NEWSLETTER January 2010

Cyprus, Ireland, Italy, Highlights in this Editorial Portugal, Scotland and issue . January 1 January 2010: Spanish marked the At Alzheimer Europe we Presidency of EU 4 start of the have been busy continuing commences Spanish EU to develop our website and 1 January 2010: Europe Presidency, the e-shop has been launches €20 million which has launched, making it possible academic-industry 3 declared one of its aims as to purchase Alzheimer collaboration on being to “foster a Europe of Europe publications online. Alzheimer’s disease rights and freedoms, a In addition, we have Europe for all citizens”. To 11 January 2010: updated the national Discussions commence realise this aim, the Spanish dementia plans section and on a Cyprus Strategic 9 Presidency has outlined the ethics section of our Plan for Alzheimer’s various initiatives which we website. disease report on in this newsletter. January also saw the launch 14 January 2010: It is greatly encouraging to of two Commission financed Implementation of the 6 hear this month that Cyprus projects, the PharmaCog English Dementia strategy has started discussions on and RightTimePlaceCare assessed the development of a projects in which Alzheimer Strategic Plan for Europe has been asked to Alzheimer’s disease. collaborate. We report in more detail on both in this At the same time, the newsletter. necessity for a strong implementation programme We are of course also of any such plan is delighted that this newsletter highlighted by the findings is the first of 2010 which we from the National Audit are able to produce thanks Office in the UK which has to the operational grant called for urgent action to provided by the European ensure that the English Commission through the Strategy is implemented public health programme of Table of contents effectively. The appointment the European Union. Editorial...... 1 of Professor Alistair Burns Finally, I would like to take Alzheimer Europe ...... 2 as the Director for the English Dementia Strategy this opportunity to wish Neil Alzheimer Europe Networking ...... 3 could not be more timely Hunt, who has left his Pharmacog...... 3 and we wish him well in his position of Chief Executive European developments...... 4 task. of the Alzheimer’s Society, every success in the future. Policy Watch...... 6 Alzheimer Europe’s member Neil, a Board member of Members’ News...... 8 organisations have been Alzheimer Europe, has been Members’ forthcoming events ...... 11 busy during January. highly supportive of Following a comprehensive Alzheimer Europe’s work. Science Watch ...... 11 survey, the Alzheimer’s Dementia in Society ...... 16 Society (UK) has been New resources and publications ..... 16 raising awareness of the Jean Georges concerns people have for AE Calendar ...... 18 Executive Director standards of care. We also Future Conferences...... 18 bring news from our members in Belgium,

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systems, advocacy and informal caregiver Alzheimer Europe support systems for patients/consumers with dementia and intersectorial communication. 1 January 2010: Alzheimer Europe starts year with operating grant from A European survey will assess the factors the European Commission influencing the time of admission to long-term institutional nursing care facilities, investigate The 2010 Work Plan of Alzheimer living conditions and gather clinical data of Europe has received significant patients/consumers with dementia and their financial support (EUR 250,000) informal caregivers in long-term formal from the public health programme professional home care and institutional of the European Union and the organisation will nursing care facilities, and the related be able to carry out the following activities in economic impact. 2010 thanks to this support: Consecutively best practice strategies will be • the development of a European developed for intersectorial arrangements Dementia Ethics Network with a focus needed to improve the effectiveness and on the ethics of dementia research efficiency of integrated health care in European and assistive technologies, dementia care systems, and recommendations • the continuation of its legal rights for best practice models or interventions in project which will result in national long-term care reports on the guardianship systems facilities. in the Member States of the European Apart from the Union, University of • a survey on the involvement of people Witten/Herdecke with dementia in the activities, (), the campaigning and decision making following centres will bodies of its member organisations, be involved in the three year project: • the further development of a • Maastricht University (Netherlands), European Dementia Observatory and • Lund University (Sweden), the communication on relevant policy and scientific developments in the • University of Manchester (United field of dementia, Kingdom), • the organisation of the 20th Alzheimer • University of Turku (Finland), Europe Conference in Luxembourg • University of Tartu (Estonia), from 30 September to 2 October 2010. • Gerontôpole of the University of Finally, the association will also be able to deal Toulouse (France) and with a number of organisational issues such as • Fundació Privada Clinic per la the development of a new strategic plan and a Recerca Biomedica (). financial diversification strategy, an outreach programme towards Alzheimer associations not Jean Georges attended the launch meeting of currently members of the organisation and the the project on 19 January 2010 in Brussels. development of strategic partnerships with 29 January 2010: Alzheimer Europe other associations active in the field. launches e-shop facility on website 19 January 2010: Alzheimer Europe Since the launch of the completely revised starts involvement on website in October 2009, Alzheimer Europe RightTimePlaceCare project has continued its development. Alzheimer Europe was asked to In January an e-shop facility was launched, participate in an advisory enabling visitors to purchase Alzheimer Europe capacity in a European project publications online, the policy in practice entitled RightTimePlaceCare section was updated to include new information coordinated by the University of th on the status of national dementia plans in Witten/Herdecke and financed under the 7 Cyprus as well as and members of Framework Programme of the European Union. the Steering Committee of the European The project will describe and analyse the Dementia Ethics Network were identified and European health, social care and welfare included on the website.

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Alzheimer Europe Networking On 7 January (, UK) Jean participated in the launch of the PharmaCog project. On 7 January (London, UK) Jean met for an exchange with AE Chair Maurice O’Connell. On 11 January (London, UK) Jean attended the EMEA workshop on “New developments in dementia of Alzheimer’s type”. On 12 January (Brussels, Belgium) Annette attended the Health Consumer Powerhouse meeting in the European Parliament: "How to Cure the EU Patient Information Gap". On 12 January (Brussels, Belgium) Annette followed Commissioner-designate Viviane Reding’s hearing in the European Parliament. On 18 January (Luxembourg, Luxembourg) Jean met with Alain Tapp from the Luxembourg Alzheimer’s association to discuss the preparations of the 2010 Conference in Luxembourg. On 19 January (Brussels, Belgium) Jean attended the launch meeting of the RightTimePlaceCare project. On 20 January (Brussels, Belgium) Annette and Jean met Brendan Barnes, EFPIA Director for Multilateral Issues and Health Policy to discuss EU developments in AD.

Pharmacog Visit the newly launched e-shop PharmaCog is a European project funded by on the publications section of the Innovative Medicines Initiative, a new and the Alzheimer Europe website unique partnership between the European on: www.alzheimer-europe.org Commission and the European Federation of Pharmaceutical Industries and Associations. Due to the importance of this project, we will dedicate a special section of our newsletter to developments in this project. 1 January 2010: Europe launches EUR 20 million academic-industry collaboration to tackle drug discovery in Alzheimer’s disease PharmaCog short for “Prediction of cognitive properties of new drug candidates for neurodegenerative diseases in early clinical development” a cross party project, co- coordinated by GlaxoSmithKline R&D and the Université de la Méditerranée, Marseille, France, started its activities on 1 January 2010 thanks to significant funding (EUR 20.2 million) from the Innovative Medicines Initiative. Its launch marks the start of the most ambitious European project for tackling bottlenecks in Alzheimer's disease research and drug discovery, This hugely ambitious project brings together top scientists from 12 academic institutions, 11 global pharmaceutical companies , 5 small and medium size enterprises (SMEs) with patient representation from Alzeimer Europe. It is hoped that by the end of this 5-year project, PharmaCog will have

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a) validated the tools necessary to streamline 29. Université de Lille 2 (France). AD drug discovery and accelerate effective medicine to patients, Alzheimer Europe will represent the interests of people with dementia and their carers in this b) set the standard for European drug consortium and ensure the dissemination of discovery providing optimised and research results to a lay audience. PharmaCog validated protocols will also work closely with the European Medicines Agency, as an associated partner of c) provided the infrastructure to sustain world this project, to share project progress and class drug discovery in Europe and discuss the implications for drug development d) disseminated the obtained results from in Europe. health professionals to patients. Ultimately PharmaCog should provide the European tools needed to define more precisely the potential of a drug candidate, reduce the developments development time of new medicines and thus Here we report on developments from the accelerate the approvals of promising new European institutions which may impact people medicines. with dementia and/or their carers. The PharmaCog consortium consists of the 1 January 2010: Spanish Presidency following partners coming from 10 different EU of the EU presents its priorities Members States: On 1 January, Spain took over the Presidency 1. Alzheimer Europe (Luxembourg), of the EU from Sweden. 2. AstraZeneca (), This Presidency set out the following 4 3. Boehringer Ingelheim (Germany), priorities: 4. Centre National de la Recherche Scientifique (France), • the full implementation of the Treaty of 5. Eli Lilly and Company (United Kingdom), Lisbon, 6. Exonhit Therapeutics (France), • the coordination of economic policies to promote recovery and sustainable 7. F. Hoffman-La Roche (Switzerland) growth throughout Europe,, 8. GlaxoSmithKline (United Kingdom), • strengthening of the European Union’s 9. H. Lundbeck (Denmark), foreign policy to turn it into a real 10. Innovatice Concepts in Drug Development global player, (France), • fostering a Europe of rights and 11. Innovative Health Diagnostics (France), freedoms at the service of citizens. 12. Institut d’Investigacions Miomèdiques Of interest to Alzheimer Europe and its August Pi i Sunyer (Spain), members, under the heading ‘A Europe of 13. Institut de Recherche Servier (France), rights and freedoms, a Europe for all citizens’, 14. Institut National de la Santé et de la various initiatives will be implemented: Recherche Médicale (France), • A more democratic Europe with the 15. Istituto di Ricerche Farmacologiche “Mario participation of its citizens – the Negri” (Italy), legislative initiative: Member State 16. Janssen Pharmaceutica (Belgium), citizens may urge the Commission to 17. Merck (Germany), formulate legislative proposals on 18. Novartis Pharma (Switzerland), matters they consider should be regulated at European level. The 19. Ordine Ospedaliero di San Giovanni di Dio Spanish Presidency will promote the Fatebenefratelli (Italy), approval by the European Parliament 20. Qualissima (France), and the Council of a regulation 21. SAS Alzprotect (France), establishing the conditions and 22. UCB Pharma (Belgium), procedures required to channel this 23. Universidad de Murcia (Spain), initiative. • The Charter of Fundamental Rights: 24. Università degli Studi di Foggia (Italy), The Treaty of Lisbon incorporates the 25. Università degli studi di Verona (Italy), Charter of Fundamental Rights, 26. Universität Leipzig (Germany), establishing its legally binding nature. 27. Universitätsklinikum Essen (Germany), • Accession to the European 28. Université de la Méditerranée, Aix- Convention for the Protection of Marseille II (France), Human Rights and Fundamental

