it will lead to Finland's first law to regulate restrictions of freedom for people with www.alzheimer-europe.org/Donation dementia. It is expected that the law will be enacted by November 2014. 12 July: Lilly will conduct a new Phase 3 trial of solanezumab www.muistiliitto.fi/en www.stm.fi/en Lilly will conduct a new Phase 3 trial of solanezumab on people with mild Alzheimer's disease who appeared to Science Watch respond to treatment in two previous trials. 7 July: FDA approves rivastigmine patch for severe The previous trials took place in 2012 with people AD displaying mild to moderate AD symptoms, but neither trial met its primary endpoints. However, a combined On 7 July, the US Food and Drug Administration (FDA) analysis showed that the drug slowed cognitive decline by approved Novartis’ application to expand the use of its 34% in people who started out with only mild symptoms. rivastigmine transdermal film to treat symptoms of severe Alzheimer’s disease. The new trial is called Expedition 3 and will involve up to 2,100 people with mild symptoms of Alzheimer's disease. The rivastigmine patch releases a steady stream of They will be pre-screened with an imaging agent to medicine into the bloodstream over a 24-hour period. It ensure the presence of brain plaque. Solanezumab is was originally approved in 2007 for the treatment of mild designed to block the activity of the beta amyloid protein and moderate forms of Alzheimer's and Parkinson's that forms the plaques. Recruitment will begin in disease. September 2013 and the trial will last for 18 months.

www.pharma.us.novartis.com/newsroom/pressreleases/137182.shtml http://clinicaltrials.gov/ct2/show/NCT01900665?term=solanezumab&rank=1 10 July: New AD trial simulation tool is approved 12 July: Global project collects genome sequences by EMA and FDA of 800 people with AD A new simulation tool for improving trial design in The Alzheimer's Disease Neuroimaging Initiative (ADNI) Alzheimer’s disease has received positive opinions from has collected the entire genome sequences of more than both the European Medicines Agency (EMA) and the US 800 people with Alzheimer's disease. This data - estimated Food and Drug Administration (FDA). at 200 terabytes or 200,000 gigabytes - will be made The Clinical Trial Simulation Tool applies computerised available to researchers worldwide. models to simulate “what-if” scenarios for clinical trials. It ADNI enrols people with Alzheimer's disease, mild is intended as an open resource for companies designing cognitive impairment, and normal cognition who have clinical trials for Alzheimer's disease. agreed to be studied in great detail over time. The goal is The tool was developed by the Critical Path Institute (C- to identify and understand markers of the disease in body Path), an American non-profit organisation based in fluids, structural changes in the brain, and measures of Arizona. C-Path is part of a larger consortium called CAMD memory - the Coalition Against Major Diseases. This coalition The genome sequencing data will be available through the includes pharmaceutical companies, academic Global Alzheimer's Association Interactive Network institutions, government agencies and patient groups. (GAAIN), a planned massive network of Alzheimer's The simulated trials of the new tool are based on data disease research data made available by the world's from Alzheimer's disease patients who have participated foremost Alzheimer's researchers from their own in previous trials. These data were provided by laboratories. pharmaceutical companies on an anonymous basis. GAAIN is an international database framework already in Dr. Martha Brumfield, President and CEO of C-Path, said: use by thousands of scientists and local computational "The regulatory decisions on this tool exemplify how C- facilities in North America and Europe. The network Path's efforts result in alignment between global makes research data available free-of-charge for regulatory agencies when based on consensus science and searching, downloading, and processing across a cloud- supporting data; an alignment that can result in greater based, grid-network infrastructure accessible anywhere efficiency in drug development. This could not have been through Internet access. accomplished by any one entity working in isolation.” Dr. Maria Carrillo, a Vice President of the American Jean Georges, Executive Director of Alzheimer Europe, Alzheimer's Association, said: "The Alzheimer's attended the EMA review meeting when the simulation Association is committed to creating open access to tool was presented by representatives of C-Path and the research data, and we believe GAAIN will transform how CAMD on 3 June 2013. neuroscience data is shared and accessed by scientists throughout the world. http://c-path.org/AD-clinical-trial-simulation-tool.cfm

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"By fostering a higher level of global data sharing, GAAIN 17 July: CHF5074 improves cognition in people will accelerate investigation and discovery in Alzheimer's with MCI through a system comparable to a search engine like Google or Bing for relevant data." A trial of a neuroinflammatory inhibitor called CHF5074 has shown improved cognition in people with MCI. This presentation was made at the 2013 AAIC Conference in Boston. CHF5074 is a microglial modulator, which means that it changes the behaviour of microglial cells. These cells 15 July: Fronto-temporal dementia causes loss of operate in the brain and spine as the main line of immune emotion memory defence. For example, they help to relieve the effects of inflammation and also protect sensitive tissues. A study by researchers at Neuroscience Research Australia (NeuRA) showed that fronto-temporal dementia However, it is thought that Alzheimer's disease plaque (FTD) causes the loss of emotions from peoples' causes microglial cells to attack healthy neurons and memories. FTD affects the frontal and temporal lobes of tissues as well. CHF5074 acts to block this destructive the brain and people with the condition often have behaviour. difficulties with understanding and expressing emotion. The trial conducted by Chiesi Pharmaceuticals (Italy) The research team discovered that the brain's involved 74 people in three cohorts that took different orbitofrontal cortex region plays a key role in linking doses of the drug over 90 weeks. An interim analysis of 27 emotion and memories. Their research group consisted of people at week 88 showed statistically significant, dose- 34 people with FTD, 10 with Alzheimer's disease and 15 dependent improvements in participants' cognitive healthy controls subjects. They were shown images that abilities. Study participants who carried one or two copies prompt an emotional reaction in healthy people and then of the ApoE4 gene, which increases the risk of tested on their memories of the images. Alzheimer's, performed significantly better than non- carriers on two of the cognitive tests. The healthy controls and people with Alzheimer's disease remembered more emotional than neutral images, These results were presented at the 2013 AAIC showing the interaction between emotion and memory Conference in Boston. for true recognition. This emotional enhancement effect was notably absent in the FTD patients. 17 July: MK-8931 lowers beta amyloid in mild to moderate Alzheimer's disease The study's lead author was Associate Professor Olivier Piguet, a clinical neuropsychologist at NeuRA. He said: A Merck trial of a BACE1 inhibitor called MK-8931 found "Up until now, we knew that emotional memories were that the drug significantly lowered beta amyloid in the supported by the amygdala, a brain region also involved cerebrospinal fluid (CSF) of people with mild to moderate with emotion regulation. This study is the first to Alzheimer's disease. demonstrate the involvement of the orbitofrontal cortex BACE1 inhibitors work by blocking the activity of beta- in this process. This is an important development in how secretase (BACE1), one of two enzymes that produce beta we understand the relations between emotions and amyloid by breaking down its parent molecule - known as memory and the disturbance of the emotional system in amyloid precursor protein (APP). this type of dementia."

http://brain.oxfordjournals.org/content/early/2013/07/08/brain.awt185 The trial was led by Prof Mark Forman, a Neuropathologist at the University of Pennsylvania's 16 July: Diabetes drug could reduce the risk of School of Medicine. Participants received varying doses of developing dementia the drug daily for seven days. Beta amyloid levels were measured in CSF obtained by lumbar puncture over 36 A recent study found that the drug metformin could cut hours following the final dose. the risk of developing dementia by 20%. This drug is in common use to treat type 2 diabetes. Results showed a significantly decrease in CSF beta amyloid in people with mild to moderate Alzheimer's The study was conducted by scientists at Kaiser disease in a dose-dependent fashion; at the highest dose, Permanante, a non-profit medical group based in the average reduction from baseline was more than 80%. California. They examined the records of nearly 15,000 people aged over 55 with type 2 diabetes who took These results were presented at the 2013 AAIC metformin over five years. The results showed that these Conference in Boston. people had 20% less risk of developing dementia in old age. 17 July: A new Phase 3 clinical trial aims to delay MCI onset Clinical trials are now underway to investigate the use of metformin as a therapy for both dementia and mild A new Phase 3 trial will begin in 2013 to investigate the cognitive impairment. effects of pioglitazone, an existing diabetes drug, on cognitively normal people with genetic risk variations. These results were presented at the 2013 AAIC Conference in Boston. The study will take place in various sites in the US, Europe, Australia and Russia. Participants will be cognitively normal but will carry risk variations in the APOE and TOMM40 genes that are associated with an increased risk of earlier onset of Alzheimer's disease. The trial will be led

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by Dr. Kathleen Welsh-Bohmer, Professor of Psychiatry 22 July: Study shows an inverse relationship and Behavioral Sciences at Duke University Medical between AD and cancer Center. A new Italian study suggests that people with Alzheimer's This trial will also apply and attempt to validate the new disease have a lower risk of cancer than other elderly NIA/Alzheimer's Association diagnostic criteria for MCI adults. The study also found that older adults with cancer due to Alzheimer's, see link below. This includes the use are less likely to develop Alzheimer's disease. of a set of cognitive tests that would work effectively in all study sites around the globe. The cohort study was led by Dr. Massimo Musicco, MD, at the Italian National Institute of Biomedical Technologies in In Europe, pioglitazone is marketed by Takeda as Actos Milan. It identified a number of genes that affect both and Glustin for the treatment of type 2 diabetes. In earlier neurology and cancer growth - as well as how the two are human studies it was associated with decreased markers connected - which may explain the inverse link between of brain inflammation. the diseases. This presentation was made at the 2013 AAIC Conference The researchers tracked new cancer and Alzheimer's in Boston. diagnoses among 204,000 people age 60 and older living www.alzheimersanddementia.com/article/S1552-5260(11)00104-X/abstract in northern Italy. Between 2004 and 2009, just over 21,000 of them were diagnosed with cancer and close to 17 July: PET scans track the spread of tau in live 3,000 with Alzheimer's disease. A further 161 people were AD patients diagnosed with both diseases. Japanese researchers have demonstrated a new way of The research team calculated that 246 cases of identifying the tau protein in live people with varying Alzheimer's disease would be expected in people with degrees of Alzheimer's disease. cancer, while 281 cases of cancer would be predicted among those with Alzheimer's disease. The lower rate The research team from Japan's National Institute of means that people with cancer were 35% less likely to Radiological Sciences carried out PET scans on people with develop Alzheimer's disease than other adults and those Alzheimer's disease and healthy controls of the same age. with Alzheimer's disease had a 43% lower risk of cancer. Before the scans, they were injected in turn with [C¹¹] PBB3 - an agent that highlights the tau protein - and [¹¹C] Dr. Musicco said: "Cancer may be conceptualized as a high PIB, which binds to beta amyloid. tendency of cells to reproduce, which is so high that it is no longer controlled. Alzheimer's disease is exactly the The PET images revealed high levels of [C¹¹] PBB3 in reverse. It's a sort of incapacity of neuron cells to different areas of the brain to [¹¹C] PIB. The tau-binding reproduce. agent spread to large areas of the brain in those with Alzheimer's disease; the area covered and degree of "Cancer and Alzheimer's have been viewed by researchers concentration correlated with the severity of the disease. as completely separate. Some of the knowledge that we have on cancer can be used for a better understanding of These results were presented at the 2013 AAIC what happens when a person has Alzheimer's disease, Conference in Boston. and vice versa."

18 July: Early dementia diagnosis enables better www.neurology.org/content/early/2013/07/10/WNL.0b013e31829c5ec1.sho quality of life rt?sid=51f49113-ef17-4cbc-881d-8027409717ff A study from the University of Eastern Finland (UEF) 22 July: Later retirement may help prevent shows that people with dementia can manage their daily dementia activities for longer if diagnosis is made and treatment A new French cohort study shows that people who delay begun at a very early stage of the disease. These factors retirement are at less risk of developing dementia. “For also decrease their risk of developing psychological and each additional year of work, the risk of getting dementia behavioural symptoms. is reduced by 3.2%.” said Dr. Carole Dufouil, an The study was led by Ilona Hallikainen, psychologist, and epidemiologist at INSERM, France's public health research Tuomo Hänninen, neuropsychologist at UEF. They agency. followed people with Alzheimer's disease over three Dr. Dufouil headed the research team that examined the years. The participants were diagnosed either at the very health records of some 430,000 workers. These people mild or mild phase of the disease and were treated within had been retired for an average of 12 years and were at the standard Finnish health care system. average age 74. This study also established the suitability of "The Nearly 3% of them had developed dementia, but the risk Consortium to Establish a Registry for Alzheimer's Disease lessened with each year of age at retirement. Someone Neuropsychological Battery" (CERAD-NB) total score for who retired at 65 had about 15% lower risk of developing monitoring Alzheimer's disease progression in early- dementia compared to someone retiring at 60. diagnosed medicated patients. To rule out the possibility that mental decline may have These results were presented at the 2013 AAIC led people to early retirement, the team eliminated Conference in Boston. people who developed dementia within five and ten years http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid= of retirement. The trend did not change, suggesting that 8948242

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work was having an effect on cognition, rather than the finding of the study is that an oversupply of insulin stops other way around. the absorption. Dr. Dufouil concluded that people should work as long as The study team was led by Dr. Maurice Curtis, Senior they want, because it may have health benefits. Lecturer at Auckland's University Centre for Brain Research in New Zealand. The researchers are now testing These results were presented at the 2013 AAIC new drug compounds that target how polysialic acid is conference in Boston. removed from the cell, in the hope of improving neuron 26 July: Excessive iron may be a risk factor for connectivity. Alzheimer's disease The Gus Fisher Postdoctoral Fellowship, the Auckland Medical Research Foundation and the Manchester Trust A new study from UCLA suggests that iron accumulation were the main sponsors of this research work. may contribute to the formation of plaques in Alzheimer's disease. http://onlinelibrary.wiley.com/doi/10.1111/jnc.12363/abstract Researchers led by Dr. George Bartzokis, Professor of 29 July: Scientists reverse age-related memory loss Psychiatry at UCLA, compared the hippocampus and in mice thalamus brain areas in a group of 31 people with Alzheimer's disease and 68 controls. Using MRI scans, An American research team has successfully reversed they found that the hippocampi of people with the memory loss in mice by modulating the activity of the disease - known to suffer damage early in the disease - RbAp48 protein. showed an elevated iron presence while their thalami did The researchers found that when they suppressed the not. The thalamus is usually affected at a later stage of protein in the brains of healthy young mice, they the disease. developed memory loss consistent with older age. When Dr. Bartzokis attributes this to the activity of myelin, an the suppression was turned off, their memories returned iron-rich tissue that coats nerve fibres in the brain. When to normal. In another experiment, the researchers myelin is destroyed, it causes disruption in the increased the amount of protein in the brains of old mice. communication between neurons and promotes the In memory tests, these rodents then performed as well as build-up of plaques. In turn, the plaques destroy more and young mice. more myelin, leading to cell death and Alzheimer's These results provide more evidence that age-related disease. memory loss and Alzheimer's disease are two distinct He said: "It is difficult to measure iron in tissue when the conditions. In other words, a person that is experiencing tissue is already damaged. But the MRI technology we memory loss does not necessarily have dementia. used in this study allowed us to determine that the The team was led by Dr. Kandel, a Neuropsychiatrist at increase in iron is occurring together with the tissue Columbia University Medical Centre in New York. He said: damage. We found that the amount of iron is increased in “The fact that we were able to reverse age-related the hippocampus and is associated with tissue damage in memory loss in mice is very encouraging. Of course, it’s patients with Alzheimer's but not in the healthy older possible that other changes contribute to this form of individuals - or in the thalamus. So the results suggest that memory loss. But at the very least, it shows this protein is iron accumulation may indeed contribute to the cause of a major factor.” Alzheimer's disease." http://stm.sciencemag.org/content/5/200/200ra115.abstract?sid=1fb5ec5a- www.j-alz.com/node/308 6cf1-4a78-a9b0-96cf9e421a35 27 July: Excess insulin blocks stem cell movement 29 July: New blood test uses microRNA to identify and growth dementia A new study shows how excess insulin prevents stem cells A German-American research team has developed a blood from becoming neurons. This may explain why there is test that may identify new AD biomarkers using less plasticity in brains affected by Parkinson's and microRNAs or fragments of genetic code. Alzheimer's disease. Plasticity is the ability of synapses to strengthen or weaken over time in response to more or The researchers analysed a panel of 12 microRNAs from less activity. blood samples of 48 people with Alzheimer's disease and 22 healthy controls and recorded the signature, or distinct A stem cell in the brain is an immature neuron that must level, of each microRNA fragment in the Alzheimer group. migrate from its birthplace to a specific place where it will connect with other neurons and become an adult neuron Then they repeated the procedure with a larger and itself. It is coated with a special slippery molecule different group that included people with conditions (polysialic acid) that allows it to reach that destination other than Alzheimer's as well as controls. In this group, quickly. Once there, the slippery coating is absorbed, the the microRNA signature identified the people with stem cell is locked in place and it can begin connecting to Alzheimer's but also those with other conditions. nearby cells. For example, the signature was more than 95% accurate One finding of this study is that a healthy cell will re- in differentiating controls from people with schizophrenia, absorb the slippery molecules. However, this does not depression and bipolar conditions. It was significantly less happen in Alzheimer's and Parkinson's brains. The other accurate (around 82%) in differentiating patients with mild cognitive impairment, Parkinson’s disease and

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multiple sclerosis. The signature differentiated between Prof Patrick Fraering, Chair of Neuroscience at EPFL, said: Alzheimer’s and other neurodegenerative disorders with "Scientists have been trying to target gamma secretase to an accuracy of about 75%. treat Alzheimer's for over a decade. Our work suggests that next-generation molecules, by modulating rather This study was co-led by Dr. Eckart Meese and Dr. than inhibiting the enzyme, could have few, if any, side- Andreas Keller, both from Saarland University. The other effects. It is tremendously encouraging." researchers are from the Universities of Berlin, Erlangen and Heidelberg, the American Scripps Research Institute www.nature.com/ncomms/2013/130802/ncomms3246/full/ncomms3246.ht and Siemens Healthcare. ml

http://genomebiology.com/2013/14/7/R78/abstract 2 August: Blood pressure fluctuations may cause cognitive decline A new study shows that large fluctuations in blood pressure may be a risk factor for cognitive impairment.

www.alzheimer-europe.org/Donation The PROSPER (PROspective Study of Pravastatin in the Elderly at Risk) study was a collaboration between 2 August: EMA issues draft guidelines for ALS researchers in University College Cork in Ireland, the treatment University of Glasgow in Scotland and Leiden University Medical Center (LUMC) in the Netherlands. The European Medicines Agency has released a draft guideline on the clinical investigation of medicines for the 5,461 participants of average age 75.3 with a high risk of treatment of amyotrophic lateral sclerosis (ALS) for a six- cardiovascular disease had their blood pressure measured month public consultation. every three months over 3.2 years. The participants took tests for selective attention, processing speed and ALS, often referred to as Lou Gehrig's disease, is a immediate and delayed memory. A subset of 553 people progressive neurodegenerative disease that affects nerve also had MRI scans. cells in the brain and the spinal cord. Most therapeutic options for ALS target the symptoms of the disease. There The researchers were led by Dr. Simon Mooijaart from are currently no medicines that slow or halt the LUMC. They found that large swings in systolic and progression of the disease. diastolic pressure were linked to lower hippocampal volume and high diastolic differences were also The document focuses on the design of studies for associated with cerebral bleeding. These results suggest medicines that have an impact on the course of the that variable blood pressure may disrupt the regular disease (disease-modifying treatments) as well as blood flow to the brain, leading to an eventual loss of medicines that treat the symptoms of ALS. Guidance is cognitive performance. provided on the choice of meaningful outcome parameters used in studies and the clinical relevance of www.bmj.com/content/347/bmj.f4600 functional tests of disability, including motor- and respiratory-function tests and their relationship to Dementia in Society survival. 7 July: UK Health Secretary predicts a dementia Comments should be made using the submission form cure by 2020 and sent no later than 31 January 2014 to [email protected] UK Heath Secretary Jeremy Hunt has predicted that drugs to halt or cure dementia will be available by 2020. He said www.ema.europa.eu/docs/en_GB/document_library/Scientific_guideline/20 13/07/WC500147005.pdf this would be the “medical equivalent of the invention of the internet in terms of its significance”. 2 August: Two new drugs inhibit plaque formation According to Mr Hunt, DNA mapping will be at the Swiss researchers from the Ecole Polytechnique Fédérale forefront of the effort, as it could unlock a “treasure de Lausanne (EPFL) have demonstrated two new trove” of information that would help to fight dementia. compounds that prevent the build-up of beta amyloid He added that Britain plans to be the first country in the plaque. world to map the personal DNA code (genome) of up to 100,000 people. The new compounds, which are not named, change the behaviour of the gamma secretase enzyme. This enzyme Jeremy Hughes, chief executive of the Alzheimer's Society, seeks out and cuts the Alzheimer Precursor Protein (APP) said: “We need an all-out fightback from Government, into smaller pieces, which then go on to become plaque. industry and organisations like the Alzheimer's Society to APP can be cut in several different places, producing find a cure. There are currently more trials going on into amyloid pieces of varying lengths. Only the longer forms hay fever than into some of the most common forms of carry the risk of clumping into plaques. The new drugs dementia. It's not just about drug companies developing cause gamma secretase to cut APP in a different place, new medications from scratch. producing shorter pieces which cannot form into plaques. “Studies we're funding show that drugs which are already Gamma secretase has been a research target for many licensed for other conditions may also treat dementia. If years, but trials where the enzyme activity was these are successful we could have them doubling as completely blocked returned harmful side effects. treatments for dementia within 10 years.”

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12 July: New study identifies risk factors for early 23 July: Three film finalists of LUX Prize 2013 are onset dementia unveiled A recent cohort study of young Swedish men has On 23 July, the names of the three finalists of the LUX identified nine risk factors for early onset dementia, i.e. Prize 2013 were revealed at the 10th edition of the Venice developing dementia before the age of 65. Days section of the Venice International Film Festival. Researchers at Sweden's Umea University examined the The movies Miele, The Broken Circle Breakdown and The records of 488,484 men of average age 18 who were Selfish Giant tackle very different themes in widely conscripted into military service between 1969 and 1979. varying ways: Among this group, 487 men were later diagnosed with early onset dementia at an average age of 54. Miele (Valeria Golino, France & Italy) The researchers were led by Dr. Peter Nordström, This film gives a delicate approach to a highly sensitive Professor of Geriatrics at Umea. They looked at nine risk issue which is challenging people all over Europe: how to factors for dementia, which together accounted for 68% alleviate the pain of others even when they take fatal of the 487 diagnoses: alcohol intoxication, stroke, use of decisions. antipsychotic drugs, depression, father's dementia, drugs Irene helps terminally ill people to die with dignity by intoxication other than alcohol, low cognitive function at giving them a drug. One day she supplies a new “client” conscription, low height at conscription and high systolic with a fatal dose, only to find out he’s perfectly healthy. blood pressure at conscription. Irene is determined not to be responsible for his suicide. Alcohol intoxication in late adolescence was by far the From this moment, Irene and Grimaldi are locked biggest single risk factor. Men who had at least two of the unwillingly in a tense and unusual relationship which will risk factors and were in the lowest third of the study change Irene’s life forever. participants for overall cognitive function had a 20-fold The Selfish Giant (Clio Barnard, UK) increased risk of developing early onset dementia. This is a contemporary fable about 14-year-old Arbor and The researchers concluded that the risk factors were his best friend Swifty. Excluded from school and outsiders multiplicative, most were potentially modifiable and most in their own community, the boys meet Kitten, a local could be traced to adolescence - suggesting excellent scrapman, and begin collecting scrap metal for him using opportunities for early prevention. a horse and cart. Swifty has a natural gift with horses and http://archinte.jamanetwork.com/article.aspx?articleid=1726998 Arbor has a business brain and a way with words – they make a good team. But when Arbor begins to emulate 16 July: Dementia rate drops in Denmark, England Kitten by becoming greedy and exploitative, tensions and Wales build, leading to a tragic event which transforms them all irrevocably. A new UK study has found that dementia rates among people 65 and older in England and Wales have dropped The Broken Circle Breakdown (Felix Van Groeningen, by 25% over the past two decades, from 8.3% to 6.2%. Belgium) Another study from Denmark showed that people in their The film is a love story between Elise and Didier. Their 90s who took a standard test of mental ability in 2010 happiness is complete after their little girl Maybelle is scored substantially better than people who had reached born. Unfortunately, Maybelle, at six years old, becomes their 90s a decade earlier. Nearly one-quarter of those seriously ill. Didier and Elise react in very different ways. assessed in 2010 scored at the highest level, representing But Maybelle does not leave them any choice. Didier and twice the rate of those tested in 1998. The percentage of Elise will have to fight for her together. severely impaired people fell from 22% to 17% in the same period. The winner of the LUX Prize will be chosen in December based on votes cast by MEPs. The prize will be officially These results indicate that dementia projection rates awarded at a formal sitting of the European Parliament seem to be decreasing, which is contrary to some with the film makers in attendance. forecasts of advocacy groups and public health officials. www.europarl.europa.eu/news/en/pressroom/content/20130723IPR17539/ Both studies showed that dementia rates decreased and html/Three-finalists-of-LUX-Prize-2013-unveiled mental acuity improved as the population grew healthier and better educated. Dementia rates are significantly New Publications & Resources lower in people with higher education and those who control their blood pressure and cholesterol. 27 May: WHO publishes Mental Health Action Plan These findings were welcomed by many dementia The World Health Organisation has released its Mental experts. There is general optimism that lower dementia Health Action Plan 2013-2020. projections will also apply to many other countries and The plan sets new several researchers have already called for further directions for mental studies. health including a www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)61570- central role for 6/abstract provision of www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)60777- community based care and a greater emphasis on human 1/abstract rights. It also introduces the notion of recovery and

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moving away from a pure medical model. Finally, it It reveals how in many Member States legal capacity can addresses income generation and education be restricted or removed under certain conditions. It also opportunities, housing and social services and other social shows that the ratification of the United Nations determinants of mental health in order to ensure a Convention on the Rights of Persons with Disabilities comprehensive response to mental health. (CRPD) leads to rapid and significant change. The action plan has four major objectives: The report is based on the experiences of interviewees who have had their legal capacity removed or restricted. 1. strengthen effective leadership and It highlights the obstacles many people with disabilities governance for mental health, face in securing equal enjoyment of their fundamental 2. provide comprehensive, integrated and rights. responsive mental health and social care http://fra.europa.eu/sites/default/files/legal-capacity-intellectual-disabilities- services in community-based settings, mental-health-problems.pdf 3. implement strategies for promotion and 21 August: New book explores activity planning in prevention in mental health, care homes 4. strengthen information systems, evidence and A new book called "Activities for Older research for mental health. People in Care Homes: A Handbook for Successful Activity Planning" has been The new action plan can be downloaded from the WHO released. It is intended for people who are website. involved in activity planning for older http://apps.who.int/gb/ebwha/pdf_files/WHA66/A66_R8-en.pdf people, including those with dementia, in www.who.int/mediacentre/news/releases/2013/world_health_report_20130 care homes. 815/en/index.html 18 July: EC releases social statistics pocketbook The book, written by Sarah Crockett, provides useful background information on dementia, the importance of On 18 July, the European Commission released a new activities and how to get to know residents through life publication called "European social statistics pocketbook story work. It addresses practical considerations such as 2013". The first edition of this pocketbook presents a how to assess a resident for suitable activities, activity comprehensive summary of social statistics available at planning, timetabling, budgeting and money-stretching, as Eurostat. It includes chapters on health & safety, well as how to enthuse residents and staff to join in and population, income & living conditions, social protection how to deal with resistance from colleagues. It also and the labour market. contains ideas and step-by-step instructions for activities such as arts and crafts, cooking, exercise, gardening, http://ec.europa.eu/health/reports/european/statistics/index_en.htm http://epp.eurostat.ec.europa.eu/cache/ITY_OFFPUB/KS-FP-13-001/EN/KS- meditation and music. FP-13-001-EN.PDF Sarah Crockett is a day care officer in a UK care centre. 29 July: Alzheimer's Society releases a dementia She was previously a care assistant and activities guide for doctors coordinator at a care home in Gloucestershire. In 2008 she reached the finals of Barchester Health Care's Activity The UK Alzheimer's Society has published "The Dementia Provider of the Year Award, and in 2010 she won the Guide", a new booklet to help doctors provide support to National Association of Providers of Activities for Older people diagnosed with dementia. It offers advice to help People (NAPA) Activity Award. Her book can be obtained people come to terms with their diagnosis, plan ahead from Jessica Kingsley Publishers. and enable them to live well with the condition. www.jkp.com/catalogue/book/9781849054294 The guide, conceived specifically for GPs and psychiatrists, includes sections on the emotional impact of a diagnosis, Job opportunities drug treatments, signposting to available services and support for carers. 17 July: Dublin City University is hiring 3 Post Docs The Dementia Guide can be ordered free of charge on the The School of Nursing and Human Sciences at Dublin City Alzheimer's Society website. University is offering three Post Doc research opportunities on 2/3 year contracts. All three positions www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200455 will support the rollout of the new Irish dementia 9 August: EU releases report on legal incapacity of strategy. people with disabilities • Postdoctoral researcher / Research Assistant On 9 August, the EU Fundamental Rights Agency (FRA) • Practice Development Officer published a report underlining how legal incapacity can prevent people with disabilities from exercising choice • Postdoctoral researcher in Innovative Midlife and control over their lives, despite the promise of Intervention for Dementia Deterrence. current international standards. More information is available on the University's website. The report analyses current international and European www.dcu.ie/sites/default/files/hr/DEMENTIA%20HUB_Postdoc_RA.pdf legal standards and compares EU Member State laws in www.dcu.ie/sites/default/files/hr/DEMENTIA%20HUB_Practice%20Developm the area of legal capacity for people with intellectual ent%20Officer.pdf disabilities and people with mental health problems. www.dcu.ie/sites/default/files/hr/Nursing_Clarity_Postdoc.pdf

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AE Calendar 2013

Date Meeting AE Representative 2 September Meeting with the conference team in Malta (Malta) Gwladys 11 September EMIF project meeting (Brussels, Belgium) Alex 16-18 September Meeting of World Health Organisation European Region (Izmir, Turkey) Jean 19 September EFPIA Think Tank (Brussels, Belgium) Annette Université d’été “Alzheimer, éthique et société 2013” organised by the Espace National de Réflexion 17-20 September Dianne Éthique sur la Maladie d’Alzheimer” (Lille, France) 25 September Roundtable discussion on the pharmaceutical sector organised by J&J (Brussels, Belgium) Annette 25 September Presentation at the Ambient Assisted Living Forum (Norrköping, Sweden) Dianne 25-26 September Patient and Consumer Working Party of the European Medicines (London, UK) Jean 3-4 October EMIF WP15 workshop (Brussels, Belgium) Alex Second meeting of the ethics working group on perceptions and the portrayal of dementia (Brussels, 4 October Dianne Belgium) Future Conferences

Date Meeting Place 19-20 September 2013 5th International conference: "Senior´s training and non-pharmacological interventions for Bratislava, Slovakia Alzheimer´s disease“, www.alzheimer.sk 21-26 September 2013 XXI World Congress of Neurology, www.oegnt.at Vienna, Austria 30 September- 1 October International Conference on Psychology, Autism and Alzheimer’s disease, San Antonio, Texas, USA www.omicsgroup.com/conferences/psychology-autism-alzheimers-2013/index.php 2-4 October 2013 9th Congress of EUGMS: Improving outcomes in geriatric medicine, www.eugms2013.it Venice, Italy 5-9 October 2013 26th ECNP (European College of Neuropsychopharmacology), www.ecnp-congress.eu Barcelona, Spain 10-12 October 2013 23rd Alzheimer Europe Conference: “Living well in a dementia-friendly society”, www.alzheimer- St. Julian’s, Malta europe.org/EN/Conferences 17-19 October 2013 CAG2013: Aging…from Cells to Society, http://cag2013.ca/prospectus Halifax, Canada 17-20 October 2013 8th International Congress on Vascular Dementia – ICVD 2013, www.kenes.com/icvd Athens, Greece 24-25 October 2013 Colloque Cesco 2013: Ensemble dans l’action: les outils en soutien aux personnes atteintes de la Montréal, Canada maladie d’Alzheimer, www.iugm.qc.ca/index.php/fr/prof/formationcontinue/colloque/289- cesco.html 25-27 October 2013 6th International Conference on Alzheimer's Disease and Associated Disorders in the Middle East, Istanbul, Turkey www.alzheimermiddleeastconference.org 14-16 November 2013 6th annual conference Clinical Trials for Alzheimer’s disease CtaD 2013, www.ctad-alzheimer.com San Diego, USA 11-14 December 2013 The 16th Asia Pacific regional Conference of Alzheimer’s disease international, www.aprc2013- Hong Kong & Macau, China hongkong-macau.com th 20-22 March 2014 58 Annual meeting of the German society for clinical neurophysiology and functional imaging Berlin, Germany (DGKN), www.dgkn-kongress.de 20-23 March 2014 30th International Congress of Clinical Neurophysiology of the IFCN (ICCN), www.iccn2014.de Berlin, Germany 26-29 March 2014 13th Int. Geneva/Springfield Symposium on Advances in Alzheimer Therapy, www.ad-springfield.com Geneva, Switzerland 8-11 May 2014 8th World Congress on Controversies in Neurology (CONy), http://www.comtecmed.com/cony/2014/ Berlin, Germany 5-9 July 2014 9th FENS Forum of Neuroscience, http://forum.fens.org/2014 Milan, Italy 22-24 October 2014 24th Alzheimer Europe Conference “Dignity and autonomy in dementia”, http://www.alzheimer- Glasgow, United Kingdom europe.org/Conferences th 23-25 October 2014 9 International Conference on Frontotemporal Dementias, www.ubccpd.ca Vancouver, Canada

Contact Alzheimer Europe: Alzheimer Europe, 145 route de Thionville, L-2611, Luxembourg [email protected], www.alzheimer-europe.org Alzheimer Europe Board Chairperson: Heike von Lützau-Hohlbein (Germany); Vice-Chairperson: Iva Holmerová (Czech Republic); Honorary Secretary: Charles Scerri (Malta); Honorary Treasurer: Maria do Rósario Zincke dos Reis (Portugal); Members: Patrick Maugard (France), Maurice O’Connell (Ireland), Sirpa Pietikäinen (Finland), Helga Rohra (Germany), Alicja Sadowska (Poland), Henry Simmons (UK - Scotland). Alzheimer Europe Staff Executive Director: Jean Georges; EU Public Affairs Officer: Annette Dumas; Administrative Assistant: Kate Ellis; Editor – Dementia in Europe Magazine: Julie Fraser; Information Officer: Dianne Gove; Conference and Event Coordinator: Gwladys Guillory; Communications Officer: Alex Teligadas; Administrative Assistant: Grazia Tomasini.

