NEWSLETTER April 2010

due to the travel disruption Highlights in this issue Editorial caused by the volcano in Iceland, we had to cancel this 17 April 2010: European In April, we event. We look forward to our Commission contributes were able to next debate in the Parliament, nearly EUR 2m to the 4 welcome scheduled for 22 June this year. Joint Programming MEPs Nikolaos Initiative Chountis and The Alzheimer Europe Board Liz Lynne as met up in April and was happy 26 April 2010: Issue 5 of two new with the direction in which the the Dementia in European 2 members of organisation is going and magazine launched the European Alzheimer’s satisfied with the accounts. Alliance. I am delighted to see 28 April 2010: US Panel This month we report on our that our campaign to make finds insufficient evidence members’ work in , dementia a European priority for preventive measures 11 Greece, Ireland, Portugal, continues to receive the support against Alzheimer’s Scotland and the UK. Both of Members of the European disease Ireland and Scotland have Parliament regardless of produced reports regarding nationality and political carers of dementia, highlighting affiliation. different ways in which they

Our political priority to see need support. greater collaboration between As the elections in the UK get European countries on underway, I am pleased that the dementia research also Alzheimer’s Society (UK) received a significant boost this reports that each of the main month, as the European political parties in the UK has Commission has adopted a highlighted dementia research contribution of nearly EUR 2 and care and support as issues million to support the work of which need to be addressed in the Joint Programming Initiative any future government. (JPI) on Alzheimer’s disease and neurodegenerative In this newsletter, we also diseases. This funding will help report on the increasing number to ensure that this important of clinical trials being conducted

initiative, which already has the to identify new drugs for the commitment of 24 European treatment of Alzheimer’s countries, will succeed. disease, whilst a report from the National Institute of Health in The Chair of the Management the United States makes for Board of the pilot JPI, Professor Table of contents sombre reading as to possible Philippe Amouyel, has given an Editorial...... 1 preventive approaches to in depth interview about the reduce the risk of Alzheimer’s European Alzheimer’s Alliance ...... 2 Initiative in issue 5 of the disease. Dementia in Europe magazine, Alzheimer Europe ...... 2 which we launched in April. This Finally, I am happy to report Alzheimer Europe Networking ...... 3 issue of the magazine also that registrations for our th European developments...... 4 carries news on dementia from forthcoming 20 Alzheimer various European countries Europe Conference are now Policy Watch...... 5 (including Malta, Cyprus, well underway and would take Members’ News...... 5 Portugal, Finland, and this opportunity to remind you of Greece) as well as updates on the early bird registration which Science Watch ...... 8 Alzheimer Europe’s work. The is available until the end of Dementia in Society ...... 11 magazine can of course be July. bought in the e-shop of the New resources and publications ..... 11 Alzheimer Europe website. Jean Georges AE Calendar ...... 13 We had hoped to host our 8th Executive Director Future Conferences...... 13 lunch debate in the European Parliament but unfortunately

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European Luxembourg: Lulling Astrid (EPP) Alzheimer’s Alliance Netherlands: In April, Nikoloas Countis (Greece) and Liz Lynne De Lange Esther (EPP), van Nistelrooij Lambert (UK) joined the European Alzheimer’s Alliance, which (EPP), Wortmann-Kool Corien (EPP) brings the total number of MEPs in the Alliance to 45, representing 16 Member States of the European Portugal: Union and six of the seven political groups in the Coelho Carlos (EPP) European Parliament. Slovakia: Mikolasik Miroslav (EPP), Zaborska Anna (EPP) : Hall Fiona (ALDE), Lynne Liz (ALDE), McAvan Linda (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Watson Graham (ALDE), Willmott Glenis (S&D)

Nikolaos Chountis Liz Lynne Greece, GUE-NGL United Kingdom, ALDE Alzheimer Europe

The members of the European Alzheimer’s Alliance 26 April 2010: Alzheimer Europe are the following: publishes issue 5 of the Dementia in Europe magazine Belgium: Issue 5 of the Dementia in Europe Brepoels Frieda (Greens/EFA), Ries Frédérique magazine has been published by (ALDE), Staes Bart (Greens/EFA), Sterckx Dirk Alzheimer Europe. As well as the (ALDE) regular features, highlights of this issue include: Cyprus: • Interviews with the Executive of the Triantaphyllides Kyriacos (GUE-NGL) European Alzheimer’s Alliance (MEPs Czech Republic: Françoise Grossetête, Frieda Brepoels, Dagmar Roth-Behrendt and Brian Crowley) Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP) • Updates on two of the Alzheimer Europe’s current projects that Alzheimer Europe is Denmark: involved in (European Ethics Network and PharmaCog) Schaldemose Christel (S&D) • A review of the 2009 Dementia in Europe Finland: Yearbook on healthcare decision making in Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli Europe for people with dementia (ALDE), Pietikäinen Sirpa (EPP) • Updates on the development of national France: plans in Malta, Cyprus and Portugal Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), • MEP Sirpa Pietikäinen talks about the Griesbeck Nathalie (ALDE), Grossetête Françoise challenges faced by people with dementia (EPP), Morin-Chartier Elisabeth (EPP) in Finland Germany: • An in-depth interview with the Chair of the Management Board of the Joint Niebler Angelika (EPP), Roth-Behrendt Dagmar Programming Initiative of (S&D), Ulmer Thomas (EPP), Weisgerber Anja (EPP) Neurodegenerative diseases, Prof. Philippe Amouyel Greece: • A carer’s perspective of living with Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni dementia in Spain (S&D), Kratsa-Tsagaropoulou Rodi (EPP) • The work of the Greek Association of Ireland: Alzheimer’s disease and related disorders Aylward Liam (ALDE), Childers Nessa (S&D); which celebrates its 15th anniversary. Crowley Brian (ALDE), McGuiness Mairead (EPP), The magazine costs EUR 2.50 (plus EUR 2.50 p&p) Mitchell Gay (EPP) and can be purchased from Alzheimer Europe’s Italy: publications section of the website. Panzeri Pier Antonio (S&D), Toia Patrizia (S&D)