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Freedoms: to put Europe at the governance and follow-up. Progress forefront in the defence and promotion will also be made on aspects related of human rights, the Presidency will to research centres excellence and begin the EU accession process to the universities modernisation. Council of Europe’s European Convention for the Protection of 11 January 2010: European Human Rights and Fundamental Medicines Agency organises Freedoms. stakeholder meeting on new • Reinforcing Europe’s social dementia developments dimension: within a context of At a meeting organised by the European economic crisis that tests the social Medicines Agency in cohesion and the welfare achieved by London, experts European societies, the Union should discussed the latest be a guarantee of protection for its developments as to citizens. The Communication the potential biomarkers for Commission will submit on the new the diagnosis of Alzheimer’s disease and for 2011-2015 European Social Agenda the use of such biomarkers for the assessment will complement the content of the EU of disease progression. 2020 Strategy, incorporating social protection, inclusion and integration. Experts provided overviews on CSF, blood based and neuroimaging biomarkers and their These priorities are framed within the Trio of potential use in clinical trials. Presidency consisting of Spain, Belgium and and will continue the work developed Jean Georges represented Alzheimer Europe by Sweden. at this meeting. Other initiatives will include: We provide full references to • Social and demographic changes articles on our website. Please visit have major implications for social the completely revised Alzheimer protection systems. Joint work to set Europe website on: forth common objectives, established within the framework of the open www.alzheimer-europe.org coordination method, will be promoted. A White Paper on Ageing in 20 January 2010: European Europe and a European Active Ageing Ombudsman re-elected by the Programme should be published. European Parliament • European Year for Active Ageing and Intergenerational Solidarity: the The European Presidency will submit to the Parliament has re- Commission and the Member States elected Nikiforos the conclusions drawn at the Diamandouros European Forum of Social Tourism (Greece) as European held in Spain, gathering the support to Ombudsman. Mr the Commission’s decision of Diamandouros, who has occupied this function declaring 2012 as the European Year since 1 April 2003, will remain in the post. for Active Ageing and The European Ombudsman is nominated by Intergenerational Solidarity. the European Parliament after each election • Public health innovation: the and for the duration of its mandate (5 years). Presidency will promote e-health, will The mandate ends at the end of the legislature foster patients’ quality and security but can be renewed. improvement initiatives and the work conducted by the High Level Public The Ombudsman’s task is to guarantee that the Health Group. principles of transparency and good • Research: the Presidency will move administration are adhered to. He protects ahead in the development of the European citizens in cases of injustice, European Research Area (ERA), discrimination, abuse of power, failure to proposing short and medium-term respond, and delay of information. This is an policies to further coordination important role as it protects citizens in cases of amongst the various bodies involved. bad administration from the European The initiative will address partnership, institutions and bodies.. European research infrastructures, joint programming in research areas of special interest and improved ERA

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21 January 2010: Hearings for the • Greater integration of care and European Commissioner-designates increased use of chronic disease take place prevention and management Throughout January the Commissioner- • A strengthening of ’s dementia designates hearings before the relevant workforce. European Parliament Committees took place. The report was produced by risk Analytica (a At its meeting of 21 January, the Conference of risk management firm) in collaboration with the Presidents discussed the hearings and Jerzy network of researchers and clinicians of the Buzek, European Parliament President, Canadian Alzheimer’s Society and can be announced the 25 assessment letters he had viewed on the Society’s website. received from the EP committees were positive. 14 January 2010: Implementation of A final vote on the Commission is to be held on dementia strategy assessed by Tuesday 9 February, during the plenary national audit office session in Strasbourg. A year since the English Dementia Strategy, “Living Well with Dementia” was launched, the Policy Watch National Audit Office has published a report on its implementation. The Audit Office has In this section you can find articles on various identified key risk areas and made national policies and initiatives which can have recommendations where it considers action is an impact on issues surrounding dementia. urgently needed. The report lists the following: 5 January 2010: Report highlights Risk A: On the Strategy the need to address “looming dementia crisis” in Canada Although the Strategy focuses on outcomes and was developed with strong consultation The Canadian Alzheimer’s Society published and consensus, the information on current and “Rising Tide: The Impact of Dementia on future costs and benefits, and sources of Canadian Society”, a comprehensive report savings, remains inadequate and there is a risk which covers the anticipated challenges such that decisions made locally on prioritisation and as: service design will not be sufficiently well- evidenced or informed. • The health burden of dementia for Canada 2008-2038 (including a rise The Department of Health should improve the from 480,600 people with dementia in completeness and robustness of its impact 2008 to1,125,200 people with assessment, building in more evidence on dementia in 2038 and also an expected efficiency savings. It should publish increase of informal care provided the results, including results from modelling the annually for people with dementia impact of different scenarios for demand and from 231 million hours in 2008 to 756 eligibility criteria in 2010. million hours in 2038). The Department of Health should evaluate and • The economic consequences of promulgate examples of good practice in dementia for Canada 2008-2038 achieving cost-effective improvements in (rising from CAD 15 billion in 2008 to delivery of dementia services. CAD 153 in 2038). Risk B: On Leadership • The cumulative consequences of National and regional leadership is strong and dementia over a 30-year period (being should be strengthened further with the CAD 872 billion). appointment of a national clinical lead, but at The report contains recommendations that the local commissioning and provider level would make up the components of a much more needs to be done to identify and comprehensive National Dementia Strategy support leaders who have the skills to ignite including: passion, pace and drive. Workforce capacity and capability was a serious concern in 2007 • An accelerated investment in all areas and continues to be a weakness in the of dementia research implementation planning. Unless significant • A clear recognition of the important progress is made on leading this at the national role played by informal caregivers level, the implementation of the Strategy is likely to be compromised. • An increased recognition of the Every acute hospital should identify a clinical importance of prevention and early leader for dementia by 31 March 2010. Primary intervention

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Care Trusts should likewise appoint a lead agreed dementia metrics on the Dementia commissioner for dementia care and, through Portal, and allowing localities to upload their contracts, should require evidence that acute data, benchmark their performance and provide hospitals and other providers of care have a accountability to the public and partners.” lead person with responsibility for improving dementia care. Mr Amyas Morse, head of the National Audit Office said “The Department of Health stated in The Department of Health should include in the October 2007 that dementia was a national Workforce Development Action Plan a priority and brought forward a widely supported timetable for incorporating dementia awareness strategy in February 2009 to transform the lives and care into pre-registration medical and of people with dementia. The action however, nursing training. has not so far matched the rhetoric in terms of urgency. At the moment this strategy lacks the The Department of Health should put in place mechanisms needed to bring about large scale by the end of 2010 an accreditation scheme for improvements and without these mechanisms it dementia training for healthcare professionals, is unlikely that the intended and much needed which will allow accredited training to count transformation of services will be delivered towards their professional development. within the strategy’s five year timeframe.” Risk C: On Delivery 19 January 2010: UK Health Minister The lack of strong levers for improving announces plan of action to protect dementia care means there is a risk that NHS vulnerable adults and social care delivery organisations will not give it the priority status expected by the Following the 2009 national consultation period Committee and the general public, and service on the Government guidance on safeguarding improvements will lag well behind the desired published in 2000, in which 12,000 people took pace. part, the UK Minister of State for Health, Phil Hope, announced a plan of action to protect The Department of Health should identify ways vulnerable adults. Three initiatives will be to provide greater leverage for improvement in developed: dementia services between now and the next Spending Review. As a minimum, they should a) The establishment of an Inter- find a way of ensuring that Primary Care Trusts Department Ministerial Group on commission sufficient memory services, which safeguarding vulnerable adults whose are based on best practice and accredited by role is to: (i) determine policy and the Memory Service National Accreditation work priorities, (ii) provide a strategic Programme. and co-ordination role and (iii) provide public and parliamentary advocacy for Following completion of the baseline review this policy area. exercise in March 2010, 7 the Department of Health should ensure that the next key b) The introduction of new legislation to performance indicator for Deputy Regional strengthen the local governance of Directors of Social Care focuses on outcomes. safeguarding by giving safeguarding adults boards statutory status. The Department’s Dementia Strategy Implementation Team should assess the c) The launch of a programme of work potential of new quality levers such as Patient with representative agencies and Reported Outcome Measures to apply to NHS stakeholders to support effective dementia care. It should also work with the policy and practice in safeguarding Care Quality Commission to ensure that the vulnerable adults. system for assessing care homes includes In the Autumn of 2010, a comprehensive, multi- evidence about user experience such as direct agency guidance is to be delivered which measures of the quality of life of people with should clearly set out the roles and dementia. responsibilities for all those involved in Primary Care Trusts should use their safeguarding vulnerable adults. commissioning framework and contracts with 23 January 2010: UK Health Minister Acute and Foundation Trusts to ensure full announces Director for the English participation in the National Clinical Audit of Dementia Strategy Dementia Services from 2010. UK Care Services Minister, Phil Hope, The Department of Health should, by 30 April announced that Professor Alistair Burns is to 2010, provide an open online database of local be the newly-appointed Director of the English performance information by publishing the Dementia Strategy.