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The Alzheimer Europe newsletter arises from the 2013 Work Plan of Alzheimer Europe, which has received funding from the European Union in the framework of the Health Programme.

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NEWSLETTER September 2013

Tonio Borg, EU Commissioner for Highlights in this issue Editorial Health and Consumer Policy, also There is a published an article that pays 11 September: New clinical 12 tribute to the challenges faced by trial will test liraglutide in AD pleasant sense of anticipation in people with dementia and their 18 September: NIH approves 13 the office, as caregivers. funds for 3 AD clinical trials we're all quite 19 September: Françoise 2 As every year, we are very glad to keen to finally report on our members' World Grossetête praises the efforts reach Malta for of dementia carers Alzheimer's Day activities. Cyprus our flagship opened the country's first day care 19 September: ADI releases 14 event. At this time of year, we centre for people with dementia. World Alzheimer Report 2013 sometimes feel that preparations Greece held events during the 21 September: Tonio Borg 5 for the Conference will never end, entire month, including a novel salutes the courage of people but our efforts have paid off and demonstration of cognitive tests with dementia we are now as ready as can be. with members of the public. 21 September: World 7- We have also kept up our project Memory Walks were very popular Alzheimer's Day activities in 11 work, including meetings with again this year - particularly in Europe Mental Health Europe, EFPIA and Portugal, which saw simultaneous 26 September: EP committee 5 the European Medicines Agency. walks in seven cities. Slovenia approves Horizon 2020 There was an interesting preceded its Memory Walk with an conference of the WHO European Alzheimer Café meeting, while region and we met with colleagues Belgium organised a huge Alzheimer Café event featuring art from the ethics working group and the EMIF project. therapy sessions. In Italy, there were conferences, concerts and Two of our EWGPWD members award ceremonies, as well as a distinguished themselves in visit to the Vatican. TV viewers in September: Agnes Houston won a the Netherlands were treated to a Lifetime Award for her work with new documentary about dementia the Scottish Dementia Working and Norway launched a unique Group and Stig Atle Aavik was fundraising drive that featured a received by the King of Norway royal audience. ahead of a major fundraising drive for dementia. If you are attending Our deadline for this issue was Table of contents the Conference, you will soon quite tight, so we hope to continue our coverage of World Alzheimer's Editorial ...... 1 notice that the group members are active in many different - and Day next month. All WAD activities Alzheimer Europe ...... 2 sometimes surprising - activities. will also appear in a future issue of the Dementia in Europe magazine. AE Projects ...... 2 We are also pleased to report on European Alzheimer's Alliance...... 2 the actions of our European At the time of writing, Conference Alzheimer's Alliance members for registrations were still coming in Alzheimer Europe Networking ...... 3 World Alzheimer's Day: French and we now expect a total of 520 EU Developments ...... 4 MEP Françoise Grossetête, people. According to our sources, Chairperson of the Alliance, issued some very eager delegates have Members’ News ...... 6 a stirring message praising all already arrived on the sunny Policy watch ...... 11 those who voluntarily give of their island! We applaud their time and effort to support people enthusiasm and look forward to Science Watch ...... 11 with dementia and their joining them and the rest of our Dementia in Society ...... 13 caregivers. Meanwhile, MEP distinguished guests next week. Martina Anderson bravely took to New Publications & Resources...... 14 the rainy streets of her hometown AE Calendar 2013 ...... 15 in Northern Ireland to complete a Jean Georges ten kilometre Memory Walk, on Future Conferences ...... 15 Executive Director behalf of her mother who is living with dementia.

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NILVAD is conducting a Phase 3 clinical trial of Nilvadipine, Alzheimer Europe a hypertension drug, for mild to moderate Alzheimer’s 19 September: Agnes Houston wins Lifetime disease. The main focus of the first period of work was to develop the set-up framework so that the trial could Achievement award begin. Congratulations to Agnes Houston for This huge task was successfully achieved and recruitment winning the Lifetime Achievement began in April 2013. As of 30 June, a total of 25 people award at Scotland's Dementia Awards have begun the trial at eight sites. A total of 500 2013! participants in nine countries will take part in the double Agnes was cited for her work in the Scottish Dementia blind, placebo-controlled study. Working Group and honoured as a long-time campaigner If the NILVAD trial delivers a positive result there will be a on dementia rights and issues. significant impact from a treatment and quality of life She is also a Vice Chairperson of the European Working perspective for the 5 million Europeans who suffer from Group of People with Dementia (EWGPWD), which she Alzheimer’s disease. There will also be a considerable joined in 2012. socio-economic effect on the cost of care for people with Alzheimer's disease. All the members of the EWGPWD and the staff and Board of Alzheimer Europe are Another major aim of the NILVAD study is the creation of very pleased for Agnes - we a cross-national network in Europe, which could be used look forward to celebrating to conduct future AD clinical trials. The current trial will this achievement in Malta! also add to the existing body of information about Alzheimer's disease and will be another step forward www.ScotlandsDementiaAwards.org.uk towards developing an effective treatment for the AE Projects disease. The NILVAD project (2012-2017) has received support 1 September: EMIF launches project website from the European Commission’s Seventh Framework Programme. The EMIF (European Medical Information Framework) partners have www.nilvad.eu launched a website that provides information on the activities and European Alzheimer's Alliance progress of the project. 15 September: MEP Martina Anderson completes EMIF is a five year project that aims to improve access to 10K Memory Walk patient-level data by creating an environment that allows for efficient re-use of existing health data. A common Alzheimer Europe wishes to thank information framework will link up and facilitate access to Martina Anderson, MEP (UK) and diverse medical and research data sources. The project member of the European includes two research topics that will help guide the Alzheimer's Alliance, for her support development of the framework: the onset of Alzheimer’s as she completed a 10 kilometre disease and the metabolic complications of obesity. Memory Walk in her hometown of Derry, Northern Ireland. The Alzheimer's disease topic, known as EMIF-AD, aims to discover and validate biomarkers of AD onset in the Ms Anderson was accompanied by several family preclinical and prodromal phases and also during disease members in what she called the "best turn-out yet for the progression. This will help to identify high-risk individuals Memory Walk in Derry." They endured the rainy and will facilitate drug development and clinical trial conditions and completed the walk in support of her design. mother Betty, who has lived with Alzheimer's disease for nearly 14 years. Alzheimer Europe is a partner in the work packages "Sustainability and Outreach" and "Programme 19 September: MEP Grossetête issues a message Management and Dissemination". of hope on World Alzheimer's Day EMIF receives support from the Innovative Medicines On 19 September, Françoise Grossetête, Initiative Joint Undertaking (IMI-JU) under grant MEP (France) and Chair of the European agreement n. 115372. Alzheimer's Alliance, issued a statement www.emif.eu to mark World Alzheimer's Day. The following is a translation of the original 1 September: NILVAD reports on successful first French-language statement. period of project work More than seven million people are living with dementia The NILVAD team recently in Europe - including over 850,000 people in France - and submitted the first periodic these figures are expected to double within 20 years. report of the project to the There is no cure and the last seven years have seen no European Commission. The new medicines to halt the disease. report comprises all the deliverables and milestones of However, the European Union is making significant the first 18 months of the project. financial contributions and there is a continuing effort to

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foster collaboration among the best research minds and 21 September: MEP Griesbeck praises World assets in every European country. Alzheimer's Day activities The new EU research programme will have more than Nathalie Griesbeck, MEP (France) and EUR 80 billion at its disposal, of which over EUR 8.5 billion member of the European Alzheimer's may be available for research into Alzheimer's and other Alliance, expressed her support to the neurodegenerative diseases in the period 2014-2020. French Alzheimer's disease community If we hope to meet the mounting challenges of dementia with a post on her website. care, this type of initiative will have to become permanent She pointed out that World Alzheimer’s Day is an policy rather than a time-bound project. This situation opportunity to stand back and reflect on the evolution of applies to EU institutions and also to national this disease that affects some three million people in governments. France. This special day is also an opportunity to raise World Alzheimer's Day gives us the opportunity to express awareness about the support available to improve the our appreciation for the efforts of patient associations quality of life of the people with Alzheimer’s disease and and individual volunteers who strive to maintain and their carers. improve the quality of life of people with dementia and Ms Griesbeck gave particular praise to France Alzheimer their caregivers. These efforts are an essential part of the for the association's unflagging efforts to provide better fight against Alzheimer's disease and other forms of support for people with dementia - including the dementia. organisation of numerous events for World Alzheimer's As Chairperson of the European Alzheimer's Alliance, I call Day. All of these events help to raise awareness and on each and every individual to take a moment to think provide information to the public, but also serve as a call about this disease and its challenges and consequences. I for solidarity toward people with dementia and their also heartily applaud the work of all the individual carers. volunteers in all countries who are working together to www.nathalie-griesbeck.fr/2013/09/journee-mondiale-contre-la-maladie- raise awareness and increase our understanding of dalzheimer/#more-12028 Alzheimer's disease. 22 September: MEP Anja Weisgerber is elected to The original French-language version is available on Ms the German Parliament Grossetête's website. On 22 September, Anja Weisgerber, MEP www.francoise-grossetete.eu/spip.php?article1601 (Germany) and member of the European

Alzheimer's Alliance (EAA), was elected to the German Parliament and will therefore resign from the European Parliament. Ms Weisgerber joined the EAA in 2006, one of the very first MEPs to join the European Alzheimer’s Alliance. We www.alzheimer-europe.org/Donation wish her every success in her new position.

Alzheimer Europe Networking On 2 September, Annette met Stefanija Lukic Zlobec of the Slovenian Alzheimer Association (Brussels, Belgium). On 2 September, Gwladys attended a meeting with the AE Conference team (St Julian’s, Malta). On 11 September, Alex attended an EMIF project meeting (Brussels, Belgium). On 16-18 September, Jean attended the WHO Regional Committee for Europe meeting as part of the ADI delegation (Izmir, Turkey). On 17-20 September, Dianne attended the Université d’été “Alzheimer, éthique et société 2013” organised by the Espace National de Réflexion Éthique sur la Maladie d’Alzheimer” (Lille, France). On 19 September, Annette went to an EFPIA Think Tank session (Brussels, Belgium). On 25 September, Dianne attended a presentation at the Ambient Assisted Living Forum (Norrköping, Sweden). On 25 September, Annette participated in the roundtable discussion on the pharmaceutical sector organised by J&J (Brussels, Belgium). On 25-26 September, Jean attended the Patients’ and Consumers’ Working Party of the European Medicines Agency (London, UK). On 30 September, Annette met Yves Brand, Mental Health Europe, to discuss the European Joint Action on Mental Health (Brussels, Belgium). On 1 October, Annette attended the EPF official launch of its European elections political campaign (Brussels, Belgium).

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On 2 October, Jean participated in the Innovative Medicines Lunch in the European Parliament (Brussels, Belgium). On 3 October, Alex attended the EMIF WP15 workshop (Brussels, Belgium). On 4 October, Dianne participated in the second meeting of the ethics working group on perceptions and the portrayal of dementia (Brussels, Belgium).

Members of the European Alzheimer’s Alliance

Austria: Becker K. Heinz (EPP), Werthmann Angelika (NI). Belgium: Demesmaeker Mark (Greens/EFA), Ries Frédérique (ALDE), Staes Bart (Greens/EFA), Tarabella Marc (S&D). Bulgaria: Parvanova Antonyia (ALDE). Cyprus: Triantaphyllides Kyriacos (GUE-NGL). Czech Republic: Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP). Denmark: Christensen Ole (S&D), Rohde Jens (ALDE), Schaldemose Christel (S&D). Finland: Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli (ALDE), Pietikäinen Sirpa (EPP). France: Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise (EPP), Juvin Philippe (EPP), Morin-Chartier Elisabeth (EPP), Pargneaux Gilles (S&D). Germany: Niebler Angelika (EPP), Roth-Behrendt Dagmar (S&D), Ulmer Thomas (EPP). Greece: Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni (S&D), Kratsa-Tsagaropoulou Rodi (EPP). Ireland: Aylward Liam (ALDE), Childers Nessa (non-attached), Crowley Brian (ALDE), McGuiness Mairead (EPP), Mitchell Gay (EPP). Italy: Panzeri Pier Antonio (S&D), Toia Patrizia (S&D). Lithuania: Blinkeviciute Vilija (S&D). Luxembourg: Engel Frank (EPP), Lulling Astrid (EPP). Malta: Cuschieri Joseph (S&D). Netherlands: De Lange Esther (EPP), van Nistelrooij Lambert (EPP), Wortmann- Kool Corien (EPP). Poland: Łukacijewska Elżbieta (EPP). Portugal: Carvalho Maria da Graça (EPP), Coelho Carlos (EPP), Matias Marisa (GUE/NGL). Romania: Antonescu Elena Oana (EPP), Busoi Cristian (ALDE), Sârbu Daciana Octavia (S&D), Tanasescu Claudiu Ciprian (S&D). Slovakia: Mikolasik Miroslav (EPP), Zaborska Anna (EPP). Slovenia: Kleva Kekuš Mojca (S&D), Peterle Alozj (EPP). Spain: Badia i Cutchet Maria (S&D), Estaràs Ferragut Rosa (EPP). United Kingdom: Anderson Martina (GUE-NGL), Ashworth Richard (ECR), Hall Fiona (ALDE), McAvan Linda (S&D), McCarthy Arlene (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Taylor Keith (Greens/EFA), Vaughan Derek (S&D), Watson Graham (ALDE), Willmott Glenis (S&D), Yannakoudakis Marina (ECR).

EU Developments 13 September: Commission launches new innovation indicator 9 September: EP unveils its information campaign for the 2014 European elections On 13 September, DG Research, Innovation and Science launched a new innovation indicator. The "Indicator of On 9 September, the European Parliament unveiled its Innovation Output" measures the extent to which ideas information campaign for the European elections 2014 from innovative sectors are able to reach the market, thus with the slogan "This time it's different". providing better jobs and making Europe more The campaign logo, with the baseline competitive. “ACT.REACT.IMPACT.” stresses that EU voters can exercise The indicator was developed at the request of EU leaders their power, through the ballot box, to determine the to benchmark national innovation policies and shows that future shape of Europe. significant differences remain between EU countries. The campaign began on 10 September and will continue The novelty of the indicator is that it focuses on beyond the elections, until the newly-elected Parliament innovation output. It complements the Commission's in turn elects the next European Commission President. Innovation Union Scoreboard (IUS) and Summary The campaign will have four phases: Innovation Index (SII). These assess the innovation performance of Member States and the EU more widely, • This phase began with the presentation of the baseline “ACT.REACT.IMPACT.” It aims to explain the against a set of 24 innovation indicators including inputs, European Parliament’s new powers and their throughputs and outputs. implications for EU residents. http://europa.eu/rapid/press-release_IP-13-831_en.htm • The second phase will run from October 2013 to 16 September: WHO Europe will pursue a mental February 2014 and will highlight five key topics: the health action plan economy, jobs, quality of life, money and the EU in the world at a series of interactive events in European The WHO Regional cities. Committee for Europe - the • Phase three, the election campaign proper, starts in decision making body for the February 2014. It will focus on the 22-25 May election World Health Organization’s dates. These dates will be added to the logo as the European Region - held a elections draw near. meeting during 16-19 September in Izmir, Turkey. • After the elections, the final phase will focus on the The meeting was attended by more than 300 delegates newly-elected European Parliament, its election of from 51 Member States in the WHO European Region, the next European Commission President and the international partners and nongovernmental inauguration of the new Commission. organisations. Jean Georges, Executive Director of http://www.europarl.europa.eu/news/en/news- Alzheimer Europe, was present as part of the Alzheimer’s room/content/20130906IPR18827/html/European-Parliament-launches- information-campaign-towards-2014-elections Disease International (ADI) delegation.

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The main foci of the meeting were the WHO’s I am confident that Dementia will remain one of our top programmes on vaccination and prevention of health priorities for the decades to come and that, communicable diseases. However, there were also together, we will rise to its challenges. discussions about non-communicable diseases and the http://ec.europa.eu/commission_2010- European Mental Health Action Plan. 2014/borg/personally_speaking/index_en.htm The Member States agreed on a European mental health 26 September: Parliament committee approves action plan for 2014–2020, which will help countries Horizon 2020 and COSME programmes improve their populations’ mental well-being and reduce the burden of mental disorders. The plan has seven On 26 September, the Parliament’s Industry and Research interlinked objectives and proposes integrated action. Committee approved the Horizon 2020 research and innovation programme and also the COSME programme Sixty-third session of the WHO Regional Committee for Europe for SMEs. Both programmes aim to attract new 21 September: Tonio Borg salutes dementia participants, strengthen support for small firms and better patients and their carers control EU spending. Tonio Borg, EU Commissioner for Health The committee resolution states that a portion (EUR 817 and Consumer Policy, issued the following million) of the Horizon 2020 budget will be used to widen statement on World Alzheimer's Day: the group of researchers participating in the programme, by attracting new applicants or promoting networking of 21 September is World Alzheimer's Day. research institutions. Public-private partnerships will also On this occasion, I wish to pay tribute to be opened up to new members and an additional EUR 462 dementia patients and their caregivers, whose taxing million will fund measures to strengthen the role of journey deserves all our praise and support. science in society. Every 4 seconds, a new case of dementia is diagnosed At least 11% of the Horizon 2020 budget should go to somewhere around the world. In Europe alone, dementia small and medium sized enterprises (SMEs) and special affects six million people. And yet, dementia and its measures will ensure that calls for tenders are SME- countless sufferings are still vastly unknown. There is a friendly. tendency to associate dementia with recurrent memory loss only. However, there is much more to it. COSME (Competitiveness of Enterprises and small and medium-sized enterprises) is another programme Over time, people with dementia end up suffering approved by the Committee and is entirely dedicated to deterioration of all their cognitive functions: memory, SMEs. Bureaucracy will be reduced and 60% of its budget thinking, orientation, comprehension, calculation, will be earmarked for risk-capital or loan guarantees. learning capacity, language and judgment. This makes dementia one of the major factors of disability and The committee members also stepped up controls on EU dependency in older people, overwhelming their lives as funding for public-private-partnerships (PPPs) and made well as that of their caregivers to the point of social sure that all EU-funded scientific publications are exclusion. accessible to the public. They also agreed to provide the European Institute of Technology (EIT) its own budget of As the population ages, we expect dementia to affect 12 EUR 2.7 billion. million people by 2040. It is no wonder then that dementia and its main cause, Alzheimer's disease, rank at The final votes in the Parliament's plenary session and the the top of our public health agendas. Council of Ministers will take place once the EU's long- term budget has been approved. The budgets for the new To help EU Member States address dementia, in 2011 the programmes are expected to be EUR 77 billion for Horizon Commission launched a joint action - ALCOVE - to improve 2020 and EUR 2 billion for COSME for 2014-2020. knowledge on dementia, and to foster exchanges on how to preserve health, quality of life, autonomy and dignity of Six MEPs were involved in the committee negotiations, people living with dementia and their carers. Earlier this including two members of the European Alzheimer’s year, ALCOVE produced a set of recommendations to Alliance (EAA): health professionals and decision-makers in this regard. Maria Da Graça Carvalho (Portugal), EAA member There is cause for hope. Medical progress and the Jürgen Creutzmann (Germany) understanding of the brain are now well underway. However, much remains to be done at grass-root level. Christian Ehler (Germany) Raising awareness about dementia is necessary to give patients and their caregivers the support they need in Philippe Lamberts (Belgium) their everyday struggles. Teresa Riera Madurell (Spain) This is the purpose of national dementia action plans. Marisa Matias (Portugal), EAA member While eight Member States have already adopted their plans, nine more countries are working on theirs or have http://www.europarl.europa.eu/sides/getDoc.do?pubRef=- %2f%2fEP%2f%2fNONSGML%2bIM- committed to do so. I can only encourage the remaining PRESS%2b20130617IPR12353%2b0%2bDOC%2bPDF%2bV0%2f%2fEN Member States to follow suit. http://www.europarl.europa.eu/news/en/newsroom/content/20130617IPR12353/html/EU-programmes-for-research-and- small-firms-in-2014-2020-approved

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26 September: Final FP7 grant provides EUR 660 www.ema.europa.eu/ema/index.jsp?curl=pages/contacts/CHMP/people_listi ng_000032.jsp&mid=WC0b01ac0580028dd3 million for research 27 September: Competitiveness Council proposes On 26 September, the European Research Council nine new PPPs awarded over EUR 660 million to 284 senior research leaders. They will carry out their research in 18 different On 27 September, the Competitiveness Council held a countries across the European Research Area. With up to debate on the state of the Innovation Union strategy and EUR 3.5 million per grant, the funding will enable them to on steps towards the completion of a common European pursue their most ground-breaking ideas together with Research Area. their teams. The Council members took note of a presentation on a One particular project, led by Prof Sara Linse from Lund new generation of public and private partnerships (PPPs) University (Sweden) seeks to understand the molecular that will implement major elements of the Innovation mechanisms behind Alzheimer's disease. Prof Linse’s Union and other relevant EU strategies to stimulate the MAMBA project has received funding of EUR 2.6 million creation of growth and jobs. These PPPs will carry out and will conduct a very precise survey of all the molecular large-scale and long-term innovation activities under mechanisms through every step of the disease. Horizon 2020, the EU's next research framework programme. This was the last grant under the EU's Seventh Research Framework Programme (FP7). The next call will fall under The Council members proposed to set up five PPPs as Horizon 2020, the new Framework Programme. Joint Technology Initiatives in the fields of bio-based http://erc.europa.eu/sites/default/files/press_release/files/press_release_ad industries, aeronautics, electronics, fuel cells and g2013_results.pdf hydrogen and innovative medicines. They also proposed four new PPPs for research programmes jointly 26 September: EMA working parties elect new undertaken by member states with EU participation, in Chairpersons the areas of active and assisted living, clinical trials in African countries, metrology and research-performing On 26 September, the SMEs. Patients' and Consumers' Working http://www.consilium.europa.eu/uedocs/cms_Data/docs/pressdata/en/intm Party (PCWP) and the Healthcare Professionals' Working /138840.pdf Party (HCPWP) of the European Medicines Agency (EMA) elected new co-Chairpersons. Members’ News David Haerry of the European AIDS Treatment Group 1 September: Slovenia's Spominčica relaunches (EATG) is the new co-chair of the PCWP. He has been a newsletter member of the PCWP since 2006 and has 15 years of experience as an advocate for HIV patients’ rights. He The Slovenian Alzheimer Association replaces Lise Murphy of the European Organisation for has re-launched its newsletter after a Rare Diseases (EURORDIS), who was co-Chair of the PCWP two year hiatus. The first new issue of since 2010. "Spominčica" - named after the association - had an initial print run of Gonzalo Calvo, Chair of the European Association for 18,000 copies with the aim of covering Clinical Pharmacology and Therapeutics (EACPT), is the the entire country. It introduces the new co-chair of the HCPWP. He is a consultant in clinical key players and activities of the pharmacology in Barcelona and has extensive experience association, including contact details for regional offices in medicines regulation, including nearly ten years as a all around the country. member of the Agency’s Committee for Medicinal Products for Human Use (CHMP). This is the first time that There are also articles that describe the symptoms of the HCPWP has elected a co-Chair, following its formal dementia and the involvement of Slovenian GPs with establishment last June. patients and their families. The first issue also features a comparison of temporary vs permanent care and a David Haerry and Gonzalo Calvo will co-Chair these column that provides advice on living with dementia every working parties for the next three years, together with day. Isabelle Moulon, Head of Patients and Healthcare Professionals at the EMA. Spominčica is available for download on the association's website. The main role of the PCWP and the HCPWP is to provide recommendations to the EMA and its scientific www.ljudmila.org/~zzppd/clanki/SPOMINCICANasaZena1.9.13.pdf committees on all matters of interest to either patients or 1 September: Alzheimer Nederland launches healthcare professionals in relation to medicinal products, Music Memories campaign as well as to monitor interactions between the Agency and patients, consumers and healthcare professionals. Everybody has unforgettable music memories. Music coupled with moments of Alzheimer Europe was accepted as a member of the happiness, sadness and other important PCWP on 26 July 2013 and will participate in the group's events in our lives. To raise awareness that work until 2016. Alzheimer’s disease can erase even these www.ema.europa.eu/ema/index.jsp?curl=pages/contacts/CHMP/people_listi most treasured memories, Alzheimer Nederland started a ng_000017.jsp&mid=WC0b01ac0580028d32 campaign to save those memories. Everybody can share

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their music memory on the website of a national radio was held under the auspices of Ms Andri Anastasiades, station and during some major public events. On Saturday First Lady of the Cypriot Republic. 19 and 26 October, the campaign comes to an end on national television. The two fundraising programs will be In her welcoming speech, she praised the devoted entirely to special stories, entertainment, achievements of all volunteers in the celebrities, music and - of course - memories. association. Cypriot President Nikos Anastasiadis, elected in February 2013, 1 September: German alliance campaigns for was also present at the event. Antigoni patient and carer rights Diakou, head of the Cyprus Alzheimer Association, invited the President to support the association in the fight The "Alliance for Good Care", which against Alzheimer's disease by promoting the Cyprus includes the German Alzheimer's society, National Dementia Plan. ran an e-card campaign on behalf of patients and carers during Germany's Musical entertainment was provided by a skilled trio that recent federal elections. played a set of old songs that are still beloved by all. This was symbolic of the long-term memories that people with The campaign urged citizens to send an e-card to the dementia often retain and also to illustrate the important heads of all the political parties in the German Parliament. role that music can play to improve their quality of life. This card outlined the goals and demands of the alliance, including personalised services for patients and better benefits and recognition for carers. Senders could also add personal testimonials and other comments. The alliance is composed of 30+ member associations and supporters, including associations representing the interests of people requiring care and family caregivers, welfare and social organisations, trade unions and professional associations. Together, they claim to represent 13.6 million individual members, including hundreds of thousands of people living in care, family 10 September: Alzheimer's Society disputes claims caregivers and professional caregivers. of dementia screening The ultimate aim of the alliance is to improve health care A recent article that through solidarity-based financing. More details about the appeared in the British e-card campaign can be seen on the alliance's website. Medical Journal caused some controversy in the UK. The www.buendnis-fuer-gute-pflege.de/die-kampagne/e-card/ article was entitled "Political drive to screen for pre- 5 September: Alzheimer Nederland hosts the dementia: not evidence based and ignores the harms of Alzheimer's Society diagnosis". The Alzheimer's Society strongly disputed the claims On 5-6 September, the strategic leadership team of the made in the article. Chief Executive Jeremy Hughes said: UK Alzheimer Society paid a two day visit to the "It's astounding to hear talk of an 'unwanted war' on Netherlands. During their stay they visited an "Odensa dementia when in fact we need nothing less than an all- house", which is an informal walk-in centre for people out fightback. We should be backing doctors up and down with dementia, their carers, friends and family where they the country who are helping ensure people with dementia can receive information about dementia and meet their are diagnosed." peers. The houses are open five days a week and are run by volunteers. In a press release, the charity pointed out that population screening does not exist in the UK and there are no plans The Alzheimer Society visitors also attended one of the to introduce it. The charity supports the current case 220 monthly Alzheimer Café meetings for patients and finding approach where clinicians ask those who are at a carers. On the second day, they visited the premises of higher risk of developing dementia if they are worried Alzheimer Nederland for meetings to plan future about their memory and then refer them for appropriate cooperation and a general exchange of knowledge. tests if they are concerned. Mr Hughes added: "There is surely no other condition where we could tolerate, let alone encourage people being kept in the dark, without treatments or support and unable to make decisions about their life."

www.bmj.com/content/347/bmj.f5125 www.alzheimers.org.uk/site/scripts/press_article.php?pressReleaseID=1017 9 September: Cyprus Alzheimer Association holds 12 September: Spain's CEAFA holds press musical memory evening conference for World Alzheimer's Day On 9 September, the Cyprus Alzheimer Association CEAFA, the Spanish federation for Alzheimer's disease and organised a musical event entitled “Memories” in the other dementias, held a press conference entitled gardens of the Presidential Palace in Nicosia. The event

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"Alzheimer - A Matter of State" with government officials 2012 and this successful cooperation has led to the on 12 September, ahead of World Alzheimer's Day. current national agreement. The main aims of the conference were to raise awareness Heike von Lützau-Hohlbein, First Chairperson of DAIzG, of the status of people with Alzheimer’s disease in Spain said: “This cooperation will enable us to combine our and to put forward a four-pillar programme to deal with experience deriving from self-help activities with the the challenges of dementia in the future. scientific expertise of the DZNE. The conference speakers were “This expertise will provide the opportunity to network Mr Koldo Aulestia, President of consultation services and make new insights from CEAFA, Ms Maria Angeles research more accessible to affected individuals. Aguado, an Executive from the Ultimately we aim to improve the information and care Agency for Elderly People and available to people with dementia.” Social Services and Mr José www.deutsche-alzheimer.de María Paz, Deputy Prosecutor www.dzne.de for the Protection and Defence of the Rights of Older Persons. 20 September: Royal reception for dementia fundraising in Norway Mr Aulestia pointed out that dementia affects 3.5 and 4.8 million people in Spain - including people living with the Since 1974, an annual telethon has been affliction and their families - and that this number will hosted by the Norwegian National likely double by 2030. He also explained the role of CEAFA Broadcaster (NRK) to benefit a cause and outlined why the country needs a sustainable and promoted by a chosen organisation. On comprehensive national dementia plan. 20 October 2013, 100,000 volunteers will visit every household in Norway to collect money for the Norwegian CEAFA's four-pillar programme consists Health Association and their work to improve the lives of of the following main axes: support for people with dementia. families, legal protection, health and training for health professionals His Majesty King Harald of Norway is the patron of this including caregivers. The programme year's national fundraising event. On 20 September, the has been developed over several years, together with King received a delegation from the association. The people with dementia and their families, health delegation included Stig-Atle Aavik (see picture), Norway’s professionals and other dementia experts. Mr Aulestia representative to the European Working Group of People said that CEAFA remains ready and willing to actively with Dementia, family carer Ann Iren Garmo Larsen and participate in any form of working group that will have a Wenche Frogn Sellæg, Chair of Norway’s Dementia Board. dementia strategy as its ultimate goal. The King was very interested to hear the viewpoints and Mr Paz acknowledged that people with dementia often experiences of his guests and his support will clearly be of face legal challenges, particularly with regard to advance great benefit to the telethon – particularly in raising directives. He said that these could only be overcome if public awareness of dementia through the national Spain were to introduce legislation that specifically media. addresses the needs of people with dementia. Unfortunately, support for such legislation is currently scarce due to lack of human and financial resources. Ms Maria Angeles Aguado praised CEAFA for its many years of work in helping people with dementia and noted the excellent relationship between the association and local and national government agencies. She looks forward to continuing this cooperation as the partners pursue their goal of developing a national dementia strategy in Spain. 19 September: German Alzheimer’s Association 21 September: Belgium's LINAL holds Alzheimer and DZNE join forces Café Day celebration The German Alzheimer’s Association (DAlzG) and DZNE The Belgian Ligue Nationale Alzheimer Liga (LINAL) held a (the German Center for Neurodegenerative Diseases) special Alzheimer Café Day in the centre of Brussels to have joined forces to develop joint information services commemorate World Alzheimer's Day. for people with dementia and their families all over The all-day event was very well attended Germany. and has been a LINAL staple for many DAlzG offers support and years. The Alzheimer Café Day is a day to assistance for people with share experiences, to bring back dementia and their families, memories and to acknowledge the while DZNE investigates the success of the Alzheimer Café meetings, causes of diseases of the nervous system and develops which continue to increase in popularity and growth. strategies for prevention, treatment and care. The This year, LINAL introduced art therapy as a new event partners have been working together on a local level since under the motto “Creativity and autonomy”. Two

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workshops, led by an art therapist, showed how people Ms Salvini Porro, along with colleagues from the Italian with dementia can express their creativity and increase Society for the study of dementias and the University of their quality of life. There was also an exhibition of art Milan, also presented awards to six young graduates in produced by people with dementia. These works will be medicine and clinical psychology for their outstanding printed on cards and sent all around the world as part of a theses relating to Alzheimer's disease. global campaign. This was followed by a screening of the video "Living with dementia, the Alzheimer Café" and a presentation on the basic concepts of the Cafés and related guidelines. The conference closed with a presentation by Marc Wortmann, Executive Director of ADI (Alzheimer's Disease International), who gave highlights of the newly released World Alzheimer Report 2013. Mr Wortmann pointed out that as the world population ages, the traditional system of “informal” care by family, friends, and community will not be sustainable. The new report predicts that the

number of dependent older people will rise from 101 21 September: Alzheimer Portugal holds seven million in 2010 to 277 million in 2050, an almost threefold Memory Walks on WAD increase. Alzheimer Portugal held Memory The conference attracted wide media coverage and was Walks in seven cities to celebrate attended by family members of people with dementia, World Alzheimer's Day, under the health professionals and members of the public who motto "Remember Yourself". wished to better understand the challenges of Alzheimer's disease. This is the third year that the association organises Memory Walks and they have grown in popularity each year. The walks took place in Beja, Funchal, Ilha Terceira, Matosinhos, Oeiras, Pombal and Vila do Bispo. In each location, staff from Alzheimer Portugal were on hand to inform participants that timely diagnoses and specialised services for people with dementia are still scarce realities in the country. The association also called attention to the importance of reducing the risk of 21 September: Cyprus opens first dementia day developing Alzheimer's disease or another form of care centre dementia. On 21 September, the Cyprus Alzheimer Association opened the country's first Day Care Centre for people with Alzheimer's disease in Limassol. The new facility was officially inaugurated by Mr Andreas Christou, mayor of Limassol while his Eminence Bishop of Limassol Mr Athanasios blessed the building.