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26 April 2010: Alzheimer Europe Board • European developments, including the Meeting takes place in Brussels forthcoming Belgian Presidency Conference, the Joint Programming The Alzheimer Europe Board met in Brussels, Initiative and Public Health Programme. Belgium. • The forthcoming 20th Alzheimer Europe Discussions included: conference in Luxembourg (September) and the Dementia Ethics Network project. • The 2009 financial accounts which were approved with an operating surplus of The next Board meeting will take place in Brussels nearly EUR 16,000. on 21 June 2010. • The 2010 projected financial accounts. Alzheimer Europe Networking On 2 April (Luxembourg, Luxembourg) Julie met Jean-Paul Reuland from Binsfeld Publishers to discuss the Dementia in Europe magazine. On 7 April (Luxembourg, Luxembourg) Gwladys met Sylvie Meyer for the Luxembourg Conference. On 12 April (Brussels, Belgium) Annette met Antoniya Parvanova, MEP, to discuss the European Alzheimer’s Alliance. On 19 April (Luxembourg, Luxembourg) Gwladys attended the Luxcongres meeting. On 26 April (Brussels, Belgium) the AE staff attended the AE Board meeting. On 27 April (Brussels, Belgium) Annette attended the EFPIA Think Tank meeting. On 27 April (Brussels, Belgium) Annette attended the Employment and Social Affairs Committee meeting when Commissioner Andor presented its 2010 Work Programme. On 27 and 28 April (Antwerp, Belgium) Dianne attended a joint workshop organised by the EFGCP-EUCROF on the Ethical Challenges in Clinical Research at Both Ends of Life. On 28 April (Brussels, Belgium) Annette attended the launch of the Mental Health interest group in the European Parliament. On 28 April (Brussels, Belgium) Annette attended the Industry Committee meeting when Commissioner Geoghan- Quinn presented the 2010 Research Work Programme. On 28 April (Brussels, Belgium) Annette attended the Internal Market Committee meeting when Commissioner Dalli presented the 2010 Consumer Work Programme.

Buy the latest edition of the Dementia in Europe Magazine online at:

www.alzheimer-europe.org/Publications/E-shop

Highlights of this issue include interviews with the Executive members of the European Alzheimer's Alliance, a review of the 2009 Dementia in Europe Yearbook on healthcare decision making in Europe for people with dementia, updates on the development of national plans in Malta, Cyprus and Portugal, challenges faced by people with dementia in Finland, a carer's account of living with dementia in Spain, a reflection of the work of the Greek Association of Alzheimer's disease and related disorders as well as an indepth interview with Professor Philippe Amouyel, the Chair of the Management Board of the Joint Programming Inititative of Neurodegenerative diseases.

€2.50 plus €2.50 handling and postage costs

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European 7 April 2010: Green light for 18 new MEPs The Constitutional Affairs Committee voted on 7 April developments 2010 on Inigo Mendez de Vigo’s report to solve the problem created by the last European elections Here we report on developments from the European which took part under the Nice Treaty: the Nice institutions which may impact people with dementia Treaty established the number of MEPs at 736 while and/or their carers. the Lisbon Treaty, adopted in December 2009, provides for 751 MEPs. 31 March 2010 : EU Commissioner for Administration and Inter-institutional Twelve countries will send new MEPs: Spain (4), Affairs, Maroš Šefcovic, unveils details of Austria, France and (2), Bulgaria, Italy, the 'European citizens initiative' Latvia, Malta, the Netherlands, Poland, Slovenia and the United Kingdom (1 MEP). Germany will lose Following the entry into force of the three seats but only after the next European elections Lisbon treaty in December 2009, the in 2014 as Article 5 of the Act of 20 September 1976 European Commission presented on does not allow curtailing an MEP's mandate. 31 March 2010 a proposal for a Regulation of the European Parliament The Constitutional Affairs Committee has clearly and the Council on the citizens stated that all 18 new MEPs should take up their initiative. seats at the same time in order to maintain the balance of nationalities in the House. It thus urges The new European citizens initiative is Member States to complete their election procedures intended to make the EU more in a pragmatic way as soon as possible. democratic by giving citizens a more direct say in its policies. From now on and once the conditions have The Constitutional Affairs Committee also agreed been met, the European Commission, which drafts with the Council’s recommendation not to summon a legislation, will have a formal obligation to consider Convention to officialise the Treaty change. proposals from citizens. The decision will need to be confirmed in the next To be considered by the Commission, the Treaty Strasbourg plenary, and the European Council would states that an initiative must be backed by at least be in a position to conclude next June in a brief one million citizens from a minimum of one-third of Intergovernmental Conference. EU countries (9 at present). Thus, elaborating on the concept, the Commission has drawn up a set of rules for Europeans to follow in submitting their petitions. Under the current proposals, the number of signatures from each country must be proportional to its size – 4,500 for the four smallest countries up to www.alzheimer-europe.org/Donation 72 000 for the largest. Once at least 300,000 signatures from citizens in a minimum of 3 countries 17 April 2010: European Commission have been collected, the petition will be registered contributes close to EUR 2 million to the with the Commission and a decision made on Joint Programming Initiative on whether the initiative falls within the scope of its Alzheimer’s disease and powers. From that point, the organisers would have neurodegenerative diseases one year to provide the outstanding signatures. The European Commission will be supporting the To avoid fraud, signatories must provide their home work of the Joint Programming Initiative on address, date of birth, nationality and a personal Alzheimer’s disease and neurodegenerative diseases identification number – national identity card, (JPI) with an EU contribution of close to EUR 2 passport or social security number. Organisers will million. also need to disclose who is financing the petition. The European Commission welcomes the meeting of Before this initiative comes into force, the European the Scientific Advisory Board of this very first EU Parliament and the Council must give their approval. Joint Programming Initiative (15 April, Stockholm). 1 April 2010: New Director General takes The Scientific Advisory Board gathers 15 of the top position at DG Sanco specialists in neurodegenerative disease from Europe and elsewhere in the world. Its role is to On 1 April, Paola Testori Coggi took up the position advise on the development and implementation on of Director General at DG Sanco. She the JPI. Professor Philippe Amouyel, from France, replaces Robert Madelin who has chairs this new initiative Management Board. become Director General for Information Society and Media DG. The ultimate goal of the JPI is to accelerate progress in understanding the causes of these debilitating Ms Testori Coggi joined DG Sanco in conditions, leading to early diagnosis, the 2007 as deputy director-general in the development of new treatments and prevention and health and consumers directorate-general. Her the provision of more effective medical and social educational background is in biological sciences. care to improve the quality of life for patients and care-givers.