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Professor Burns, currently The aim of the research, which will be professor of old age supported by the Alzheimer Society of Ireland, psychiatry at the will be to identify ideas for improvements in University of Manchester order to inform future research in the area while and Manchester developing suitable interventions which can be Academic Health Science used in caring for people with early on-set Centre, UK, said: “In the dementia. past few years, there has been a great deal of The student will incorporate a number of public interest in dementia qualitative research tools into her study and several influential including face to face surveys with people living initiatives, in particular the national dementia with EOD and their carers; group activity strategy. The challenge now is to build on this sessions incorporating a control group; and a to make a real positive difference to people home based study that will access those with dementia, their families and carers. I very unable to attend day care or group sessions. much look forward to working with colleagues The ‘Movement to music’ group activity to realise this ambition.” sessions in particular will take place over six weeks and will comprise a mixture of music, Members’ News gentle exercise and social games. These group sessions will aim to improve the quality of life In this section we report on our members’ latest for younger people with dementia who can initiatives and work. benefit from the physical exercise and movement to music as well as the added January 2010: Federazione benefit of time spent in a social situation with Alzheimer Italia launches database others in a similar situation. on services in Lombardy The eventual aim of the qualitative research will be to develop and pilot new cost effective care In March 2006 Federazione interventions that can be used with the client Alzheimer Italia, in cooperation with the Istituto alone or in conjunction with a family member di Ricerche Farmacologiche “Mario Negri” and will be feasible for use in mainstream (Milan), launched a project called: "Censimento service provision. e valutazione dei Servizi e delle Strutture per la cura e l’assistenza ai malati con demenza in 5 January 2010: Alzheimer’s Society Lombardia” (Census and evaluation of the calls on politicians to address services and the structures for the cure and the dementia in their election manifestos care of people with Alzheimer's disease in Lombardy). The Alzheimer’s Society has called on political parties to The project aimed to address the lack of address the following in their information about the disease and to provide election manifestos: precise and detailed information regarding the support and services available to people with • Details of how they will develop a the disease and their families in Lombardy quality care service. This must (North of Italy). include guarantees that every person with dementia: can expect trained The database of available services has been professionals who understand how to launched in January 2010 and 338 structures deliver quality care and support to have been included, in particular 80 Alzheimer people with dementia; can expect the Evaluation Units (UVA), 81 Care Homes (RSA), NHS and social care service to work 12 Alzheimer Day Centres (CDA) and others. closely to support people to live their lives as independently as possible; January 2010: The Alzheimer Society and, with their carers, can receive the of Ireland supports research into care and support they need to live well care interventions for people living at any stage of their journey. with early onset dementia • A guarantee that the Attendance A PhD student, Caroline Kilty of Allowance will not be scrapped - Cork Institute Technology, Ireland, This is an invaluable benefit that gives has begun a qualitative research people with dementia and their carers project examining the topic of early the choice, flexibility and control to on-set dementia (EOD) and interventions that shape their own care. Alzheimer's may be of benefit. Society research found overwhelming opposition to the idea of abolishing the

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Attendance Allowance and moving the The developed model will be based on money into care services. international best practice examples and evidence based research and will prompt key • Dementia research made a higher learnings for policy and practice in this area. A priority. Dementia research is number of interventions will then be pilot tested drastically underfunded. The by ASI staff trained in palliative care, in specific government invests eight times less in service centres (Day care, home care, carer dementia research than cancer support). research. Developing new treatments has the potential to significantly 11 January 2010: Pancyprian reduce the number of people with Alzheimer Association to cooperate dementia. Existing research on the development of the Cyprus expenditure needs to be reallocated to Strategic Plan for Alzheimer’s ensure dementia research receives disease the same investment as other major conditions.” The Minister of Health of Cyprus, Dr. Christos Patsalides, pledged These calls follow the findings of the Society’s his support in the fight against surveys of (i) nearly 1,500 carers and people Alzheimer Disease at a meeting with dementia in which concerns regarding the requested by the President of the standards of care were highlighted (only 23% Pancyprian Alzheimer Association, Ms. Noni of respondents believed their care needs were Diakou, on 11 January 2010. During the met) and (ii) 150 members of Parliament which meeting, the Minister of Health asked found 81% of MPs recognising that social care colleagues from the Ministry, under the funding should be a high priority for their party. guidance of the director of the Mental Health Services, Dr. Yiannis Kalakoutas, to closely co- We provide full references to operate with the Pancyprian Alzheimer articles on our website. Please visit Association in order to prepare the Cyprus the completely revised Alzheimer Strategic Plan for Alzheimer. Europe website on: At the meeting, Professor Magda Tsolaki, President of the Greek Association of www.alzheimer-europe.org Alzheimer’s Disease and Related Disorders was present and the Minister of Health asked January 2010: The Alzheimer Society her to act as an advisor towards the successful of Ireland secures funding to preparation of the Cyprus Strategic Plan. The develop palliative care intervention Minister of Health suggested the creation of a model national committee to attend to this important The Alzheimer Society of Ireland is call. excited to announce it has been The Minister of Health reiterated his support successful in securing dedicated towards the preparation of the Cyprus Strategic palliative care research funding from the Irish Plan for Alzheimer at an official lunch hosted by Hospice Foundation’s Local Research Grant the Rotary Club in Nicosia, on 14 January fund. 2010. The proposed research project entitled, 13 January 2010: Alzheimer Scotland “Opening Conversations – Developing a model allocated a share in lottery funding for the Alzheimer Society of Ireland of best practice palliative care interventions for people In order to improve support for carers in with dementia and their carers” will be led by Scotland, over GBP 1 million has been Dr. Una MacConville, University of Bath, and is allocated between five part of an overall commitment by the Alzheimer organisations by the Big Society of Ireland to support work in the Lottery Fund Scotland. development of palliative care for people living Alzheimer Scotland Action on with dementia. Dementia will receive GBP 234,929 to produce a carer resource guide for the Highland region The proposed research aims to develop a and “a report to highlight models of good model of best practice to integrate palliative practice and recommendations to overcome care interventions into the Alzheimer Society of barriers and identify a new practice model.“ Ireland service planning (needs assessment and devising care plans) and will contribute Henry Simmons, Chief Executive of Alzheimer significantly to the organisation’s capacity to Scotland said: “This funding will be absolutely continue its programme for developing invaluable to the many people who care for palliative care for people with dementia. someone with dementia in the Highlands.

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Carers are often faced with social isolation, 26 January 2010: Neil Hunt leaves particularly so in remote and rural areas; this position of Chief Executive of the support will help them to stay involved in Alzheimer’s Society community life and reassure carers that they do not have to cope with dementia on their own.” After nearly seven years in the role as Chief Executive of the There are some 660,000 carers in Scotland Alzheimer’s Society, Neil Hunt and the remaining funds will go to: left the position. On his a) the Chest, Heart and Stroke Scotland departure, he said: organisation which will fund a new “I have decided that after nearly web-based training package for carers seven years in post, now is the (GBP 109,000), time to seek new challenges. b) a University of Stirling initiative that The dementia agenda has changed beyond all will help to improve the lives of 1,000 recognition in recent years. No longer will this older carers who look after a person condition be ignored in the way it once was. I with dementia (GBP 306,876), am confident that as a health priority we see a new determination to address the challenges it c) the Renfrewshire Carers’ Centre brings to individuals, families and to us all as a which will develop an emergency nation. planning database (GBP 273,639) and “Alzheimer's Society has also been d) the Princess Royal Trust for Carers substantially remodelled. It is a stronger, more (GBP 229,148). confident organisation with a clear management line embracing all branches, staff Big Lottery Fund Scotland chairwoman, Alison and volunteers, enabling it to rise to the Magee, explained: "With this GBP 1m challenge of meeting the needs of 700,000 investment the Big Lottery Fund wants to people. I will miss the job but this is the time to support people who are at risk of becoming leave.” isolated and left to cope on their own without the emotional support or practical information Alastair Balls, Chair of Alzheimer's Society, they require.” said: 15 January 2010: Statutory bodies of 'Neil has made a tremendous contribution to Alzheimer Portugal take office Alzheimer's Society and to people living with dementia. The National Dementia Strategy for Following the elections on 14 England and the similar plans for Wales and November 2009, members of Northern Ireland are testament to his the newly elected statutory bodies of Alzheimer outstanding energy and vision. The whole Portugal took office on 15 January 2010 for a Society wishes him well in his next role.” term of three years (2010-2012 inclusive). Ruth Sutherland, Chief Operating Officer of Some of the previous members from the Board Alzheimer's Society will become Acting Chief have been retained, including its President Executive until a replacement is appointed. Maria do Rosário Zincke dos Reis (also current member of the Alzheimer Europe Board, Alzheimer Europe, who has enjoyed a strong elected in 2008). and productive collaboration with Neil in his role as Alzheimer Europe Board member since The candidacy for the next three years took 2008, would like to take this opportunity to wish into consideration the work that has been Neil every success in his new challenges. initiated, most notably with regard to the completion of the Alapraia Project - a nursing 29 January 2010: Belgian Alzheimer home directed to people with dementia - and of association’s “bulk mail” initiative a all tasks that relate to this project, namely success operation and financing, which poses a great challenge for the next three years. Employees and volunteers of the Belgian Besides ensuring the continuity of the work Alzheimer association, done by the previous members, the new La Ligue Alzheimer, worked hand in hand statutory bodies also add new elements, with during January to make their “2010 bulk mail” technical and work expertise, providing added initiative a success. Their teamwork ensured values for the success of the Alapraia Project. that thousands of letters and colourful leaflets with the 2010 agenda of La Ligue Alzheimer’s activities were sent to families and professionals. The envelopes included information on dates, themes and meeting