The Day Care Centre will offer services such as non- 21 September: Federazione Alzheimer Italia holds pharmaceutical interventions, group activities and conference and award ceremonies on WAD support groups for caregivers and family members of On 21 September, people with dementia. Federazione Alzheimer Italia 21 September: Alzheimer Hellas fills September (FAI) held a conference with WAD events entitled "Alzheimer's disease: information about care, research and support" at the Palazzo Marino, seat of the The Greek Association of Alzheimer’s municipality of Milan. The conference commemorated Disease and Related Disorders World Alzheimer's Day and also the 20th anniversary of (Alzheimer Hellas) filled the month of FAI. September with events that were open to the public and free of charge to Pierfrancesco Majorino, Councilor of Social Affairs and commemorate World Alzheimer’s Day. Culture of Health welcomed the participants. Gabriella Salvini Porro, President of FAI and Francesco Brancati, The month started with an Awareness Week from 2-8 President of the National Association of Scientific Medical September in Neapolis, where the association manned a Media followed him. They delivered the journalism award stand that provided information about dementia to the for best coverage of Alzheimer's disease to the four public. This was followed by a photo exhibition entitled winners of the 2013 edition. "Memento" that took place between 11-20 September at

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a famous archaeological site. Three photographers Dr. Kogoj and all the other members of the association are displayed collections from a trip to India that had clear very pleased with the large turnout to the Memory Walk references to the function of memory “that comes from in support of people with dementia and their families. experience, facts and any human activity”. Alzheimer Hellas also operated a stand in central Thessaloniki during 16-21 September, where staff provided information and raised awareness about dementia and Alzheimer's disease. They also gave a demonstration of cognitive training with the use of tablet computers and distributed a short test to older members of the public. On World Alzheimer's Day, a chess tournament for players of all ages took place in a local college. The tournament was organised in collaboration with local chess clubs to demonstrate that chess and other mind games can reduce 21 September: Alzheimer Uniti Italy organises full the risk of dementia. The final activity was a Memory week of activities for World Alzheimer Day Walk on 23 September. This took place in central The week started on 18 September with a Thessaloniki and was followed by a presentation on the visit by people with Alzheimer’s disease, latest data about dementia. their families and all the staff of the Throughout the month, local and national radio and TV Association to the Wednesday audience stations aired special spots about the World Alzheimer's of Pope Francesco, who gave an address Day events and staff from Alzheimer Hellas participated in including a welcome to our very group! numerous press interviews. Friday 20 September was the occasion of our 15th Annual Alzheimer Convention at the Campidoglio in Rome entitled “Dementia within a welcoming community”. This year the new mayor of Rome, Ignazio Marino (a medical doctor), opened the day by saying that he gives his support to efforts to help people suffering from dementia. The presentations were on the subjects of new scientific research, dementia medications, technology, nutrition, problems of limited resources and palliative care. On Saturday 21 September, we had our stand in the beautiful piazza San Lorenzo in Lucina, where we gave out information to the public, with the usual accompanying entertainment by the Carabinieri Band.

To complete the busy week, we opened our 5th Alzheimer 21 September: Slovenian Memory Walk raises Café on Monday 23 September in the heart of Rome. awareness of dementia Slovenia's Spominčica organised a very popular Memory Walk to commemorate World Alzheimer's Day. A large number of people joined on the walking tours in various Slovenian cities. In the capital, the walk was held under the patronage of the Mayor of Ljubljana. He joined the walkers for the entire tour and also sponsored a reception for them at the town hall. Along the way, members of the association provided information about dementia and also distributed the new issue of the Spominčica newsletter, which was recently re-launched. The Memory Walk was preceded by an Alzheimer Café 23 September: Dutch documentary on dementia meeting, which took place on 20 September. This meeting airs on national TV featured a presentation by Dr. Ales Kogoj, President of Spominčica, who was also pleased to welcome several On 23 and 24 September, a new documentary entitled special guests. These included Professor Nino Mimica, DementieEnDan ("Dementia, and then…") aired on head of Croatia's Alzheimer's Disease Societies and national Dutch television. This beautiful and moving work Guillermo Nagore, the Spanish journalist who in 2012 is about living with dementia, including all the barriers but walked from Santiago de Compostela to Jerusalem in also the possibilities. order to raise awareness for Alzheimer's disease. The film was produced by Ireen Ditshuyzen and follows five people with dementia and their partners. We see the

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uncertainty after a brain scan that shows deterioration, to produce the neuroectoderm - the part of an embryo but also the triumph after running a half marathon. We that develops into the brain and spinal cord. see a pianist in ecstasy behind her piano and then her anxiety as she is admitted to a nursing home. This was placed in tiny drops of gel that provided a scaffold for the tissue to grow and then into a bath The broadcast was part of a week-long, national supplying nutrients and oxygen. As the cells grew, they "DementieEnDan" campaign that raised awareness about developed into separate regions of the brain. The Alzheimer's disease. Alzheimer Nederland was a partner organoids reached a maximum size of approximately four in this campaign. millimetres in two months and have survived for one year. www.dementieendan.nl Dr. Jürgen Knoblich, Deputy Director and Senior Scientist at IMBA, said: "What our organoids are good for is to Policy watch model development of the brain and to study anything that causes a defect in development. Ultimately we would 21 September: French Ministers announce update like to move towards more common disorders like on new neurodegenerative disease plan schizophrenia or autism. They typically manifest themselves only in adults, but it has been shown that the In a joint announcement, three underlying defects occur during the development of the French Ministers expressed their brain." support for people with dementia and their carers on World Dr. Paul Matthews, Professor of Clinical Neurosciences at Alzheimer’s Day. Marisol Touraine Imperial College, London, commented: "I think it's just (Social Affairs and Health Minister), Geneviève Fioraso mindboggling. The idea that we can take a cell from a skin (Minister for Higher Education and Research) and Michèle and turn it into, even though it's only the size of a pea, is Delaunay (Minister for the Elderly and Autonomy) also starting to look like a brain and starting to show some of provided an update on the progress of the new the behaviours of a tiny brain, I think is just extraordinary. “Neurodegenerative Plan”. This will be the continuation of Now it's not thinking, it's not communicating between the France’s pioneering Plan Alzheimer. areas in the way our brains do, but it gives us a real start

rd and this is going to be the kind of tool that helps us Following the evaluation of the 3 Plan Alzheimer (2008- understand many of the major developmental brain 2012) by Professors Joël Ankri and Christine Van disorders." Dr. Matthews was not involved in the study. Broeckhoven, four thematic working groups are being formed to identify the measures and actions of the new www.nature.com/nature/journal/v501/n7467/full/nature12517.html plan. The themes are: www.youtube.com/watch?v=ir0hETfH978 1) Improve diagnosis and early detection of the disease 1 September: Dr. Giovanni Frisoni, new Professor of Clinical Neuroscience HUG 2) Respond to patients’ needs at each stage of the disease and in the entire country On 1 September, Dr. Giovanni Frisoni took up the chair of full 3) Increase awareness and conform to the highest Professor of Clinical Neuroscience standards of ethics, quality and welfare at Geneva University Hospitals (HUG) in Switzerland, where he will 4) Increase the quantity and quality of research. lead the local Memory Clinic. The working groups will co-Chaired by the three Ministers He will continue to work as Deputy Scientific Director of and various other stakeholders, including patient IRCCS Fatebenefratelli on a part-time basis for at least the organisations, will also be involved. France Alzheimer has coming 2 years. already contributed 15 recommendations that the organisation would like to see in the new plan. Dr. Frisoni has been a keynote speaker at several Alzheimer Europe Conferences and is a frequent The new Neurodegenerative plan is expected to be contributor to our newsletter and Dementia in Europe finalised in the first quarter of 2014. magazine. Alzheimer Europe wishes him all the best in his http://www.social-sante.gouv.fr/actualite-presse,42/communiques,2322/la- new position. journee-mondiale-de-la-maladie,16249.html 2 September: Protein blocker restores memories Science Watch in mouse models 28 August: Scientists develop "miniature brains" Scientists at Yale School of Medicine have shown that from stem cells blocking the activity of the mGluR5 protein with an existing drug can restore memory in mouse models. A team of Austrian scientists has grown a number of "miniature brains" in a laboratory. These cerebral This protein is one link of a chain of various proteins that organoids are roughly comparable to the brain build up in the brain and eventually interfere with development of a nine-week old human foetus but are cognitive function. Researchers believe that blocking incapable of thought. mGluR5 may break the entire chain and thus prevent further buildup. The researchers from the Institute of Molecular Biotechnology of the Austrian Academy of Sciences The drug in question is similar to one being developed to (IMBA) used either embryonic stem cells or adult skin cells treat Fragile X syndrome. The study was led by Dr.

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Stephen Strittmatter, Professor of Neurology and planners of dementia services should anticipate high Neurobiology at Yale. He said: “What is very exciting is levels of need. that of all the links in this molecular chain, this is the protein that may be most easily targeted by drugs. This “Some aspects of clinical management of urinary gives us strong hope that we can find a drug that will work incontinence are different for patients with dementia to lessen the burden of Alzheimer’s.” compared with those without. Further study is required to understand the clinical reasoning of health care www.cell.com/neuron/abstract/S0896-6273(13)00552-7 practitioners providing care for this population, 2 September: HSPG receptors cause transmission particularly in the use of indwelling catheters, given the known risks.” of faulty tau proteins www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.100 Scientists at the Washington University School of 1505 Medicine (WU) in St. Louis (Missouri) have found that HSPG receptors are responsible for allowing misfolded tau 11 September: New clinical trial of liraglutide for proteins to move between cells. When these receptors Alzheimer's disease were disabled, the tau proteins could no longer spread Imperial College in London has announced a new clinical and form into tangles. trial of liraglutide, an existing drug in use for treating HSPGs, or heparan sulfate proteoglycans, are diabetes. carbohydrate molecules that bind themselves to proteins Researchers at Lancaster University (UK) recently showed and regulate activities such as blood coagulation and that liraglutide reduces the buildup of plaque in Alzheimer tumour metastasis. mouse models in an advanced stage of the disease. The In this case, the researchers showed that HSPGs are treated mice also performed better on object recognition essential for binding, internalising and spreading clumps tests. A previous study had shown improvements in mice of tau. When the HSPGs were genetically disabled or with early stages. chemically modified, clumps of tau could not enter cells, The trial, which will receive funding from the UK thus inhibiting the spread of misfolded tau. This was also Alzheimer's Society, will recruit up to 200 participants and the case for corrupted forms of alpha-synuclein, a protein will be led by Dr. Paul Edison, a Clinical Senior Lecturer in linked to Parkinson's disease. Neuroscience at Imperial College. Dr. Marc Diamond, senior author and Professor of Dr. Doug Brown, director of research and development at Neurology at WU, said: "Many of the enzymes that create Alzheimer’s Society, said: “Our focus on re-purposing HSPGs or otherwise help them function are good targets existing drugs as dementia treatments is an incredibly for drug treatments. We ultimately should be able to hit exciting way of bringing new treatments closer. This these enzymes with drugs and potentially disrupt several exciting study suggests that one of these drugs can neurodegenerative conditions. reverse the biological causes of Alzheimer’s even in the "We're now sorting through about 15 genes to determine late stages and demonstrates we’re on the right track. which are the most essential for HSPGs' interaction with We’re now funding a major new trial to bring it closer to a tau. That will tell us which proteins to target with new position where it can be improving the lives of people drug treatments." with dementia."

www.pnas.org/content/110/33/E3138.abstract?sid=3e9bfd41-58f9-4a88- Liraglutide is a glucagon-like peptide-1 agonist (GLP-1 b4cf-3204031a7948 agonist) developed by Novo Nordisk for the treatment of 10 September: Incontinence is more likely in type 2 diabetes. It has been marketed in Europe as Victoza since 2009. people with dementia www.sciencedirect.com/science/article/pii/S0028390813003626 A new cohort study indicates that incontinence is more prevalent in people with dementia. The study also showed that people with dementia and incontinence were more likely to receive incontinence medications and indwelling catheters. www.alzheimer-europe.org/Donation The study was made by scientists at Kingston University and St George’s University of London, who analysed 16 September: Beta-amyloid fibrils are distinct for 250,000 primary care records. They found that people each person with dementia experience three times the rate of A team of scientists have isolated distinct molecular diagnosis for urinary incontinence and more than four structures of beta-amyloid fibrils in the brains of various times the rate of fecal incontinence than those without people with Alzheimer's disease at different stages of the dementia. disease. These may assist in the development of Robert Grant, lead author and Senior Lecturer in Health diagnostic imaging and also more patient-specific and Social Care Statistics in both universities, said: treatments. “Incontinence is a common problem for people living with The researchers from University Hospital Zürich and the dementia in the community. They need good quality Stanford University School of Medicine were funded by services, including advice and support for carers managing the American NIH. They extracted beta-amyloid fibril incontinence. With an ageing population, providers and fragments from the brain tissue of two patients with

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different clinical histories and degrees of brain damage. Solanezumab will also be tested in the Anti-Amyloid in They used these fragments to grow a large quantity of Asymptomatic Alzheimer’s Disease (A4) trial, where the fibrils in a dish. The results were that a single fibril drug will be administered to cognitively healthy people structure prevailed in the brain tissue of each patient, but with biomarker evidence of Alzheimer's disease. the molecular structures were different between the two patients. These results support three conclusions: For more details on these and other research projects that are receiving funding from the NIH, please consult • Fibrils in the brain may spread from a single site. the Alzheimer Research Forum website.

• Structural variations in the fibrils may correlate with www.alzforum.org/new/detail.asp?id=3597 variations in AD. 19 September: New scan technique shows tau in • Structure-specific amyloid imaging agents may be an important future goal. living humans Dr. Robert Tycko, senior study author and NIH researcher, A Japanese research team has developed a class of tau said: "This work represents the first detailed ligands called PBBs that are very effective in detecting tau characterization of the molecular structures of beta- tangles in PET scans of brains of living people. amyloid fibrils that develop in the brains of patients with Ligands are molecules that attach themselves to other Alzheimer's disease. molecules for a particular task. In this case, the new "This detailed structural model may be used to guide the complex molecules become visible in PET scans. They are development of chemical compounds that bind to these based on PBBs, or phenyl/pyridinyl-butadienyl- fibrils with high specificity for purposes of diagnostic benzothiazoles/benzothiazoliums. imaging, as well as compounds that inhibit fibril formation The scientists from the National Institute of Radiological for purposes of prevention or therapy." Sciences (NIRS) in Chiba specifically cited the ligand www.cell.com/abstract/S0092-8674(13)01029-5 [11C]PBB3 as a key player in creating a 3D picture of tau in the brain. 18 September: NIH approves new funding for AD clinical trials Dr. Makoto Higuchi, a researcher at NIRS, said: "Positron emission tomography images of tau accumulation provide On 18 September, the American National Institutes of robust information on brain regions developing or at risk Health (NIH) announced new funding of USD 45 million for tau-induced neuronal death." (EUR 33.3m) for Alzheimer's disease research. www.sciencedirect.com/science/article/pii/S089662731300799X The bulk of the funds will support therapeutic prevention 27 September: Two ADAM10 gene mutations trials in cognitively healthy populations at high risk of developing AD. Smaller awards will fund translational increase Aß load in mice research to identify new therapeutic targets by creating Researchers from Massachusetts General Hospital have network models of Alzheimer's disease. identified two mutations in the ADAM10 gene that The largest award of USD 33.2 million (EUR 24.5m) will increase the production and accumulation of beta partially fund a clinical trial that will be conducted by the amyloid in the brains of late-onset Alzheimer mouse Banner Alzheimer’s Institute in Phoenix, Arizona. This trial models. The mutations also inhibited growth of new will test whether an anti-amyloid therapy can slow neurons in the hippocampus. cognitive decline in 650 cognitively healthy people The research team was led by Dr. Richard Tanzi, Professor between 60 and 75 years old. All participants will have of Neurology at Massachusetts General. According to the two copies of the ApoE4 gene variant, which puts them at scientists, this is the second gene with a confirmed role in higher risk of developing Alzheimer's disease. late-onset Alzheimer's disease and the fifth gene overall This trial will be led by Dr. Eric Reiman, Professor of linked to the disease. Psychiatry at the University of Arizona and Dr. Pierre Dr. Tanzi said: "What we found regarding the many Tariot, Geriatric Psychiatrist and Director of the Banner effects of these two rare mutations in ADAM10 strongly Institute. They are in the process of selecting the suggests that diminished activity of this enzyme can cause pharmaceutical partner and the drug for the trial, which early-onset Alzheimer's disease, and these findings will start in early 2015. Banner is a non-profit health support ADAM10 as a promising therapeutic target for organisation that cooperates closely with the University. both treatment and prevention."

The Dominantly Inherited Alzheimer Network (DIAN) will www.cell.com/neuron/abstract/S0896-6273(13)00794-0 also receive funding. This involves a trial of gantenerumab and solanezumab in people who carry Alzheimer's disease Dementia in Society mutations and will also test other drugs in related biomarker studies. 19 September: Terry Pratchett chastens UK The four year trial is already recruiting participants and is government's dementia policy led by Dr. Randall Bateman, Professor of Neurology at Novelist Sir Terry Pratchett has accused Washington University in St. Louis, Missouri. DIAN is an the Government of "pussy footing" around international research partnership of 13 institutions in on dementia treatment and withholding Australia, Germany, the UK and the US that is vital research funds. investigating dominantly inherited Alzheimer’s disease. Writing in a blog entry on the UK

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Alzheimer's Research website, the famous author also introduces a new model for professionals who are helping said that the government was providing dementia people navigate this difficult chapter of their lives. research with "barely enough money to buy a middling Premier League striker". According to the author, most people with early dementia do not have access Terry Pratchett, aged 65, was diagnosed with a variant of to individualised interventions for Alzheimer’s disease called posterior cortical atrophy in education and support. This book shows 2007 and became a patron of Alzheimer’s Research UK in how this counselling model can 2008. He has become an ardent campaigner for higher empower the person to move towards awareness and more research for dementia. acceptance of the illness while learning to manage and adapt to it. Given the In his blog entry, he said that care services were forced to opportunity to express feelings and concerns, people can "paper over the cracks" of a lack of funds and that science gain valuable insights and the courage to acknowledge needs to deliver on its promises. their impairments while also focusing on their abilities. "If we’re serious about this thing, and want to match the The book also includes personal accounts of sessions fanfare with the funding, then more money needs to be between people with early dementia and their found down the back of David Cameron’s sofa." counsellors.

www.dementiablog.org/terry-pratchett-on-dementia/ "Counseling People with Early Stage Alzheimer’s: A Powerful Process of Transformation" is Ms Yale's second New Publications & Resources book. Her earlier work discussed the development of support groups for people with early-stage Alzheimer's 1 September: New MSc course in counselling and disease. Both are available for sale at the Health dementia care Professions Press website. The Association for www.healthpropress.com/store/yale-70071 Dementia Studies and 19 September: ADI releases World Alzheimer the Psychology Report 2013 Department at the University of Worcester (UK) have developed an MSc Alzheimer's Disease International (ADI) Counselling course. This is designed to give people the has released its annual World knowledge that underpins therapeutic counselling and Alzheimer Report 2013 entitled dementia care. "Journey of Caring: An analysis of long- term care for dementia". The course is open to those who have particular interest in counselling, for further development with a view to The report reveals that, as the world professional training in counselling or clinical psychology. population ages, the traditional system of “informal” care by family, friends, and community will It is also pertinent for those working in Health and Social require much greater support. Globally, 13% of people Care, including those with an interest in dementia care, aged 60 or over require long-term care. Between 2010 wishing to extend their knowledge and research base in and 2050, the total number of older people with care psychological approaches to care and psychological needs will nearly treble from 101 to 277 million. function. Long-term care is mainly about care for people with For more information, please contact Dr Peter Forster at dementia; around half of all older people who need [email protected] personal care have dementia, and 80% of older people in www.worcester.ac.uk/courses/counselling-msc.html nursing homes are living with dementia. The worldwide cost of dementia care is currently over USD 600 billion 1 September: EC seeks entries for 2013 EU Health (EUR 444b), or around 1% of global GDP. Prize for Journalists The 2013 report makes the following recommendations: The European Commission is calling for submissions for its 2013 "EU Health Prize for Journalists". This is the fifth • Governments around the world should make edition of the prize, which is awarded to stimulate high- dementia a priority by implementing national plans, quality journalism that raises awareness of issues related and by initiating urgent national debates on future to healthcare and patients' rights. arrangements for long-term care. • Systems should be in place to monitor the quality of This year, the theme is "Europe for Patients". Journalists dementia care in all settings – whether in care homes are encouraged to submit their articles published in print or in the community. or online media in any EU Member State, including Croatia, until the deadline of 30 September 2013. • Autonomy and choice should be promoted at all stages of the dementia journey, prioritising the voices http://ec.europa.eu/health-eu/journalist_prize/ of people with dementia and their caregivers. 18 September: New counselling book aims at early • Health and social care systems should be better dementia integrated and coordinated to meet people’s needs. • Front-line caregivers must be adequately trained and A new book on counselling has been released by author systems will need to be in place to ensure paid and Robyn Yale. "Counseling People with Early Stage unpaid carers receive appropriate financial reward in Alzheimer’s: A Powerful Process of Transformation"

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order to sustain the informal care system and dementia must be high on national and EU health improve recruitment and retention of paid carers. agendas. • Care in care homes is a preferred option for a • Máire Geoghegan-Quinn, European Commissioner for significant minority – quality of life at home can be as Research, Innovation and Science, explains that good, and costs are comparable if the unpaid work of investments in research, innovation and awareness family caregivers is properly valued. are all needed to overcome the societal challenges of • The quality of care in care homes should be dementia. monitored through the quality of life and satisfaction • Marina Yannakoudakis, MEP (UK) and Vice of their residents, in addition to routine inspections, Chairperson of the European Alzheimer's Alliance as care homes will remain an important component (EAA) argues that EU funding for research must be of long-term care. directed into treatments for Europe’s great health The report was researched and authored by Prof Martin challenges. Prince, Dr Matthew Prina and Dr Maëlenn Guerchet on • Angelika Werthmann, MEP (Austria) and also an EAA behalf of the Global Observatory for Ageing and member, points out that policymakers have a duty to Dementia Care, which is hosted at the Health Service work with dementia patients, carers and relatives to and Population Research Department, King’s College develop innovative and practical solutions. London. The report was funded by a grant from Bupa. • Jean Georges, Executive Director of Alzheimer www.alz.co.uk/research/WorldAlzheimerReport2013.pdf Europe, praises the considerable progress of recent 21 September: Australian film shows the years but also stresses the continuing need for European collaboration on dementia. importance of social interaction for people with dementia The special supplement can be seen on The Parliament Magazine's website. A new short film named "Love, Loss and Laughter: Seeing Dementia Differently" has been released in Australia. The www.theparliament.com/digimag/dementiasupplement film was produced by Corinne Maunder and is evidence of her devotion to her grandmother, who has been living with dementia for 15 years. The 16-minute film shares the story of an eponymous photo exhibition that is currently on tour in Australia. The exhibition includes some 100 photographs of people living www.alzheimer-europe.org/Donation with dementia. The images offer a unique, compassionate and positive portrayal of people living with dementia - Contact Alzheimer Europe: illustrating that they continue to have needs around social Alzheimer Europe, 145 route de Thionville, L-2611, Luxembourg interaction and engagement in much the same way as [email protected], www.alzheimer-europe.org everybody else. Alzheimer Europe Board

http://www.fightdementia.org.au/film-festival-finalist-captures-the- Chairperson: Heike von Lützau-Hohlbein (Germany); Vice-Chairperson: emotions-of-dementia-.aspx Iva Holmerová (Czech Republic); Honorary Secretary: Charles Scerri (Malta); Honorary Treasurer: Maria do Rósario Zincke dos Reis (Portugal); Members: Patrick Maugard (France), Maurice O’Connell 26 September: The Parliament Magazine issues (Ireland), Sirpa Pietikäinen (Finland), Helga Rohra (Germany), Alicja special dementia feature Sadowska (Poland), Henry Simmons (UK - Scotland). Alzheimer Europe Staff The Parliament magazine has published a special Executive Director: Jean Georges; EU Public Affairs Officer: Annette supplement on dementia in its September issue. The 16- Dumas; Administrative Assistant: Kate Ellis; Editor – Dementia in page feature contains a series of interviews with notable Europe Magazine: Julie Fraser; Information Officer: Dianne Gove; Conference and Event Coordinator: Gwladys Guillory; EU figures, MEPs and various experts in dementia, Communications Officer: Alex Teligadas; Administrative Assistant: including the following: Grazia Tomasini.

• Tonio Borg, European Commissioner for Health and Consumer Policy, states that the fight against AE Calendar 2013

Date Meeting AE Representative 23rd Alzheimer Europe Conference: “Living well in a dementia-friendly society”, AE Board meeting AE Board members and AE 10-12 October and Annual General Meeting (St Julian’s, Malta) Staff 13 October Mediterranean Alzheimer Alliance Meeting (St Julian’s, Malta) Alex 15 October Carers Interest Group meeting in the European Parliament (Brussels, Belgium) Annette 17 October Meeting organised by Sirpa Pietikäinen (MEP, Finland) with national constituents (Brussels, Belgium) Annette Future Conferences

Date Meeting Place 5-9 October 2013 26th ECNP (European College of Neuropsychopharmacology), www.ecnp-congress.eu Barcelona, Spain 10-12 October 2013 23rd Alzheimer Europe Conference: “Living well in a dementia-friendly society”, www.alzheimer- St. Julian’s, Malta europe.org/EN/Conferences

Page 15 of 16 Newsletter: September 2013

17-19 October 2013 CAG2013: Aging…from Cells to Society, http://cag2013.ca/prospectus Halifax, Canada 17-20 October 2013 8th International Congress on Vascular Dementia – ICVD 2013, www.kenes.com/icvd Athens, Greece 24-25 October 2013 Colloque Cesco 2013: Ensemble dans l’action: les outils en soutien aux personnes atteintes de la Montréal, Canada maladie d’Alzheimer, www.iugm.qc.ca/index.php/fr/prof/formationcontinue/colloque/289- cesco.html 25-27 October 2013 6th International Conference on Alzheimer's Disease and Associated Disorders in the Middle East, Istanbul, Turkey www.alzheimermiddleeastconference.org 14-16 November 2013 6th annual conference Clinical Trials for Alzheimer’s disease CtaD 2013, www.ctad-alzheimer.com San Diego, USA 8-9 December 2013 2nd Middle East and North Africa Conference of Alzheimer’s Disease International, Dubai, UAE www.adidubai2013.org 11-14 December 2013 The 16th Asia Pacific regional Conference of Alzheimer’s disease international, www.aprc2013- Hong Kong & Macau, China hongkong-macau.com th 20-22 March 2014 58 Annual meeting of the German society for clinical neurophysiology and functional imaging Berlin, Germany (DGKN), www.dgkn-kongress.de 20-23 March 2014 30th International Congress of Clinical Neurophysiology of the IFCN (ICCN), www.iccn2014.de Berlin, Germany 26-29 March 2014 13th Int. Geneva/Springfield Symposium on Advances in Alzheimer Therapy, www.ad-springfield.com Geneva, Switzerland 8-11 May 2014 8th World Congress on Controversies in Neurology (CONy), http://www.comtecmed.com/cony/2014/ Berlin, Germany 26-27 June 2014 International Dementia Conference, Risky Business 2 – this time it's personal! Sidney,Australia http://www.dementiaconference.com/call-for-papers 5-9 July 2014 9th FENS Forum of Neuroscience, http://forum.fens.org/2014 Milan, Italy 20-22 October 2014 24th Alzheimer Europe Conference “Dignity and autonomy in dementia”, http://www.alzheimer- Glasgow, United Kingdom europe.org/Conferences th 23-25 October 2014 9 International Conference on Frontotemporal Dementias, www.ubccpd.ca Vancouver, Canada

The Alzheimer Europe newsletter arises from the 2013 Work Plan of Alzheimer Europe, which has received funding from the European Union in the framework of the Health Programme.

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NEWSLETTER October 2013

Alliance, which now includes nine Highlights in this issue Editorial AE members. 3 October: MEP Susy De 5 Thank you to all In Brussels, we were pleased to Martini joins the EAA the sponsors, welcome Ms Susy De Martini, MEP presenters and 10 October: AE holds Annual 2 (Italy) to the European Alzheimer's delegates that General Meeting Alliance. In addition, the EU came to St. 10 October: Iceland and 3 enacted a new directive on Julian's and patients' rights that defines the Monaco associations join AE rd made our 23 rights of EU citizens to choose 10 October: AE holds 23rd 3 Conference a where they receive medical Annual Conference in Malta huge success! treatment and to be reimbursed 25 October: EU enacts Cross- 10 This was the best-attended AE no matter where they live. border Healthcare directive conference of the past several On the scientific front, the 31 October: EMA revising 11 years - and probably the warmest dementia treatment guidelines European Medicines Agency is as well. We are especially grateful updating its treatment guidelines to the Maltese government and EU for both Alzheimer's disease and officials who gave us exceptional amyotrophic lateral sclerosis. The support and provided ample EMA also issued a new symbol to evidence of Malta's commitment clearly identify medicines that are to combat dementia on national subject to additional monitoring. and European levels. In addition, the JPND announced This newsletter provides an two imminent calls that will fund overview of the conference. research for neurodegenerative Extensive coverage will follow in diseases. Prof Philippe Amouyel, the next issue of the Dementia in Chair of the JPND Board, also Europe magazine. Meanwhile, made the news as lead author of a many presentations, pictures and study that identified 11 new genes videos have already been posted linked to Alzheimer's disease. Table of contents on the AE website. In this issue, we also report on a Editorial ...... 1 AE also held a successful Annual number of interesting new Alzheimer Europe ...... 2 General Meeting in Malta, where resources. WHO Europe published its European Mental Health Plan European Alzheimer's Alliance...... 5 delegates approved the accession of AMPA Monaco and FAAS and the EU produced a new public Alzheimer Europe Networking ...... 5 Iceland as full members of health brochure. Janssen and Deloitte released a joint report on EU Developments ...... 6 Alzheimer Europe. We extend a warm welcome to our new European health R&D and there is Members’ News ...... 7 members and look forward to also an Australian guide to working with them. managing BPSD. In addition, Policy watch ...... 10 Fondation Médéric Alzheimer has Science Watch ...... 10 Among our other members, published an English-language Portugal and Switzerland recently version of their very popular Dementia in Society ...... 12 celebrated 25 year anniversaries report on the benefits of outdoor New Publications & Resources...... 12 and both associations also report spaces and gardens for people good progress towards their with dementia. Job opportunities ...... 14 respective national dementia Finally, we would like to thank all AE Calendar 2013 ...... 15 plans. France's new plan for neurodegenerative diseases is also the contributors to our European Future Conferences ...... 15 progressing and may include some Dementia Monitor project. The of the 15 recommendations made initial results will be presented in by France Alzheimer. In addition, the European Parliament at our CEAFA recently made a new next lunch debate on 3 December. proposal for a dementia plan to Jean Georges the Spanish government. Finally, we report on the latest activities of Executive Director the Mediterranean Alzheimer's

Page 1 of 16 Newsletter: October 2013

Alzheimer Europe 10 October: INTERDEM holds meeting in Malta The INTERDEM group met on 10 October in Malta prior to 4 October: Ethics working group meets in Brussels Alzheimer Europe’s annual conference. New members On 4 October, the ethics working group held its second made short presentations about their research interests meeting to discuss the first draft of the report on the and work and were welcomed to the group. This was ethical issues linked to the way that dementia is perceived followed by presentations of members’ updated and portrayed. publications. The participants (listed below) were from a wide range of In the afternoon, INTERDEM held its business meeting backgrounds linked to ethics and dementia. They debated which focused on on-going projects, collaboration with the ethical implications surrounding various topics such as other groups and the creation of a website taskforce, as explanatory models of dementia, strategic communication well as of an INTERDEM PhD exchange programme - see and the use of metaphor, to name but a few, and link below. The meeting ended with workshops on reworked the structure and content of the future report. positive outcomes and technology. www.interdem.org/index.php/home/interdem-news/171-phd-exchange- • Dr Debby Gerritsen programme-interdem • Ms Bénédicte Gombault 10 October: AE holds Board meeting in Malta • Dr Dianne Gove • Dr Fabrice Gzil On 10 October, the Alzheimer Europe Board convened in St. Julian's, Malta. All the Board officers and four of six • Ms Jana Kasparkova Board members were present, along with guests Gerry • Prof. Jan Oyebode Martin, CEO of the Alzheimer Society of Ireland and Marc • Dr Christine Swane Wortmann, Executive Director of ADI. • Associate Prof. Baldwin Van Gorp Amongst other activities, the Board members adopted • Ms Aino Valtanen AE's 2012 Annual Report and agreed to submit the 2014 • Dr Daphne Wallace (UK) work plan and budget for approval to the Annual General Meeting. They also discussed the further development of 9 October: EWGPWD holds preparatory meeting joint AE/ADI activities in Europe and approved requests for the Alzheimer Europe Conference for AE to move to new offices and expand its staff. The European Working Group of People with Dementia The next AE Board meeting will take place on 2 December met on 9 September 2013 in Malta to prepare their in Brussels, Belgium. participation in Alzheimer Europe’s Annual Conference. The group, chaired by Helga Rohra, prepared their presentations for the symposium "Nothing about us without us", where conference delegates could hear their key messages based on their personal experience of dementia and ask questions. The members of the group wanted to help reduce the fear associated with dementia, focus on remaining capacities and show that people with dementia have a role to play in society. The group also helped Nina Baláčková prepare for her speech in one of the plenary sessions. 10 October: AE holds Annual General Meeting All the members agreed that it was important to be easily Alzheimer Europe held its 2013 Annual General Meeting recognisable as a member of EWGPWD. For this reason, on 10 October in St. Julian's, Malta. The meeting was they had arranged to wear special green access badges. attended by representatives from 26 full member They also agreed on how to organise their stand and on associations and one provisional member association, as who would be present to greet and inform participants. well as various guests including Marc Wortmann, Everyone had a role to play, including the distribution of Executive Director of ADI. copies of the newly created information sheet about the group. The delegates reviewed and adopted AE's 2012 Annual and Financial reports and voted in favour of AMPA Monaco and FAAS Iceland being accepted as full members of Alzheimer Europe. The association now has a total membership of 36, with 32 full members and four provisional members. Following a review of 2013 activities, the delegates adopted the "St. Julian's Appeal" - a document aimed at the leaders participating in the G8 dementia summit in December 2013 - and voted in favour of the European Dementia Pledge as a campaign tool for the 2014 European elections. There was also a discussion about Alzheimer Europe's ongoing Dementia Monitor project, which will benchmark national dementia policies and