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To achieve this goal, 24 European countries, sharing • Commit to ring-fence the science budget in a common vision, have decided to work together in the next Government spending review. an unprecedented collaborative initiative in research which is seeking to align their scientific The Liberal Democrat Party pleges: competencies, medical strengths and social • Not to implement the Free personal Care approaches to tackle the challenge. at Home Act, targeted at people with the The JPIwill start by: highest care needs, but instead use the money intended for this scheme to provide • Developing a strategic research agenda for respite care for 1 million carers neurodegenerative diseases • To establish a Commission with cross- encompassing basic, clinical and social party political support to look into the long- research, with the latter also including term future of social care, based on the models of healthcare delivery. principles of affordability, fairness and • Implementing that agenda by proposing sustainability. innovative ways of pooling expertise and • To keep the Attendance Allowance resources to address the fragmentation according to a spokesperson. and duplication of current research efforts. • To prioritise dementia research in the Policy Watch health research and development budget. In this section you can find articles on various We provide full references to national policies and initiatives which can have an articles on our website. Please visit impact on issues surrounding dementia. the completely revised Alzheimer 15 April 2010: The Alzheimer’s Society Europe website on: considers how the UK political parties election manifestos affect people with www.alzheimer-europe.org dementia The Alzheimer’s Society has Members’ News compared the three main UK political parties manifestos in In this section we report on our members’ latest relation to care and support, attendance allowance initiatives and work. and dementia research. 12 April 2010: German booklet on rights The Conservative Party pledges to: for people with dementia updated • Introduce a voluntary one-off insurance The German Alzheimer Society premium, at a suggested cost of GBP (Deutsche Alzheimer Gesellschaft) have 8,000, to cover the costs of care in a care published an updated version of their home, guide to legal and financial issues for • Design a system to allow people to top-up people with dementia entitled “Ratgeber in this insurance premium to cover the costs rechtlichen und finanziellen Fragen”. Lawyer, Bärbel of people receiving care in their own home Schðnhof, reviewed the booklet and said that the guide provides information about legal rights and • Support people to live independently at hopes to encourage people to exercise these rights home and have access to the personal and not be put off by a laborious application process. care they need. • Protect the attendance allowance. The guide to legal and financial issues for people with dementia and their carers has 160 pages (6th • Give dementia research (including edition) and costs EUR 6. Alzheimer’s) greater priority within NHS and Medical Research Council funding. 15 April 2010: Alzheimer’s Society report published on criteria for improving The Labour Party pledges to : quality of life for people with dementia • Create a National Care Service which Following on from the “Dementia – out of the would involve the introduction of free shadows” report, in which personal care in the home for those with people with dementia spoke the highest care needs, a cap on the costs out about stigma and the of care charges in a residential care home impact that the diagnosis had on their lives, the after two years, the establishment of a Alzheimer's Society has undertaken a new project Commission to reach consensus on focusing on quality of life in dementia. The new financing the system, and the report, “My name is not dementia” presents the establishment of a comprehensive National findings of the first stage of this project. Care Service, free at the point of use, for all adults with an eligible care need. Acting Chief Executive, Ruth Sutherland, explains in • Rule out changes to the Attendance the preface of the report that “By listening to those Allowance in the next Parliament (this was who live with dementia, this piece of work begins to mentioned in their recently published White bring together what they think is important.” The Paper (Building the National Care Service) report identified 10 key quality of life indicators by people with dementia:

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• Relationships or someone to talk to Part of the project entailed interviews with people with dementia and it was clear that they want to lead • Environment an independent life for as long as possible. This is • Physical health because they feel secure and maintain their own • Sense of humour identity in their own home. The project showed that such independence is a possibility for people with • Independence dementia if they are adequately supported in their • Ability to communicate home environment. Prof. Andreas Kruse said that • Sense of personal identity people with dementia need "protection and support to live alone", with support by a "caring community", in • Ability or opportunity to engage in activities which citizens are sensitive and attentive and are • Ability to practise faith or religion willing to take responsibility. • Experience of stigma. The project also highlighted the role of municipalities, cities and districts as they can make an important Four recommendations were made: contribution to informing the public about dementia • To develop a monitor of quality of life for and offering training and networking services for people with dementia by using the findings major occupational groups. in the report together with the existing body The results of the project are to be found in the of knowledge about what is important for a handbook "Allein leben mit Demenz. the quality of life. Herausforderung für Kommunen” (EUR 10) • That the range of issues regarding the presented on a DVD, which can be ordered from the understanding and measurement of quality German Alzheimer Society. The DVD also contains of life for people with dementia highlighted interviews (from people living alone with dementia in the report be used to inform future work about their needs, desires and fears) and training on quality of life in dementia and dementia materials (for police officers, firefighters, bank services and policy in general. employees, people working in retail and the • That policy makers, regulators and service neighbourhood). The role and scope for action by providers ensure they consider the breadth local authorities is also addressed. Detailed of factors that impact on quality of life proceedings of the launch event will be made throughout the course of developing and available in May 2010. implementing their work, and 16 April 2010: Greek Alzheimer • That policy makers and service providers association organises an “Alzheimer’s recognise that quality of life is possible Chocolate Evening” following a diagnosis of dementia and that this recognition informs all of their Following the well known concept of the Alzheimer's dementia-related work. café, the Greek Association of Alzheimer’s Disease and Related 16 April 2010: German Alzheimer Disorders recently organised an association presents their project “living event called “Alzheimer’s alone with dementia – training in the Chocolate Evening”. The event community” was held on Thursday, 16 April 2010 in the Military Officer’s Club in the centre of One of the German Alzheimer association’s priorities Thessaloniki. is to support people who live alone with dementia, who are ever-increasing in The event was a unique opportunity for people with number. Their project “Living alone with dementia, their carers, relatives and personnel to dementia – training in the community” meet in a friendly environment in order to socialise aims to help address this priority and the Association and tackle social stigma. Many sponsors have presented this project at the symposium held by the supported this initiative, mainly by providing the Federal Ministry for Family Affairs, Senior Citizens, necessary chocolate products to treat the guests. Women and Youth in Berlin. The project was The Military Officer’s Club also kindly provided a welcomed by Dr Hermann Kues, Secretary of State. spacious room within the venue, to host nearly 400 people who attended the event. Heike von Hohlbein-Lützau, Chairperson of the German Alzheimer Society, explained that it is in the Professor Magda Tsolaki, president of the Greek early phase of dementia that people are living alone Federation of Alzheimer’s Disease and Relative in their household. At this stage, people with Disorders, who pioneered the idea, had also the dementia can shop, get money from the bank and chance to present to the audience a brief discussion may be active in associations. Often everything with one carer, whose experience and advice acted works well, but if someone buys a kilogram of as a guideline for the rest of the families who bananas three times daily, carries huge amounts of attended the event. The carer had many experiences money several times a week or is wandering the to share, since she took care of her mother and her streets, something is not right. But what can clerks, husband as well, both suffering from Alzheimer’s salespeople, police officers and neighbours do in this disease. Thus, “Alzheimer’s Chocolate Evening” was situation? It is important to recognise that these may not only a social event but also a fruitful exchange of be the symptoms of dementia in order to better experiences among people with dementia and their understand what people with dementia want and carers. The Greek Federation hopes that this what type of support can be provided.” initiative will be one of many to follow in their

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continuous efforts to improve the quality of life for future of scientific study to benefit some of society’s people with dementia. most vulnerable members. 23 April 2010: UK – Alzheimer’s Society ‘One in three people over 65 will die with dementia calls for all nurses to be trained in yet dementia research is still drastically underfunded. dementia care It is vital that the necessary money and expertise are available for this and research into ageing more The Alzheimer’s Society called has called for all generally if advancements are to be made.’ nurses to be trained in dementia care and has made recommendations on how dementia should be 27 April 2010: Research published on included in the Nursing and Midwifery Council carers’ experiences which was standards. commissioned by the Alzheimer Society of Ireland Andrew Chidgey, Head of Policy and Public Affairs of the Society said, A report entitled “Care for People with Dementia: “People with dementia occupy up to a Irish Family Carers”, which was quarter of hospital beds at any one time commissioned by the Alzheimer Society of yet many are receiving inappropriate Ireland and St Luke’s Home in Cork, care and leaving hospital far worse than describes 14 carers’ experiences following when they arrived. Nurses regularly tell the move of a relative with dementia from the family us they’re not receiving enough training in dementia. home into nursing home care. This needs to end. The NMC must recommend that all student nurses receive training that equips them to Lead author of the report, Prof. Murna Downs, said provide the best dementia care possible. The draft “What is striking about this research is the clear standards can also be strengthened to help ensure commitment carers have to continuing to care for that dementia training is in all university curriculums.” their relative after admission to long-term care, as well as a desire for their relative to experience the 26 April 2010: runners same standards of care they received in the family raise money for the Alzheimer’s Society setting.” The Alzheimer’s Society’s running team raised GBP Recommendations are made in the report including: 360,000 in this year’s . Among the Alzheimer • Better resourcing of community-based Society’s runners were Yasmina services for people with dementia and their Siadatan - who won the 2009 carers, so nursing home admissions are a Apprentice programme, Alan pro-actively planned choice rather than White - Oasis drummer, Richard being crisis-driven. McCourt - television presenter and • Greater recognition by health authorities Rick Guard – Jazz singer. that carers need guidance and support in order to navigate the care system and Director of Fundraising and Marketing, Jo Swinhoe, when accessing support services. said: 'We would like to say an enormous thank you to all our runners who rose to the challenge of the Virgin • Campaigns to challenge the ignorance and London Marathon 2010. We are incredibly fortunate stigma associated both with dementia and to have such dedicated supporters, and are truly nursing home care. grateful for all the training, effort and energy they • Ensuring nursing homes actively support have put in to completing the Marathon to raise funds carers who wish to remain involved in the for Alzheimer's Society.” care of their relative, while respecting the wishes of those who no longer want to play 26 April 2010: Alzheimer’s Society Acting such a role. Chief Executive named Chairman of research forum 28 April 2010: Alzheimer Portugal introduces new Workshops - “Alzheimer's Alzheimer’s Society’s Acting Chief Executive has Disease - A personal challenge: strategies been appointed to the top post of an influential UK research forum. Ruth for informal caregivers/ Legal Aspects” Sutherland has taken on the Due to the increasing number of additional role of chairperson of the people diagnosed with UK Age Research Forum (UKARF). Alzheimer's disease, and the great need of support She replaces Neil Hunt who stood and training by caregivers to provide better care to down from the role and his role as Chief Executive of their relatives with dementia, Alzheimer Portugal has the Alzheimer’s Society in March this year. been developing its training program. The forum, made up of government, research council In 2010 two new workshops were created: The first and charity representatives makes a positive one aims to provide caregivers with strategies to difference to the lives of older people by promoting cope with the changes that Alzheimer's disease high quality research. generates in their daily routines, family activities and personal/professional life. Through a series of Ruth Sutherland said: ‘I am very excited to have the practical exercises the participants are able to opportunity to chair this influential group. The UK Age explore new ways of improving the management of Research Forum provides an excellent platform for emotions, time and information, they have to deal key funders in the field of ageing research to come with, when coping with dementia. This workshop is together, share their expertise and help shape the