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points for conferences, Alzheimer Cafés, • adult support and protection. training sessions and discussion groups. Alzheimer Scotland will be available for The bulk mail was the result of considerable information and support. preparatory work by the organisation which included finding themes and speakers for the The event costs GBP 5.00 and will take place conferences, booking premises for the on 15 February and bookings can be taken Alzheimer Cafés and updating documents. until 10 February 2010. Having gathered all the information, volunteers 5 May 2010: Alzheimer Society of Paulette, Louis and Guy folded leaflets, glued Ireland will organise fund-raising stickers and stamps and posted the letters. cycle challenge in Cuba Members’ In order to raise awareness of Alzheimer’s disease and funds for forthcoming events the Alzheimer Society of Ireland, the Cuba Cycle Challenge 2010 will February 2010: Swedish Alzheimer take place from 5th to 13th May. The 8-day, association prepares training fully supported point-to-point road 325 km road courses for dementia nurses tour can be completed by anyone of average fitness after training. Following on from their successful educational courses on dementia in 2009, Alzheimerföreningen i Sverige Science Watch will run further courses in February, This section has a selection of the most recent March, April and May. Each three- published research on dementia, including day course accommodates up to 25 nurses and research on the prevention, diagnosis, and lectures are offered by some of Sweden’s most treatment of the disease. respected scientists with topics such as ethics and treatment being covered. 4 January 2010: Study identifies new compounds in snowdrop plants In addition, the association is preparing to which may be beneficial in the continue with their information nights around Sweden. treatment of Alzheimer’s disease Researchers obtained 17 alkaloids 15 February 2010: Alzheimer (naturally occurring chemical Scotland will organise information compounds which contain nitrogen) day on money and legal matters for from two types of winter snowdrop people with dementia, their carers plants (galanthus nivalis and and families galanthus elwesii). Three of the identified Alzheimer Scotland will be alkaloids were new to science. The alkaloid hosting a “Money and Legal isolated in the galanthus elwesii species is a Matters Information Day” “licorine” alkaloid and some derivatives of where, during a series of licorine are known to be able to inhibit the workshops, experts will discuss amongst other enzyme acetylcholinesterase. This enzyme things: plays a detrimental role in Alzheimer’s disease as it degrades the neurotransmitter • how people with dementia can be acetylcholine and therefore the researchers involved in planning their own care hope to investigate whether the newly identified and support alkaloid may prove to be useful in the treatment of the disease. • how they can make their wishes known when planning for the future Alkaloids already found in the botanical family to which these two plants belong • the social security benefits and other (Amaryllidaceae) are acetylcholinesterase kinds of financial help available to (ACE) inhibitors, such as galantamine which is people with dementia and their carers used to treat mild to moderate Alzheimer’s • paying for care at home or in a care disease. home The research was carried out by the University • rights to community care services of Barcelona (UB). • power of attorney • guardianship and intervention orders

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4 January 2010: Study investigates received the drink “Souvenaid” once a day for the interactions between HIV 12 weeks compared to those who had not. The infection, ageing and brain function study consisted of 225 people with Alzheimer’s disease, some of whom received Souvenaid, A study has found that the brain blood flow others receiving a control drink. Souvenaid values in people with HIV were “significantly includes the ingredients omega-3 fatty acids, reduced compared to uninfected controls”. The uridine, cholorine, B vitamins and antioxidants. levels were found to be equivalent to readings for uninfected individuals 15 to 20 years older. Led by Professor Richard Wurtman of the The blood flow was measured by using a non- Massachusettes institute of Technology, invasive technique known as arterial spin Boston, USA, the research has been published labelling. in the January 2010 edition of the Journal of the American Alzheimer’s association. Participants with HIV had greater blood flow increases than the control group when asked to 10 January 2010: Study investigates perform visual tasks, which suggests that the effects of chemical found in seaweed brain had to work harder. The researchers on Alzheimer’s disease concluded that HIV infection, or its treatments, are prematurely ageing the brain. Researchers found that the chemical “homotaurine” (which is Led by Beau Ances, MC, PhD, assistant found in seaweed) may have a professor of neurology at Washington beneficial effect for people with University, St Louis, USA, the research was Alzheimer’s disease. Led by published in the Journal of Infectious Diseases. Giovanni Scapagnini of Molise University, Italy, the study was presented at a geriatric medicine We provide full references to convention in Rome. Some 2,000 people from articles on our website. Please visit Europe and the US participated in the study the completely revised Alzheimer which was conducted over an 18-month period. Europe website on: 11 January 2010: Study examines the association between diabetes www.alzheimer-europe.org mellitus and dementia 6 January 2010: Study examines the A study on the risk that diabetes plays in the relationship between conversion from mild cognitive impairment to electromagnetic waves and dementia found that “diabetes mellitus Alzheimer’s disease increases not only the risks of dementia and mild cognitive impairment but also the risk of Research on mice suggests that progression from such impairment to long-term (two 1 hour periods dementia”. each day for nine months) exposure to electromagnetic The study was carried out by Alzheimer’s waves associated with cell phone use may Research Trusts scientists at King’s College, actually protect against, and even reverse, London, UK and published in the British Alzheimer’s disease. Researchers found that if Journal of Psychiatry. the exposure began in early adulthood that 11 January 2010: Study examines cognitive ability appeared to be protected and the effects of a health warning on in older mice memory problems appeared to the use of antipsychotic drugs for disappear when exposed to the waves. people with dementia Further research will be carried out. Researchers who analysed data of atypical The study, led by University of South Florida antipsychotic drug use in the US between 2003 researchers at the Florida Alzheimer’s Disease and 2008 found a decline in the use of atypical Research Center (ADRC), was published today medications within one month of the Food and in the Journal of Alzheimer’s Disease. Drug Administration (FDA) issuing an advisory regarding the risks of such medication in the 8 January 2010: Study examines the treatment of elderly people with dementia. The effect of health cocktail drink on the advisory, issued in April 2005, requested that memory of people with Alzheimer’s drug manufacturers include a warning disease regarding with the medication regarding the increased risk of death being associated with Researchers found a “significant using atypical antipsychotics to treat improvement in the delayed verbal behavioural symptoms in older people with recall task” in people with dementia. The decline in the use of atypical Alzheimer’s disease who had

Page 12 of 18 Newsletter: January 2010

medications continued to the end of 2008 13 January 2010: Study examines (when the study finished) and contrasts with the relationship between the loss of the increased rate of atypical drug usage from smell and Alzheimer’s disease in January 2003 to March 2005. mice 12 January 2010: Study examines A study on mice has found a link between a the role that blood pressure drugs loss of smell and the build up of amyloid protein may have in the prevention of in the brain (associated with Alzheimer’s Alzheimer’s disease disease). The researchers found that Alzheimer’s disease pathology occurs first in a Researchers from Boston University region of the mouse brain responsible for School of Medicine, US, have found smelling and coincided with the mice having that “angiotensin receptor blockers abnormal abilities to smell. This led to the are associated with a significant conclusion that olfactory dysfunction may reduction in the incidence and become a diagnostic tool for Alzheimer’s progression of Alzheimer’s disease and disease. dementia compared with angiotensin converting enzyme inhibitors or other cardiovascular drugs The research was conducted by the NYU in a predominantly male population”. Langone Medical Center, USA and published in the Journal of Neuroscience. The study was published in the British Medical Journal. 13 January 2010: US drop in federal funds impacts Alzheimer’s disease 12 January 2010: Study compares research funding the prevalence of subtypes of depression with different types of A study shows that “After a decade of doubling, dementia the rate of increase in biomedical research funding slowed from 2003 to 2007, and after Researchers who compared the prevalence of adjustment for inflation, the absolute level of subtypes of depression in people with funding from the National Institutes of Health Alzheimer’s disease, vascular dementia and and industry appears to have decreased by 2% unspecified dementia, found that depressive in 2008.” disorders are more prevalent in vascular dementia in comparison with the other two Speaking of the impact upon research funding types. for Alzheimer’s disease, Bill Thies, chief medical and scientific officer of the Alzheimer’s The study was led by Ruby C. Castilla- Association, Chicago, Illinois said, “You might Puentes, Director, Post-Marketing Safety as well go and buy a couple of lottery tickets – Expert, Johnson & Johnson, Pharmaceutical that’s got the same chance of funding your Research and Development and published in lab…The investment in Alzheimer disease is the Journal of the Alzheimer’s Association. simply inadequate for the size of the public 12 January 2010: Study examines health issue that is going to present to the early dementia diagnosis in relation world.” to the risk of suicide and euthanasia The study was carried out by researchers from Researchers have found that there is a need to the University of Rochester Medical Center, develop protocols to monitor and manage New York, USA and published in the Journal of suicide risk, which will assist specialists when the American Medical Association conveying the diagnosis of dementia. This is 13 January 2010: Study suggests because diagnosis of dementia occurs earlier link between gene variation and a and this, together with an absence of any slower memory decline, lower effective treatments for Alzheimer’s disease incident dementia and Alzheimer’s and other forms of dementia, results in a disease risk potential risk of suicide and/or requests for physician-assisted suicide. A study suggests that there may be an association between a particular variation The study was led by Brian Draper, School (V405) of the gene choleteryl ester Psychiatry, University of South Wales, Sydney, transfer protein (CETP) and a slower and published in Alzheimer’s and memory decline and lower incident Dementia, The Journal of the Alzheimer’s dementia and Alzheimer’s disease risk. Association. The study was carried out by researchers from Yeshiva University and the Mount Sinai School of Medicine, New York, USA and published in