Page 2 of 16 Newsletter: October 2013

allow comparisons and rankings among countries. The 3. Substantially increase the funding dedicated to initial results of the Dementia Monitor will be presented all areas of dementia research, in the European Parliament in December 2013. 4. Promote dementia as a priority in other Finally, delegates reviewed and approved the 2014 Work international bodies including the G20, the Plan and the 2014 Budget. Amongst other activities, Organisation for Economic Co-operation and Alzheimer Europe will continue to collaborate with Development (OECD), the World Health European dementia initiatives and will relaunch the Organisation (WHO) and the United Nations. European Alzheimer's Alliance after the elections. AE's rd participation in EU research projects will be expanded and 10-12 October: Alzheimer Europe holds 23 an Expert Advisory Panel will be launched to monitor Conference in Malta scientific developments in dementia. The association will rd Alzheimer Europe held its 23 Annual Conference in St. also overhaul its communications strategy and the 24th Julian's, Malta during 10-12 October 2013 with the motto Alzheimer Europe Conference will take place in Glasgow, "Living well in a dementia-friendly society". The UK on 20-22 October 2014 under the theme "Dignity and conference featured over 110 speakers in plenary and autonomy in dementia." parallel sessions, special symposia and workshops as well 10 October: Monaco and Iceland associations join as poster presentations. Alzheimer Europe The conference was held under the Distinguished Alzheimer Europe is very pleased to Patronage of His Excellency Dr George Abela, President of welcome AMPA Monaco and FAAS Malta. President Abela officially opened the conference Iceland as full member associations. The on 10 October by welcoming over 520 delegates to the applications of both associations were island and congratulated the Organising and Programme unanimously approved at AE's 2013 committees for their efforts. He also wished all the Annual General Meeting. participants a very successful conference as they explored the impact of perceptions and the image of dementia on This brings Alzheimer Europe's total the lives of people with dementia and their carers. membership to 36, including 32 full members and four provisional members. AE has worked The delegates were also welcomed by Minister of Health together with both associations in the past Dr Godfrey Farrugia, a representative of Ms Marie-Louise and we now look forward to closer ties and Coleiro Preca, Minister for the Family and Social Solidarity, direct participation in all of our activities. Parliamentary Secretary for the Rights of Persons with Disabilities and Active Ageing Dr Franco Mercieca and More information about dementia activities in Iceland and Joseph Cuschieri, Maltese Member of the European Monaco can be found on the associations' websites. Parliament. All of these policymakers restated and affirmed the commitment of the Maltese government to www.alzheimer.is www.ampa-monaco.com the development of national dementia strategy. 10 October 2013: Alzheimer Europe calls on G8 to The opening ceremony concluded with a keynote lecture step up international research efforts on dementia by Mr Martin Seychell, another fellow Maltese and Deputy Director General of the European Commission's At its Annual General Meeting in St. Julian's, Malta on 10 DG Health and Consumers. Mr Seychell described the EU’s October 2013, Alzheimer Europe and its member contribution to addressing the challenge of dementia, organisations adopted the following appeal: such as supporting Member States in dealing with the present challenges and preparing them for the future St. Julian’s Appeal to G8 Dementia Summit challenges that will undoubtedly come. Alzheimer Europe and the undersigned national member The first plenary session on 11 October was chaired by Iva organisations: Holmerová (Czech Republic) and focused on integrated • Welcome the UK Prime Minister’s initiative to care. Angiolina Foster (Scotland) spoke about the convene a G8 Dementia Summit on 11 December in commitment of the Scottish Government to post- London, diagnostic support and Chris Gastmans (Belgium) discussed dignity-enhancing care for persons with • Fully support the Summit’s objective of developing dementia and its application to advance directives. They greater international collaboration and public private were followed by Gráinne McGettrick (Ireland), who partnerships for research into the causes, treatment outlined Ireland's progress in improving dementia and prevention of Alzheimer’s disease and other palliative care and Jacqueline Parkes (UK) who presented forms of dementia, aspects of improving access, care pathways and social • Call upon the G8 countries to: care for people with young onset dementia. 1. Include and consult Alzheimer associations and Charles Scerri (Malta) chaired the second plenary session people with dementia in the decision making that featured presentations on prevention. Martin Orrell process and definition of a global research (UK) explored the role of case management for preventing agenda, institutionalisation and hospitalisation and Finland's Tiia 2. Adopt a holistic approach to research to Ngandu gave an overview of our current understanding of include psycho-social, care, socio-economic the prevention of dementia. Armelle Leperre-Desplanques and health systems research, (France) spoke about how the ALCOVE project toolbox can help to prevent behavioural problems and avoid the use

Page 3 of 16 Newsletter: October 2013

of anti-psychotics and, finally, Myrra Vernooij-Dassen The 23rd Alzheimer Europe Conference received funding (Netherlands) presented solutions to prevent carer burn- from the European Union in the framework of the Public out by empowerment. Health programme. In between the two plenaries, the European Working 18 October: AE remains eligible for EMA activities Group of People with Dementia (EWGPWD) held a highly popular symposium entitled “Nothing about us without On 18 October, Alzheimer Europe received a positive us”. This was chaired by Helga Rohra (Germany) and outcome from a periodic EMA re-evaluation of eligibility. featured presentations by Stig Atle Aavik, Jean-Pierre The letter states that AE "continues to comply with the Frognet, Raoul Grönqvist, Agnes Houston and Dermod definition of patients’/consumers’ organisations and fulfils Slevin. They presented various aspects of how they live all the necessary criteria. Therefore, it continues to be with dementia, with a common theme of focusing on their eligible to be involved in the Agency’s activities." remaining capacities to stay active in society for as long as Alzheimer Europe is a member of the EMA's PCWP - the they possibly can. Working Party with Patients' and Consumers' On 12 October, the third plenary was chaired by Maurice Organisations - for the period 2013-2016. The PCWP O’Connell (Ireland) and dealt with innovation and provides recommendations to the European Medicines dementia. Nina Baláčková (Czech Republic) spoke about Agency and its human scientific committees on all matters the activities of the EWGPWD, which is giving a voice to of interest to patients in relation to medicinal products. people with dementia. She was followed by Elisabetta The working party is composed of representatives from Vaudano (Italy), who showed the high priority of patients' and consumers' organisations that fulfil the Alzheimer’s disease within the work of IMI - the eligibility criteria, as well as the Agency's human scientific Innovative Medicines Initiative. David Mamo (Malta) committees and the Agency secretariat. discussed the behavioural and psychological symptoms of dementia (BPSD) and Franka Meiland from the www.ema.europa.eu Netherlands gave an update of assistive technologies that 28 October: Incontinence working group holds are supporting people with dementia and their carers. second meeting The fourth and final plenary session was chaired by On 28 October, the incontinence working group in Malta's Stephen Abela and focused on a dementia friendly Brussels held its second meeting in Brussels. This is a joint society. Joost van Hoof (Netherlands) presented the latest project which is organised and conducted by Alzheimer in ageing-in-place or the living arrangements for people Europe in collaboration with SCA Global Hygiene. with dementia in the community. Carmelo Aquilina (Malta/Australia) showed evidence of the persistence of The meeting was chaired by Dianne Gove, Information the self in dementia and Anthea Innes (UK) described Officer for Alzheimer Europe and attended by Nicole several personal journeys to dementia friendly societies. Huige, Kai Leichsenring, Vikky Morris, Helga Rohra, Breda Savage and Anthony Scerri. The conference also included 20 parallel sessions, three special symposia and poster sessions that featured over The group continued to work on the development of 50 exhibits. These dealt with specific aspects of dementia, guidelines to improve continence care for people with including post-diagnostic support, perceptions and image dementia living at home. The guidelines will be circulated of dementia, psychosocial care, epidemiology and to a wider group of experts with relevant experience and telecare. Delegates learned about country-specific to people with dementia and carers before a preliminary dementia projects and the latest developments in legal set of guidelines is presented at the 5th Global Forum on and ethical issues. One particularly well-attended session Incontinence to be held in Madrid in April 2014. The final concentrated on the importance of involving people with set of guidelines and the accompanying report will be dementia. This was emphasised in three presentations launched at the 24th Alzheimer Europe Conference in from three different continents, showing a welcome October 2014. positive trend to reduce stigma and increase the quality of life of people with dementia all over the world. 31 October: 2013 AE Conference presentations are online! The conference ended with an invitation by Alzheimer Scotland's Jim Pearson to the 24th Alzheimer Europe We are pleased to report that most of the presentations Conference in October 2014. This was followed by closing from the 23rd Alzheimer Europe Conference are now remarks and a farewell from Heike von Lützau-Hohlbein available on our website. The remaining presentations, as and Stephen Abela, respectively the Chairpersons of well as more photos, will follow very soon. Alzheimer Europe and the Malta Dementia Society. www.alzheimer-europe.org/Conferences/Previous-conferences/2013-St- Alzheimer Europe and the Malta Dementia Society are Julian-s-Malta/Detailed-programme-abstracts-and-presentations very grateful to the presenters, delegates and event staff that helped make the conference a success. The efforts and determination of people with dementia and their carers are particularly appreciated. Their collective contribution has triggered a shift in public perceptions over the past years, leading to a growing commitment by www.alzheimer-europe.org/Donation national and European policy makers to give dementia the attention it so rightly deserves.

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Impressions from the 23rd Alzheimer Europe Conference

Štefanija Lukič-Zlobec (Slovenia), Anne Arndal Maltese President George Abela opens the The opening ceremony in the impressive (Denmark) and Nino Mimica (Croatia) collect their conference Grandmaster Suite badges

A view from the welcome reception on a very warm Angiolina Foster (Scotland) speaking at a plenary Members of the EWGPWD greet visitors to their stand evening session

Dr Gary Geipel (USA) at Lilly's symposium on clinical Heike von Lützau-Hohlbein (Alzheimer Europe) and Jim Pearson (Scotland): "See you next year in trials Stephen Abela (Malta Dementia Society) close the Glasgow!" conference European Alzheimer's Alliance 3 October: MEP Susy De Martini joins the Alliance The European Alzheimer's Alliance is 27 June: MEP Cristian Busoi leaves the European pleased to welcome Susy De Martini, MEP Parliament (Italy). She belongs to the European Conservatives and Reformists Group (ECR). Mr Cristian Busoi, MEP (Romania) and member of the European Alzheimer's Alliance, left the European Ms De Martini sits on the Committee on Parliament in June 2013. Foreign Affairs and on the Delegation for relations with the United States. She is also a substitute for the He was a member of the EAA since March 2012. We Committee on Budgets. would like to thank Mr Busoi for his contribution - particularly his attendance and support of the 2013 Ms De Martini joined the Alliance on 3 October. Romanian National Alzheimer Conference - and wish him all the best for the future. Alzheimer Europe Networking On 1 October, Annette participated in the European Patients’ Forum launch of its EU campaign Manifesto (Brussels, Belgium). On 2 October, Jean attended a European Parliament lunch debate on European Joint Programme Initiatives (Brussels, Belgium). On 9 October, the European Working Group of People with Dementia met to prepare its participation in the AE Conference (St Julian’s, Malta). On 10-12 October, AE Board members and AE Staff attended the 23rd Alzheimer Europe Conference: “Living well in a dementia-friendly society”, AE Board meeting and Annual General Meeting (St Julian’s, Malta). On 11 October, members of the AE Board and AE member organisations attended an information meeting organised by Nutricia (St. Julian’s, Malta). On 13 October, Alex attended the Mediterranean Alzheimer Alliance Meeting (St Julian’s, Malta).

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On 15 October, Annette attended the Carers Interest Group meeting in the European Parliament (Brussels, Belgium). On 17 October, Annette attended the meeting organised by Sirpa Pietikäinen (MEP, Finland) with national constituents (Brussels, Belgium). On 28 October, Dianne attended the second meeting of Alzheimer Europe’s working group on good incontinence care for people with dementia living at home (Brussels, Belgium).

Members of the European Alzheimer’s Alliance

Austria: Becker K. Heinz (EPP), Werthmann Angelika (NI). Belgium: Demesmaeker Mark (Greens/EFA), Ries Frédérique (ALDE), Staes Bart (Greens/EFA), Tarabella Marc (S&D). Bulgaria: Parvanova Antonyia (ALDE). Cyprus: Triantaphyllides Kyriacos (GUE-NGL). Czech Republic: Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP). Denmark: Christensen Ole (S&D), Rohde Jens (ALDE), Schaldemose Christel (S&D). Finland: Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli (ALDE), Pietikäinen Sirpa (EPP). France: Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise (EPP), Juvin Philippe (EPP), Morin-Chartier Elisabeth (EPP), Pargneaux Gilles (S&D). Germany: Niebler Angelika (EPP), Roth-Behrendt Dagmar (S&D), Ulmer Thomas (EPP). Greece: Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni (S&D), Kratsa-Tsagaropoulou Rodi (EPP). Ireland: Aylward Liam (ALDE), Childers Nessa (non-attached), Crowley Brian (ALDE), McGuiness Mairead (EPP), Mitchell Gay (EPP). Italy: De Martini Susy (ECR), Panzeri Pier Antonio (S&D), Toia Patrizia (S&D). Lithuania: Blinkeviciute Vilija (S&D). Luxembourg: Engel Frank (EPP), Lulling Astrid (EPP). Malta: Cuschieri Joseph (S&D). Netherlands: De Lange Esther (EPP), van Nistelrooij Lambert (EPP), Wortmann-Kool Corien (EPP). Poland: Łukacijewska Elżbieta (EPP). Portugal: Carvalho Maria da Graça (EPP), Coelho Carlos (EPP), Matias Marisa (GUE/NGL). Romania: Antonescu Elena Oana (EPP), Sârbu Daciana Octavia (S&D), Tanasescu Claudiu Ciprian (S&D). Slovakia: Mikolasik Miroslav (EPP), Zaborska Anna (EPP). Slovenia: Kleva Kekuš Mojca (S&D), Peterle Alozj (EPP). Spain: Badia i Cutchet Maria (S&D), Estaràs Ferragut Rosa (EPP). United Kingdom: Anderson Martina (GUE-NGL), Ashworth Richard (ECR), Hall Fiona (ALDE), McAvan Linda (S&D), McCarthy Arlene (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Taylor Keith (Greens/EFA), Vaughan Derek (S&D), Watson Graham (ALDE), Willmott Glenis (S&D), Yannakoudakis Marina (ECR).

The aim of the call is to establish pilot initiatives to EU Developments develop preventive strategies. Proposals should entail 21 October: JPND will launch two calls in multidisciplinary studies which may focus on new paradigms for multimodal preventive interventions December 2013 including culture specific aspects, on harmonisation The EU Joint Programme – Neurodegenerative Disease initiatives, or on proof-of-concept, and feasibility studies. Research (JPND) expects to launch two Joint Transnational Proposals may include research-based evaluation of Calls later this year aimed at supporting transnational interventions and validation of outcome measures. collaborations in the field of neurodegenerative disease JPND will pilot the use of a new online partnering tool for research. these calls. The tool will enable call applicants to The 2-step calls are anticipated to launch in early showcase their research group’s expertise, search for December 2013, with a likely first stage (pre-proposal appropriate partners, pitch call-related ideas and draft submission) deadline of February 2014. Further detail will their pre- and full-proposals online. It will be made be provided on the call launch date. However, the available through the JPND website and will be indicative titles of each call are provided below: announced in a JPND News alert in November 2013. “A call for European research projects for Cross-Disease www.neurodegenerationresearch.eu/initiatives/annual-calls-for-proposals Analysis of Pathways related to Neurodegenerative 22 October: Commission presents its work Diseases” programme for 2014 The aim of the call is to establish a limited number of On 22 October, the European Commission adopted its ambitious, innovative, multi-national and multi- 2014 work programme. disciplinary collaborative research projects that: The work programme will focus on the finalisation of the • combine experimental approaches from banking union, the single market and the digital agenda. It fundamental, pre-clinical and/or clinical with will also ensure that the new measures under the computational approaches; Multiannual Financial Framework for 2014-2020 swiftly • perform network analyses in different become operational – in particular to combat youth neurodegenerative and other chronic diseases to unemployment. elucidate the underlying mechanisms common and http://ec.europa.eu/atwork/pdf/cwp_2014_en.pdf differing in the investigated diseases; http://ec.europa.eu/atwork/pdf/ip_13_13_978_en.pdf • will add value to existing research by analysing diseases across traditional clinical boundaries, 22 October: Commission presents new toolbox for thereby gaining deeper understanding of the patho- the effective use of Structural Funds for health physiological mechanisms of the diseases. investments “A call for European research projects for Pilot Studies On 22 October, the European Commission presented a on Preventive Strategies related to Neurodegenerative new toolbox for the effective use of Structural Funds for Diseases” health investments in 2014-2020.

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This toolbox has been developed by the working party on experience of a man who public health at senior level, chaired by Hungary. develops dementia. This was produced by a Cuban dance The main function of the toolbox is to make an immediate group in cooperation with start to help improve the quality and effectiveness of AMPA. The flash mob planning, decision-making and implementation of consisted of some 700 people Structural Funds investment programmes and projects in - including 500 teenagers - health through a range of suggested methodologies and who assembled in a public guidelines. square and briefly assumed The toolbox includes a focus on critical success factors, the shape of a seahorse or the Funds framework and mechanisms, strategic and hippocampus, which is financial planning or implementation. AMPA's symbol (see picture).

https://webgate.ec.europa.eu/eipaha/news/index/show/id/473 AMPA also held a public conference that featured http://www.gyemszi.hu/site/index.php?mid=357&lang=en presentations on the association's activities and also on dementia risk factors, dealing with memory impairments Members’ News and assistive technologies.

www.monacochannel.mc/Chaines/Monaco-Info-Les- 1 September: Jersey Alzheimer’s Association Reportages/Videos/Journee-Mondiale-de-lutte-contre-la-maladie-d- appoints new Manager Alzheimer Mark Blamey, BSc was appointed as Manager 21 September: Alzheimer Scotland holds Memory of the Jersey Alzheimer’s Association on 1 Walk on World Alzheimer's Day September. Alzheimer Scotland held a very successful He has personal experience of caring for Memory Walk on 21 September to people living with dementia and has also completed in commemorate World Alzheimer’s Day. In all, depth training with Alison Holmes who is a qualified 295 people took part in the walking challenge, many dementia trainer in the UK. Mark is able to add value and participating in honour of family members who have been advice on the issues surrounding dementia and to assist in affected by dementia. the direction of dementia services in Jersey. He is cognisant with the types, symptoms, progression and Popular attractions on the day of the Memory Walk treatment of the condition and what happens to the included a display of vintage cars from Ecosse Classic brain, memory and skills when someone gets dementia. Wedding Cars, vintage hair and beauty make-overs by Boombarbers and Glamcandy, face painting, arts and He has studied Wellbeing and being Person-Centred crafts, a bouncy castle and a home baking stall. throughout all stages of dementia (Kitwood) including Wellbeing for carers, family and professionals. This Money raised by the event will be funding projects includes examining conflicts, barriers and opportunities, supporting people with dementia and their families in looking particularly at different forms of communication communities across Scotland, such as Alzheimer and behaviour as a form of communication. Scotland’s Dementia Advisors and Dementia Nurses, the Alzheimer Scotland Dementia Research Centre and their Mark will help to raise awareness of freephone Dementia Helpline. dementia in our community and promote the services and activities provided by the Jersey Alzheimer’s Association. He is interested in creating dementia-friendly environments both in the home and in professional establishments. One of his aims is to make Jersey a dementia-friendly Island. Mark may be contacted, in confidence, for advice and information at [email protected]

21 September: AMPA Monaco holds World Alzheimer's Day celebrations 21 September: France Alzheimer lists priorities for the next "neurodegenerative diseases plan" Monaco's AMPA association commemorated World Alzheimer's Day On 21 September, France Alzheimer with a Memory Walk, a modern ballet presented 15 recommendations for the performance and a flash mob. These next "neurodegenerative diseases plan" seemingly disparate activities were very that President Hollande has pledged to launch during his successful in raising awareness of mandate. This new plan will pay specific attention to dementia among people of all backgrounds and ages. Alzheimer’s disease. The recommendations include the following items: The 4th Monaco Memory Walk took participants on an hour-long tour of the city and ended with a performance • Launch of an information campaign to raise by a choir of singers with dementia. The ballet evening awareness of the disease and encourage early was the world premiere of a new work about the diagnosis.

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• Develop a process for rapid post-diagnosis consultations • Develop and disseminate a single tool to evaluate the

needs of the person. www.alzheimer-europe.org/Donation • Maintain funding for training programmes for family carers. 4 October: Swiss Alzheimer Association celebrates th • Increase the staff/patient ratio in both generalist 25 anniversary units and units that deal with people at an advanced On 4 October, the Swiss stage of the disease. Alzheimer Association hosted • Decrease the out-of-pocket costs incurred by carers. 600 guests at a Silver Jubilee • Develop cognitive-behavioural units. conference to celebrate its 25th anniversary. • Improve support for people with dementia below 60 The conference featured VIP guest Maya Graf, years old. Chairperson of the Swiss Parliament, who congratulated • Develop end of life training programmes. the Association for "breaking the taboo" around Alzheimer's disease and other forms of dementia. The original French-language document can be seen on the association's website. Switzerland is due to launch its first national dementia www.francealzheimer.org/15-propositions-pour-am%C3%A9liorer-parcours- strategy at the end of November 2013. The conference soin/776 included a political round table discussion on how the lives of Swiss people with dementia will be in ten to 15 21 September: Alzheimer Society of Ireland runs years. The common theme that emerged was that the brain health campaign new national strategy will have a substantial positive impact on the quality of life of people with dementia and The Alzheimer Society of Ireland ran a two- their families and carers. week brain health campaign called "Forget Me Not" to coincide with World Alzheimer's There was also a presentation by Heike von Lützau- Day. Hohlbein, Chairperson of Alzheimer Europe, who outlined the various strategies and actions on dementia that are The campaign ran across radio and online, aiming to raise being developed on a European level. public awareness about how people could reduce their risk of developing Alzheimer's disease and other forms of The participation of the group “Carpe Diem” was without dementia in later life by looking after their brain, body doubt the highlight of the conference. The group consists and heart. An information leaflet was developed to of seven people with early-onset Alzheimer's disease who accompany the campaign which outlines tips and advice are very active in presenting various aspects of their for how you can keep your brain, body and heart as experiences of living with Alzheimer's disease. According healthy and active as possible. The leaflet is available on to Birgitta Martensson, Executive Director of the Swiss the society's website. Alzheimer Association, their statements on how they live www.alzheimer.ie with dementia will certainly be remembered.

1 October: Alzheimer Portugal awards active ageing prize In an award ceremony on 1 October, 13 October: Mediterranean Alzheimer's Alliance Alzheimer Portugal (AP) awarded its Dr. meets in Malta Maria Raquel Ribeiro Active Ageing Prize to Mrs Tereza da Conceião Fradique, aged The 3rd Mediterranean Alzheimer's Alliance (MAA) 96. Mrs Fradique, an active Alzheimer workshop took place on the fringe of the Alzheimer Portugal volunteer, won this Prize in the category "Family Europe Conference on 13 October in Malta. This Alliance and Community" for her volunteer activity and to was launched by Monaco's Association Monégasque pour recognise her remarkable positive attitude and la recherche sur la maladie d'Alzheimer (AMPA) in April determination in life. 2012 in Marrakech, Morocco. It unites associations, scientists and professionals working together to fight This prize was originally created to pay tribute to Maria Alzheimer’s disease and other related disorders in the Raquel Ribeiro, a very important figure in the Portuguese Mediterranean region. The MAA has three main Social Security administration and aims to make known objectives: to create a network of Mediterranean experts and highlight examples of life that help to convey a on Alzheimer’s disease and other related disorders in positive image of elderly people. order to share common concerns, to identify needs and develop specific solutions and to encourage future collaboration between Alzheimer associations, clinicians

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and researchers across the Mediterranean. The a session chaired by Alzheimer Portugal's Maria do overarching aim of the MAA is to help those working in Rosário Zincke dos Reis. the field of Alzheimer's disease and other related disorders in the Mediterranean to develop initiatives and This session began with António Leuschner, President of to share and exchange their knowledge and best the National Council for Mental Health and also a member practices. of Alzheimer Portugal's Scientific Committee. He gave an overview of the various existing dementia plans in Europe This meeting was an opportunity to welcome three new and the progress that has been achieved in Portugal. Mr associations (Alzheimer Uniti Onlus Italia, Alzheimer Leuschner was followed by Beatriz Santiago, Chairperson Slovenia, Alzheimer Croatia and three new scientific of the “Group of Studies of Brain Aging and Dementias”, experts (Médéric Alzheimer Foundation, University of who made a presentation on the importance of including Toulouse, French School of Public Health), making a total research in a National Plan. of 16 MAA members. The member countries are Croatia, France, Greece, Italy, Lebanon, Malta, Monaco, Morocco, Marisa Matias, a Portuguese Member of the European Portugal, Slovenia, Spain and Tunisia. During this Parliament (MEP), was also present at the conference and workshop, the members discussed the report to be continued to show her support for the fight against published by MAA next year, which will present the dementia. She gave a presentation on dementia activities Alzheimer situation in each country and their specific at the European level, including a short film that was needs. made for the 2012 European Year of Active Ageing. The film documents the visit of various MEPs, including Ms The next stage will be a 4th workshop in Lisbon in 2014. Matias, to Alzheimer Portugal's Day Care Centre in Lisbon This will be an opportunity for the MAA to elaborate and their discussions with residents about their recommendations so that the Mediterranean region can experiences of living with dementia. present its common characteristics and to make sure that Alzheimer’s disease and other related disorders become a The last speaker was Álvaro de Carvalho, Coordinator of priority in every country. It will also be possible for other the National Mental Health Programme. He outlined the Mediterranean Alzheimer actors to join the Alliance. conclusions of a May 2013 meeting that was hosted by the Ministry of Health and provided considerable impetus to the development of the National Dementia Plan. During that meeting, a group of some 40 dementia experts persuaded the government that existing dementia prevalence figures are sufficiently accurate to allow the next phase of the plan to proceed right away. He also announced that the agreement between the Health Ministry and Alzheimer Portugal is ready to be signed. This key document designates Alzheimer Portugal as the national reference for specific care and services for people with dementia and the dissemination of good practices, mainly through training family and professional

carers. This gives Alzheimer Portugal a mandate to train 17 October: CEAFA launches a chocolate campaign doctors, nurses, psychologists and other professionals for dementia from the National Health System. The agreement also recognises Alzheimer Portugal as a partner in the creation Spain's CEAFA Alzheimer and implementation of the Dementia National Plan. association has teamed with an online chocolate retailer in a campaign to raise dementia awareness and provide funding for the association. Clubdelchocolate.com offers a package called "Chocolate for memory" that contains a variety of black chocolate 28 October: Alzheimer Nederland awards products and donates EUR two from each sale to CEAFA. fellowship grants www.clubdelchocolate.com/p.520.0.0.1.1-chocolate-para-la-memoria.html Each year, Alzheimer Nederland awards a 18 October: Alzheimer Portugal celebrates 25th number of individual fellowship grants to anniversary promising young Dutch researchers, in order to promote international exchange of On 18 October, Alzheimer Portugal organised a knowledge and techniques. conference to celebrate its 25th anniversary. The popular event commemorated the main achievements of the This year, seven grants with a total value of EUR 120,000 association in research, specialised care and support and were awarded for the following research topics: legal rights since it was founded by Professor Carlos messenger proteins, astrocytes, cerebral amyloid Garcia. However, the main focus of the conference was angiopathy (CAA), micro-infarctions, biomarkers, micro- the progress of the Portuguese National Dementia Plan, in bleeds and amyloid antibodies via gene therapy.

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More information can be found on the Alzheimer His sentiment were echoed by Mr David Pérez de Ciriza, Nederland website or via email to Mr Dinant Director of Sustainability and Institutional Relations of Bekkenkamp: [email protected] Sanitas, who added: "The focus of state policy and the creation of a National Dementia Plan ensures that health www.alzheimer-nederland.nl/actueel/onderzoek/2013/oktober/subsidies- 2013-7-internationale-onderzoeken.aspx and social systems are adequately structured and equipped to ensure high quality care that allows people Policy Watch live well with dementia today and in the future." 25 October: Entry into force of the Directive on Science Watch Patients' Rights in Cross-border Healthcare 1 August: EMA releases draft guideline for ALS On 25 October, the Directive on Cross-Border Healthcare medicines entered into force in the EU. It defines the rights of EU citizens to choose where they receive medical treatment across the EU and to be reimbursed for it no matter where they live. The new Directive introduces three major changes The European Medicines Agency (EMA) has released a focusing on patients' rights: draft guideline on medicines for the treatment of amyotrophic lateral sclerosis (ALS) released for a six- • citizens have the right to choose and be reimbursed month public consultation. for treatment, in both public and private health care, anywhere in the EU, The document focuses on the design of studies for medicines that have an impact on the course of the • prior authorisations for cross-border healthcare will disease (disease-modifying treatments) as well as become the exception rather than the rule, medicines that treat the symptoms of ALS. Guidance is • citizens have the right to make informed decisions provided on the choice of meaningful outcome about treatment options. They will be able to receive parameters used in studies and the clinical relevance of any relevant information from national contact functional tests of disability, including motor- and points, as established under the new Directive, and respiratory-function tests and their relationship to information from health care and treatment survival. providers directly. Comments should be made using the submission form The Directive calls for mutual assistance and cooperation and sent no later than 31 January 2014 to between Member States, in particular on the [email protected] interoperability of e-Health tools and the use of health technology assessment. It also facilitates the recognition More information is available on the EMA website. of prescriptions for medical products in every Member www.ema.europa.eu/ema/index.jsp?curl=pages/news_and_events/news/20 State. 13/07/news_detail_001867.jsp&mid=WC0b01ac058004d5c1 The Directive will provide for the development of 19 September: EMA approves a new generic European reference networks, to encourage the pooling memantine drug of knowledge and maximise the cost effective use of resources in highly specialised healthcare, such as the On 19 September, the EMA approved a generic drug diagnosis and treatment of rare diseases. named Memantine Accord. It has been authorised in 5 mg, 10 mg, 15 mg and 20 mg tablets intended for http://ec.europa.eu/health/newsletter/117/focus_newsletter_en.htm http://europa.eu/rapid/press-release_MEMO-13-932_en.htm treatment of patients with moderate to severe http://eur- Alzheimer’s disease. Memantine Accord will be marketed lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:088:0045:0065:EN:PD by Accord Healthcare Limited. F www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicine 30 October: CEAFA and Sanitas present a policy s/002766/smops/Positive/human_smop_000586.jsp&mid=WC0b01ac058001 proposal to the Spanish Parliament d127 1 October: 11 new genes are linked to AD On 30 October, Spain's CEAFA and the Sanitas Foundation presented a Researchers at the Pasteur Institute in Lille, France have proposal for a national dementia policy published the results of a genetics study that identifies 11 to the Committee on Health and Social new genes associated with late-onset Alzheimer's disease. Services of the Spanish House of Representatives. The researchers were led by Dr. Philippe Amouyel, Both organisations share the goal of Alzheimer's disease Professor of Epidemiology and Public Health at the and other forms of dementia becoming a public health University Hospital of Lille. They conducted a genetic priority at the national and international levels. analysis of more than 74,000 people, in search of DNA regions that were common in people with Alzheimer's Mr Koldo Aulestia, President of CEAFA, said: "Alzheimer's disease. is more than just a disease; the figures show that it has become a real social and health problem that affects all Dr. Amouyel said: "This helps us understand the strata of society, extending its effects not only on pathophysiology of the disease. If we are able to develop individuals but also on family caregivers." preventative treatments for Alzheimer's disease, they would need to be used very early on. This could help us

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identify people who are more prone to the disease by when the mice were asleep, suggesting that sleep estimating their individual risk." normally clears toxic molecules from the brain. www.nature.com/ng/journal/vaop/ncurrent/full/ng.2802.html This means that the cells regulating the glymphatic system 1 October: New symbol identifies medicines that may be new targets for treating a range of neurodegenerative disorders. need additional monitoring www.sciencemag.org/content/342/6156/373 The European Commission has introduced a new way of identifying medicines that are being monitored particularly closely. These medicines have a black inverted triangle displayed in their package leaflet, together with a short sentence that reads "This medicinal product is subject to www.alzheimer-europe.org/Donation additional monitoring." 25 October: FDA approves second brain imaging This does not mean that the medicine is unsafe. All drug medicinal products on the EU market have undergone The US Food and Drug Administration today approved rigorous tests to demonstrate their quality, safety and flutemetamol F18 injection, a radioactive diagnostic drug efficacy and to prove that their benefits outweigh their for use with positron emission tomography (PET) imaging risks. However, it is important to continue to monitor of the brain in adults being evaluated for Alzheimer's their use once on the market and look out for adverse disease and other forms of dementia. reactions that are not listed in the product information. The drug works by attaching itself to beta amyloid and The black symbol is intended to identify the medicines producing a PET image of the brain that is used to which are subject to more intensive post marketing evaluate the presence of beta amyloid. A negative scan monitoring (additional monitoring), so that new emerging means that there is little or no beta amyloid accumulation information can be immediately shared with the in the brain, while a positive scan means that there is regulatory authorities, medical communities, marketing probably a moderate or greater amount of amyloid in the authorisation holders and patients. brain. For new biological medicinal products and those Flutemetamol F18 injection is marketed as Vizamyl by GE containing new active substances, the black symbol will Healthcare. Last year, the FDA approved florbetapir F18 normally be removed after five years, once the use of the injection, a similar drug that is marketed as Amyvid by product is established. Lilly.