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given by Henrique Fernandes Silva (a caregiver with gardens and lighting and then drew up proposals for several years of experience). future care home design. The researchers noted that more stimulating homes showed improvements in The second workshop aims to give caregivers tactics residents physical or mental condition and that this to deal with legal issues which are essential for was not necessarily linked to greater luxury or more providing appropriate and efficient care, based on the staff. rights of people with dementia. The proposals drawn up include special attention Business management and protective regimes for being paid to: people with dementia (guardianship) are just a few examples of the themes addressed in a simple and • The layout of the premises: A sense of understandable way, using concrete situations. neighbourhood could be achieved if the homes were designed as small single Training is provided by the President of Alzheimer storey ‘villages’ with shops, cafes and Portugal Board, Maria do Rosário Zincke dos Reis gardens. (who is a lawyer by profession). • Accessibility: Plans should be made to 28 April 2010: Alzheimer Scotland enable residents to take part in activities launches report on the provision of care such as gardening, eg. ensuring to people with dementia accessibility for wheelchair users, using raised flower beds in gardens to allow The report “Let’s get personal – residents to grow vegetables and using personalisation and dementia” by special types of bird feeders, allowing Lindsay Kinnaird, has been residents to feed the birds. launched which looks at the way social support is provided to people with dementia • Activities: (a) for children and residents. and their carers. The report focuses on 12 case Intergenerational games and exercises studies where families were able to organise should be available to encourage children specialised support by using Direct Payments from to visit residents, (b) for residents. The the Social Work Department. The support included team noted that one care home left out old the employment of personal assistants for overnight engine parts which were of interest to support and also support allowing respite breaks for residents. carers. The report highlighted a number of barriers to • Natural light: The team urged developers Direct Payment for people with dementia and makes to incorporate natural light and sheltered recommendations on how to use the payment outdoor seating. system. • Ambiance: In order to help residents Henry Simmons, Chief Executive of Alzheimer remember a normal life, the researchers Scotland, said, “This research highlighted the fact that residents should shows that, when empowered to be made of ordinary activities, such as direct their own support, families cooking and laundry going on. One team effectively combine state designed a tea bar which enabled resources around their own natural residents to sit and chat with visitors. supports - creating truly personalised support. Our The study was led by Professor Hilary Dalke, Director findings add weight to the Scottish Government’s of the Design Research Centre, Kingston University, drive towards self-directed support and point to a London and the proposals are being exhibited at the new way forward for dementia services.” Building Centre, London. “Improving access to personalised support, so that people with dementia and their families can have We provide full references to genuine choice and control, is the key to achieving articles on our website. Please visit the best possible outcome from both state and personal resources. Scotland must change its the completely revised Alzheimer methods of community-based dementia care – Europe website on: remaining static is not an option. We hope that this approach will be recognised by the forthcoming www.alzheimer-europe.org National Dementia Strategy and will be central to reshaping care in the future.” 26 March 2010: Study suggests a relationship between amyloid Science Watch accumulation and the disruption of connections to the hippocampus This section has highlights of the most recent published research on dementia, including research A study which used MRI scans to study Alzheimer’s on the prevention, diagnosis, and treatment of the disease affected brain tissue, found that the disease. “shrinking of the hippocampus was associated with plaque deposits in the temporal inferior cortex”, 22 March 2010: Researchers create suggesting that the accumulation of amyloid in the proposal for future dementia care home temporal inferior cortex causes neurons to die by design disrupting the connections with hippocampus. In the project, ‘Living with Dementia: Can Design The research was led by Dr Perrick Bourgeat, make a Difference?’ researchers visited nineteen Australian e-Health Research Centre and published care homes, studying the architecture, decor, layout, in Neurology.