Page 13 of 18 Newsletter: January 2010

the Journal of the American Medical more severe Alzheimer’s symptoms than those Association. who did not experience the lapses. 14 January 2010: New technique The study was led by James E Galvin, identified which may help early Washington University School of Medicine in St diagnosis and subsequent treatment Louis, USA and published in the American of Alzheimer’s disease Academy of Neurology. A study on mice and rats has 18 January 2010 : Study examines enabled researchers to identify a the effect of excess copper and iron new technique which enables in the ageing process retinal cell death to be measured A study suggests that whilst in real time. It is hoped that this technique copper and iron are useful could be particularly useful in early diagnosis of during reproductive years, that neurodegenerative disorders such as as the ageing process takes Alzheimer’s disease and subsequently, place, an excess of these metals causes assessing treatment. oxidant damage and that symptoms of The research was led by Professor Francesca Alzheimer’s disease and heart disease become Cordeiro, Glaucoma and Retinal exacerbated. Neurodegeneration Research Group, UCL This led the research team to review ways in Institute of Ophthalmology, University College which intake of the harmful substances could London, UK and published in the journal Cell be reduced. Death and Disease. The research was led by George Brewer, 17 January 2010: Study illustrates Departments of Human Genetics and Internal how zebra fish respond to drugs may Medicine, University of Michigan Medical help researchers understand human School, USA and published ahead of print the response to drugs journal Chemical Research in Toxicology and Zebra fish have a similar brain chemistry to also as a press release on the American humans, therefore, how the fish respond to Chemical Society’s website. certain drugs may help researchers predict how 20 January 2010: Study examines humans will respond to the same drugs. Two the effect consumption of blueberry research teams (one led by Peterson from the juice has on memory Harvard Medical School, Massachusettes, USA, and one from led by Alexander Schier at A study in which volunteers with Harvard University) found that “each drug had early memory decline drank the its own fingerprint in terms of what kinds of equivalent of 2-2.5 cups of behaviour it produced. And drugs with similar commercially available blueberry fingerprints tended to tweak the same juice (which contains phytochemicals) every molecular pathways, which suggests zebra fish day for a two-month period found that they behaviour is a good indicator for how a drug displayed “significant improvement on learning will change chemistry in the human brain.” The and memory tests” compared to the control teams identified chemicals that might treat, group. inter-alia, Alzheimer’s disease. The study was carried out by researchers from We provide full references to the University of Cincinnati and the Canadian Department of Agriculture and published in the articles on our website. Please visit Journal of Agricultural and Food Chemistry. the completely revised Alzheimer Europe website on: 25 January 2010: Study examines the role of the protein FKBP52 plays www.alzheimer-europe.org in Tau function Abnormalities of Tau proteins can be 18 January 2010: Study examines associated with Alzheimer’s disease. In a study relationship between mental lapses which examined whether there was a and Alzheimer’s disease relationship between the binding protein, A study which looked at cognitive fluctuations FKBP52, and the Tau function, it was found (mental lapses such as feeling drowsy or that FKBP52 “binds directly and specifically to lethargic, sleeping before 7pm, disorganised Tau” and that an “over-expression of FKBP52 flow of ideas and/or staring into space) found in differentiated PC12 cells prevented the that people with mental lapses were accumulation of Tau which resulted in reduced significantly more likely to have dementia and neurite length.” Researchers concluded that

Page 14 of 18 Newsletter: January 2010

these findings could indicate a role for FKBP52 The study (INVADE) led by Thorleif Etgen, in Tau function. Department of Psychiatry and Psychotherapy, Technische Universität München, Germany, Carried out by Etienne-Emile Baulieu, Institut was carried out on nearly 4,000 participants National de la Santé, Paris, France, and aged over 55 years and it was published in the colleagues, the research was published in the Archives of Internal Medicine. journal of the Proceedings for the National Academy of Sciences (PNAS). 27 January 2010: Study examines dementia and mortality in people 25 January 2010: USD 10 million with Down syndrome grant awarded for frontotemporal dementia research A study of dementia and mortality in people with Down syndrome may suggest a link The US National Institutes of Health have between the early onset of menopause and the awarded USD 10 million to researchers at the development of dementia at a younger age. University of San Francisco in order to This is because researchers found a that: “age investigate how to “use new imaging at menopause in women with Down syndrome techniques to illuminate the changes that occur is a determinant of age at onset of dementia in the brain” as frontotemporal dementia and mortality”. progresses. The imaging project will be obtained in various ways: through structural The study was carried out by Antonia MW magnetic resonance imaging, position emission Coppus (Erasmus Medical Centre, Rotterdam, tomography, measurements of blood content in the Netherlands) and colleagues and published the brain and diffusion tensor imaging. in the Journal of Alzheimer’s disease. The researchers hope that this study will result 30 January 2009: Study examines in biomarkers for diagnosis being identified, brain activity and internet usage offer a method for tracking the impact of experimental drugs and even lower the cost of The results of a study which examined the clinical trials. brain activity in people who had used the internet and in those who had not, suggest that The Mayo team of researchers will work on this internet use “triggers centers in the brain that study, known as the Frontotemporal Lobar control complex reasoning and decision- Degeneration Neuroimaging Initiative, and will making”. The lead author, professor Dr. Gary be led by David Knopman MD. Small, UCLA Memory and Ageing Centre, concluded that “a simple, everyday task like 25 January 2010: Study examines searching the Web appears to enhance brain the effects of resistance training and circuitry in older adults, demonstrating that our tone exercise training on cognitive brains are sensitive and can continue to learn functions in elderly women as we grow older”. A twelve month study on 155 elderly (65 to 75 The small study was conducted on 24 years old) women which examined the effects volunteers, aged 55-76 by researchers from the of resistance and/or exercise training on UCLA Memory and Ageing Centre and cognitive function found that “resistance published on the website of Assisted Living. training benefitted the executive cognitive function of selection attention and conflict 28 January 2010: Study on mice resolution” among the women. Executive creates neurons from skills cells cognitive functions are considered to be necessary for independent living. A study on mice has managed to genetically re- programme skins cells into neurons. In the The study was led by Dr Teresa Liu-Ambrose, study “skins cells were infected with a assistant professor in the Faculty of Medicine, genetically modified virus that inserted genes University of British Columbia, Canada and into the cells DNA. The researchers began by published in the Archives of Internal Medicine. introducing 19 genes that are known to be switched on when mice stem cells first 25 January 2010: Study examines differentiate into neurons during embryonic the relationship between physical development”. After a week, the researchers activity and cognitive impairment found that some of the skin cells had become A study in Bavaria, Germany, which monitored fully-functioning neurons. physical activity and cognitive function found The study could have far-reaching implications that moderate or high physical activity in the for diseases such as Alzheimer’s disease and elderly to be associated with a reduced the researchers are now focusing on carrying incidence of cognitive impairment after two out the tests on human cells. years.

Page 15 of 18 Newsletter: January 2010

Carried out by Irving Weissman and colleagues 12 January 2010: Ex-talk show host, from Standford University, California, USA, the Sir Michael Parkinson, talks of his study has been published in the journal Nature. experience with dementia and the importance of dignity in care We provide full references to articles on our website. Please visit In his capacity as the UK government’s Dignity Ambassador, the completely revised Alzheimer Sir Michael Parkinson has written a Europe website on: report about his experience of caring for his mother who had www.alzheimer-europe.org dementia and highlighted the importance of dignity in care for older people. Dementia in Society He said: “I gained first hand experience of the National Health Service and care services Articles here include coverage of dementia in during my mother's illness with dementia. It the media, for example on television and in struck me that whilst there are some excellent films. examples of care, where people are given the dignity and respect they need and deserve, 11 January 2010: TV presenter much more needs to be done.” raises awareness of Alzheimer’s disease 18 January 2010: Musicians raise awareness of Alzheimer’s disease British TV presenter, Fiona Phillips, who gave up her job Bass guitarist, Stuart Hamm and musician in order to spend more time Andy Edwards have recorded an album and with her father, who has shot a video to raise awareness of Alzheimer’s Alzheimer’s disease, has disease. Andy’s mother, Avis, (aged 67) was reflected on her new role as carer and diagnosed with dementia a year ago and this campaigner. motivated him to write the music and ask Stuart Hamm if he would play on the album. “Into my She has made a film to raise awareness of the distance” has three instrumental tracks and is disease (Dispatches: My Family and available as a video on YouTube. Proceeds Alzheimer’s), hoping to bring about a change in from the video will be donated to the Alzheimer the way Alzheimer’s disease is perceived and Research Trust. addressed. Ms Phillips feels that the situation has deteriorated over the last year and calls on voters to use their power to influence change. New resources and She highlighted the lack of support after publications diagnosis when she said: "You're very much left on your own with Alzheimer's. It's more by By reporting on recently published books, luck than by design that you get a proper reports and information videos on dementia we diagnosis and care package. If you receive a hope to offer updates on the current resources diagnosis, you're told to go away and get on available to anyone who is affected by with it - there's this awful misconception that it's dementia. just part of old age." 15 January 2010: UK Report Writing about her concerns of putting her father identifies challenges regarding long- into a home, Ms Phillips said “I know he’d hate term care for older people sitting around in a home with other people … I “Devolution’s impact on low-income people and know the moment will come and when it does I places” is a paper which reports on the impact will feel I have failed. It will be as if I’ve helped of devolution within the UK as well as policy to sentence him to death”. She also said “My developments including those in the area of dad has become this lovely old man. He is a long-term care for older people. The little odd at times but he behaves as if the rest researchers found: of us are mad and he is the sane one. It is sort of true that the world is mad. If it was a sensible • The challenges faced by different world, we wouldn’t neglect people with parts of the UK in terms of demand for Alzheimer’s.” long-term care among older people to be similar. • Delivery of long-term care to be largely in the hands of local authorities, except in Northern Ireland. A side divergence in need, ability to

Page 16 of 18 Newsletter: January 2010

pay and provision across local authorities within each country exists. • Devolved countries cannot pursue long-term care policies that are wholly independent of the UK Government. • Devolved administrations are at a disadvantage in developing long-term care policy because they do not have sufficient resources to conduct large- scale evaluations. The DWP and devolved administration do not tend to work closely in the development of policies. The report also highlights the fact that “the Welsh approach to social care for older people has enabled local authorities to level out care charges and reduce costs for those on lower incomes, whereas Scotland has a more universal approach which is more comprehensive and costly”. Carried out by Jim McCormick and Anne Harrop, the report is published by the Joseph Rowntree Foundation.