More information, including a video and a factsheet, can www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm372261.ht be found on the EMA website. m www.ema.europa.eu/ema/index.jsp?curl=/pages/special_topics/general/gen 31 October: EMA seeks opinions for new dementia eral_content_000586.jsp treatment guidelines 17 October: Glymphatic system may be key to On 31 October, the European Medicines Agency (EMA) flushing brain toxins released a concept paper on the need to revise the A new study has shown that the space between brain cells guideline on medicines for the treatment of Alzheimer's in mice may increase during sleep, allowing the brain to disease and other dementias for public consultation. flush out toxins that build up during waking hours. The Recent progress in understanding Alzheimer’s disease researchers were led by Dr. Maiken Nedergaard, suggests that the structural and biological changes Professor of Neurosurgery at the University of Rochester associated with the disease start to occur as early as ten Medical Center (URMC) in New York. to 20 years prior to the emergence of the clinical They determined that, during sleep, a plumbing system symptoms. As a consequence, early and even pre- called the glymphatic system may open, letting symptomatic patients are now being included in clinical cerebrospinal fluid (CSF) flow rapidly through the brain. development programmes and it is expected that some The team injected dye into the CSF of mice and monitored medicines may be more effective at that stage than they its flow through their brains while monitoring electrical would be later in the illness. brain activity. The dye flowed rapidly when the mice were New research diagnostic criteria are being used in clinical unconscious but slowed remarkably when the same mice trials for different stages of the disease. In addition, a were awake. number of biomarkers to help identify and select patients Dr. Nedergaard said: "We were surprised by how little at the pre-dementia stage of the disease have been flow there was into the brain when the mice were awake. developed by medicines developers; several have It suggested that the space between brain cells changed received a qualification opinion from the Agency’s greatly between conscious and unconscious states." Committee for Medicinal Products for Human Use (CHMP) for use in the development of medicines. The scientists then tested whether this was controlled by the glymphatic system by injecting mice with beta The concept paper describes how these new amyloid and measuring how long it lasted when they were developments have had an impact on recent and future asleep or awake. The toxic protein disappeared faster clinical-trial protocols and discusses the elements to

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consider as part of the revision of the current guideline. innovative new studies to help find effective interventions These include the: for this devastating degenerative brain disease. And my Administration also remains committed to implementing • impact of new diagnostic criteria for Alzheimer's the first-ever National Plan to Address Alzheimer's disease, including early and even asymptomatic Disease, which lays out a roadmap to preventing and disease stages on clinical-trial design; effectively treating Alzheimer's disease by 2025. • choice of parameters to measure trial outcomes and the need for distinct assessment tools for the Working together with scientists, patient advocates, and different disease stages in Alzheimer's (different signs those living with this disease, we can give a sense of hope and symptoms, differences in change over time, to millions of families, patients, and caregivers. For severity); resources and information on living with or caring for someone with Alzheimer's disease, please visit • assessment of efficacy and safety in different age www.Alzheimers.gov groups; • potential use of biomarkers and their temporal As we offer our support to Americans with Alzheimer's relationship with the different phases of Alzheimer's disease, we also recognize those who care and provide for disease at different stages of medicine development them, sharing their loved ones' emotional, physical, and (mechanism of action, use as diagnostic test, financial strains. This month, we honor their compassion, enrichment of study populations, stratification of remember those we have lost, and press toward the next subgroups, safety and efficacy markers, etc.); great scientific breakthrough. • design of long-term efficacy and safety studies; NOW, THEREFORE, I, BARACK OBAMA, President of the • usefulness of combination therapy and corresponding United States of America, by virtue of the authority vested study designs. in me by the Constitution and the laws of the United States, do hereby proclaim November 2013 as National The comments submitted on the concept paper will be Alzheimer's Disease Awareness Month. I call upon the considered in the development of the revised guideline. people of the United States to learn more about Comments should be sent to Alzheimer's disease and support the individuals living with [email protected] by 31 January 2014 this disease and their caregivers. using the template provided. IN WITNESS WHEREOF, I have hereunto set my hand this www.ema.europa.eu/ema/index.jsp?curl=pages/news_and_events/news/20 13/10/news_detail_001938.jsp&mid=WC0b01ac058004d5c1 thirty-first day of October, in the year of our Lord two thousand thirteen, and of the Independence of the United Dementia in Society States of America the two hundred and thirty-eighth. www.whitehouse.gov/the-press-office/2013/10/31/presidential- 31 October: President Obama proclaims National proclamation-national-alzheimers-disease-awareness-month-20 Alzheimer's Disease Awareness Month New Publications & Resources The US president has proclaimed November 2013 as "National 16 September: WHO Europe publishes a Mental Alzheimer's Disease Awareness Health Action Plan Month". The full text of the proclamation is shown below. In September 2013, the WHO Regional Committee for Alzheimer's disease is an Europe agreed on a European irreversible and progressive brain Mental Health Action Plan for disease that slowly erodes precious 2014–2020. This will help countries improve their memories, thinking skills, and the populations’ mental well-being and reduce the burden of ability to perform simple tasks. It affects millions of mental disorders. Americans, including senior citizens as well as younger Americans with early-onset Alzheimer's disease. This Mental disorders are one of the top public health month, we stand with everyone confronting the painful challenges in the WHO European Region, as measured by reality of an Alzheimer's diagnosis; lend our support to prevalence, burden of disease and disability, affecting the families who care for them; and renew our more than a third of the population every year. In all commitment to delaying, preventing, and ultimately countries, most mental disorders are much more curing this disease. prevalent among those who are most deprived. In research labs across our country and around the world, The European Mental Health Action Plan focuses on seven scientists are working to unlock the answers to interlinked objectives and proposes effective and Alzheimer's disease. My Administration proudly supports integrated actions to strengthen mental health and well- this promising research. Earlier this year, I proposed the being in the European Region. Investing in mental health Brain Research through Advancing Innovative is essential for the sustainability of health and social Neurotechnologies (BRAIN) Initiative, which aims to policies in the European Region. revolutionize our understanding of the human brain. By This document contains a draft European Mental Health mapping the brain, we hope to better comprehend the Action Plan that corresponds to the four priority areas of causes of disorders like Alzheimer's disease and enhance the new European policy framework for health and well- our work on improving treatment. In September, the being, Health 2020, and will contribute directly to its National Institutes of Health announced support for implementation.

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The Action Plan was developed in close consultation with population and may even increase the maximum working Member States, guided by the Standing Committee of the age. Health R&D investments also have the potential to WHO Regional Committee for Europe. It is available for provide high economic yields, both in terms of return on download on the WHO Europe website. investment and deploying a highly educated workforce with technical skills. www.euro.who.int/en/health-topics/noncommunicable-diseases/mental- health/publications/2013/the-european-mental-health-action-plan The report can be downloaded from Janssen's website.

1 October: Commission publishes "Improving www.janssen-emea.com/reports/health/investment-study health for all citizens" booklet 21 October: New guide to outdoor living spaces On 1 October 2013, the European Commission presented for people with dementia its new publication "Improving health for all EU citizens". This publication is a part of a series that explains what the Fondation Médéric Alzheimer EU does in different policy areas, why the EU is involved (FMA) has published an and what the results are. English-language version of their very popular report on The publication explains why we need a public health outdoor spaces. policy, how the EU goes about it and what the EU does. It also gives a list of useful links. “Gardens: Outdoor living spaces for the well-being of people with Alzheimer’s disease and their entourage” http://ec.europa.eu/health/health_policies/docs/improving_health_for_all_e u_citizens_en.pdf analyses the operational features of twenty-one gardens in care homes and day care centres that are supported by 1 October: New US website for people with FMA. The results are mainly based on site surveys - dementia including observation, interviews with professionals, residents and families - but also on seminars and reports The US Alzheimer's Association has launched a website from field teams. called "I Have Alzheimer's Disease" that contains a wealth of information and advice for people living with dementia. Results were gathered over several years and show a growing interest in outdoor spaces and their The website includes special sections for dealing with a development. There is a huge diversity of practices and dementia diagnosis, planning for the future and examples of creating and maintaining outside spaces that overcoming stigma, with a notable section on early onset are attractive and lively. It is quite clear that such spaces dementia. provide resources and benefits to people with cognitive impairments. Gardens are often perceived as privileged places, as they www.alz.org/i-have-alz/i-have-alzheimers-dementia.asp are meeting points between the care home and the outside world. They provide a space for pleasant and 13 October: Janssen and Deloitte publish new memorable activities, which help to improve the living health report environment and quality of life of the residents. In A new report entitled “Investing in European health R&D” addition, many care home residents are keen gardeners, shows that European research and development (R&D) actively participating in its operation and upkeep. investments in health have stagnated since 2010 and this Residents are also routinely consulted on design, is the first time after decades of annual increases. The landscaping and other future plans for outdoor spaces. In report was commissioned by Janssen Pharmaceutica and this sense, a garden becomes a living space that residents, the research was conducted by Deloitte Health Economics care professionals, family members and visitors can all call group. their own. According to the report, this decline is due to the current The report is available free of charge on the foundation's economic situation, reinforced by the uncertainty about website. future market conditions, and increasingly limited reward www.fondation-mederic- mechanisms for innovative technologies, amongst others. alzheimer.org/content/download/16665/73747/file/Report%20GARDENS%20 The findings are worrying in the light of Europe’s FONDATION%20MEDERIC%20ALZHEIMER%20September%202013.pdf increasing disease burden and aging population, as well as 28 October: New resource for people with the millions of people whose health cannot be improved dementia in Ireland without new health care approaches. The Alzheimer Society of Ireland has Healthcare costs in Europe are expected to increase to 12- launched a new booklet entitled "I have 15% of GDP by 2030. The report concludes that increased dementia...How do I plan for the future?" health R&D investment is even more important to address in the context of growing healthcare expenditure. The aim of this new resource is to help people with early stage dementia and their families to plan for their future. For example, new technologies improve the quality of It provides accessible information and signposting around healthcare provision, leading to improved outcomes and financial, legal, health and care planning. Helen Rochford increased life expectancy. New technologies also lead to Brennan, a member of the Irish Working Group of People efficiency gains, as their cost tends to decrease over time with Dementia, kindly gave her time and support to this for both medicines and medical devices. Improved health project. leads to better productivity among the working

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The booklet is part-funded by the Irish Hospice Project Officer (m/f) (Full time) Foundation and can be downloaded on the society's website. As the Project Officer, you will: www.alzheimer.ie/Alzheimer/media/SiteMedia/Helpline%20and%20Informat • Collaborate with the organisation’s national member ion%20Resources/publications/Alzheimers_PlanForFuture-Brochure_web1- associations in the development of national reports (1).pdf on dementia policies 29 October: New report on managing BPSD - • Develop and update databases on clinical trials and behavioural and psychological symptoms of diagnostic and treatment guidelines in Europe dementia • Support the development of project applications towards EU programmes Australia's Dementia Collaborative Research Centres • Help in the dissemination of EU funded research (DCRC) have published a report entitled "Managing projects. Behavioural and Psychological Symptoms of Dementia". You should have the following experience and qualities: This is a guide to good practice for managing behavioural and psychological symptoms of dementia (BPSD). It aims • Completed university education and/or significant to provide guidance for clinicians in their role of assisting experience in a similar position (education or residential aged care facility staff, community care staff background in communication or project and family members caring for persons living with management will be considered as an advantage) dementia who present BPSD symptoms. • A perfect knowledge of English (additional languages The report includes a comprehensive evidence and would be considered a plus) practice-based overview of BPSD management principles, • Excellent writing skills as well as practical strategies and interventions for • Good computer knowledge (Internet applications, assisting care staff and family carers to manage Word) behaviours in dementia. The empirical evidence contained • A keen sense of responsibility and initiative in this guide, in combination with clinical expertise, may assist in achieving improved outcomes for those with • Willingness to work in a small team. dementia. Finance Officer (m/f) (Part time) The report can be downloaded on the DCRC website. As the Finance Officer, you will: http://dementiaresearch.com.au/images/dcrc/output-files/328- 2012_dbmas_bpsd_guidelines_guide.pdf • Deal with daily book keeping, invoicing and financial monitoring of the organisation Job opportunities • Prepare monthly financial reports • Prepare annual financial reports for audit purposes 29 October: AE is hiring Communications, Project • and Finance Officers Develop annual budgets • Prepare budgets and monitor accounts of EU projects Alzheimer Europe is accepting applications for the • Support fundraising activities. following positions: You should have the following experience and qualities: Communications Officer (m/f) (Full time) • Completed university education and/or significant • As the Communication Officer, you will: experience in a similar position (education or • Edit the association’s newsletter background in accounting, financial management or • Maintain and update the association’s website fundraising will be considered as an advantage) (www.alzheimer-europe.org) • A perfect knowledge of English and French (additional • Develop the organisation’s social media presence. languages would be considered a plus) • Excellent accounting skills You should have the following experience and qualities: • Good knowledge of accounting software and other • Completed university education and/or significant computer programmes (Internet applications, Excel) experience in a similar position (education or • A keen sense of responsibility and initiative background in communication or journalism will be • considered as an advantage) Willingness to work in a small team. • A perfect knowledge of English (additional languages Please apply by sending your CV, together with a cover would be considered a plus) letter, by 22 November 2013, to: Alzheimer Europe, 145, • Excellent writing skills route de Thionville, L-2611 Luxembourg or via e-mail to [email protected] • Experience of social media • Good computer knowledge (Internet applications, Word) • A keen sense of responsibility and initiative, • Willingness to work in a small team.

www.alzheimer-europe.org/Donation

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Contact Alzheimer Europe: Alzheimer Europe, 145 route de Thionville, L-2611, Luxembourg [email protected], www.alzheimer-europe.org Alzheimer Europe Board Chairperson: Heike von Lützau-Hohlbein (Germany); Vice-Chairperson: Iva Holmerová (Czech Republic); Honorary Secretary: Charles Scerri (Malta); Honorary Treasurer: Maria do Rósario Zincke dos Reis (Portugal); Members: Patrick Maugard (France), Maurice O’Connell (Ireland), Sirpa Pietikäinen (Finland), Helga Rohra (Germany), Alicja Sadowska (Poland), Henry Simmons (UK - Scotland). Alzheimer Europe Staff Executive Director: Jean Georges; EU Public Affairs Advisor: Annette Dumas; Administrative Assistant: Kate Ellis; Editor – Dementia in Europe Magazine: Julie Fraser; Information Officer: Dianne Gove; Conference and Event Coordinator: Gwladys Guillory; Communications Officer: Alex Teligadas; Administrative Assistant: Grazia Tomasini.

AE Calendar 2013

Date Meeting AE Representative 5 November AGE Platform launch of its EU campaign Manifesto, (Brussels, Belgium) Annette 14 November Conference “It is Time to Care” (Rome, Italy) Jean 22 November GSK Health Advisory Board (London, United Kingdom) Jean 25 November EIP AHA conference of partners (Brussels, Belgium) Annette 27 November Scientific Advice Meeting at European Medicines Agency (London, United Kingdom) Jean 2-3 December AE Board meeting, EP Lunch debate and corporate meeting (Brussels, Belgium) AE Board and staff 10-11 December EMA working party for CHMP WPCP meeting (London, UK) Jean & Alex 11 December NILVAD project meeting (London, UK) Alex 12-13 December EMIF project - 2nd AD General Assembly (Amsterdam, the Netherlands) Alex Future Conferences

Date Meeting Place 14-16 November 2013 6th annual conference Clinical Trials for Alzheimer’s disease CtaD 2013, www.ctad-alzheimer.com San Diego, USA 22 November 2013 Open Info Day - Horizon 2020 "Health, demographic change and wellbeing", Brussels, Belgium http://ec.europa.eu/research/health/horizon-2020-health-open-info-days_en.html 8-9 December 2013 2nd Middle East and North Africa Conference of Alzheimer’s Disease International, Dubai, UAE www.adidubai2013.org 11-14 December 2013 The 16th Asia Pacific regional Conference of Alzheimer’s disease international, www.aprc2013- Hong Kong & Macau, China hongkong-macau.com th 20-22 March 2014 58 Annual meeting of the German society for clinical neurophysiology and functional imaging Berlin, Germany (DGKN), www.dgkn-kongress.de 20-23 March 2014 30th International Congress of Clinical Neurophysiology of the IFCN (ICCN), www.iccn2014.de Berlin, Germany 26-29 March 2014 13th Int. Geneva/Springfield Symposium on Advances in Alzheimer Therapy, www.ad-springfield.com Geneva, Switzerland 8-11 May 2014 8th World Congress on Controversies in Neurology (CONy), www.comtecmed.com/cony/2014/ Berlin, Germany 31 May-3 June 2014 EFNS-ENS Joint Congress of European Neurology, www.JointCongressofEuropeanNeurology.org Istanbul, Turkey 26-27 June 2014 International Dementia Conference, "Risky Business 2 – this time it's personal!", Sydney, Australia http://www.dementiaconference.com/call-for-papers 5-9 July 2014 9th FENS Forum of Neuroscience, http://forum.fens.org/2014 Milan, Italy 20-22 October 2014 24th Alzheimer Europe Conference “Dignity and autonomy in dementia”, www.alzheimer- Glasgow, United Kingdom europe.org/Conferences th 23-25 October 2014 9 International Conference on Frontotemporal Dementias, www.ubccpd.ca Vancouver, Canada

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The Alzheimer Europe newsletter arises from the 2013 Work Plan of Alzheimer Europe, which has received funding from the European Union in the framework of the Health Programme.

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NEWSLETTER November 2013

launched an open scientific Highlights in this issue Editorial challenge to identify better predictors of AD risk. 6 November: MEP Patriciello 2 In November, we joins the EAA completed the In our member countries, data collection 11 November: IMI to fund AD 9 Switzerland officially adopted its for the 2013 prevention programme first national dementia strategy. Dementia in Poland has made a significant step 15 November: Ombudsman 7 Europe Yearbook advances Polish dementia plan toward government approval of its and also the own draft dementia plan. This is 18 November: Finland forms 5 European also the case in Greece, but we are working group of people with Dementia Monitor. We are very not yet able to provide specific dementia grateful to the many member details. Slovenia is working to 21 November: Switzerland 7 associations and other experts that create its first dementia-friendly adopts national dementia plan contributed to these publications. city and the UK now has dementia- 21 November: EP approves 4 We also attended some interesting friendly banks. Finland has Horizon 2020 programme meetings, including the European inaugurated a working group of Patients’ Forum launch of its EU people with dementia and we also campaign manifesto and a have a report on the activities of conference on palliative care with the Scottish Dementia Working

Italy's Alzheimer Uniti. Group. France, which still awaits In Brussels, we were pleased to the approval of its fourth dementia plan, has launched a new online welcome MEP Aldo Patriciello to the European Alzheimer's Alliance. carer's guide while Norway has The European Parliament released an iPhone application for approved the Horizon 2020 carers. (H2020) programme, which is due We also report on new learning to launch in January 2014 with a opportunities, as King's College EUR 70.2 billion budget. The London and Stirling University Commission is calling for new have launched new dementia H2020 experts and we are glad to courses. In addition, the Royal report that Alzheimer Europe is College of Nursing released a new already in demand as a potential guide that aims to improve partner in several new projects. collaboration between carers and The Parliament also approved the health care workers. Table of contents overall 2014 EU budget and will As the year draws to a close, we Editorial ...... 1 likely sign off the new European Health Programme early in the are planning our activities for Alzheimer Europe ...... 2 new year. 2014. Our first lunch debate will take place in February, featuring European Alzheimer's Alliance...... 2 The Innovative Medicines Initiative IMI's important role in funding Alzheimer Europe Networking ...... 2 (IMI) launched a call for proposals research projects for Alzheimer's for an Alzheimer's disease disease. The next issue of our EU Developments ...... 3 prevention programme and the Dementia in Europe magazine will Members’ News ...... 4 JPND issued a new tool for project appear at the same time, including partners. At the same time, the coverage of our 2013 Annual Policy watch ...... 7 EMA is reviewing an unexpectedly Conference in Malta and insights Science Watch ...... 7 large number of comments into the upcoming European regarding its new position on elections. Dementia in Society ...... 10 access to clinical trial data. New Publications & Resources...... 10 On behalf of all Alzheimer Europe On the research front, there are Board and staff members, I would AE Calendar 2013 ...... 12 two new Phase 2 clinical trials for like to wish our readers an AD: one will test an existing anti- Future Conferences ...... 12 enjoyable and restful holiday! psychotic drug and the other will investigate the beneficial effects of Jean Georges nerve growth factor. In addition the Global CEO Initiative has Executive Director

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monitor presents simple information in an easily Alzheimer Europe accessible format, comparing the prevalence of dementia, 30 November: Alzheimer Europe completes diagnostic guidelines and infrastructure, availability of medicines and access to clinical trials and care. collection of project data Alzheimer Europe would like to thank all the contributors European Alzheimer's Alliance who participated in the 2013 Dementia in Europe Yearbook and European Dementia Monitor projects. 6 November: MEP Patriciello joins the Alliance The Yearbook provides detailed information on national On 6 November, Aldo Patriciello, MEP (Italy) policies relating to the care and support of people with joined the European Alzheimer’s Alliance. dementia and their carers in 28 countries. This includes He belongs to the Group of the European the provision of care, the training of healthcare People's Party (EPP). professionals and social care staff, and support at home, Mr Patriciello sits on the Committee on in the community and in nursing homes. The report also Budgetary Control and also on the Committee on features details on the prevalence of dementia in 33 Industry, Research and Energy. European countries. The European Dementia Monitor is a benchmark of national dementia policies in the same 33 countries. The Alzheimer Europe Networking On 5 November (Brussels, Belgium), Annette participated in the European Patients’ Forum launch of its EU campaign manifesto. On 13 November (Brussels, Belgium), Annette attended the events "Long-term care – what challenges for Europe?" organised by the European Institute of Health and "Right to live, right to die – euthanasia debate" organised by the Goethe Institute. On 14 November (Rome, Italy), Jean attended the Anniversary Conference of Fondazione Roma “It is Time to Care”. On 18 November (Brussels, Belgium), Annette met Claudia Kuerzl, assistant of Joseph Cuschieri, MEP (Malta). On 22 November (London, United Kingdom), Jean attended the GSK Health Advisory Board. On 25 November (London, United Kingdom), Jean participated in the Scientific Advice Meeting at European Medicines Agency. On 25 November (Brussels, Belgium), Annette attended the EIP AHA conference of partners, with Grainne McGettrick (Alzheimer Society of Ireland) and Charles Scerri (Malta Dementia Society and Alzheimer’s disease Research Group – University of Malta). On 26 November (Brussels, Belgium), Alex attended a Cardiff University conference on “Basic mechanisms in neurodevelopmental disorders: from research to clinical impact”. On 2-3 December (Brussels, Belgium), AE Board and staff attended the AE Board meeting, EP lunch debate and corporate meeting. On 5 December (Brussels, Belgium), Annette attended the Eurodiaconia event on "Active ageing for the oldest".

Members of the European Alzheimer’s Alliance

Austria: Becker K. Heinz (EPP), Werthmann Angelika (NI). Belgium: Demesmaeker Mark (Greens/EFA), Ries Frédérique (ALDE), Staes Bart (Greens/EFA), Tarabella Marc (S&D). Bulgaria: Parvanova Antonyia (ALDE). Cyprus: Triantaphyllides Kyriacos (GUE-NGL). Czech Republic: Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP). Denmark: Christensen Ole (S&D), Rohde Jens (ALDE), Schaldemose Christel (S&D). Finland: Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli (ALDE), Pietikäinen Sirpa (EPP). France: Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise (EPP), Juvin Philippe (EPP), Morin-Chartier Elisabeth (EPP), Pargneaux Gilles (S&D). Germany: Niebler Angelika (EPP), Roth-Behrendt Dagmar (S&D), Ulmer Thomas (EPP). Greece: Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni (S&D), Kratsa-Tsagaropoulou Rodi (EPP). Ireland: Aylward Liam (ALDE), Childers Nessa (non-attached), Crowley Brian (ALDE), McGuiness Mairead (EPP), Mitchell Gay (EPP). Italy: De Martini Susy (ECR), Panzeri Pier Antonio (S&D), Patriciello Aldo (EPP), Toia Patrizia (S&D). Lithuania: Blinkeviciute Vilija (S&D). Luxembourg: Engel Frank (EPP), Lulling Astrid (EPP). Malta: Cuschieri Joseph (S&D). Netherlands: De Lange Esther (EPP), van Nistelrooij Lambert (EPP), Wortmann-Kool Corien (EPP). Poland: Łukacijewska Elżbieta (EPP). Portugal: Carvalho Maria da Graça (EPP), Coelho Carlos (EPP), Matias Marisa (GUE/NGL). Romania: Antonescu Elena Oana (EPP), Sârbu Daciana Octavia (S&D), Tanasescu Claudiu Ciprian (S&D). Slovakia: Mikolasik Miroslav (EPP), Zaborska Anna (EPP). Slovenia: Kleva Kekuš Mojca (S&D), Peterle Alozj (EPP). Spain: Badia i Cutchet Maria (S&D), Estaràs Ferragut Rosa (EPP). United Kingdom: Anderson Martina (GUE-NGL), Ashworth Richard (ECR), Hall Fiona (ALDE), McAvan Linda (S&D), McCarthy Arlene (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Taylor Keith (Greens/EFA), Vaughan Derek (S&D), Watson Graham (ALDE), Willmott Glenis (S&D), Yannakoudakis Marina (ECR).

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to clinical trial data, which ran during June-September EU Developments 2013. 5 November: AGE Platform Europe launches EU The Agency is grateful for this exceptional contribution election manifesto from its stakeholders. The large number of comments received will likely delay the finalisation of the policy On 5 November, AGE Platform Europe launched its initially planned for the end of 2013. An update will be manifesto for the European elections 2014 in the provided following the EMA Management Board meeting European Parliament. The event was co-hosted by MEPs on 11-12 December 2013. Claude Moraes and Lambert van Nistelrooij. They are both Vice-Chairs of the Intergroup on ageing and solidarity The Agency is developing a policy on publication and between generations in the EP and also members of the access to clinical trial data because it believes that the European Alzheimer’s Alliance. release of data is about establishing trust and confidence in the system. The Agency also believes that availability of The manifesto suggests concrete actions for candidate data broadens the scientific knowledge base, fosters MEPs to build a society for all ages, free from innovation and encourages investment in the discrimination and presents AGE’s priorities and development of medicines and ultimately benefits public recommendations. These include promoting EU health. citizenship among senior Europeans, encouraging people to vote and highlighting relevant dossiers for older www.ema.europa.eu/docs/en_GB/document_library/Press_release/2013/11 persons to candidate MEPs. /WC500154207.pdf AGE’s manifesto is based on the organisation’s campaign “Towards an age-friendly EU by 2020”, launched on the occasion of the European Year 2012 on ageing and solidarity between generations. It also serves to raise www.alzheimer-europe.org/Donation awareness among EU citizens about the concrete role of MEPs in addressing elderly concerns and to encourage EU 19 November: European Parliament approves citizens to vote in large numbers at the elections. long-term EU budget www.age-platform.eu/age-and-the-eu-institutions/european-parliament/ep- elections-2014 On 19 November, the Parliament approved the EU’s budget for 2014-2020, the so-called Multi-annual 13 November: New European Health Programme Financial Framework (MFF). The EU now has an to be approved in spring 2014 investment plan for the next seven years that includes EUR 960 billion in financial commitments and EUR 908 On 13 November, the European Commission presented an billion in payments. update for the 2014-2020 Multiannual Health Programme. The new Health Programme will likely be The budget includes an additional EUR 2.5 billion for adopted by the European Parliament in spring 2014. policy priorities that include Horizon 2020, the new EU health programme. The new budget also allows for Following adoption, the Commission will publish the 2014 greater flexibility between budget years and categories, Annual Work Programme and calls for proposals will be while a mid-term review by 2016 will enable the next launched by the Executive Agency of Health and Parliament to reassess the EU’s budgetary priorities. Consumers. The new programme will have a budget of EUR 449.4 million over seven years. The EU ministers will approve the MFF on 2 December 2013. The general objectives of the Programme are to complement, support and add value to the policies of the www.europarl.europa.eu/news/en/newsroom/content/20131118IPR25541/html/European-Parliament-approves- Member States to improve the health of EU citizens and EU%E2%80%99s-long-term-budget-(MFF)-2014-2020 reduce health inequalities by promoting health, encouraging innovation in health, increasing the 20 November: Structural and Investment Funds sustainability of health systems and protecting Union will stimulate public and private investments citizens from serious cross-border health threats. On 20 November, the European Parliament adopted a http://ec.europa.eu/health/programme/policy/2014- legislative package on cohesion policy ensuring a total 2020/state_of_play_en.htm http://ec.europa.eu/health/programme/docs/healthpgm_pres_nov2013_en. budget of over EUR 325 billion for the European Regional pdf Development Fund (ERDF), the European Social Fund (ESF) www.eu2013.lt/en/news/unions-program-to-reduce-health-inequalities- and the Cohesion Fund (CF). promote-innovation-in-health- In these times of vast public debt, risk aversion and a 13 November: EMA reviews comments from severe lack of public spending, European funding aims to consultation on access to clinical trial data stimulate public and private investments and provide means for long-term investments for SMEs, innovation and infrastructure. The European Structural and Investment Funds deliver The European Medicines Agency is currently reviewing major investments in times of economic crisis. Continued more than 1,000 comments received during the public funding of important projects in all regions in the consultation on its draft policy on publication and access European Union plays an extremely important role and

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also creates an opportunity for growth and smart improvements. Members’ News

www.eppgroup.eu/press-release/More-money-for-flexible-investments- 31 October: Norwegian phone app leads to the across-the-EU Dementia Helpline 20 November: European Parliament approves The Norwegian Health Association has 2014 EU budget released an iPhone application that On 20 November, the European Parliament approved the provides a direct link to the telephone 2014 EU budget, which will take effect as planned on 1 Dementia Helpline and supplies January 2014. information about dementia. The budget has seen an increase of EUR 500 million for The app was developed after research results showed that payments and also conforms to the EP and Council people often hesitated - sometimes for months - to use agreement of 12 November to remedy payments the helpline after seeing ads for the service. shortfalls in the current fiscal year. The Dementia Helpline is very prominent www.europarl.europa.eu/news/en/news- when the app is opened, but there are room/content/20131118IPR25540/html/Parliament-approves- also pointers on the earliest signs of EU%E2%80%99s-2014-budget-and-plugs-2013-payment-gaps dementia, the most common forms of 21 November: Parliament adopts the Horizon 2020 dementia and how to start that difficult package conversation when someone in your family is starting to show signs of more On 21 November, the European Parliament adopted the than normal forgetfulness. Horizon 2020 package with a EUR 70.2 billion budget for 2014-2020. The largest budget items are "Societal 1 November: Slovenia's Šentjur is becoming a challenges" (39% of the total budget), "Excellent science" dementia-friendly city (32%) and "Industrial leadership" (22%). The MEPs Zlata Felc, head of the regional Šentjur approved the following elements of the package: Alzheimer Association, looks back at the 2013 • Teresa Riera Madurell's (Spain) draft regulation on activities that are helping to make Šentjur the the establishment of Horizon 2020. first dementia-friendly city in Slovenia. • Maria Da Graça Carvalho's (Portugal) draft regulation The activities began in May, with a round-table discussion on the specific programme implementing Horizon that generated ideas and practical ways on how Šentjur 2020. could be friendlier for people with dementia. • Christian Ehler's (Germany) draft regulation on rules In June, the association formally launched the dementia- for participation. friendly project - the first of its kind in Slovenia - in • Philippe Lamberts' (Belgium) draft regulation on the cooperation with the Mayor of the city. The main European Institute for Innovation and Technology objective is for Šentjur to be recognised as a dementia- (EIT). friendly city in 2014, with improvements in the actions of • Marisa Matias' (Portugal) draft regulation on EIT's local agencies, businesses and community groups. This strategic innovation agenda. includes higher awareness of the needs of people with dementia and their carers, in order to make socialising, The programme must be formally adopted by the shopping, eating out and using public transport and other Member States before taking effect on 1 January 2014. amenities a more enjoyable experience for everyone. www.europarl.europa.eu/news/en/newsroom/content/20131115IPR24730/html/Horizon-2020-research-programme- Finally, in November 2013, the association conducted more-support-for-small-firms-and-new-players training sessions for public and private employees as well as social and health workers. These were very popular and 22 November: Commission launches call for the participants returned many positive comments after Horizon 2020 experts the sessions. The European Commission has launched a call for new Zlata and her colleagues are very pleased with the independent experts to act as peer reviewers in progress of the project, which will help maintain and raise evaluating proposals and reviewing projects within the the confidence of people in the earlier stages of new Horizon 2020 programme. Their assignments will dementia, as well as their ability to manage everyday mainly concern research and technological development, living. similar to the current FP7 programme. New applicants are invited to register their profiles, while experts that are already registered for FP7 need to declare their interest in working for Horizon 2020 as well.

http://ec.europa.eu/research/participants/portal/page/experts

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1 November: France Alzheimer releases online further train staff on the issues around dementia and to guide for caregivers improve practices on an on-going basis. France Alzheimer has released an online Henry Simmons, Chief Executive of Alzheimer Scotland, guide for caregivers to help them better said: “We are absolutely delighted to be able to work so understand the specifics of Alzheimer’s closely with Bank of Scotland in generating this model of disease and discover the best practices for daily care. The Dementia-Friendly Banking. Managing money is a major guide is intended to complement the association's concern for people with dementia, their carers, partners training programmes but also functions as an and families. It is vital that the financial sector recognises independent resource. the difficulties involved and is knowledgeable and sympathetic about the help they can provide.” The new "Guide d’accompagnement en ligne" includes videos that demonstrate the progress of dementia in the 18 November: Finnish working group of people brain and a 3D model of a home with a dementia-friendly with dementia holds first meeting layout and features. There are also extensive FAQ and documentation sections, including real-life advice and The inaugural meeting of the experiences of people with dementia and their caregivers. new Finnish working group of people with dementia and The new online guide is freely available on France their caregivers took place on 18 November in a warm Alzheimer's website. and enthusiastic atmosphere. http://guide.francealzheimer.org The group, chaired by Marja-Leena Alho, will work as an 14 November: Alzheimer Uniti and Alzheimer independent expert group of the Alzheimer Society of Finland. Members will comment on topical issues and Europe attend AD conference highlight important themes, ideas and views which could On 14 November, Dr. Luisa Bartorelli, otherwise be overlooked. Raoul Grönqvist and Milja Ahola President of Alzheimer Uniti Onlus (Italy) shared their experiences from the European Working and Jean Georges, Executive Director of Group of People with Dementia and best practices were Alzheimer Europe, attended a conference adopted in the organisation of the Finnish group. on Alzheimer's disease care in Rome. The The first meeting featured lively discussion on various "Time to Care" conference was hosted by Fondazione th important topics, including the difficulties of recently Roma on the occasion of the foundation's 15 year of diagnosed persons in reaching local memory associations activities. and the loneliness of people with dementia. The group The main subjects were the continual care and treatment members also discussed how voluntary work could be for people with chronic and progressive diseases such as branded and marketed more efficiently. Alzheimer’s disease and amyotrophic lateral sclerosis In December 2013, the group will meet again to comment (ALS) and also palliative care. on the draft law concerning the self-determination of Jean Georges gave an overview of the situation regarding people with dementia, especially with regard to restrictive dementia in various countries in Europe, highlighting measures. In 2014, the group is planning to meet at least those that make dementia a priority and that have three times. created National Dementia Plans. Dr. Bartorelli gave a presentation on care strategies for people with dementia, including non-pharmacological interventions.