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1 April 2010: Study suggests that atrial 4 April 2010: Study examines the fibrillation is independently linked to the relationship between body mass and risk of dementia Alzheimer’s disease A five-year study on over 37,000 people found that A study on 140 individuals (70 without dementia and “atrial fibrillation” is independently associated with the 70 with early-stage Alzheimer’s disease) suggests risk of all forms of dementia. Although dementia is that lean mass (muscle and organ weight without fat) strongly associated with ageing, the highest risk of declines in people with Alzheimer’ s disease and that AD was in the younger group, in support of the this may be associated with brain volume and observed association. The presence of AF also function. identified dementia patients at high risk of death. The research was conducted by Jeffrey M Burns, The study was lead by T Jared Bunch, MD, University of Kansas School of Medicine, USA and Intermountain Heart Rhythm Specialist, colleagues and published in the Archives of Intermountain Medical Center, Murray, UT and Neurology. published in the HeartRhytm Journal. 4 April 2010: Assessment tool developed 1 April 2010: Study investigates the for diagnosis of early dementia in effect that some Alzheimer drug candidates have on neural degeneration A memory assessment tool especially for the Chinese population has been developed by the Researchers have found that nonamyloidgenic researcher Professor Agnes Chan, Department of peptides (formed by some Alzheimer’s drug Psychology, Chinese University of Hong Kong. The candidates) cause active ion channels to be formed, tool, known as the ‘Hong Kong List Learning Test’ which in turn cause cells to take in very high levels of (HKLLLT), has an accuracy rate in differentiating calcium ions, damaging synaptic efficiency and early stage dementia with Alzheimer’s type from eventually kill neurons linked to memory loss. normal elderly of above 80%. The research was carried out by Ratnesh Lal, nano- 7 April 2010: USD 1,200,000 provided for biophysicist, University of California San Diego research into fronto-temporal dementia (UCSD) and colleagues and published in the journal the Proceedings of the National Academy of After considering 16 applications from around the Sciences. world, the Alzheimer’s Drug Discovery Foundation (ADDF) (a public charity), together with The Association for fronto-temporal Dementia (a non- profit organisation), announced the recipients of their third annual research award, ‘fronto-temporal Dementia Drug Discovery Programme’ for which a total of USD 1,200,000 has been allocated. USD www.alzheimer-europe.org/Donation 300,000 was awarded to three scientists: Philip Van 1 April 2010: USD 270,000 awarded to Damme (Leuven University, Belgium), Einar M Sigurdsson (New York University School of Medicine) investigate potential therapy for and W Haung Yu (The Taub Institute of Columbia Alzheimer’s disease University Medial Center). A grant of USD 270,000 has been given to the company Signum Biosciences Inc. (USA) so that it 12 April 2010: Study suggests diet has can evaluate the role a modulatory compound, beneficial effect on the risk of known as protein phosphatase 2a (PP2A), can play Alzheimer’s disease in disease-modifying therapy for Alzheimer’s disease. A study which monitored over 2000 healthy people The grant has been provided by the Alzheimer’s Drug over 65 for 4 years has found that Discovery Foundation (ADDF). the risk of Alzheimer’s disease was 1 April 2010: Study on mice examines the lower in those people who adhered to a dietary pattern of olive oil, nuts, effect of transplant drug in the treatment fish, tomatoes, poultry and cruciferous vegetables of Alzheimer’s disease and who ate less red meat, organ meat or high fat A study on mice found that Alzheimer disease dairy products. progression may be slowed-down or blocked by The study was conducted by Yian Gu, Columbia using rapamycin (a drug that has extended lifespan Unviersity, New York, USA and colleagues. in mice and can be used in transplants). Levels of amyloid-beta-42, associated with Alzheimer’s 12 April 2010: Animal study suggests that disease, were lowered after treatment with the drug targeting blood-brain barrier may delay rapamycin. the progression of Alzheimer’s disease The study was conducted by Veronica Galvan, A study in which 12 week-old genetically modified assistant professor, Barshop Institute and mice which expressed the human beta-amyloid Department of Physiology, University of Texas Health protein (associated with Alzheimer’s disease) were Science Center, San Antonio and reported in the treated with a steroid-like chemical that activates a PloS ONE journal. receptor (pregnane X receptor or PXR), found that this in turn increased the expression of a blood-brain barrier protein (P-glycoprotein) which transports beta- amyloid out of the brain.

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The study was led by Anika Hartz and supported by associated with a reduced risk of mild cognitive the National Institute of Environmental Health impairment and that when both activities were carried Sciences (NIEHS), USA and is due to be published in out that their beneficial join effect was greater than the May issue of Molecular Pharmacology. what would have been predicted from their separate effects. 12 April 2010: Study examines the longevity of emotions The study was conducted by researchers from the Mayo Clinic, USA and led by Yonas Endale Geda. It A study in which a group of people with amnesia will be presented at the American Academy of were shown film clips to ascertain whether their Neurology Annual Meeting on April 15. experience of firstly sadness and then happiness would persist beyond their memory for the inducing 16 April 2010: Study examines the effect clips suggests that the people had elevated levels of brain training has on memory emotion even after their factual memory of the clips had gone. The researchers believe that this could A study on 64 people who had problems including have direct implications for people with Alzheimer’s brain damage, stroke and dementia, found that brain disease as it shows that a person’s happiness can be training games on electronic devices proved to be influenced even though an actual event may be more effective at improving memory than carrying out forgotten. similar exercises with a pen and paper. The research was led by Justin Feinstein, University The research was led by Linton Kohr and Dr Simon of Iowa, USA and published in the Proceedings of the Moore from London Metropolitan University and National Academy of Science. presented at the British Psychological Society’s annual conference. 12 April 2010: Guidelines issued to help evaluate driving risk in 19 April 2010: Study examines link dementia between brain volume and obesity A guideline has been published Researchers from the University of which is aimed to help determine California, Los Angeles, have found a when people with dementia should stop driving. pattern of “diminished brain volume” Issued by the American Academy of Neurology the in people with specific DNA paper recommends certain characteristics should be sequence within the fat mass and considered including: obesity-associated (FTO) and this finding suggests that these people could be a greater risk of • The Clinical Dementia rating scale developing dementia. • A caregiver’s rating of a person with The research was carried out by April Ho et al, on dementia’s driving ability 206 people and published in the April edition of the • A history of crashes or traffic citations Proceedings of the National Academy of Sciences. • Reduced driving mileage or self-reported situational avoidance We provide full references to • Mini-mental state examination scores articles on our website. Please visit • Personality characteristics. the completely revised Alzheimer Europe website on: 13 April 2010: Phase II study examines effect of antibodies on Alzheimer’s www.alzheimer-europe.org disease Findings from the Phase II clinical trial (involving 24 19 April 2010: Additional analysis of people) of Gammagard Liquid and Gammagard S/D potential Alzheimer’s drug published Immune Globulin Intravenous (Human) (IGIV) for The results of the Phase IIa clinical trial of the Alzheimer’s disease suggest that people with potential Alzheimer drug PBT2 (developed by Prana Alzheimer’s disease, who received IGIV for an 18 Biotechnology) were published in the journal, Lancet month period had “significantly lower rates of Neurology (June 2008 and July 2009). New analysis ventricular enlargement and less whole-brain atrophy of the results has been published in the Journal of than control subjects.” Phase III trials are ongoing. Alzheimer’s disease which suggests that the drug is The study was conducted by researchers at the effective in reversing dementia symptoms. The NewYork Presbyterian Hospital/Weill Cornell Medical analysis was conducted by Professor Ashley Bush of Center, USA and reported on at the American the Mental Health Research Institute and the Academy of Neurology (AAN) meeting in Toronto, University of Melbourne, . . 23 April 2010: Phase II trials of potential 15 April 2010: Study evaluates the joint Alzheimer drug to commence in Europe effects of physical exercise and computer The potential vaccine against Alzheimer’s disease, use on mild cognitive AD02, developed by the Austrian biotechnology firm impairment Affiris and British company GlaxoSmithKline, is to be tested in six European countries. 420 people will be A study on over 900 people aged 70-90 years old, found that recruited to take part in clinical trials in Austria, moderate physical exercise and Croatia, Czech Republic, France, Germany and Slovakia. The drug has been tested for safety and computer use were separately