27 January 2010: Training video

launched On a training video about the Contact Alzheimer Europe at: needs of lesbian, gay, bisexual and transgendered people Alzheimer Europe, 145 route de Thionville, L-2611, (LGBT), Roger Newman Luxembourg (www.alzheimer-europe.org) (pictured left) movingly speaks Jean Georges, Executive Director about his experience of firstly ([email protected]) caring for his partner, David, Dianne Gove, Information Officer who had dementia and subsequently caring for ([email protected]) Michael who had cancer. Roger highlights the Annette Dumas, EU Public Affairs Officer importance of care staff giving recognition and ([email protected]) respect to the relationship the carer and patient Julie Fraser, Communication Officer have. The video talks through: ([email protected]) Gwladys Guillory-Hickey, Administrative Assistant • The change in David’s behaviour and ([email protected]) diagnosis Grazia Tomasini, Administrative Assistant • Deciding how to care for David ([email protected])

• The anxieties faced by LGBT people Alzheimer Europe Board going into care Chairperson: Maurice O’Connell (Ireland) • Roger’s experiences of residential Vice-Chairperson: Sabine Henry (Belgium) care with his partner Honorary Secretary: Sigurd Sparr (Norway) Honorary Treasurer: Heike von Lützau-Hohlbein • Working with the home to make it a (Germany) more inclusive environment Members: • Making the decision to disclose their Iva Holmerová (Czech Republic) sexuality to care professionals Neil Hunt (United Kingdom) Pekka Laine (Finland) Being respected in the care package. Patrick Maugard (France) Alicja Sadowska (Poland) Charles Scerri (Malta) Marc Schaefer (Luxembourg) Maria do Rósario Zincke dos Reis (Portugal)

Page 17 of 18 Newsletter: January 2010

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

Date Meeting AE Representative 4 February 2010 EFPIA Think Tank (Brussels, Belgium) Annette Second meeting of the Advisory Group preparing the Belgian EU Presidency 9 February 2010 Annette conference on dementia (Brussels, Belgium) 9 February 2010 Steering Committee meeting of PharmaCog project (London, UK) Jean 19 February 2010 Sounding Board of Interlinks project (Brussels, Belgium) Jean 22 February 2010 Advisory Meeting of Recognition programme (London, UK) Jean Future Conferences

Date Meeting Place 6th Annual Update Symposium Series on Clinical Neurology & 15-16 February 2010 Tel Aviv, Israel Neurophysiology, www.neurophysiology-symposium.com The 3rd International Congress on Gait & Mental Function. The Interplay 26-28 February 2010 Washington, USA between Walking Behaviour and Cognition, www.kenes.com/gait 27 February-2 March 18th European congress of psychiatry, www.kenes.com//epa Munich, Germany 2010 10 March 2010 25th International Conference of Alzheimer’s Disease, www.adi2010.org Thessaloniki, Greece 11th International Geneva/Springfield Symposium on Advances in 24-27 March 2010 Geneva, Switzerland Alzheimer Therapy, www.internationalspringfieldsymposium.com American Academy of Neurology  62nd Annual Meeting, 10-17 April 2010 Toronto, Canada http://www.aan.com/am 25ème Colloque Médecine et recherche sur la maladie d’Alzheimer de la 26 April 2010 Paris, France Fondation Ipsen 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 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] 30 September – 2 20th Alzheimer Europe Conference “Facing Dementia Together”, Luxembourg, Luxembourg October 2010 www.alzheimer-europe.org/conferences 19-21 October 2010 Coming of Age: Dementia in the 21st Century, www.dementia.stir.ac.uk London, UK 10th Congress of European society for clinical neuro-pharmacology, 21-23 October 2010 Zagreb, Croatia [email protected]

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.

Page 18 of 18

NEWSLETTER February 2010

Internet site are also going Highlights in this Editorial according to plan and later issue this month, we will be February was launching the abstract a quieter 31 January 2010: France submission and registration Alzheimer welcomes new 5 month with forms for the 20th Alzheimer Executive Director regard to Europe conference in meetings and 2 February 2010: Belgian Luxembourg. I am delighted conferences Presidency of EU carries that thanks to the support of 3 than usual. out survey on societal the European Commission, impact of dementia We were able to put this we will be able to offer 9 February 2010: John time to great use and to registration at EUR 240, a Dalli confirmed as new EU 3 progress on a number of much reduced rate Health Commissioner key priorities of our 2010 compared to previous years. work plan. 9 February 2010: New The growing role of dementia guidelines to be 4 The preparations for the Alzheimer associations is developed in the Netherlands Dementia in Europe again highlighted in magazine are progressing February’s issue. You will well and thanks to Julie’s find news on our Dutch efforts, the next edition colleagues partnering with again promises to be full of the Ministry of Health in the interesting initiatives and development of new interviews with policy outcome indicators for makers from different dementia care, whereas the European countries. Our President of the French campaign to make dementia association participated in a European and national an evaluation meeting of the priority thus continues to French Alzheimer’s Plan. show results. The variety of research With the return of Dianne articles this month is again after a prolonged sickness highly impressive. Yet at the leave, we were also able to same time, a report in the UK underlined the lack of advance on our European dementia ethics project. We funding for research into the Table of contents were able to find experts causes and a cure for Alzheimer’s diseases Editorial...... 1 from different countries for both our working group on compared to other European Alzheimer’s Alliance ...... 2 assistive technologies as conditions. Alzheimer Europe ...... 2 well as the Steering And last but in no ways Committee of the project Alzheimer Europe Networking ...... 3 least, we report on the and Dianne finalised a first European developments...... 3 European Parliament literature review on the confirming John Dalli from Policy Watch...... 4 issue of assistive Malta as the new Health Members’ News...... 5 technologies. We will report Commissioner and we in more detail on this work in Science Watch ...... 5 sincerely hope that we will next month’s newsletter Dementia in Society ...... 8 be able to count on his after the working group has continued support for our New resources and publications ...... 9 met in Brussels on 8 and 9 important cause. AE Calendar ...... 12 March. Jean Georges Future Conferences...... 12 The conference planning and the changes to our Executive Director

Page 1 of 12 Newsletter: February 2010

European Italy Panzeri Pier Antonio (S&D), Toia Patrizia (S&D) Alzheimer’s Alliance Luxembourg

In February Nessa Childers, MEP (Ireland) Lulling Astrid (EPP) joined the European Netherlands Alzheimer’s Alliance. De Lange Esther (EPP), van Nistelrooij Lambert With her support, the (EPP), Wortmann-Kool Corien (EPP) number of Members of the European Parliament who Portugal have pledged their support Coelho Carlos (EPP) to Alzheimer Europe by joining the European Slovakia Childers Nessa Ireland, S&D Alzheimer’s Alliance has Mikolasik Miroslav (EPP), Zaborska Anna (EPP) been increased to 42. Alzheimer Europe can now count on the United Kingdom support of Members of the European Hall Fiona (ALDE), McAvan Linda (S&D), Moraes Parliament from six of the seven political Claude (S&D), Simpson Brian (S&D), Watson groups and from 15 of the 27 Member States of Graham (ALDE), Willmott Glenis (S&D) the European Union. The members of the European Alzheimer’s Alzheimer Europe Alliance are the following: 1 February 2010: Alzheimer Europe’s Belgium: recommendations on end-of-life care Brepoels Frieda (Greens/EFA), Ries Frédérique published in the Journal of Nutrition, (ALDE), Staes Bart (Greens/EFA), Sterckx Dirk Health & Aging (ALDE) Highlights of the Alzheimer Europe Cyprus: recommendations on good end-of-life care for people with dementia have been published in Triantaphyllides Kyriacos (GUE-NGL) the Journal of Nutrition, Health & Aging. The Czech Republic: recommendations were drawn up by the Alzheimer Europe working group on end-of-life Cabrnoch Milan (ECR), Kohlicek Jaromir care (see below) to “provide a basis for (GUE/NGL), Roithova Zuzana (EPP) understanding and action with regard to end-of- Denmark: life care not only for family caregivers but also for professionals, policy makers and anyone Schaldemose Christel (S&D) with an interest in palliative care”. Finland: The recommendations cover issues such as: Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli (ALDE), Pietikäinen Sirpa (EPP) • Dignity • Treatment France • Care Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise • Consultation (EPP), Morin-Chartier Elisabeth (EPP) • Discrimination Germany • Support Niebler Angelika (EPP), Roth-Behrendt Dagmar • Training (S&D), Ulmer Thomas (EPP), Weisgerber Anja (EPP) • Wishes of the person with dementia Greece • Funding Koppa Maria Eleni (S&D), Kratsa-Tsagaropoulou • Information Rodi (EPP) • Legislation. Ireland The working group consisted of Sigurd Sparr Aylward Liam (ALDE), Childers Nessa (S&D); (Nasjonalforeningen Demensforbundet, Crowley Brian (ALDE), McGuiness Mairead (EPP), Norway); Dianne Gove (Alzheimer Europe, Mitchell Gay (EPP) Luxembourg); Ana Bernardo (Hospital Residencial do Mar , Portugal); Mary Cosgrave (Beaumont Hospital, Ireland); Iva Holmerová