21 November: FAI's Gabriella Salvini Porro attends Vatican conference Dr. Gabriella Salvini Porro, 18 November: Bank of Scotland is now dementia- President of Federazione friendly Alzheimer Italia, attended the 28th International Conference of the Pontifical Council for Health Care Bank of Scotland has become Scotland’s first Workers, which took place during 21-23 November in official Dementia Friendly Bank, in Vatican City. partnership with Alzheimer Scotland. The conference was entitled "The Church at the Service of The bank and the association have been working closely Elderly People: Care for People with Neurodegenerative to deliver awareness-raising and information resources to Pathologies" and was attended by over 700 health branch colleagues, which will help them provide a more professionals from some 60 countries. Dementia Friendly service to people with dementia, their Dr. Salvini Porro, a speaker during the panel session "The families and carers. The bank has also committed to Elderly Person with Neurodegenerative Illnesses", gave a

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presentation about the needs of the family of a person with dementia being given more choice - such as the with dementia. possibility of informing their bank directly about their diagnosis, to allow for more tailored customer care- 28 November: Alzheimer Portugal attends provision. conference on dementia care Jeremy Hughes, Chief Executive of the Alzheimer's Representatives from Alzheimer Portugal Society, said: "Lloyds Banking Group has recognised its recently attended a conference entitled responsibility to customers affected by dementia and is "Care in Dementia - a Practical and Integrated taking positive steps towards improving the service Approach". offered to people with the condition and their carers. Alzheimer's Society would like to see the whole financial More than 200 delegates, including health professionals services sector signing up to the charter, so that managing and social service advocates, attended the conference. money does not add to the list of worries people with Delegates heard presentations and then held discussions dementia and their carers can often face." on the following case studies: 1. Early-onset dementia 30 November: Scottish Dementia Working Group looks back at 2013 2. Caregiver overload This article is a personal account by Peter 3. The need for timely dementia diagnosis McLaughlin and David Mackenzie, Vice Chairs of the Scottish Dementia Working 4. People with dementia living in isolation Group (SDWG), on the achievements of 5. Provision of care-performance limits of family and the group during 2013. professionals. So much has changed in 2013 and we both find that we The timeliness and relevance of the case studies are now starting to establish ourselves. At first everything contributed to a rich discussion and a sharing of we were doing just seemed like a series of disconnected experiences. These included accounts from professionals events but through time, we came to see how everything who encounter - on a daily basis - alarming situations of we did connected. All of the groups different activities people with dementia who live alone in unhealthy have the purpose of removing many of the unnecessary conditions, without any family support and often without hassles faced by people with dementia as we possibly can. water or light. There were also real-life accounts of the We have established a number of priorities in pursuit of challenges faced by people with dementia when they visit that goal. These include early diagnosis, improved hospital emergency rooms and other vulnerable nationwide access to post diagnostic support and a well situations. trained workforce. People in these situations usually lack any form of There have been great improvements in the past year protection and are thus at grave risk of being abused or thanks to initiatives from Alzheimer Scotland. The 5 Pillar treated arbitrarily, with no one to represent them or Model of Post Diagnostic Support is now Scottish defend their best interests. For these people, no legal or Government policy, meaning that anyone diagnosed with social solutions can be appropriate or timely enough. dementia in Scotland from April 2013 should receive support from a named link worker to help them come to Alzheimer Portugal is a strong supporter of all initiatives terms with their diagnosis and plan for the future. The to uphold the rights and improve the quality of life of Scottish Dementia Working Group was consulted and had people with dementia and their caregivers. a significant input while this was being formulated. In addition to this, new posts have been established. The introduction of Dementia Advisors in Scotland is a step forward with huge potential to make life easier for many people.

We are regularly involved in the training of both 30 November: UK banks introduce dementia- professionals and volunteers, lecturing to nurses, medical friendly policies students, allied health professionals, doctors, social The UK Alzheimer's Society, workers, post diagnostic link workers, helpline volunteers, along with Lloyds Banking hospice staff, care home staff and psychology students. Group and other partners, has We get a lot of positive feedback from the students and launched a "Dementia-friendly financial services charter" their lecturers via social media. We are often told that for banks and insurers. The charter aims to make financial listening to our members gives trainee professionals more institutions more dementia-friendly, thereby allowing insight and information than they could ever get from people with dementia to retain as much dignity and lectures and books. autonomy as possible where their financial affairs are concerned. We have so many requests for assistance in research that Dot Weaks, one of our co-opted members, has The charter suggests ways in which financial institutions established a sub-group to select those requests that are can become more user-friendly for people with dementia suitable and in keeping with our own priorities. and their carers. This includes “Champions” being appointed in branches to lead the initiative and customers

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We have a Newsletter sub-group to keep members release, the association expressed its global approval of informed about member and staff activities, a Transport the plan and pointed out that each individual canton must sub-group looking into ways which make transport easier now take the appropriate steps to ensure its success. for people with dementia to use thereby increasing our www.alz.ch/tl_files/PDFs/PDF-F- independence and an Information Technology group Gesellschaft%20und%20Politik/MM+Strategie+Demenz_NCD_FR.pdf which can help to get us familiar with computers and www.alz.ch/tl_files/PDFs/PDF-F- tablets. Medienmitteilungen/Strategie%20nationale%20Alzheimer%20- %20Association%20Alzheimer.pdf Great things have happened in the last year thanks to Alzheimer Scotland. They have been with the Scottish Dementia Working Group all the way, supporting us and more importantly listening to us as the "independent voice of people with dementia". We believe we can have www.alzheimer-europe.org/Donation even more of an impact in 2014 as we grow in confidence and experience. 25 November: UK Health Secretary receives letter from AD associations ahead of G8 dementia Summit The heads of the UK Alzheimer's Society, Alzheimer’s Research UK and ADI have presented a letter to UK Health Secretary Jeremy Hunt ahead of the G8 Dementia Summit on 11 December.

The letter calls for a collaborative global action plan on dementia research, a significant increase in funding for L-R: David Mackenzie, Peter McLaughlin, Henry Rankin that research, and help in attracting, developing and (Chair of SDWG). retaining the best scientists, clinicians and care www.sdwg.org.uk professionals. This letter follows the similar "St. Julian’s Appeal to G8 Policy Watch Dementia Summit" that was adopted by Alzheimer 15 November: Polish ombudsman receives draft Europe and its member organisations, including the Alzheimer's Society, on 10 October 2013. national dementia plan www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2019 On 15 November, representatives of www.alzheimer-europe.org/News/Alzheimer-Europe/Thursday-10-October- the Polish Alzheimer's Association and 2013-Alzheimer-Europe-calls-on-G8-to-step-up-international-research- efforts-on-dementia the Polish Alzheimer Coalition held a conference at the request of the Office of the Polish Ombudsman. Science Watch During the conference, they gave several presentations on 3 October: Autophagy mediates the formation of the status of people with dementia and their caregivers in amyloid plaques Poland. They also presented a conference report and a draft of the national Polish dementia plan to Ombudsman A recent Japanese study has shown that a lack of Professor Irena Lipowicz. autophagy in neurons prevents the secretion of amyloid beta and the formation of amyloid plaque in the brain. Prof Lipowicz will forward the report and the plan to the Minister of Health, along with an official request to take Autophagy is a cellular cleaning mechanism - similar to a steps enabling adoption and implementation as soon as garbage removal system - that clears protein aggregates possible. and other "trash" from neuron interiors. In Alzheimer's disease, autophagy becomes erratic and loses some of its 21 November: Switzerland adopts national ability to mediate the formation of amyloid plaques. dementia plan In this study, researchers blocked autophagy in an The Swiss federal government and the Alzheimer mouse model to observe the consequences in country's 26 cantons have adopted a amyloid metabolism. The results showed that a complete national dementia plan for the years 2014- lack of autophagy within neurons prevents the formation 2017. of amyloid plaque outside the cells. However, amyloid accumulated inside the neurons and eventually caused The plan is based on the premise that dementia affects neuronal death. not only the individual, but also family members and health professionals. It contains nine objectives that The research team was led by Dr. Takaomi Saido, include greater awareness, individual care strategies and Professor of Molecular Psychiatry and Research Scientist integrated care pathways. The plan also calls for Dr. Per Nilsson, both from the RIKEN Brain Science improvements in early diagnosis and long term care, both Institute in Japan. in people's homes and in specialised institutions. Dr. Nilsson said: "Our study explains how amyloid beta is The Swiss Alzheimer Association has been very active in secreted from the neurons, via autophagy, which wasn't the development of the plan since its inception. In a press well understood. To control amyloid beta metabolism

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including its secretion is a key to control the disease. www.neurology.org/content/early/2013/11/06/01.wnl.0000436620.33155.a Autophagy might therefore be a potential drug target for 4.abstract the treatment of Alzheimer's disease." 7 November: Global CEO Initiative to launch "Big www.cell.com/cell- Data Challenge" for AD reports/retrieve/pii/S2211124713005020?_returnURL=http://linkinghub.else vier.com/retrieve/pii/S2211124713005020?showall=true The Global CEO Initiative (CEOi) on Alzheimer’s Disease has joined forces with Sage Bionetworks and IBM to 1 November: Phase 2 trial will test pimavanserin initiate "AD#1", a computational challenge to identify for AD psychosis better predictors of AD risk in pre-clinical populations. King's College London (KCL) will conduct a Phase 2 clinical Computational challenges are open contests for scientists trial to test the drug pimavanserin for treating psychosis to competitively solve a specific problem in a given time in Alzheimer’s disease. period by placing scientific data, tools, scoreboards and Pimavanserin recently completed a successful Phase 3 the resulting predictive models into a common trial for Parkinson's disease (PD). The trial showed workspace. This technique is also called "gamifying" and significant improvements of psychotic symptoms and a far "crowdsourcing" data analysis. better safety profile than any existing antipsychotic drugs. AD#1 will use data from the Alzheimer's disease These positive findings were also seen in people with PD Neuroimaging Initiative (ADNI), including cognitive, and cognitive impairment, indicating a potential benefit to imaging, biological and whole genome sequencing data on people with Alzheimer’s disease and other dementias. cohorts of volunteers with dementia. The best-performing Prof Clive Ballard, Professor of Age-Related Diseases at predictive models from the challenge will be evaluated KCL and lead author of the paper, said: "The results of this against a similarly structured validation data set. The study are so promising that we are preparing for a phase II winning teams will be featured as lead authors in a trial with ACADIA Pharmaceuticals to look at the efficacy prominent journal article. and safety of pimavanserin for treating psychosis in CEOi is an organisation of private-sector leaders who have patients with Alzheimer’s disease. Psychotic symptoms joined together to provide business leadership in the fight are commonly associated with Parkinson’s disease, against Alzheimer's disease. The organisation seeks to Alzheimer’s disease and other neurodegenerative partner with public leaders to transform the disease from conditions and can cause significant distress to patients a social, health, and economic crisis into an opportunity and their families and caregivers, so a treatment that can for healthy aging and innovation in research and care. safely and effectively reduce these symptoms has the potential to really improve people’s lives." The AD#1 organisers expect the challenge to open in early 2014 with the final scoring of submissions taking place www.kcl.ac.uk/newsevents/news/newsrecords/2013/11-November/New- drug-for-Parkinsons-shows-promise.aspx before the summer. www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)62106- www.synapse.org/#!Synapse:syn2290704 6/abstract www.ceoalzheimersinitiative.org 6 November: Bilingual ability may delay onset of 7 November: JPND releases a Partnering Tool for dementia researchers A new Indian cohort study shows that bilingual people did The EU Joint Programme - Neurodegenerative Disease not show signs of Alzheimer's disease, fronto-temporal Research (JPND) has released a new tool for the dementia or vascular dementia for more than four years researchers that respond to the upcoming JPND calls in longer than those who spoke only one language. December 2013. The study involved 648 people from the Hyderabad region The JPND Partnering Tool allows researchers to present that were diagnosed between 2006 and 2012. Their their research group and expertise in a closed forum, records were examined for data on their specific tailored for JPND, thus making it easier for research diagnoses, socio-demographic variables, dementia partners to locate each other and collaborate on a severity and cardiovascular risk factors such as proposal. hypertension, smoking status and coronary artery disease. The records also included the languages spoken by the Researchers can also register a proposal idea and get patient prior to the onset of dementia. Of the 648 comments from expert scientists and researchers within patients in the study, 257 were monolingual and 391 had the tool. Consortia can then be built around the idea, two or more languages. potentially leading to drafting a proposal on the tool. The results showed that the average age of onset of It is believed that this tool will especially benefit early- Alzheimer's disease, fronto-temporal dementia or career researchers and research groups not normally vascular dementia was 61.1 years in those who were included in established consortia. Experienced monolingual versus 65.6 years in those speaking two or researchers can potentially use the tool to find specific more languages. This difference also applied to individuals expertise which may be missing from their pre-existing who were illiterate and had no formal education at all: consortia. those who were monolingual had an average age of http://neurodegenerationresearch.eu/initiatives/annual-calls-for- dementia onset of 59.0 versus 65.0 years in those proposals/partnering-tool/ speaking two or more languages. www.alzheimer-europe.org/News/EU-developments/Monday-21-October- 2013-JPND-will-launch-two-calls-in-December-2013 This study was funded by the Indian government.

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8 November: Bristol-Myers Squibb drops clinical trials that will produce the greatest likelihood of neuroscience research success. Bristol-Myers Squibb has announced a new research focus Specific aims of the EPOC-AD project: that includes discontinuing broad based discovery work in • Form the EPOC-AD registry through coordination with neuroscience, hepatitis C and diabetes. The company will existing longitudinal cohorts and physician networks continue to focus on HIV, HBV, heart failure, oncology, to identify subjects for the registry. immune-science and fibrotic diseases. • Maintain a longitudinal natural history cohort of a www.bms.com/news/features/2013/Pages/Bristol- subset of subjects in the EPOC-AD registry to maintain MyersSquibbEvolvesRDStrategy.aspx a “trial-ready cohort” with standardized run-in data. 8 November: Luxembourg researcher wins grant • Develop criteria and methods for selecting for AD research participants from the longitudinal natural history cohort for inclusion in AD prevention adaptive clinical A team led by Dr. Enrico Glaab, a researcher from the trials. Luxembourg Centre for Systems Biomedicine (LCSB) of the • Establish an international collaborative group for University of Luxembourg, has won the 2013 public advancing and conducting adaptive prevention trials scientific challenge of the Geoffrey Beene Foundation. for preclinical to early symptomatic AD. The EUR 37,000 cash award will be used to investigate why women are at greater risk for Alzheimer’s disease • Develop methods for the design and analysis of than men. adaptive clinical trials for preventing AD that incorporate Bayesian statistical approaches for Dr. Glaab and his colleagues have identified a gene called selecting, introducing and dropping treatments arms, USP9 that is much more active in the brains of healthy including drug combinations. men than in men with Alzheimer’s disease. However, the www.imi.europa.eu/content/11th-call-2013-8 gene is nearly equally active in the brains of healthy and ill www.imi.europa.eu/sites/default/files/uploads/documents/11th_Call/11th_ women. The gene also acts as a regulator in many cellular Call_indicativetext_20131107.pdf processes associated with Alzheimer’s disease. The 14 November: Retinal cell changes may be AD researchers will investigate whether the elevated activity biomarkers of the USP9 gene in men provides protection against Alzheimer’s disease. A new study has shown that changes to certain cells in the eye's retina could help diagnose and track the progression The second prize of the challenge went to Dr. John of Alzheimer's disease. Quackenbush and Dr. Kimberly Glass from the Harvard School of Public Health. They are examining gender The researchers were led by Dr Scott Turner, Director of differences in cellular networks and are developing the Georgetown University Memory Disorders Program. technology to better predict sex-based differences in They examined the thickness of the retina in mouse Alzheimer’s disease. models, in two areas that had not previously been investigated: the inner nuclear layer and the retinal The Geoffrey Beene Foundation Alzheimer’s Initiative is a ganglion cell layer. Results showed that a loss of thickness major beneficiary of the Geoffrey Beene Foundation. The occurred only in Alzheimer's mice. The retinal ganglion organisation has provided funding to advance awareness, cell layer had almost halved in size and the inner nuclear diagnosis and research in early stages of Alzheimer’s layer had decreased by more than a third. disease since 2007. http://wwwen.uni.lu/lcsb/news_events/lcsb_wins_global_neurodiscovery_ch This study builds on existing evidence linking the loss of allenge cells in the eyes to dementia. It is thought that when www.geoffreybeenechallenge.org neurons die in the brain, they also die in the eye, which

leads to a thinning of the retina. Dr Turner said: "The retina is an extension of the brain so it makes sense to see if the same pathologic processes found in an Alzheimer's brain are also found in the eye. www.alzheimer-europe.org/Donation This could lead to new ways to diagnose or predict 11 November: IMI to call for proposal on AD Alzheimer's that could be as simple as looking into the eyes”. prevention These findings were presented at the Neuroscience 2013 IMI, the Innovative Medicines Initiative, will conference in San Diego. launch its 11th call for proposals in late 2013. The call, will likely feature eight www.sfn.org/annual-meeting/neuroscience-2013 topics including EPOC-AD, the "European platform for 15 November: Phase 2 trial tests ability of CERE- proof of concept for prevention in Alzheimer’s Disease." 110 to increase NGF EPOC-AD calls for greater cooperation and collaboration between academia, government and industry to enhance A gene therapy for Alzheimer's disease called CERE-110 is the drug development process. The project would create being tested in a Phase 2 clinical trial following successful a precompetitive space to enable collaboration for Phase 1 results. optimising patient selection, clinical trials methodologies The Phase 1 study showed that surgical delivery of CERE- and candidate therapies, as well as conducting adaptive 110 to the brain results in an increase of nerve growth

Page 9 of 13 Newsletter: November 2013

factor (NGF), a protein that promotes nerve growth and mice with established plaque can reduce deposition and repair and also protects nerves against damage. Results retention of beta amyloid. also showed a stabilisation of metabolic activity in neurons, which may reflect a slowing of cell deterioration. The APOE4 variant of apolipoprotein E is a known risk factor for late-onset Alzheimer's disease. In humans, Dr. Paul Aisen, Project Director of the Phase 2 trial and carrying two copies of APOE4 increases the risk of Director of the Alzheimer's Disease Cooperative Study developing Alzheimer's disease by 12 times compared to (ADCS) at the University of California San Diego, said: having two copies of the more common APOE3 form. "These early clinical data demonstrate that this However, inheriting the APOE2 variant appears to cut the therapeutic approach is feasible, well-tolerated and risk in half. results in appropriate delivery of the therapeutic NGF protein to the intended target cells in the brain." In this study, researchers from Massachusetts General Hospital (MGH) tested the APOE2, APOE3 and APOE4 The Phase 2 trial is being carried out in collaboration with variants in different groups of mice. They used direct CSF the ADCS and is funded by a grant from the National injections in adult Alzheimer mouse models with well- Institute on Aging (NIA), part of the National Institutes of established plaques and also maintained a control group. Health (NIH). The study is fully enrolled and will last until 2015. Results showed that plaques in mice that received APOE4 were more numerous and significantly denser than those These results were presented at the Sixth Clinical Trials on of mice receiving APOE2. The growth of plaques in Alzheimer's Disease (CTAD) Meeting in San Diego on 14- animals receiving APOE3 was in between that of the other 16 November 2013. two groups and similar to the control group. In addition, beta amyloid levels in the blood of the APOE2 mice were 20 November: Human APOE2 reduces plaque in higher than in the other groups, suggesting that this AD mouse models variant increased clearance of beta amyloid from the brain. A new animal study has shown that injection of the human APOE2 protein into the cerebrospinal fluid (CSF) of Dr. Eloise Hudry, Instructor in Neurology at MGH and lead mice with established plaque can reduce deposition and author said: "This study has allowed us to sort out, in retention of beta amyloid. mice, which effects of the different types of APOE were most important to variation in amyloid plaque deposition. The APOE4 variant of apolipoprotein E is a known risk Our results imply that APOE-based therapeutic factor for late-onset Alzheimer's disease. In humans, approaches may help to alleviate the progression of carrying two copies of APOE4 increases the risk of Alzheimer's disease." developing Alzheimer's disease by 12 times compared to having two copies of the more common APOE3 form. http://stm.sciencemag.org/content/5/212/212ra161 However, inheriting the APOE2 variant appears to cut the risk in half. Dementia in Society In this study, researchers from Massachusetts General 13 November: Spanish composer releases new Hospital (MGH) tested the APOE2, APOE3 and APOE4 song about dementia variants in different groups of mice. They used direct CSF injections in adult Alzheimer mouse models with well- A new Spanish song about dementia has been released on established plaques and also maintained a control group. YouTube. "Cordones de mimbre" ("Wicker cord") was composed by Iñaki Alforja and is based on the experiences Results showed that plaques in mice that received APOE4 of a man whose mother has developed dementia. The were more numerous and significantly denser than those video portrays many real life situations of people living of mice receiving APOE2. The growth of plaques in with dementia in Spain's Navarra region. According to Mr animals receiving APOE3 was in between that of the other Alforja, "it's a simple story about your feelings when you two groups and similar to the control group. In addition, have a relative with Alzheimer disease." beta amyloid levels in the blood of the APOE2 mice were higher than in the other groups, suggesting that this www.youtube.com/watch?v=SQKZXDlPyTw variant increased clearance of beta amyloid from the brain. New Publications & Resources Dr. Eloise Hudry, Instructor in Neurology at MGH and lead 9 November: University of Stirling releases a author said: "This study has allowed us to sort out, in dementia-friendly hospital design mice, which effects of the different types of APOE were most important to variation in amyloid plaque deposition. The Dementia Services Development Centre (DSDC) at the Our results imply that APOE-based therapeutic University of Stirling has designed a dementia-friendly approaches may help to alleviate the progression of online virtual hospital. This includes an entrance, wards Alzheimer's disease." and a lift that can help people with dementia to feel more

http://stm.sciencemag.org/content/5/212/212ra161 in control and more secure. The virtual hospital was funded by the Robert Bosch Stiftung foundation. 20 November: Human APOE2 reduces plaque in http://dementia.stir.ac.uk/design/virtual-environments/virtual-hospital AD mouse models A new animal study has shown that injection of the human APOE2 protein into the cerebrospinal fluid (CSF) of

Page 10 of 13 Newsletter: November 2013

10 November: University of Stirling announces a will equip them to ensure they can respond with skill and dementia course compassion to any patients who have dementia. The DSDC is also re-launching its "Improving dementia www.kcl.ac.uk/prospectus/graduate/acid care" course. The 15 week distance learning course is for 27 November: Royal College of Nursing releases health and social care practitioners looking to improve dementia care guide their knowledge and practice in the field of dementia care. A guide to improve the care of people with dementia by ensuring support and involvement of their carers has The course aims to improve the knowledge of current been published by the Royal College of Nursing (RCN) and approaches to care and support for people with dementia Carers Trust. and those who care for them. In addition, participants can develop a better understanding of how to promote The "Triangle of Care" contains six key standards that aim change in dementia care and improve outcomes for to improve collaboration between carers and health care people with dementia. workers: The course will start on 31 January 2014 at a cost of EUR 1. Carers and their essential role are identified as 764. Applications are available on the DSDC website. soon as possible. www.dementia.stir.ac.uk/education/advanced-study/undergraduate 2. Staff is "carer aware" and trained to engage with and understand carers’ needs. 22 November: King’s College London launches MSc course for Advanced Care in Dementia 3. Policy and practice regarding confidentiality and sharing information are in place. King’s College London has developed a master’s degree that aims to drive up standards of care for people with 4. Defined posts responsible for carers are in dementia. The MSc Advanced Care in Dementia place. programme can be studied over one year full time or two years part time. Students will explore a biopsychosocial 5. A carer introduction to the service and staff is model of dementia care through five taught modules: available. Measurement and evaluation for healthcare practice; 6. A range of carer support services are available. Clinical science of dementia; Evidence-based decision- making in healthcare; Care in dementia; Leadership and Dr. Peter Carter, Chief Executive and General Secretary of change in dementia care. Students must also draw on the RCN said: “Carers often have their own needs and their learning in dementia care to plan and carry out a should be offered information and support. They also relevant research project for their dissertation. have a lot to offer health care staff, as they are often the Throughout the course, students will develop the ones who know the person best. No one is better placed knowledge and skills they need to offer person-centred to advise on a person’s needs and how their dementia care to people with dementia using evidence-based and affects them than a carer who has known them for years. reflective approaches. Carers and staff are working towards the same goal and it is better for everyone if they can work together to achieve this.”

www.nursinginpractice.com/article/rcn-calls-improved-links-dementia-carers

Contact Alzheimer Europe: Alzheimer Europe, 145 route de Thionville, L-2611, Luxembourg [email protected], www.alzheimer-europe.org Alzheimer Europe Board Geoff Ward, a senior nurse at South London and Chairperson: Heike von Lützau-Hohlbein (Germany); Vice-Chairperson: Maudsley NHS Foundation Trust has just completed the Iva Holmerová (Czech Republic); Honorary Secretary: Charles Scerri programme. “I wish I had completed this programme (Malta); Honorary Treasurer: Maria do Rósario Zincke dos Reis years ago,” he says. “It is a brilliant opportunity to learn (Portugal); Members: Patrick Maugard (France), Maurice O’Connell (Ireland), Sirpa Pietikäinen (Finland), Helga Rohra (Germany), Alicja more about dementia, and has also enhanced my Sadowska (Poland), Henry Simmons (UK - Scotland). understanding of research.” Alzheimer Europe Staff Executive Director: Jean Georges; EU Public Affairs Officer: Annette As research into the various forms of dementia adds to Dumas; Administrative Assistant: Kate Ellis; Editor – Dementia in our understanding of the condition, the field of dementia Europe Magazine: Julie Fraser; Information Officer: Dianne Gove; care offers a rewarding career for professionals working in Conference and Event Coordinator: Gwladys Guillory; Communications Officer: Alex Teligadas; Administrative Assistant: Grazia Tomasini. all settings. The Advanced Care in Dementia Programme

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AE Calendar 2013

Date Meeting AE representative 10 December Glasgow site inspection for 2014 AE conference (Glasgow, UK) Gwladys EMA Training Session for patient organisations and the EMA Patient and Consumer Working Party 10-11 December Jean (London, United Kingdom) 11 December 3rd NILVAD Steering Committee meeting (London, UK) Alex 11-12 December G8 Dementia Summit and the CEO Initiative on Dementia (London, UK) Heike 12-13 December DANDEC project application kick off meeting (Prague, Czech Republic) Dianne 12-13 December EMIF project - 2nd AD General Assembly (Amsterdam, the Netherlands) Alex 13 December EFPIA Think Tank (Brussels, Belgium) Annette 16 December Meeting with EPEMED European Personalised Medicine association (Luxembourg, Luxembourg) Jean European Parliament Interest Group on Mental health, Well-being and Brain Disorders (Brussels, 17 December Jean Belgium) Future Conferences

Date Meeting Place 8-9 December 2013 2nd Middle East and North Africa Conference of Alzheimer’s Disease International, Dubai, UAE www.adidubai2013.org 11-14 December 2013 The 16th Asia Pacific regional Conference of Alzheimer’s disease international, www.aprc2013- Hong Kong & Macau, China hongkong-macau.com th 20-22 March 2014 58 Annual meeting of the German society for clinical neurophysiology and functional imaging Berlin, Germany (DGKN), www.dgkn-kongress.de 20-23 March 2014 30th International Congress of Clinical Neurophysiology of the IFCN (ICCN), www.iccn2014.de Berlin, Germany 26-29 March 2014 13th Int. Geneva/Springfield Symposium on Advances in Alzheimer Therapy, www.ad-springfield.com Geneva, Switzerland 1-4 May 2014 29th ADI Conference, www.adi2014.org San Juan, Porto Rico 8-11 May 2014 8th World Congress on Controversies in Neurology (CONy), www.comtecmed.com/cony/2014/ Berlin, Germany 31 May-3 June 2014 EFNS-ENS Joint Congress of European Neurology, http://www.jointcongressofeuropeanneurology.org Istanbul, Turkey 11-14 June 2014 12ème Réunion francophone sur la maladie d’Alzheimer et les syndromes apparentés Montpellier, France 26-27 June 2014 International Dementia Conference, "Risky Business 2 – this time it's personal!", Sydney, Australia http://www.dementiaconference.com/call-for-papers 5-9 July 2014 9th FENS Forum of Neuroscience, http://forum.fens.org/2014 Milan, Italy 20-22 October 2014 24th Alzheimer Europe Conference “Dignity and autonomy in dementia”, www.alzheimer- Glasgow, United Kingdom europe.org/Conferences th 23-25 October 2014 9 International Conference on Frontotemporal Dementias, www.ubccpd.ca Vancouver, Canada

Page 12 of 13 Newsletter: November 2013

The Alzheimer Europe newsletter arises from the 2013 Work Plan of Alzheimer Europe, which has received funding from the European Union in the framework of the Health Programme.