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tolerability and the new Phase II tests will monitor advocate for increased investment in Alzheimer’s efficacy, with results being expected in 2012. research. 28 April 2010: US Independent panel The actor won a Tony Award for his performance in determines that there is insufficient Curtains, has been on Broadway (Accent on Youth, evidence that preventive measures Spamalot, The Heidi Chronicles and Beyond reduce the risk of Alzheimer’s disease Therapy) and won an Emmy for his work on the sitcom Frasier. An independent panel convened by the US National Institutes of Health has determined that “there is currently no evidence of even moderate scientific New resources and quality supporting the association of any modifiable factor—dietary supplement intake, use of prescription publications or non-prescription drugs, diet, exercise, and social engagement—with reduced risk of Alzheimer's By reporting on recently published books, reports and disease. The evidence surrounding risk reduction for information videos on dementia we hope to offer cognitive decline is similarly limited. Low-grade updates on the current resources available to anyone evidence shows weak associations between many who is affected by dementia. lifestyle choices and reduced risk of Alzheimer's 29 March 2010: Report highlights that disease and cognitive decline.” Therefore, the panel people with newly-diagnosed Alzheimer’s has called for more public understanding that such disease do not receive Alzheimer’s drugs “proposed prevention strategies are currently, at as first line-therapy best, only loosely associated with improved outcomes.” The panel found that the two non- The report entitled “Treatment Algorithms in modifiable risk factors for Alzheimer’s disease are Alzheimer’s Disease” by the research firm, Decision age and a genetic variant of a protein( apolipoprotein Resources, states that of those people who are E). diagnosed with mild-to-moderate Alzheimer’s disease over a quarter are prescribed an antidepressant and The panel acknowledged that whilst there is little only just over half are prescribed evidence that modifiable risk factors may prevent acetylcholinesterase inhibitor (AChEI) (an Alzheimer’s disease, they can nevertheless be Alzheimer’s drug). associated with other benefits. Long delays between a person’s diagnosis of The panel recommended that the research Alzheimer’s disease to the start of treatment were community and clinicians collaborate to develop, test, also highlighted in the report. and uniformly adopt objective measures of baseline cognitive function and changes over time and they made a number of recommendations regarding the future research agenda.

The conference panel chair, Dr Martha L Daviglus said “"Alzheimer's disease is a feared and heart- www.alzheimer-europe.org/Donation breaking disease. We wish we could tell people that taking a pill or doing a puzzle every day would 26 April 2010: Publication released about prevent this terrible disease, but current evidence Telecare and dementia doesn't support this." “Telecare and dementia” by the University of Stirling The 15-member panel included experts in the fields and the Dementia Services Development Centre of preventive medicine, geriatrics, internal medicine, considers how telecare can contribute to the support, neurology, neurological surgery, psychiatry, mental protection and quality of life of people with dementia health, human nutrition, pharmacology, genetic and also the importance of telecare in providing medicine, nursing, health economics, health services support and reassurance to carers. research, and family caregiving. Telecare and dementia costs GBP 15.00 (or may be downloaded in Scotland) and received funding from Dementia in Society the Scottish Government’s Telecare Development Programme. 23 April 2010: Actor David Hyde Pierce receives recognition for his work on 27 April 2010: New publication released Alzheimer’s disease on methods for managing behaviour It has been announced that Actor David changes in people with dementia Hyde Pierce will receive a Tony The Lewy Body Dementia association has published Awards® Isabelle Stevenson Award in “Understanding Behavioural Changes in Dementia”, recognition of his “substantial which contains suggestions for effective methods to contribution of volunteered time and manage difficult behaviour in people with dementia effort on behalf of one or more (such as wandering, aggression, sleep problems). humanitarian, social service or charitable organisation, regardless of whether such The book considers issues such as: organisations relate to the theatre.” Mr Pierce is an honorary member of the Alzheimer’s Association’s • Using routines national board and he has regularly participated in • Communicating effectively the Alzheimer’s Action Summit in Washington, DC to • Wandering

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• Preventing or diffusing aggression Call for abstracts for 20th AE • Benefits of exercise • Managing sleep problems Conference in Luxembourg • Smoothing the transition on moving day is now open • Finding in-home caregivers There is the possibility of submitting your abstract via • Care for the caregiver the Alzheimer Europe website on: www.alzheimer- • Support groups. europe.org/conferences The literature was written by Tanis J. Ferman, PhD, Mayo Clinic, Glenn E. Smith, PhD, Mayo Clinic, and Briana Melom, MA, LSW and can be downloaded from the Lewy Body Dementia association website.