Page 2 of 12 Newsletter: February 2010

(Gerontologické centrum, Hungary); Sabine Alzheimer Europe partnered in this survey and Jansen (Deutsche Alzheimer Gesellschaft e.V., collaborated both on the development of the Germany); Birgitta Martensson (Association survey as well as the data gathering from Alzheimer Switzerland); Barbara Pointon national Alzheimer societies. (Ambassador for the Alzheimer’s Society, UK) and Catalina Tudose (Romanian Alzheimer The survey aims at identifying examples of best Society, ). practice with regard to the involvement of 2 February 2010: Alzheimer Europe people with dementia as collaborates with Belgian authorities citizens in local on survey on the societal aspects of communities, policies dementia and services for people with dementia living with Belgium, as the forthcoming EU Presidency of their families or living the European Union (second semester of 2010) alone and support and identified the challenge of dementia as a training for family priority of its work programme and caregivers. commissioned the King Baudouin Foundation Murna Downs to carry out a survey on the views of Alzheimer The survey responses University of Bradford associations on the societal aspects of will be analysed by dementia. Murna Downs, the chair in dementia studies at the University of Bradford and the results will be presented at a conference at the end of 2010. Alzheimer Europe Networking On 7 January (London, UK) Jean participated in the launch of the PharmaCog project. On 4 February (Brussels, Belgium), Annette attended the Think Tank of the European Federation of Pharmaceutical Industries and Associations (EFPIA). On 18 February (Luxembourg, Luxembourg), Jean met with representatives from Association Luxembourg Alzheimer and the University of Luxembourg for an exchange on the upcoming Alzheimer Europe conference in Luxembourg. On 23 February (Brussels, Belgium), Annette attended the Carers Interest Group meeting on the EU 2020 strategy. On 24 February (Luxembourg, Luxembourg), Jean met with Visual Online to discuss changes to the Alzheimer Europe website. On 25 February (Luxembourg, Luxembourg), Krasimira Yordanova from Foundation Compassion Alzheimer Bulgaria paid a visit to the Alzheimer Europe offices.

different portfolios. Of particular interest to the European activities of Alzheimer Europe and our member developments organisations are the following appointments: • John Dalli (Malta) is the new Here we report on developments from the Commissioner for Health and European institutions which may impact people Consumer Policy, with dementia and/or their carers. • Laszlo Andor (Hungary) is the new 9 February 2010 : European Commissioner for Employment, Social Parliament confirms new European Affairs and Inclusion Commission and approves a set of • Máire Geoghegan-Quinn (Ireland) is principles for cooperation between the new Commissioner for Research, the two institutions Innovation and Science, At its plenary sitting of 09 February 2010, the • Former Information Society European Parliament approved the new Commissioner Viviane Reding European Commission led by President José (Luxembourg) has been reappointed Manuel Barroso, clearing the way for the EU with the Justice, Fundamental Rights executive to take office after nearly four months and Citizenship portfolio and behind schedule. • Former Health Commissioner The new European Commission was voted by Androulla Vassiliou (Cyprus) has been 488 votes to 137, with 72 abstentions: 14 of the given the Education, Culture, 27 Commissioners have been reappointed with Multilingualism and Youth portfolio.

Page 3 of 12 Newsletter: February 2010

The new Commission will have a 5-year having been commissioned to do so by the mandate and stay in office until 31 October Alzheimer’s Research Trust. 2014. 9 February 2010: Development of With regards to the dementia guidelines to commence in new provisions of the the Netherlands Lisbon Treaty which entered into force on 1 The Ministry of Health, Welfare and Sports has December 2009 and announced that “Zorgstandaard dementia” (are which establishes a standard) will be developed, which will include a set of outcome indicators for dementia care. new institutional balance, the This should result in a solid financial base for John Dalli EU Health Commissioner European Parliament the purchase of integrated care for people with voted at the same dementia in 2012. time on a set of key principles to govern the The guidelines will be developed cooperation between the Assembly and the with Alzheimer Nederland, Commission. together with professionals and The European Parliament and the European care providers and should Commission are currently revising the integrate existing professional Framework Agreement that defines the guidelines (eg. On medical relations between the two institutions, including diagnosis, good collaboration practice) with the their political responsibilities, the flow of patient’s wishes, evidence based intervention information and legislative coordination. and good practice guidelines. This will result in an Intergrated Care Standard which will help all parties from pre-diagnosis, through the Policy Watch progression of the disease to the end stage. In this section you can find articles on various 10 February 2010: UK government national policies and initiatives which can have care bill could result in extra care an impact on issues surrounding dementia. costs for local authorities 2 February 2010: UK report Local authorities in the UK have expressed highlights underfunded dementia their concern that the proposed Personal Care research at Home Bill could result in their having higher The results of the report “Dementia 2010 – The care costs. Under the proposals people with economic burden of dementia an associated “critical needs” will be able to receive free care research funding in the United Kingdom” and others will be entitled to “re-ablement” such considers the costs of dementia, the costs of as adaptations to their homes. Current cancer and cost comparisons across diseases applicants who pay for their care may be as well as dementia research funding. Rebecca entitled to this free care, but it remains unclear Wood, Chief Executive of the Alzheimer’s how this would be funded. Concerns have also Research Trust highlighted the report’s findings been raised about how the eligibility criteria that: would function. • Every person with dementia in the UK 24 February 2010: US Legislation costs the economy GBP 27,647 each introduced to create national office year which is more than a UK median leading government efforts to treat salary and prevent Alzheimer’s disease • Government charitable spending on Legislation which would create the first US dementia research is 12 times lower national office responsible for leading than that on cancer, despite patients government efforts to treat and prevent with cancer costing the economy GBP Alzheimer’s disease has been proposed by 5,999 per year. Senators Evan Bayh and Susan Collins. The newly formed office would by within the And she concluded that “If we spend more Department of Health and Human Services and proportionate sum on dementia research, we its objective would be “to coordinate and could unleash the full potential of our scientists oversee federal research on Alzheimer’s in the race for a cure. Spending millions now disease to develop a plan to combat the really can save us crippling multi-billion pound disease and eventually develop a cure.” care bills later.” The Health Economics Research Centre at the University of Oxford produced the report,

Page 4 of 12 Newsletter: February 2010

Alzheimer’s disease, has supported this Members’ News appeal. Ms Ekland said “My mother was struck by dementia in her early 60s and was ill for In this section we report on our members’ latest eleven tortuous years” initiatives and work. 31 January 2010: New director “Dementia is not a natural part of ageing; it is appointed for France Alzheimer caused by diseases of the brain and robs people of their lives. I have made it my duty to Thierry Jarlet, a former spread awareness and help others living with Director of dementia and those Communication and who care for them. Administrative Affairs of 'We all have odd bits of the Commission jewellery or even Nationale Informatique costume jewellery that's et Libertés (CNIL), and no longer in style that Consultant on the could be donated. Get a theme of efficacy head start on spring Thierry Jarlet creation of value versus France Alzheimer cleaning to help ethics/authenticity, has Alzheimer's Society commenced work in his new role of Director defeat dementia by General for France Alzheimer. donating your old and

11 February 2010: France Alzheimer unwanted jewellery Britt Ekland participates in review of the today.'' implementation of the French 22 February 2010: Swedish Alzheimer’s Plan Alzheimer Association organises The French Alzheimer’s Plan was launched two information lecture and local years ago. At a review meeting, the president Alzheimer association chairman of the Association France Alzheimer, Arlette attracts media attention Meyrieux, represented people with dementia The Swedish Alzheimer Association and their families to the President of the (Alzheimerföreningen) together with the local Republic, Nicolas Sarkozy. Whilst the training association in Borlänge held a successful of caregivers by the Association had been lecture evening with more than 500 people implemented, she expressed her concern that, attending. Lecturers were given by professor two years on, families’ needs are not being met Arne Brun and PhD Sebastian Palmqvist as as they are not seeing the effect of the Plan in well as Swedish actor Sven Wollter. their everyday lives. In particular, delays in other measures (such as the monitoring of the Great media interest has been achieved by the health of caregivers and in the training of appointment of the new chairman in the local professionals in the care of Alzheimer’s Alzheimer association in Dalarnas län, disease) were resulting in a lost opportunity to Borlänge. Mattias Karlsson, who is only 28 improve the lives of people with dementia and years old, has been their carers. interviewed on the radio Ms Meyrieux called for regional committees to and newspapers as it is monitor the implementation of the Alzheimer unusual to have such a Plan. young person in this position. Mattias’ father was 11 February 2010: Britt Ekland diagnosed with Alzheimer’s supports the re-launch of the disease two years ago, Alzheimer’s Society “Old Jewellery aged 52 and this has Appeal” motivated Mattias into The Alzheimer’s Society has re-launched it’s action. Information can be found on his blog: appeal for people to donate old jewellery to the Mattias Karlsson [email protected] and organisation. The Society has run this appeal also on facebook: the last 18 years with the help of London jeweller Nicolas Mullings, who is also an Alzheimerföreningen i Dalarnas län where the Ambassador for the Society. The jewellery is local organisation has a page. collected then turned into funds for the Society. The actress Britt Ekland, who is an Alzheimer’s Society Patron and whose mother had