Page 13 of 13

NEWSLETTER December 2013/January 2014

launched two calls - along with a Highlights in this issue Editorial new report on its ongoing cohort research. 3 December: EU states adopt 7 December 2013 Horizon 2020 already seems In our member countries, Greece like a distant 3 December: AE holds lunch 2 has begun work on a national memory to me, debate on European Dementia dementia strategy. Italy is also yet there were Monitor making progress and Norway has quite a few launched an ambitious dementia 11 December: G8 nations hold 10 activities at the dementia summit research programme. Our member end of the year, associations in Germany, the 2 January: Greece begins work 10 notably the G8 Dementia Summit. Netherlands and the UK are also on national dementia plan This remarkable event has shown funding research projects and the 2 January: AE welcomes new 2 us how far we have come in UK’s Dementia Friends campaign colleagues addressing the challenges that face continues its successful course. 6 January: Commission opens 7 people with dementia and their access to scientific papers families. We have reports of several new drug trials, including three Phase 3 22 January: EnVivo announces 14 In December, we also held a lunch trials and also a clinical assessment Phase 3 clinical trial debate in Brussels. This was of a gaming platform as a hosted by Maltese MEP Joseph biomarker. In Europe, the EMA

Cuschieri and allowed us to approved a new rivastigmine patch present our new European and an imaging agent while a new Dementia Monitor. American project called YODA will

After the end-of-year break, we provide access to clinical trial data. welcomed our new colleagues Our next lunch debate will take Ana, Kate and Stefanie – and also place on 18 February in Brussels, bid farewell to Julie Fraser, who is where we will explore the current unfortunately no longer with us. and future projects of the While we are still settling into our Innovative Medicines Initiative new offices, we are glad to with IMI Executive Director Michel announce that the Alzheimer Goldman. On the same day, we Europe Foundation is now officially will also be releasing three new established and operational. The publications: the latest issue of foundation will support many of our Dementia in Europe Magazine, our activities, such as involving the 2013 Ethics report and the Table of contents people with dementia in European 2013 Dementia in Europe conferences and projects. Editorial ...... 1 Yearbook. In January we also attended launch Alzheimer Europe ...... 2 The Ethics report examines the meetings of two new EU projects - issues linked to the perceptions AE Projects ...... 4 AETIONOMY and ACTIFCare - and and portrayal of dementia, while we will continue to represent the European Alzheimer’s Alliance ...... 5 the Yearbook includes detailed interests of our members in all our information on national policies AE Networking 2013 ...... 6 project work during the year. relating to the care and support of EU Developments ...... 6 We are grateful to the first seven people with dementia and their carers in 28 countries. Members’ News ...... 7 MEPs that have already signed our European Dementia Pledge; we We wish all our readers a Policy Watch...... 9 expect that many more will join successful year and look forward Science Watch ...... 10 them in committing to make to seeing many of you at an dementia a priority in the new Alzheimer Europe event very soon. Dementia in Society ...... 15 Parliament. In other EU news, New Publications & Resources...... 16 Greece has taken over the EU presidency and Horizon 2020 has Jean Georges AE Calendar 2014 ...... 17 been approved by the Member Future Conferences ...... 17 States. The first calls have already Executive Director gone out and the JPND has also

Page 1 of 18 Newsletter: Dec 2013/Jan 2014

various mechanisms that are available for existing and Alzheimer Europe new corporate sponsors. 2 December: Alzheimer Europe holds Board These include the existing gold, silver and bronze meeting packages, but AE will now present its activities in smaller packages than in the past. This will allow companies with Alzheimer Europe held a Board meeting on 2-3 December fewer resources to participate as well. Conference in Brussels that was attended by seven Board members. sponsorship will also become more accessible and there Amongst other items, they reviewed the outcomes of AE’s will also be new advertising options. successful 2013 Annual Conference in Malta and the According to Mr Georges, the new options provide "à la progress of the upcoming Dementia in Europe Yearbook. carte" sponsorship opportunities in a clear and The Board members also reviewed financial forecasts for straightforward manner. 2013 and adopted the 2014 work plan and budget. 10 December: Alzheimer Europe joins the The next AE Board meeting will take place on 17 February. PredictND project 3 December: AE holds a lunch debate on the Alzheimer Europe has joined PredictND, a project within European Dementia Monitor the Seventh Framework Programme (FP7) that aims to On 3 December, Joseph Cuschieri, MEP (Malta) and provide an objective and systematic ICT-based approach member of the European Alzheimer's Alliance, hosted an for the diagnosis of neurodegenerative diseases. Alzheimer Europe lunch debate dedicated to the One of the main objectives is to show that a clinical development of AE’s European Dementia Monitor. protocol based on the use of modern computer-based Mr. Cuschieri welcomed the participants and pointed out models enables objective earlier diagnostics compared to that dementia is a challenge for all EU Member States: current clinical procedures. The second main objective of over seven million Europeans live with dementia and PredictND is to improve cost-efficiency of early there are some 21 million informal carers. He also said diagnostics by developing a low-cost and simple-to-use that it is imperative to address both the stigma associated battery of measurements that could be used to detect with the disease and the fact that the treatment and care persons at high risk for dementia. of people with dementia differs between EU Member The PredictND project will be coordinated by VTT States. Technical Research Centre of Finland. AE will be a partner MEP Cuschieri was followed by Jean Georges, Executive in dissemination and outreach activities and the other Director of Alzheimer Europe. Mr. Georges gave a partners are shown below: presentation on AE’s European Dementia Monitor (EDM), • Danish Dementia Research Centre (Denmark) which is a benchmark of national dementia policies in 33 European countries. The monitor presents simple • University of Eastern Finland information in an easily accessible format, comparing the • University of Perugia (Italy) prevalence of dementia, diagnostic guidelines and • VU University Medical Center (The Netherlands) infrastructure, availability of medicines, access to clinical • GE Healthcare Life Sciences (Sweden) trials and care availability. • Imperial College of London (UK) The EDM is based on data from existing and trustworthy sources, mainly Alzheimer Europe member associations. 2 January 2014: Alzheimer Europe presents new The comparison of data from different countries is often colleagues challenging but the EDM overcomes this by using a point Alzheimer Europe is pleased to welcome three new system to present results in a simple and clear table. colleagues to its Luxembourg office: Preliminary results show a wide range of differences between European countries, meaning that shortcomings Ana Diaz, Project Officer: Ana will collaborate with AE’s can be identified. Mr. Georges said that this would be a member associations in the development priority for Alzheimer Europe in 2014 and that the of national reports on care pathways. She findings will be published in a scientific journal. will also develop and maintain databases on clinical trials and diagnostic and There were 40 participants at the lunch debate, including treatment guidelines in Europe. In MEPs Anneli Jäätteenmäki (Finland) and Marina addition, Ana will support the Yannakoudakis (UK), while Sirpa Pietikäinen (Finland) was development of project applications represented by her assistant. Other participants included towards EU programmes and support the dissemination representatives from the European Commission, the of EU funded research projects. Ana is currently finalising pharmaceutical industry and eight member associations her PhD thesis entitled “Quality of life and anti-dementia of Alzheimer Europe. medication: An exploration of the experiences of people 3 December: Alzheimer Europe holds a corporate living with dementia and their care-partners” from Trinity meeting College Dublin. She can be reached at [email protected] Following the lunch debate, Alzheimer Europe held a meeting with corporate sponsors that featured a Kate Ellis, Communications Officer: Kate has been with AE presentation on sponsorship opportunities for 2014. Jean on a part-time basis since 1 January 2013. In her new full- Georges described AE’s 2014 activities and described the time position, she will take over the production of the

Page 2 of 18 Newsletter: Dec 2013/Jan 2014

monthly newsletter and will update the 10 January: AE finalises the set-up of the website. She will also help to refresh AE’s Alzheimer Europe Foundation communication strategy, including an improved social media presence. Kate can AE is pleased to announce that the be reached at katherine.ellis@alzheimer- Alzheimer Europe Foundation (AEF) is now europe.org officially established and operational. The final step was taken on 10 January, when Stefanie Peulen, Finance Officer: Stefanie will be working the Foundation was formally approved by on a part-time basis to prepare monthly Grand-Ducal Decree. The AEF aims to: and annual financial reports as well as developing annual budgets. She will also • support the networking activities of national prepare budgets and monitor the accounts Alzheimer associations in the framework of Alzheimer of EU projects and support the Europe. development of new fundraising activities. • encourage the involvement of people with dementia Stefanie can be reached at stefanie.peulen@alzheimer- in European conferences, meetings and projects. europe.org • promote European dialogue on legal and ethical In addition, AE has named Dianne Gove as Director for issues in dementia. Projects and Alex Teligadas as Director for • support the exchange of information and good Communication. Dianne will continue to lead AE’s practices on national dementia strategies and research efforts, including the ethics and incontinence Alzheimer’s plans. working groups. Alex will update AE’s communication strategy and will take over as editor of the Dementia in Europe magazine. He will also continue to represent AE in a number of EU research projects. Finally, AE regrets to announce the departure of Julie Fraser. Julie joined Alzheimer Europe in December 2007 The AEF Board was established in 2011 and is chaired by and served as Communications Officer until September Maria do Rosário Zincke dos Reis, who is also Honorary 2011, when she became the Editor of the Dementia in Treasurer of AE. Heike von Lützau-Hohlbein and Iva Europe magazine. We would like to thank her for her Holmerová (respectively Chair and Vice-Chair of AE) were outstanding contribution and wish her every success in named as Board members at that time. They were joined the future. in 2013 by Marc Schaefer, a member of the Luxembourg www.alzheimer-europe.org/Alzheimer-Europe/Who-we-are/Our-staff\ Alzheimer’s Association and former AE Board member. The AEF Board will be further expanded and all Board members are appointed for three year terms.

Impressions from the lunch debate

Elisabetta Vaudano (IMI), Anneli Jäätteenmäki, MEP Joseph Cuschieri, MEP (Malta) and host of the lunch Marina Yannakoudakis, MEP (UK) and Vice Chair (Finland), Heike von Lützau-Hohlbein (Germany), Alicja debate of the European Alzheimer’s Alliance Sadowska (Poland)

Jean Georges (AE) Heike von Lützau-Hohlbein, MEP Annette Dumas (Alzheimer Europe) with Maria Maurice O’Connell (Ireland) and Gráinne Crowley (Lilly) Cuschieri and Charles Scerri (Malta) Do Rosário Zincke dos Reis (Portugal)

Page 3 of 18 Newsletter: Dec 2013/Jan 2014

impairment. The project is funded by the German Ministry AE Projects of Education and Research. rd 11 December: NILVAD holds 3 Steering 12 December: EMIF holds 2nd General Assembly Committee meeting of the Alzheimer’s disease partners The NILVAD Steering Committee held The EMIF-AD partners held their second its third meeting on 11 December in General Assembly during 12-13 December London with 18 participants present. in Amsterdam. The assembly included The agenda focused on recruitment for the clinical trial work package updates and a poster but also covered the project sub-studies and presentation. The sessions were mainly led by Pieter Jelle administrative and financial matters. Fischer and Johannes Streffer, who are heading the AD Dr Brian Lawlor, Project Coordinator, reported that a total work topics. of 102 people have been recruited into the nilvadipine EMIF has now reached the end of its first year. During that trial as of December 2013. The recruitment period will run time, the 56 project partners have clarified many scientific until the end of December 2014, with a final target of 500 issues and issued their first papers. In addition, the first trial participants. The delegates discussed various AD cohorts have been successfully loaded onto the scenarios to ensure that the target will be met. This was tranSMART platform. followed by updates from each work package and the project substudies. Bart Vannieuwenhuyse and Simon Lovestone, co- coordinators of the project, were pleased with the year’s The NILVAD project (2012-2017) has received support work. According to Bart, “the hard preparation work is from the European Commission’s Seventh Framework done. Now we can start to deliver.” Simon added that Programme. “the EMIF project brings size; we will have access to more www.nilvad.eu data and samples than I could ever generate from conventional collaboration. Because of the nature of the information, we can address different questions from before. There are cohorts with five years or more of data, up to ten in some instances. Then electronic health records bring in primary care data, not only from the ‘at risk’ age group. We can search for significant indications even back to childhood.” 12 December: DANDEC project holds planning EMIF is part of the broader European Innovative meeting Medicines Initiative (IMI) and aims to create an environment that allows for efficient re-use of existing On 12-13 December 2013, Dianne Gove, Director of health data. Projects for Alzheimer Europe, took part in a DANDEC www.emif.eu; www.youtube.com/watch?v=B27hlsa3_L4 project meeting in Prague. The aim of the project is to generate a sustainable improvement of treatment and 9 January 2014: AETIONOMY project holds launch care for older people with dementia and their carers in six meeting countries on the Danube River: Bulgaria, Czech Rep., Germany, Romania, Slovenia and Ukraine. This will mainly On 9-10 January, the be achieved through information and communication AETIONOMY project partners technology (ICT) solutions and an interdisciplinary held their first meeting in approach. Brussels. The five-year project aims to improve the classification and diagnosis of neurodegenerative disease There will be two working groups. The first will focus on by collecting, curating and organising all the publically the development of an information and education available knowledge about disease mechanisms in order platform for the public and for professional and informal to improve drug development and therapy. carers. The second group, which includes Alzheimer Europe, will develop and evaluate ICT-based assistive, More specifically, the project partners will develop new safety and monitoring systems in the home. These taxonomies, or classifications, of Alzheimer’s and systems will maintain independence, mobility, activity, Parkinson’s diseases based on specific disease participation and social inclusion for people with mild mechanisms. They will also validate these taxonomies dementia and also ensure safety within and outside the with a clinical study, in order to identify patient sub- home for people with moderate and advanced dementia. groups based on the new taxonomy. This will hopefully lead to earlier and more accurate diagnoses and also DANDEC is an international application and extension of improved drug development. research activities at DZNE (the German Centre for Neurodegenerative Diseases) in the field of caring AETIONOMY will be led by Prof Duncan McHale, Vice research. The project also promotes a change in the public President of Global Exploratory Development at UCB and perception of ageing since it conceives dementia as part Prof Martin Hofmann-Apitius, Head of Bioinformatics at of the biographical development of a growing proportion Fraunhofer. Together they will coordinate the efforts of of older people and looks for technology-based solutions 17 project partners working in five work packages. which enable an optimum quality of life despite cognitive Alzheimer Europe is a partner in work package 4 - Ethical and Legal Governance - along with UCB, Leibniz

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Universität Hannover, Erasmus Medical Center and the In addition, costs, consequences and novel specific European Brain Council. This group will initially provide outcome measures will be evaluated. This will lead to the input to ensure that patient perspectives and interests are identification of best-practice pathways to formal care. considered in the project’s legal framework. Alzheimer Europe is a member of the consumer board on this project. AETIONOMY receives support from the Innovative Medicines Initiative Joint Undertaking (IMI-JU) under ACTIFCare is a three year project supported by JPND, the grant agreement n° 115568. EU Joint Programme for Neurodegenerative Disease Research. AETIONOMY project partners European Alzheimer’s Alliance Alzheimer Europe Luxembourg Centre for (Luxembourg) Systems Biology 28 January: MEP van Nistelrooij addresses (Luxembourg) dementia question to the European Commission Boehringer Ingelheim NeuroRad (Romania) Mr Lambert van Nistelrooij, MEP (Germany) (Netherlands) and member of the European Alzheimer’s Alliance, recently Erasmus Medical Center Novartis (Switzerland) addressed the following written question (The Netherlands) to the European Commission: European Brain Council Pharmacoidea Ltd. Subject: Eradicating dementia by 2025 (Belgium) (Hungary) On 11 December 2013 the group of the eight largest Fraunhofer Institute Sanofi (France) industrialised countries in the world, the G8, made a SCAI (Germany) commitment to develop a medicine to cure dementia, or ICM - Institut du Cerveau UCB Pharma (Belgium) control it more effectively, by 2025. This is an important initiative as it is estimated that 135 million people et de la Moelle épinière (France) worldwide will suffer from dementia in 2050 if no action is taken. According to the World Health Organisation, the IDIBAPS - Institut Universitätsklinikum Bonn global cost of dementia in 2010 was USD 604 billion. d'investigacions (Germany) In the light of the above: Biomèdiques August Pi i Sunyer (Spain) • Has the Commission pledged its support for the G8 Karolinska Institutet University College London commitment? (Sweden) (UK) • What research and innovation resources under the Horizon 2020 programme is the Commission making Leibniz Universität available for age-related diseases (both for Hannover (Germany) fundamental research into the causes and for treatments for the various stages of these diseases)? • Will the Commission make an additional financial

contribution to the G8 initiative, either directly or indirectly? The Commission is expected to reply within eight weeks and AE will publish the response in a future newsletter. 30 January: Jim Higgins joins the European Alzheimer's Alliance

16 January 2014: ACTIFCare project holds launch The European Alzheimer's Alliance is pleased to welcome Jim Higgins, MEP meeting (Ireland) and member of the Group of On 16-17 January 2014, Dianne Gove attended the kick- the European People's Party (EPP). Mr off meeting of the ACTIFCare (Access to Timely Formal Higgins sits on the Committee on Care) project in Maastricht. This project aims to better Transport and Tourism and is also a understand the reasons for inequalities in access to Quaestor in the Parliament Bureau. healthcare, hence the name Access to Timely Formal Care 31 January: Seven MEPs sign the European The partners will assess and compare health care systems Dementia Pledge that give access to formal home care across Europe using literature review, expert consultation and focus groups. At Alzheimer Europe wishes to thank the first seven MEPs to an individual level, they will assess the access to and use sign the European Dementia Pledge: of formal care services in people with dementia and their • Austria - Heinz Becker and Angelika Werthmann carers in eight EU countries and examine how this relates • to their needs and quality of life. Ireland - Jim Higgins • Slovenia - Mojka Kleva Kekuš and Ivo Vajgl

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• United Kingdom - Claude Moraes • Join the European Alzheimer’s Alliance comprised of Members of the European Parliament committed to The Pledge is a simple commitment by European making dementia a European priority and Parliament candidates to support our campaign to make • dementia a priority: Make myself available to my national Alzheimer’s society and people with dementia from my country.” “On my election to the European Parliament, I will We invite all our readers to contact their MEP candidates and make them aware of the European Dementia Pledge.

www.alzheimer-europe.org/Policy-in-Practice2/European-Dementia-Pledge

Alzheimer Europe Networking 2013 On 2-3 December, Jean and the staff attended the AE Board meeting and Lunch debate on the findings of the European Dementia Monitor (Brussels, Belgium). On 5 December, Annette attended the Eurodiaconia event on ”Active ageing for the oldest” (Brussels, Belgium). On 10 December, Gwladys conducted a site inspection for the 2014 AE conference (Glasgow, UK). On 10-11 December, Alex attended an EMA training session and the 3rd NILVAD Steering Committee meeting (London, UK). On 12-13 December, Dianne attended the DANDEC project application kick off meeting (Prague, Czech Republic). On 12-13 December, Alex went to the 2nd EMIF-AD General Assembly (Amsterdam, the Netherlands). On 13 December, Annette attended the EFPIA Think Tank (Brussels, Belgium). On 16 December, Annette participated in the WHO European Region meeting on “Implementing policies for healthy ageing in the WHO region” (Utrecht, the Netherlands). On 23 December, Julie and Alex attended an Editorial meeting with Binsfeld (Luxembourg, Luxembourg). On 9-10 January, Alex attended the AETIONOMY launch meeting (Brussels, Belgium). On 14 January, Jean met with European Personalised Medicine Association (Luxembourg, Luxembourg). On 16-17 January, 2014 Dianne attended the kick-off meeting of the ACTIFCare project (Maastricht, the Netherlands). On 27 January, Alex attended the PharmaCog Steering Committee meeting (Lille, France). On 27 January, Dianne attended the JPND-AAL meeting (Amsterdam, the Netherlands).

Members of the European Alzheimer’s Alliance

Currently, the total number of MEPs in the Alliance stands at 72, representing 23 Member States of the European Union and all seven political groups in the European Parliament. Alzheimer Europe would like to thank the following MEPs for their continued support of the European Alzheimer’s Alliance:

Austria: Becker K. Heinz (EPP), Werthmann Angelika (NI). Belgium: Demesmaeker Mark (Greens/EFA), Ries Frédérique (ALDE), Staes Bart (Greens/EFA), Tarabella Marc (S&D). Bulgaria: Parvanova Antonyia (ALDE). Cyprus: Triantaphyllides Kyriacos (GUE-NGL). Czech Republic: Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP). Denmark: Christensen Ole (S&D), Rohde Jens (ALDE), Schaldemose Christel (S&D). Finland: Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli (ALDE), Pietikäinen Sirpa (EPP). France: Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise (EPP), Juvin Philippe (EPP), Morin-Chartier Elisabeth (EPP), Pargneaux Gilles (S&D). Germany: Niebler Angelika (EPP), Roth-Behrendt Dagmar (S&D), Ulmer Thomas (EPP). Greece: Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni (S&D), Kratsa-Tsagaropoulou Rodi (EPP). Ireland: Aylward Liam (ALDE), Childers Nessa (non-attached), Crowley Brian (ALDE), Higgins Jim (EPP), McGuiness Mairead (EPP), Mitchell Gay (EPP). Italy: De Martini Susy (ECR), Panzeri Pier Antonio (S&D), Patriciello Aldo (EPP), Toia Patrizia (S&D). Lithuania: Blinkeviciute Vilija (S&D). Luxembourg: Engel Frank (EPP), Lulling Astrid (EPP). Malta: Cuschieri Joseph (S&D). Netherlands: De Lange Esther (EPP), van Nistelrooij Lambert (EPP), Wortmann-Kool Corien (EPP). Poland: Łukacijewska Elżbieta (EPP). Portugal: Carvalho Maria da Graça (EPP), Coelho Carlos (EPP), Matias Marisa (GUE/NGL). Romania: Antonescu Elena Oana (EPP), Sârbu Daciana Octavia (S&D), Tanasescu Claudiu Ciprian (S&D). Slovakia: Mikolasik Miroslav (EPP), Zaborska Anna (EPP). Slovenia: Kleva Kekuš Mojca (S&D), Peterle Alozj (EPP). Spain: Badia i Cutchet Maria (S&D), Estaràs Ferragut Rosa (EPP). United Kingdom: Anderson Martina (GUE-NGL), Ashworth Richard (ECR), Hall Fiona (ALDE), McAvan Linda (S&D), McCarthy Arlene (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Taylor Keith (Greens/EFA), Vaughan Derek (S&D), Watson Graham (ALDE), Willmott Glenis (S&D), Yannakoudakis Marina (ECR).

Horizon 2020 brings all EU-level funding for research and EU Developments innovation under one roof, provides a single set of rules 3 December: EU Member states adopt Horizon and aims to radically slash red tape. The overarching goal is a more coherent, simpler programme that will make it 2020 programme easier to participate, especially for smaller research On 3 December, the European Commission welcomed the organisations and small businesses. adoption by EU Member States of Horizon 2020, the next Máire Geoghegan-Quinn, European Commissioner for EU research and innovation programme. Horizon 2020 is Research, Innovation and Science said: "I very much the biggest EU research programme ever, with a budget welcome the decision taken today, but the real work of nearly EUR 80 billion over seven years.

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starts now. Over the next seven years, we will use every a selection of INGOs, taking into account the need for a cent of Horizon 2020's budget to build a stronger, more balanced representation of the different fields concerned. innovative Europe - one that will be more competitive and improve the quality of life for everyone. We will launch 22 January: EP committee meets the Greek the first calls for funding under Horizon 2020 next week Minister of Health on December 11. These calls will be a huge opportunity On 22 January, the European Parliament Committee on for scientists and businesses across the EU and beyond the Environment, Public Health and Food Safety (ENVI) and are not to be missed." held a meeting with Spyridon-Adonis Georgiadis, Greek http://europa.eu/rapid/press-release_MEMO-13-1085_en.htm Minister of Health. The meeting was an exchange of views http://www.consilium.europa.eu/uedocs/cms_Data/docs/pressdata/en/intm on Greece’s Council Presidency programme. /139875.pdf In the field of health, the Greek Presidency sees good 6 January 2014: Commission adopts open access health as a prerequisite for growth. As such, more policy for scientific articles effective health systems and better health must be a As of January 2014, the European Commission allows priority. Minister Georgiadis welcomed the agreements unrestricted access to research results under Horizon on clinical trials and said that medical devices and patient 2020, the new EU funding programme to boost research safety remain on the agenda. and innovation. Greece, along with other EU countries, is currently This policy applies to all publications where JRC members reforming its frontline healthcare system. The Presidency are first or corresponding authors. The JRC (Joint Research would like to look at best practices and put together a Centre) is the Commission’s science arm, providing package of measures that could be used by all. independent, evidence-based scientific and technical Minister Georgiadis explained that there will be a support throughout the whole policy cycle. JRC particular emphasis on innovation in electronic health and researchers are now expected to publish any new peer- also cited diet and physical exercise as important reviewed research paper in journals that are compliant priorities of the Presidency. He concluded by saying that with the updated policy. those innovations that can reform healthcare and help The JRC supports two routes to open access. Gold Access patients will be set as a priority. is when the journal publisher provides immediate and The ENVI Committee includes the following MEPS who are unrestricted access to the final published version of the also members of the European Alzheimer’s Alliance: paper and allows immediate deposit of the article in other Dagmar Roth-Berendt (Germany), Alojz Peterle (SIovenia) repositories. Green access is when the publisher agrees to and Marina Yannakoudakis (UK). make the peer-reviewed manuscript available within a defined embargo period; in line with the Horizon 2020 requirement, the JRC accepts an embargo period no Members’ News longer than six to twelve months. 10 December: Launch of Human Rights and Older http://publications.jrc.ec.europa.eu/repository People Policy Paper 10 January: Council of Europe seeks to protect the On 10 December, World Human Rights Day, rights of people with dementia the Alzheimer Society of Ireland launched its “Human Rights and Older People in Ireland” The Committee on Bioethics (DH-BIO) of policy paper. This was authored by The Human Rights and the Council of Europe has started work, Older People Working Group, with ASI at its helm. with the assistance of a Drafting Group, on the preparation of a draft Additional The paper describes stigma and ageism as major barriers Protocol to the Convention on Human Rights and within the current framework in Ireland, preventing older Biomedicine, concerning the protection of the human people from realising their human rights. rights and dignity of persons with mental disorders with Speaking at the launch, Senator Feargal Quinn gave regard to involuntary placement and involuntary treatment. insight into some of the major issues covered by the paper, including “the stigma surrounding diseases such as This work is based on the existing provisions of the dementia and indeed how we need to look completely Convention on Human Rights and Biomedicine (CETS differently at the relationship between ageing and n°164) and of the European Convention on Human Rights disability.” (CETS n° 5). He also gave assurance that “the paper provides concrete In the context of this preparation, a certain number of ways in which older people can realise their basic human issues have been identified on which the Drafting Group rights.” wishes to benefit from the views and suggestions of the INGOs representing the different fields concerned. The paper makes five recommendations, identified as critical factors to the realisation of Human Rights for Older Alzheimer Europe is part of the Drafting Group and has People: provided input on the ethical issues around restrictions of • freedom of people with dementia. access to appropriate and timely information • choice A hearing will be organised on 11 March 2014 at the office • allocation of resources of the Council of Europe in Paris. Invitations will be sent to

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• having a voice have a specific focus on the use of technical support for • access to redress dementia are especially welcome. Professor Gerard Quinn from the Centre of Disability Law Heike von Lützau-Hohlbein, First Chair of the Society, said: & Policy at NUI Galway, also speaking at the launch, hailed "We are very pleased to be able to provide funding for the paper as marking “a watershed in the evolution of research in 2014. This year, we intend to concentrate on thinking about older people and their rights in Ireland…by projects that will bring technical solutions to the practical helping to re-frame age from a human rights perspective problems that confront people with dementia and their you have done a great service. It will strike many as families every day of their lives.” unfamiliar. But this unfamiliarity is itself a striking Applications can be submitted until 30 April 2014 and all illustration of the reality that universal human rights have proposals will be evaluated by the technical advisory yet to be made genuinely universal.” board of the German Alzheimer Society. http://alzheimer.ie/Alzheimer/media/SiteMedia/ImageSlider/Fixed/ASI- www.deutsche-alzheimer.de/ueber- HROP-A4-Online-Report.pdf uns/aktuelles/artikelansicht/artikel/deutsche-alzheimer-gesellschaft-schreibt- forschungsfoerderung-2014-aus.html 1 January 2014: Federazione Alzheimer Italia launches annual awareness campaign 10 January: Alzheimer Nederland to improve treatment of depression As every year since 2009, Federazione Together with the Dutch Mental Health Fund, Alzheimer Italia (FAI) Alzheimer Nederland is co-funding a research will launch an SMS campaign to raise awareness and project to improve the treatment of people funds. The campaign will run during 2-16 February 2014 with Alzheimer’s disease who also suffer from to support "Pronto Alzheimer", the first Alzheimer depression. helpline in Italy to give practical help to family members. It will be supported the video "The memory room", which It is estimated that 20-25% of people with Alzheimer's will air on national and local television networks disease also suffer from depression. On average, throughout the campaign. depression has a bad prognosis and is very difficult to treat. The current standardised treatment for depression "Pronto Alzheimer" was launched 21 years ago to respond could be one of the reasons for the lack of its success. If to the questions and worries of family members of people this is the case, treatment can be improved by tailoring it with Alzheimer’s disease. Today, service represents 30% on a case by case basis. of FAI’s activities and has become the national reference point - both for families and for all professionals who are The researchers will seek to identify individual causes of involved with Alzheimer’s disease. The helpline provides depression by daily digital questionnaires about the information, support, psychological help and advice severity of depression symptoms and the occurrence of relating to legal, social security, psychological and social known risk factors. After identification of the most aspects and also provides contacts to the best available important risk factor(s), a personalised treatment local services. program will be put together. This may consist of an exercise programme for people who have little activity, "Pronto Alzheimer" has responded to over 135,000 light therapy for people with sleep disorders or cognitive requests for help since it began in 1993. During 2013, behavioural therapy for people who are worried about service operators recorded 4,576 contacts from all over their memory complaints. Italy in a dedicated database. Among these, 2,627 contacts were from patients’ family members. The most frequent requests www.alzheimer-europe.org/Donation were for information on disease and patient 14 January: Alzheimer Uniti Italy attends national management, research, diagnostic centres and local dementia strategy meeting services and legal and fiscal problems. Other popular On 14 January, representatives from requests dealt with explanatory documentation and Alzheimer Uniti Italy attended a meeting books, psychological and legal support, social support and hosted by the Italian Ministry of Health for occupational therapy – the latest service offering from the drafting of a national dementia Federazione Alzheimer Italia. strategy. The meeting was also attended by delegates 6 January: German Alzheimer Society will fund from the other national dementia organisations and dementia research representatives from the country’s regional authorities. This group includes all the relevant players that would The German Alzheimer Society has implement a national dementia strategy. It is hoped that announced that it will fund dementia the group can achieve rapid progress toward establishing research for up to EUR 200,000 during a chain of rational services, rooted properly in the entire 2014. country, which will respond to the needs and expectations Research projects should aim to improve the situation of of people with dementia and their caregivers. people with dementia and their families. Projects that

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15 January: Belgium’s LINAL provides guidelines 31 January: Norway launches national dementia for missing persons research programme Ligue Nationale Alzheimer Liga (LINAL) has In October 2013, the Norwegian National released a new brochure in its ongoing Broadcaster (NRK) selected the Norwegian campaign to develop Dementia Friendly Health Association as the organisation that Cities in Belgium. The brochure provides would benefit from its traditional annual fundraising guidelines on what to do if a person with event. dementia disappears from his/her home or place of residence. The event raised EUR ten million, which will be used to create and run a national coordinated research The brochure explains the various types of collaboration programme focusing on causes, prevention, diagnostics that exist between municipal authorities, the police and and treatment of dementia. It will also be used to fund a local chapters of the association to locate missing people. national research network amongst dementia researchers This collaboration is based on the four principles of in Norway. prevention, quick intervention, collaboration and information. The network approach aims to stimulate collaboration among scientists in basic research, clinical research and The new brochure also includes a legal point of view, a epidemiology. The ultimate goal for the association is to practical guide and a “To Do” list for families and take a large step forward in curing, preventing or caregivers. postponing the development of dementia, as well as securing the best quality of life for persons with dementia 15 January: Thirty more UK MPs and Peers and their caregivers. become Dementia Friends The Norwegian Dementia Research programme issued its On 15 January, an information session was held at the UK first annual call just before Christmas 2013 and has Houses of Parliament in London to recruit a cross-party already received 62 applications. The proposals will be group of thirty MPs and Peers to the ever-increasing ranks evaluated and assessed by a panel according to their of Dementia Friends throughout England and Wales. focus (causes, prevention, diagnostics and treatment of dementia), feasibility, novelty and originality, and The session, held at the Houses of Parliament, helped collaborative intentions. Following this, an independent Parliamentarians understand the impact international panel will assess the remaining proposals that dementia has on people's lives and the things that with a focus on scientific quality. Successful projects will can be done to help people with dementia to live well. be funded for three years, with the possibility to apply for Dementia Friends is a national initiative, launched in an extension up to five years. February 2013 by the UK Alzheimer’s Society. It aims to The Norwegian Health Association is aiming to raise more help people understand what it might be like to live with money during the first years of the programme in order to dementia and turn that understanding into action. establish the research programme as a permanent Alzheimer’s Society is aiming to have one million national fixture for Norwegian dementia research. Dementia Friends by 2015, to help make the UK more dementia-friendly and improve the lives of the 650,000 people currently living nationwide with the condition. Policy Watch The thirty participating MPs and Peers were also asked to 11 December: G8 countries hold dementia summit pledge an action in order to help make their community more dementia-friendly. On 11 December, the G8 group of countries held a dementia summit in London. The summit gave leaders Jeremy Hughes, Chief Executive at Alzheimer’s Society from the G8 nations (Canada, France, Germany, Italy, said: “Most people don’t know enough about dementia. Japan, Russia, UK, USA) the opportunity to discuss new Dementia Friends is the perfect opportunity to be able to strategies for the fight against dementia on a global scale. invite everyone to improve their knowledge. We are pleased to have been able to engage 30 MPs and peers in The programme included medical and social aspects of one day. They have a huge influence in their local dementia, including prevention, the quality of life and communities and we hope they will use this opportunity care of people with dementia and social adaptation to to take action and improve lives.” dementia. The delegates followed presentations and discussions led by experts from research establishments, The Alzheimer Society estimates that there are now the pharmaceutical industry and dementia organisations – almost 100 MPs and Peers who are Dementia Friends. including Heike von Lützau-Hohlbein, Chairperson of This includes those who attended one of two sessions in Alzheimer Europe. parliament (the first session was held on 13 September 2013) as well as those who have attended sessions locally The summit concluded with a declaration that set the in their constituencies. ambitious goal of developing a cure or treatment for dementia by 2025. The G8 Ministers also committed to www.dementiafriends.org.uk improve the lives of people living with the condition and to reduce social stigma, even if no particular timeframe was assigned for these objectives. Innovation, greater international cooperation and higher funding were all highlighted as key requirements to meet

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the summit’s targets. These will be followed up in three involved in the development and implementation of the legacy events during 2014 while progress on the research national dementia strategy. agenda will be reviewed in 2015.

https://dementiachallenge.dh.gov.uk/2013/12/12/g8-dementia-summit- agreements 1 January 2014: Greece takes over EU Presidency On 1 January, Greece took over the Presidency of the EU Council from Lithuania and will hold the office until 30 June 2014.