Contact Alzheimer Europe at:

Alzheimer Europe, 145 route de Thionville, L-2611, Luxembourg (www.alzheimer-europe.org)

Jean Georges, Executive Director ([email protected]) We welcome abstracts for the following subjects: Dianne Gove, Information Officer ([email protected]) People with dementia and their carers Annette Dumas, EU Public Affairs Officer • Education and training of people with ([email protected]) dementia and their carers Julie Fraser, Communication Officer • Relationships and sexuality ([email protected]) • New technologies in the home Gwladys Guillory-Hickey, Administrative Assistant • Proxy decision making – Giving a voice to ([email protected]) people with dementia Grazia Tomasini, Administrative Assistant Professional carers ([email protected]) • Innovative care services • Avoiding neglect, coercive measures and Alzheimer Europe Board abuse • Caring professions and their training Chairperson: Maurice O’Connell (Ireland) • New technologies for the caring Vice-Chairperson: Sabine Henry (Belgium) professions Honorary Secretary: Sigurd Sparr (Norway) Medical professionals and researchers Honorary Treasurer: Heike von Lützau-Hohlbein • Involving people with dementia and their (Germany) carers in research Members: • Communicating research results and Iva Holmerová (Czech Republic) managing expectations • Disclosing a diagnosis to people with Neil Hunt (United Kingdom) dementia and their carers Pekka Laine (Finland) • Dementia research made easy Patrick Maugard (France) Policy makers Alicja Sadowska (Poland) • Successful campaigning Charles Scerri (Malta) • National dementia strategies Marc Schaefer (Luxembourg) • Financing care and dementia research Maria do Rósario Zincke dos Reis (Portugal) • Policies supporting people with dementia and their carers.

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AE Calendar The following meetings will be attended by representatives of Alzheimer Europe:

Date Meeting AE Representative 4 May 2010 Expert meeting (Belgian Presidency conference) (Brussels, Belgium) Jean, Annette Commissioner Dalli presents its 2010 Health Work Programme (Brussels, 4 May 2010 Annette Belgium) 5 May 2010 Recognition Programme (Berlin, Germany) Jean 6 May 2010 PharmaCog meeting (Paris, France) Jean 6 May 2010 Patients Rights Day (EP) (Brussels, Belgium) Annette 13 May 2010 Meeting with Pfeizer (Luxembourg, Luxembourg) Jean 18 May 2010 European’s Patients’ Forum HTA seminar (Brussels, Belgium) Annette 19 May 2010 European Patient’s Forum General Assembly meeting Annette Future Conferences

Date Meeting Place 6-8 May 2010 People Policy Partnerships, www.alzheimers.org.nz Wellington, 12-14 May 2010 7th Biennial Conference Barcelona/Pittsburgh, www.fundacioace.com Barcelona, Spain 9-11 June 2010 7th International Short Break Conference, www.isba2010.com Galway, Ireland International elder care conference, Transforming care 2010, 21-23 June 2010 Copenhagen, Denmark www.sfi.dk/transformingcare2010 1st International Congress on controversies in longevity, health and aging 24-27 June 2010 Barcelona, Spain (CoLONGY), www.comtecmed.com Mental Health and Well being in Older People- Making it Happen, 28-29 June 2010 Madrid, Spain http://ec.europa.eu/health/mental_health/events/ev_20100419_en.htm 2010 IANA (International Academy on Nutrition and Aging), 26-27 July 2010 Albuquerque, New Mexico www.healthandage.com/html/min/iananda 2-5 September 2010 Dignity for the Frail Old: From dilemmas to solutions, www.dignity.no Bergen, Norway International Conference on evidence-based policy in long-term care, 8-11 September 2010 London, UK [email protected] 26e Congrès de la Société de Psychogériatrie de Langue Française 15-17 September 2010 Limoges, France (SPLF), www.nexcom-events.com 5th Croatian Congress on Alzheimer's Disease with international 22-25 September 2010 Zadar, Croatia participation, www.alzheimer2010.com 30 September – 2 20th Alzheimer Europe Conference “Facing Dementia Together”, Luxembourg, Luxembourg October 2010 www.alzheimer-europe.org/conferences 7-9 October 2010 Gemeinschaft leben, www.deutsche-alzheimer.de Braunschweig, Germany 19-21 October 2010 Coming of Age: Dementia in the 21st Century, www.dementia.stir.ac.uk London, UK 9ème Congrès International Francophone de Gériatrie et Gérontologie 19-21 October 2010 30èmes Journées Annuelles de la Société Française de Gériatrie et Nice, France Gérontologie, www.cifgg2010.com 10th Congress of European society for clinical neuro-pharmacology, 21-23 October 2010 Zagreb, Croatia [email protected] Third Conference: Clinical Trials on Alzheimer’s Disease (CTAD), 3-5 November 2010 Toulouse, France http://www.ctad.fr The 10th International Conference on Alzheimer’s & Parkinson’s Diseases 9-13 March 2011 Barcelona, Spain (AD/PD 2011), www2.kenes.com/adpd/Pages/Home.aspx The VII International Association of Gerontology and Geriatrics (IAGG) – 14-17 April 2011 European Region Congress “ Healthy and Active Ageing for all Europeans Bologna, Italy II”, www.iaggbologna2011.com

The Alzheimer Europe newsletter arises from the 2010 Work Plan of Alzheimer Europe, which has received funding from the European Union, in the framework of the Health Programme.

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