The current economic and financial crisis has led the Greek Presidency to Minister Adonis Georgiadis and Dr Paraskevi Sakka deal with recession and 17 January: Record Alzheimer's disease funding unemployment, safeguarding the bill passed in the US common currency, deepening the Economic and Monetary Union (EMU) and dealing with migration issues. A bill, increasing funding for Alzheimer's research, education, outreach and caregiver support by USD 122 In this context, the Presidency will work on the full and million, was signed into law on 17 January by President effective implementation of the Compact for Growth and Barack Obama for his 2014 budget. Jobs with specific actions promoting development, tackling youth unemployment, promoting labour market Currently, research figures show that for every USD mobility and taking action to address the social impact of 27,000 spent on healthcare for individuals with the crisis. Alzheimer's disease in the US, the National Institutes of Health (NIH) spends only USD 100 on research. In the health field, the Greek Presidency will advance legislative proposals for tobacco products, clinical trials, The US Alzheimer’s Association, which backed the passing pharmaco-vigilance fees, transparency directive and of the bill, congratulated the Obama administration as medical devices. Non-legislative work will aim at well as Congress for providing funding to enable the promoting initiatives for more efficient health care continued implementation of the National Plan to Address systems and better public health. This includes the impact Alzheimer's Disease, which aims to prevent and effectively of the economic crisis on treat Alzheimer's disease by 2025. healthcare and health systems, migration and public health, "The Alzheimer's Association celebrates this significant nutrition and physical activity, milestone with our more than 600,000 advocates who eHealth and health innovation have been relentless in their efforts given the current fiscal climate. Their determination and passion are second www.gr2014.eu/news/press-releases/greek-health-minister-presented- to none," said Harry Johns, President and CEO of the priorities-greek-presidency-epsco-council www.gr2014.eu/eu-presidency/the-greek-presidency/programme-and- Alzheimer's Association. priorities 2 January: Greek group begins work on a national Science Watch dementia strategy 26 November: Memories dulled by lack of NMDA In September 2013, Greek Minister of Health Adonis receptors Georgiadis announced the formation of a working group Decoding brain activity patterns to better understand to draft a national dementia strategy. The group of eight learning and memory represents a huge challenge for members met for the first time in November. It is headed scientists working in the area of Neurobiology. Progress in by Dr Paraskevi Sakka, President of the Athens this area could be extremely useful in understanding the Alzheimer’s Association and also includes professors of dementia-affected brain, and the process of memory neurology, psychiatry and law as well as health recall decline. economists and carers. A recent mouse study at the Medical College of Georgia, There are currently very few specialised services for investigating memory code in N-methyl-D-aspartate people with dementia in Greece. These include 15 (NMDA) in the hippocampus has led to some progress in memory clinics, 13 day care centres and three respite care ‘mapping’ some of these codes. facilities that serve more than 5,000 people with dementia and their carers. In contrast, ADI’s World “We have begun to crack the neural code, which allows us Alzheimer Report 2013 shows that there are 200,000 to look in real time at how thoughts happen and how people with dementia in Greece and 400,000 family carers memories are made”, said Dr Joe Tsien, corresponding to look after them. author of the study in the journal PLOS ONE, neuroscientist at the Medical College of Georgia. The Greek Alzheimer associations are very active, organising awareness campaigns, seminars for health Using Pavlovian techniques, the team played a tone to professionals, screening programs for the public, groups of mouse models (some normal and some lacking educational programs for carers and also scientific the NMDA receptor), followed 20 seconds later by a mild research. The associations will continue to be closely foot shock. The normal mouse models quickly made the

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association, but the connection never really registered 2 December: JPND launches two calls for with those lacking the NMDA receptor. neurodegenerative diseases Postdoctoral Fellow Hui Kuang also assigned musical JPND (the EU Joint Programme – Neurodegenerative notes to the memory activity of each mouse model, which Disease Research) has launched two calls for proposals resulted in random noise by the NMDA-lacking models, as aimed at investigating cross-disease pathways in opposed to a dynamic rhythm from normal ones. “Their neurodegenerative diseases (including dementia) and to tones are flat, the association is poor, while everything we identify new preventive strategies. The programme will register in the healthy brain is associative.” disburse some EUR 23 million to applicants from 18 “They form the initial patterns, but don’t rehearse them”, European countries. said Tsien. By knowing what these patterns look like and Call 1: Cross-Disease Analysis of Pathways what they mean, the reasons for memory loss during the ageing process could be measured, and then drugs that This call is for proposals to perform network analyses in are “truly effective at aiding memory” could be identified different neurodegenerative and other chronic diseases to and tested, some of which may already be out there in elucidate the underlying mechanisms involved. The simple forms such as caffeine, according to Tsien. combined analysis of diseases across traditional clinical boundaries may lead to a re-definition of clinical This ability to decode how and what the brain is recalling phenotypes and new approaches in the treatment of could one day help to better assess and treat conditions neurodegenerative diseases. such as Alzheimer’s disease. JPND Countries participating in this call: Belgium, Canada, www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0079454 Finland, France, Germany, Ireland, Italy, Luxembourg, the 29 November: Large-scale clinical trial and study Netherlands, Norway, Poland, Portugal, Slovak Republic, into preventative effects of aspirin on dementia Spain, Sweden, Turkey. Interested applicants are invited to present a pre-proposal submission by 18 February The effects of low-dosage aspirin (as well as some other 2014. non-steroidal anti-inflammatory drugs or NSAIDs), taken over an extended period of time have long been of Call 2: Pilot Studies on Preventive Strategies interest in the area of Alzheimer's disease and dementia This call aims to encourage interdisciplinary “pilot” studies research. for the design of preventive strategies that may modify Medical and research professionals have, however, both the risk of developing neurodegenerative diseases repeatedly warned of the significant side-effects risks of and of symptom progression. long-term use of NSAIDs (including stomach bleeding, JPND Countries participating in this call: Austria, Belgium, ulcers, and kidney problems). Denmark, Finland, France, Germany, Ireland, Italy, On 29 November the largest ever study and clinical trial in Luxembourg, the Netherlands, Norway, Poland, Portugal, Australia, ASPREE (ASPirin in Reducing Events in the Spain, Sweden, Turkey. Interested applicants are invited Elderly) was announced: ASPREE is a study of 15,000 to present a pre-proposal submission by 20 February people (to date) aged over 70 in Australia and the US, on 2014. the use of aspirin to prevent disease in the elderly. The www.neurodegenerationresearch.eu/initiatives/annual-calls-for- recruitment drive continues until July 2014, with the hope proposals/open-calls/ of reaching 19,000 participants. 3 December: Amlodipine to undergo a clinical trial ASPREE study executive officer Dr Robyn Woods for vascular dementia commented, "Because of the power provided by the number and the targeted age range of participants, the The UK Alzheimer's Society and the British Heart results of this trial will offer us more insight than any Foundation (BHF) have announced a clinical trial of the other study into the benefits of aspirin for older people". existing drug amlodipine for the treatment of vascular dementia. Research team leader Professor Mark Nelson, from Hobart’s Menzies Research Institute in Tasmania, says The four-year trial will involve 600 people with a specific that the ASPREE study and clinical trial will examine type of vascular dementia called subcortical ischaemic whether the potential primary prevention benefits of low vascular dementia (SIVD). Researchers will begin dose aspirin outweigh the risks linked to its use, in recruitment in early 2014 and will be led by Dr Peter particular in older, healthy individuals. Passmore, Professor of Ageing and Geriatric Medicine at Queen's University in Belfast. They hope to show that a Dr Simon Ridley of Alzheimer’s Research UK said: daily 10mg dose of the drug can significantly improve “Systematic reviews of previous aspirin trials have so far memory and cognitive health. showed no evidence that the drugs can benefit people with dementia, but the studies done to date have been Amlodipine is currently used to treat high blood pressure, relatively small. Large-scale controlled trials could provide which is a major risk factor for vascular dementia. It is more conclusive evidence”. known to enter the brain and researchers think it might work by protecting neurons from damage when blood www.ncbi.nlm.nih.gov/pubmed/24113028 supply to the brain is restricted.

www.qub.ac.uk/home/ceao/News/Title,425013,en.html

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10 December: Merck launches clinical trials for its Alzheimer’s disease and other causes of cognitive BACE inhibitor impairment. The active substance is florbetaben (18F), a radiopharmaceutical indicated for PET imaging of Merck has announced two new Phase 3 trials of its MK- β-amyloid neuritic plaque density. 8931 compound for Alzheimer's disease. This follows a successful mid-stage trial of 200 patients who had been The benefit of florbetaben is its ability to estimate beta- treated with MK-8931 for at least three months. amyloid deposition, thereby contributing additional information to the clinical diagnostic process in The first trial is called EPOCH and will involve up to 1,960 Alzheimer’s disease. The applicant for this medicinal participants with mild to moderate Alzheimer's disease product is Piramal Imaging GmbH. over 18 months. The second trial (APECS) will test the www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicine same drug in people with mild cognitive impairment and s/002553/smops/Positive/human_smop_000626.jsp&mid=WC0b01ac058001 biomarkers for Alzheimer's disease over a two-year d127 period. 19 December: Post-menopausal heart patients are MK-8931 is a BACE inhibitor, i.e. it blocks the activity of an more prone to dementia enzyme called beta secretase that is involved in the production of beta amyloid. In 2012, a different BACE A new study shows that post-menopausal women with inhibitor trial was stopped due to safety concerns. In this heart disease are nearly a third more likely to develop case, an independent monitoring board was given access dementia. to the data of Merck's early trial and concluded that the The researchers were led by Dr Bernhard Haring, a Clinical Phase 3 trials could proceed safely. Fellow at the University of Würzburg in Germany. They www.nia.nih.gov/alzheimers/clinical-trials/mk-8931-mild-moderate- studied nearly 6,500 women between the ages of 65 and alzheimers-disease 79 who had healthy brain function at the start of the www.alzforum.org/therapeutics/mk-8931 study and came to the following conclusions: 14 December: Roche moves molecules across • Postmenopausal women with heart disease or blood brain barrier vascular disease were 29 % more likely to experience Roche has demonstrated a new method to deliver large cognitive decline over time compared with women antibody molecules through the blood brain barrier (BBB). without heart disease. The BBB acts as a roadblock that prevents unwanted • The risk for cognitive decline was approximately toxins - but also medicines - from reaching the central double among women who had a heart attack nervous system and the brain. compared with those who had not had a heart attack. The Roche “brain shuttle” essentially fools an existing • Women who had heart bypass surgery, carotid natural transport mechanism called receptor-mediated endarterectomy (surgical removal of a blockage in a transcytosis into allowing large molecules to enter. More neck artery) or peripheral artery disease were at specifically, the shuttle activates the natural transferrin greater risk for cognitive decline. receptor (TfR) in a specific mode that triggers the • Risk factors such as high blood pressure and diabetes mechanism called receptor-mediated transcytosis. This is increased risk for cognitive decline over time. normally used to transfer proteins within the brain but is • Obesity did not significantly increase cognitive decline now suborned to bring in external bodies as well. in elderly women. http://circ.ahajournals.org/cgi/content/meeting_abstract/127/12_MeetingA The new technique showed a significant reduction of bstracts/AMP25?sid=e6ffdf9a-6fef-4e2b-9355-bfd83c38baab amyloid load when tested in Alzheimer mouse models. According to Luca Santarelli, Head of Neuroscience, 20 December: NAD moves back ageing indicators Ophthalmology and Rare Diseases at Roche: “The target in mouse models engagement of investigational antibodies in the brain in a preclinical model was increased by over 50-fold compared Researchers from Harvard University and the University of to the parent antibody." New South Wales (Australia) have discovered a way of restoring the efficiency of cells and thus reversing the Roche will continue to investigate the shuttle’s potential, ageing process in muscles. including the transport of growth factors, antibodies, peptides and oligonucleotides across the BBB. The research was conducted on mouse models and focused on an area of energy-producing cells called www.cell.com/neuron/retrieve/pii/S0896627313010350 mitochondria. Over time, the communication between 19 December: EMA approves neuroimaging agent this area and the cell nuclei degrades, leading to the florbetaben ageing process. The scientists injected two-year old mice with On 19 December, the EMA’s Committee for Medicinal nicotinamide adenine dinucleotide (NAD) over one week. Products for Human Use (CHMP) adopted a positive This is a naturally occurring compound in humans that opinion, recommending the granting of a marketing reduces with human age. The results showed that key authorisation for the medicinal product florbetaben. indicators of ageing moved back to that of a six-month-old Florbetaben is a radiopharmaceutical indicated for mouse, or the equivalent of making a 60-year-old person Positron Emission Tomography (PET) imaging of β-amyloid feel like a 20-year-old. neuritic plaque density in the brains of adult patients with Dr Nigel Turner, senior research fellow at UNSW and co- cognitive impairment who are being evaluated for author of the study, said: “We know that this cell

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communication breaks down in diseases such as 30 December: Cholesterol levels may affect onset dementia, cancer and type-two diabetes. This research of Alzheimer's disease focused on muscles, but it could benefit multiple organs and delay and prevent a lot of these diseases occurring.” A study investigating the associations between serum cholesterol levels and cerebral amyloidosis, which can be www.cell.com/retrieve/pii/S0092867413015213?cc=y an early indicator of Alzheimer's disease, was published in 20 December: Novartis withdraws EMA extension JAMA Neurology journal on 30 December. for rivastigmine The study involved 74male and female participants with an average age of 78 and included three people with mild dementia, 33 who were cognitively normal and 38 who had mild cognitive impairment.

On 20 December, the European Medicine Agency The participants’ amyloid levels were obtained using PET announced the withdrawal of an application by Novartis scans, in combination with a tracer that binds with to extend the use of its rivastigmine patches to people amyloid plaques. Higher fasting levels of LDL cholesterol with severe Alzheimer’s disease. and lower levels of HDL cholesterol were both correlated with lower levels of amyloid plaque deposition in the Novartis has seen two types of its transdermal patches brain. This is a pattern that mirrors the relationship authorised for use in the EU since 1998, for the treatment between HDL and LDL cholesterol in cardiovascular of patients with mild to moderately severe Alzheimer’s disease, according to lead researcher Professor Bruce disease. The company wished to extend their use to Reed, an associate director of University of California people with severe Alzheimer’s disease, but the EMA Davis’ Alzheimer’s Disease Center. concluded that this would create more risks than benefits for patients. A word of caution from Reed and his co-authors, however, was that the study does not prove cholesterol is In particular, the reviewers were concerned that several directly affecting amyloid deposition. Unhealthy side effects (including falls, vomiting and diarrhoea, cholesterol levels could be linked to vascular damage, dehydration, loss of appetite and psychiatric disorders) such as small strokes, and those micro-injuries could be seemed to be more common and more severe in patients the reason for the protein deposits. with severe Alzheimer’s dementia. This could have more serious consequences in patients with severe disease, Dr Laura Phipps of Alzheimer's Research UK warned that which is of concern in this more vulnerable population. there was still insufficient evidence to recommend that cholesterol-lowering drugs such as statins should be used www.ema.europa.eu/docs/en_GB/document_library/Medicine_QA/2013/12 to treat Alzheimer’s disease. "While this study did not /WC500158686.pdf investigate the mechanism behind the link, the findings 23 December: Study shows AD origin in the lateral add to existing evidence that cholesterol could play a role entorhinal cortex in the Alzheimer's disease process”, she said. http://archneur.jamanetwork.com/article.aspx?articleid=1791528&resultClic An American research team has shown that Alzheimer's k=3 disease originates in the lateral entorhinal cortex (LEC), a small region of the brain linked to the hippocampus. 1 January 2014: Vitamin E may slow functional decline in mild to moderate Alzheimer’s disease The study also shows how the effects of AD spread from this area to other regions of the cerebral cortex. One A study published in the January 1 issue of JAMA found region especially targeted is the parietal cortex, whose that a daily, high dose of alpha tocopherol (fat-soluble functions including spatial orientation and navigation. vitamin E) given to patients with mild to moderate Alzheimer's disease was effective in slowing functional The scientists were led by Professor Scott Small, director decline by about six months during an average follow-up of the Alzheimer's Disease Research Centre at Columbia time of two years. University in New York. They conducted MRI brain scans of 96 healthy adults over the age of 65. The results The study was carried out by Dr Maurice Dysken and his showed reduced LEC activity in 12 people who later colleagues at the Minneapolis VA Medical Center. They developed symptoms of AD, compared to normal activity examined the effects and safety of alpha tocopherol, in those who did not. memantine and the combination of the two on patients with mild to moderate AD who were also taking an Professor Small said: “This study is the first to show in acetylcholinesterase inhibitor. They performed a living patients that it begins specifically in the LEC. The randomised clinical trial involving 613 patients with mild LEC is considered to be a gateway to the hippocampus, to moderate AD, between 2007 and 2012 at 14 Veterans which, among other functions, plays a key role in the Affairs medical centres in the U.S. consolidation of long-term memory. If the LEC is affected, other aspects of the hippocampus will also be affected. The researchers noted that the placebo group lost approximately three units more on the ADCS-ADL “Now we've pinpointed where Alzheimer's starts, and (Alzheimer's Disease Cooperative Study-Activities of Daily shown that those changes are observable, we may be able Living) inventory than the alpha tocopherol group. to detect Alzheimer's at its earliest preclinical stage." Caregiver time in assisting patients was shown to be www.nature.com/neuro/journal/v17/n2/full/nn.3606.html reduced by about two hours per day in the alpha tocopherol group.

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Neither memantine nor the combination of vitamin E and 21 January: Redesigned yeast protein unravels memantine showed clinical benefit in this trial. Vitamin E misfolded proteins did not delay cognitive or memory deterioration. The study had a high drop-out rate, which may have affected A new study shows how the Hsp104 yeast protein may the results. A second limitation was the small number of provide a way to “unravel” the misfolded proteins that women who took part. are associated with neurodegenerative diseases. Hsp104 is known as a chaperone protein, as it assists in the Dr Eric Karran, director of research at Alzheimer's development and functioning of other protein structures. Research UK, said the trial suggested vitamin E may It is not naturally present in humans, but scientists modestly slow the decline in day-to-day functioning in developed a re-programmed version that suppresses the people with mild to moderate Alzheimer's, but without toxicity associated with misfolding. having an effect on memory and thinking skills. He said it was too early to recommend vitamin E as a treatment. The researchers were led Dr James Shorter, Associate Professor of Biochemistry and Biophysics at the Perelman http://jama.jamanetwork.com/article.aspx?articleid=1810379 School of Medicine, University of Pennsylvania. They had 6 January: Recoding GP records may improve already determined that the natural version of Hsp104 is dementia diagnosis active against neurodegenerative proteins. A new UK study shows that a review of patient records by In this study, they sought to increase that activity by GPs could significantly increase the number of dementia conducting a screening of numerous Hsp104 variants. Dr diagnoses. Shorter said: "Luckily several variants came out of our screen that could suppress the toxicity associated with The researchers were led by Dr Sube Banerjee, Professor misfolded and clumped FUS, TDP-43 and alpha-synuclein of Dementia at the University of Sussex. They examined disease proteins in yeast, while also enhancing proper the records of 23 GP practices across 19 London protein function." boroughs. The results show that a coding review could increase the UK national diagnosis rate of dementia to The study was carried out on worm models and the 55%. The miscoding of dementia was mainly due to the researchers plan to move on to mouse models. Dr Shorter current coding system or unclear information from health pointed out that this is not yet a cure or practical care facilities. treatment for neurodegenerative disease, but a major first step toward that ultimate goal. "We've defined that it According to the authors, these results demonstrate the is possible to achieve clot-busting activity in a simple potential of a simple primary care coding exercise - model system. The challenge is to move it forward from requiring no specific training - to increase the dementia there." identification rate. Implementing this exercise appears to www.sciencedirect.com/science/article/pii/S0092867413015432 be a simple and effective way to improve recognition rates in primary care. 22 January: EnVivo announces Phase 3 clinical trial

http://bmjopen.bmj.com/content/3/12/e004023.full for encenicline EnVivo Pharmaceuticals recently announced the launch of COGNITIV AD, a Phase 3 clinical trial to evaluate encenicline-hydrochloride (EVP-6124) in people with Alzheimer’s disease. www.alzheimer-europe.org/Donation The trial programme consists of two randomized, double- 14 January: Pfizer to conduct clinical trial on game blind, placebo-controlled trials, with approximately 1,600 platform patients at sites in the United States and other countries. Patients will be randomized to receive one of two doses Pfizer has announced plans to assess a gaming platform as of encenicline once daily or placebo. a biomarker or cognitive endpoint for people at risk of Alzheimer’s disease. In addition to assessing the safety and tolerability of encenicline, efficacy will be evaluated by two co-primary “Project Evo” is a product of Akili, a US-based company endpoints. These are the Alzheimer's Disease Assessment that develops mobile video games as potential Scale-Cognitive Subscale (ADAS-Cog) as a measure of therapeutics for neurological disorders or as tools for cognition and the Clinical Dementia Rating Sum of Boxes remote monitoring of core cognition. The platform is (CDR-SB) as a measure of clinical function. designed to quantify and improve the ability of individuals to deal with cognitive interference affecting their ability EnVivo is also testing encenicline in people with cognitive to pay attention, plan or make decisions. impairment associated with schizophrenia. www.clinicaltrial.gov/ct2/show/NCT02004392?term=EVP-6124&rank=4 The trial will involve some 100 healthy elderly subjects, www.clinicaltrial.gov/ct2/show/NCT00766363?term=EVP-6124&rank=1 some of whose brains show the presence of amyloid, as determined by Positron Emission Tomography (PET) 23 January: EMA approves rivastigmine patch imaging. The participants’ cognitive abilities will be measured at baseline and over the course of one month’s On 23 January, the European Medicines Agency’s game play. Committee for Medicinal Products for Human Use (CHMP) adopted a positive opinion, recommending the granting of www.pharmatimes.com/Article/14-01- a marketing authorisation for the medicinal product 14/Pfizer_to_assess_Akili_game_as_Alzheimer_s_biomarker.aspx Rivastigmine in the form of transdermal patches. These

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are intended for symptomatic treatment of mild to the films “One Flew Over The Cuckoo's Nest” (1975), moderately severe Alzheimer's dementia. The applicant “Amadeus” (1984) and “The English Patient” (1996). for this medicinal product is 3M Health Care Limited. In recognition of the quality of his work and career www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicine achievements, Mr. Zaentz was also awarded the s/003824/smops/Positive/human_smop_000647.jsp&mid=WC0b01ac058001 d127 prestigious Irving G. Thalberg Award (1997) from the Academy of Motion Picture Arts and Sciences, the 24 January: New global partnership launches call Producers Guild of America's Motion Picture Producer of for dementia research the Year Award (1997) and in 2003 received a BAFTA (British Academy of Film and Television Arts) Academy The UK Alzheimer's Society and the Alzheimer's Drug Fellowship. Discovery Foundation (ADDF) have launched a call for new research projects with potential to speed up the Other internationally acclaimed films produced by Zaentz development of treatments for Alzheimer's disease and include “The Mosquito Coast”, “The unbearable lightness other types of dementia. of being” and “At play in the fields of the Lord”. His last and most recently produced movie was “Goya's Together, the organisations are offering up to EUR 1.1 Ghosts” (2006). million for each project that either tests promising drugs in people in clinical trials or in preclinical animal models, 13 January 2014: Inspector Wallander pursues his advancing them towards testing in humans. The call is last case open for research looking at all forms of dementia including Alzheimer's disease. Inspector Karl Wallandar, the Swedish police investigator from the popular books and TV series, announced in a Research proposals will be accepted until 5 June 5, 2014. recent episode that he is retiring because he is developing www.alzheimers.org.uk/drugdiscoverycall symptoms of Alzheimer’s disease. 30 January: Johnson & Johnson will share clinical In the episode “Farewell”, the veteran officer displays trial data various signs of memory loss, such as forgetting how to make a tie knot and forgetting to feed his dog. He Johnson & Johnson (J&J) has announced an agreement to continually checks to see that the kitchen hot plates are share data from clinical trials with the Yale School of off and omits to tie his shoelaces before going to work. Medicine’s Open Data Access Project (YODA). Under this His colleagues try to cover when he becomes confused agreement, YODA will serve as an independent body to during an interrogation, but inevitably he admits that he review requests from investigators and physicians seeking can no longer function as an investigator. access to clinical trial data from Janssen (a J&J company) Karl Wallander was created by writer and will make decisions on sharing data. Henning Mankell. He is the main character Jane Griffiths, Company Group Chairman, Janssen Europe, of several mystery novels set in and Middle East & Africa, said: “We support the overall around the town of Ystad in southern PhRMA-EFPIA principles of greater clinical trial data Sweden. Wallander has been portrayed on transparency and sharing, including registration and screen by the actors Rolf Lassgård, Krister disclosure of clinical trial results in external registries, Henriksson (pictured) and Kenneth Branagh. publication of results in peer reviewed journals, and sharing of Clinical Study Reports (CSRs). 21 January: Alzheimer Nederland conducts awareness campaign “We believe it sets a new industry standard in ensuring all requests for clinical data are reviewed in a systematic and Alzheimer Nederland has launched a new Facebook objective way that protects patient privacy and campaign to promote dementia awareness among confidentiality.” younger people. The idea is based on one of your Facebook friends tagging you in a manipulated photo. http://medicine.yale.edu/core/projects/yodap/index.aspx www.prnewswire.com/news-releases/johnson--johnson-announces-clinical- In this photo - which will appear on your timeline - it trial-data-sharing-agreement-with-yale-school-of-medicine-242694971.html appears that you were present at a non-existent event. You will see yourself attending an event, but you know Dementia in Society you weren't there at all. Nevertheless...there you are in the photo. 26 November: Triple Oscar winner Saul Zaentz passes away In this very contemporary way, people get to experience for themselves the confusion that Alzheimer's patients Independent film producer and music executive Saul face on a daily basis, and thus the impact that the disease Zaentz passed away on 5 January in San Francisco. He was can have. To make the campaign more credible, 92 years old and, according to his nephew, died due to Alzheimer Nederland is collaborating with existing event complications from Alzheimer’s disease. organisations. The video link below provides an Saul Zaentz started his career in the explanation, including English subtitles. music business and owned “Fantasy www.youtube.com/watch?v=H967wH192PU Records”, one of the world’s largest independent jazz labels. In the 1970’s he moved into film producing and proceeded to win three Best Picture Academy Awards for

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listeners, and has helped bring the disease into the spotlight in the UK. Arnold Peters, the actor who played her husband, Jack suffered from dementia himself and Spencer's real-life husband Roger lived with Alzheimer's disease for five years before a fatal stroke in 2001.

The actress said: "I am absolutely thrilled and 25 January: Documentary on music and memory overwhelmed to receive this. Alzheimer's disease used to wins Sundance award be swept under the carpet, and charities say this storyline The 2014 Sundance film festival in Utah (USA) announced has made an enormous difference in helping people its official category winners on 25 January. Among them understand more.” was the feature-length documentary film “Alive Inside: A Story of Music & Memory”, which received the Audience New Publications & Resources Award in the category of U.S. Documentary. 9 December: JPND releases report on longitudinal “Alive Inside” follows the efforts of social worker Dan cohort studies Cohen - founder of the non-profit organisation Music and Memory - to demonstrate the therapeutic benefits of A JPND Action Group has published a report that brings music for people with dementia. The documentary together, for the first time, the wealth of cohort centres around nursing home patients in the advanced opportunities for neurodegeneration research across the stages of dementia, many of whom do not normally JPND countries. engage much with the world around them. The report is part of an ongoing study of potential actions Cohen meets with caregivers, families and friends to for both disease-based and population-based longitudinal create a playlist of favourite songs and then plays these cohort studies. It is intended to identify areas that can be songs to the patient. The film shows patients begin to expanded or better exploited and also identify new talk, smile, sing and sometimes dance. It seems that the activities. effect of the music continues for a short time after The new report spans general population-based, targeted listening. Footage of one particular patient, Henry, shows (preclinical) and disease-focused cohorts, including the that when his headphones are removed and he is asked following: questions concerning his favourite music, he is able to respond confidently and with excitement about his • analyses of longitudinal and disease cohort studies preferences. He recalls lyrics, singers and song titles and is • an analysis of imaging studies able to elaborate quite eloquently about his emotions concerning music and what it represents to him. • a cohort reference list with web links Professor Oliver Sacks of the neurology department at the Based on the conclusions of the report (see link below), NYU School of Medicine comments: “He has been the JPND Management Board will announce priorities for restored to himself. He has remembered who he is. He action in 2014. has reacquired his identity for a while, through the power www.neurodegenerationresearch.eu/initiatives/jpnd-alignment- of music.” actions/longitudinal-cohorts Cohen said that, while the use of music is certainly not a 17 January 2014: NHS analysis suggests over- cure, "We hope that our film will inspire and prescription of AD medicines educate…and create a grassroots demand for this kind of low-cost treatment, which could help not only patients A new analysis of 2012 NHS data shows that prescription but also caregivers across the globe". rates of donepezil, galantamine, rivastigmine and memantine were 50% higher than expected when http://filmguide.sundance.org/film/13915/alive_inside_a_story_of_music_m compared with AD prevalence rates. emory The data was published as part of an analysis of the use of 26 January: Award for Archers’ actress and praise NICE-approved medicines by the Health and Social Care of dementia storyline Information Centre. The analysis takes into account a June Spencer, the 94-year-old British 2011 NICE recommendation that people with mild forms actress who has played character of Alzheimer’s disease be prescribed dementia drugs. Peggy Woolley in radio drama “The Professor Steve Iliffe, a GP and professor of primary care Archers” since the show began in for older people at University College London, said the 1950, has been honoured with a study was based on old estimates of dementia Lifetime Achievement award. Amid praise for the Archers’ prevalence: "The authors of the report have used long-running Alzheimer's disease storyline, the actress Alzheimer’s Society estimates from six years ago, and the received the award at the BBC Audio Drama Awards situation is different now. My guess is that two-thirds to ceremony, at Broadcasting House in London on 26 three-quarters of people with Alzheimer’s disease are January. known, and that under-diagnosis occurs more often with The plot, which saw Peggy struggling to come to terms vascular dementia. with her husband’s dementia, resonated with millions of

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"Then there is the tendency to describe some people with Minister launched his Challenge in March 2012, and there dementia as “mixed type” with Alzheimer’s features, and are now over 50 communities across the UK on the way to of course some individuals with apparent Lewy body becoming dementia-friendly. I hope we can all draw dementia also receive cholinesterase inhibitors." inspiration from these case studies, and each play our role in making our own community or organisation a NICE - the National Institute for Health and Clinical welcoming and supportive place for people with Excellence - is an independent agency that develops dementia.” standards and performance metrics for those providing and commissioning health, public health and social care “Dementia Friendly Yorkshire” is available in electronic services. format or in hard copy. www.hscic.gov.uk/catalogue/PUB13413/use-nice-app-med-nhs-exp-stat-eng- www.jrf.org.uk 12-rep.pdf

17 January: Joseph Rowntree Foundation publishes "Dementia Friendly Yorkshire" Contact Alzheimer Europe: On 17 January, the Joseph Rowntree Foundation released Alzheimer Europe, 14 rue Dicks, L-1417, Luxembourg info@alzheimer- a publication bringing together twenty short case-studies europe.org, www.alzheimer-europe.org of dementia-friendly projects taking place in communities Alzheimer Europe Board across Yorkshire, where the foundation is based. Chairperson: Heike von Lützau-Hohlbein (Germany); Vice-Chairperson: Iva Holmerová (Czech Republic); Honorary Secretary: Charles Scerri (Malta); Featured project locations included various places of Honorary Treasurer: Maria do Rósario Zincke dos Reis (Portugal); religious worship, shops and cafes, as well as public Members: Patrick Maugard (France), Maurice O’Connell (Ireland), Sirpa Pietikäinen (Finland), Helga Rohra (Germany), Alicja Sadowska (Poland), services such as transport, museums, hospitals, schools, Henry Simmons (UK - Scotland). libraries and sports centres, among others. Alzheimer Europe Staff Executive Director: Jean Georges; Project Officer: Ana Diaz; EU Public Project Leader, Philly Hare said “I am delighted that the Affairs Advisor: Annette Dumas; Communications Officer: Kate Ellis; idea of the dementia-friendly community is taking off Director for Projects: Dianne Gove; Conference and Event Coordinator: around the UK. Five years ago the concept of the Gwladys Guillory; Finance Officer: Stefanie Peulen; Director for Communication: Alex Teligadas; Administrative Assistant: Grazia dementia-friendly community was almost unheard of. Tomasini. Things started to move more quickly when the Prime

AE Calendar 2014

Date Meeting AE representative 4-5 February European Commission Meeting of governmental experts on dementia (Luxembourg, Luxembourg) Jean 11 February Meeting with Sandoz (Luxembourg, Luxembourg) Jean Board meeting and AE lunch debate at the European Parliament on Innovative medicines initiative 17-18 February AE staff and Board and Company round table meeting (Brussels, Belgium) EFNA launch of a research from the Economist Intelligence Unit on the economic and social cost of 19 February Annette workplace absenteeism in Europe (Brussels, Belgium) European Medicines Agency Working Party with Patients’ and Consumers’ Organisations (London, 24-25 February Jean UK) Future Conferences

Date Meeting Place th 20-22 March 2014 58 Annual meeting of the German society for clinical neurophysiology and functional imaging Berlin, Germany (DGKN), www.dgkn-kongress.de 20-23 March 2014 30th International Congress of Clinical Neurophysiology of the IFCN (ICCN), www.iccn2014.de Berlin, Germany 26-29 March 2014 13th Int. Geneva/Springfield Symposium on Advances in Alzheimer Therapy, www.ad-springfield.com Geneva, Switzerland 8 April 2014 Third national Creative Dementia Arts Network conference, Oxford, UK www.creativedementia.org/2014conference 1-4 May 2014 29th ADI Conference, www.adi2014.org San Juan, Puerto Rico 8-11 May 2014 8th World Congress on Controversies in Neurology (CONy), www.comtecmed.com/cony/2014/ Berlin, Germany 16-17 May 2014 The Alzheimer’s Show, http://alzheimersshow.co.uk/ London, UK 31 May-3 June 2014 EFNS-ENS Joint Congress of European Neurology, http://www.jointcongressofeuropeanneurology.org Istanbul, Turkey 11-14 June 2014 12ème Réunion francophone sur la maladie d’Alzheimer et les syndromes apparentés Montpellier, France 26-27 June 2014 International Dementia Conference, "Risky Business 2 – this time it's personal!", Sydney, Australia http://www.dementiaconference.com/call-for-papers 5-9 July 2014 9th FENS Forum of Neuroscience, http://forum.fens.org/2014 Milan, Italy 20-22 October 2014 24th Alzheimer Europe Conference “Dignity and autonomy in dementia”, www.alzheimer- Glasgow, United Kingdom europe.org/Conferences th 23-25 October 2014 9 International Conference on Frontotemporal Dementias, www.ubccpd.ca Vancouver, Canada

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The Alzheimer Europe newsletter arises from the 2013 Work Plan of Alzheimer Europe, which has received funding from the European Union in the framework of the Health Programme.

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