Page 5 of 12 Newsletter: February 2010

The research was carried out on over 50 Science Watch people and published in the journal of Nutrition, Health and Aging. This section has a selection of the most recent published research on dementia, including 8 February 2010: Study examines research on the prevention, diagnosis, and the dietary pattern of people with treatment of the disease. questionable dementia 29 January 2010: Study examines A study on some 285 community dwelling the effect of magnesium on memory Chinese people aged 60 and over found that function in rats those people who had questionable dementia had lower intakes of vegetables, fruits and fluid A study suggests that learning abilities, working than those participants who were cognitively memory and short and long-term memory in normal. rats can be enhanced by increasing the level of brain magnesium. This increase was achieved The study was conducted by the Chinese using a newly developed magnesium University of Hong Kong and published in the compound, magnesium-L-threonate, MgT. journal of Nutrition, Health and Aging. The study was conducted by Dr Inna Slutsky, Tel Aviv University’s Sackler School of We provide full references to Medicine and colleagues and was published in articles on our website. Please visit the journal Neuron. the completely revised Alzheimer 29 January 2010: Clinical trial for Europe website on: potential dementia drug to www.alzheimer-europe.org commence Allon Therapeutics Inc. has announced that 8 February 2010: Study examines enrolment has begun for a human clinical trial effect of cannabinoids on of its drug davunetide. The trial, which follows Alzheimer’s disease successful human efficacy and safety Phase II A study on the effect of cannabinoids trials in people with amnestic mild cognitive (compounds present in Cannabis) on the impairment, will compare multi-dose safety, memory of genetically modified mice found that tolerability and pharmacokinetic profile in 10 mice treated with the cannabinoid HU210 participants. performed no better in memory tests than the 30 January 2010: Study identifies untreated mice. In addition, the researchers drugs which may help in the found that the HU210 treated mice had the detection of Alzheimer’s disease same plaque formation and density of neurons as the control group. A study has highlighted two drugs, (the benzimidazole derivatives lanzoprazole and The study was led by Dr Weihong Song with astemiozole) as potential positron emission researchers from the University of British tomography (PET) radiotracers in the early Columbia and Vancouver Coastal Health detection of Alzheimer’s disease. Research Institute and published in the journal Current Alzheimer Research. Further investigations have been called for. The study was published in the Journal of 9 February 2010: Study examines Alzheimer’s disease and carried out by the variable memory performance in researchers from the International Center for people with behavioural variant Biomedicine and the University of Chile, in fronto-temporal dementia collaboration with the Center for Bioinformatics An Australian study which investigated the of the Universidad de Talca. variability in memory performance in people 1 February 2010: Netherlands study with behavioural variant fronto-temporal examines level of dietary intake by dementia (bvFTD) found evidence for “an people with dementia in different underlying memory deficit in "real" or day care settings progressive behavioural variant fronto-temporal dementia (bvFTD) similar to Alzheimer disease, A study which compared dietary intake of older though the groups differed in orientation people with dementia receiving day care at scores, with patients with bvFTD being intact. regular day care facilities or at green care Exclusion solely based on impaired farms in the Netherlands suggests that intake neuropsychological memory performance can was higher in the green care farms. potentially lead to an under diagnosis of FTD.”

Page 6 of 12 Newsletter: February 2010

The study was led by Prof. John R. Hodges, Researchers examined the link between Prince of Wales Medical Research Institute, epsilon 4 and head injuries and found that Cnr Barker St and Easy St, Randwick, Sydney young people from the military who had and published in the journal Neurology. experienced head injuries and who carried this gene faired better in cognitive tests than those 10 February 2010: Potential who did not carry the gene. Alzheimer’s drug commences clinical trials The research was led by Duke Han, assistant professor of neuropsychology at Chicago’s Clinical trials have commenced of a lead Rush University, USA. compound, Posiphen, to treat people with the early stages of Alzheimer’s disease. The We provide full references to compound has been shown, in cell cultures of articles on our website. Please visit normal mice, transgenic mice with Alzheimer’s disease and Down Syndrome mice, to inhibit the completely revised Alzheimer the production of amyloid-b precursor protein, Europe website on: which has been linked to Alzheimer’s disease. www.alzheimer-europe.org The trial will measure in the cerebrospinal fluid (CSF) and blood plasma of amnestic mild 18 February 2010: Potential cognitively impaired (MCI) patients the diagnostic tool for Alzheimer’s biochemical changes that are associated with disease developed AD and correlate them with the pharmacokinetics of the drug and its A new method which enables a calculation of metabolites. the volume of the hippocampus to be made has been developed by using MR images. In the 11 February 2010: Study examines diagnosis of Alzheimer’s disease the the relationship between vision and measurement of the hippocampus can be dementia useful as it can be one of the first areas to show the loss of brain cells. The new A study, which examined the extent to which calculation is quick (3 minutes), accurate and poor vision and treatment for visual disorders automatic and therefore could be beneficial in affect cognitive decline, found that “untreated offering a way to diagnosis Alzheimer’s disease poor vision is associated with cognitive decline, which currently can be lengthy and not always particularly Alzheimer’s disease.” The research reliable. Further tests are being carried out on was conducted on over 600 elderly US its operational reliability. participants with normal cognition at baseline. The development of this tool is part of the EU The study was carried out by the University of funded research project, Predict AD, which Michigan, USA and published in the American “aims to develop a standardised and objective Journal of Epidemiology. solution that would enable an earlier diagnosis 14 February 2010: Study on the of Alzheimer’s disease, improved monitoring of brains of people with fronto- treatment efficacy and enhanced cost-effective temporal dementia identified gene diagnostic protocols.” Organisations involved mutation associated with an with the development are VT Technical increased risk of the disease Research Centre (Finland), GE Healthcare (Sweden), Imperial College London (UK), A study found that a specific gene was University of Eastern Finland (Finland) and increased with an increased risk of fronto- Righospitalet Copenhagen (Denmark). temporal dementia (FTD). Gene mutations were found on chromosome 7 on the brains of 24 February 2010: Drug used for people with FTD. Some individuals with FTD immune system treatment may have also have another mutation known as GRN and potential as a treatment for researchers believe that the newly identified Alzheimer’s disease gene accelerates the harm caused by GRN A study has found that the brains of mice which mutation, making the disease progress faster. modelled Alzheimer’s disease had fewer 16 February 2010: Study examines lesions after the mice had received the drug gene associated with Alzheimer’s Rapamycin. The mice also exhibited fewer disease and cognitive function in learning and memory deficits than at the start younger people of the study. The drug Rapamycin has been used to help stop the immune system from Epsilon 4 is a variant of the gene apolipoprotein attacking transplanted organs. E (APOE), the presence of which is considered a risk factor for Alzheimer’s disease.

Page 7 of 12 Newsletter: February 2010

The study was led by Salvatore Oddo, 15 February 2010: Actor Simon assistant professor in the Department of Callow talks about Alzheimer’s Physiology of the UT Health Science Center disease and raises awareness of the San Antonio and published in the Journal of need for research Biological Chemistry. 29 February 2010: Study examines Actor Simon incidence rates of dementia in people Callow has aged 90 and older spoken movingly about his A study on 350 people which examined experience of his incidence rates of dementia in people aged 90 mother having years and older (including estimates for Alzheimer’s centenarians) has found that “incidence of all- Simon Callow disease and also cause dementia is very high in people aged 90 his friend, play years and older and continues to increase agent, Peggy Ramsay. In the newspaper article exponentially with age in both men and he reflects on the events which led to his women.” mother being diagnosed with Alzheimer’s disease and also of his reaction to his mother’s The study, conducted by Maria Corrada and behaviour, saying “One watches. One waits. colleagues from the University of California, One tries to be there for her. And one peers USA, was published in the journal Annals of into one’s own future, and trembles.” Neurology. He also explained “It is unclear whether she Dementia in Society still knows who I am. She says less and less to me, concentrating on running her tongue Articles here include coverage of dementia in around her lips, an exploration that never loses the media, for example on television and in its fascination. The other day, experimentally, I films. said to her: “Do you ever see Simon?” To my astonishment, she replied immediately: “Yes. I 1 February 2010: Sir Terry Pratchett saw him twice. But he wasn’t coming to see gives Dimbley lecture on assisted me, he came to see that the others were all suicide right.” “Did you mind?” “No, he had to do what “Shaking hands with death” was the title of the he did.” “How was he?” “Tired. He works very lecture author, Sir Terry Pratchett, gave at the hard. But he was well.” 2010 Dimbleby lecture. He called for an Mr Callow also explained the particular concern assisted suicide tribunal to be set up whereby the symptoms associated with dementia have people could apply for permission to end their for actors “For those of us who get by on our lives at a time of their own choosing. He said wits — writing, learning, framing opinions, the tribunal would “act for the good of society expressing experience — this is an as well as that of the applicant … and ensure unspeakable horror. “O! let me not be mad, not they are of sound and informed mind, firm in mad, sweet heaven.” Acting, contrary to their purpose, suffering from a life threatening popular belief, is all about thinking. If the brain and incurable disease, and not under the fails us even a little — a forgotten line, a influence of a third party.” missed cue — we go into a funk. And to watch Of the medical profession he said “It seems these bright, forceful, intelligent women sensible to me that we should look to the clouded over and mentally expunged by this medical profession, that over the centuries has malign spell has been nearly unendurable. But helped us to live longer and healthier lives, to of course it affects everyone: one in 14 people help us die peacefully among our loved ones in over 65, one in five over 80.” our own home without a long stay in God’s At the end of his article Mr Callow talks about waiting room … We should aim for a good and the importance of research and in particular of rich life well lived and, at the end of it, in the the Edinburgh-based project: “The comfort of our own home, in the company of Disconnected Mind” which traces mental those who love us, have a death worth dying development and cognitive abilities, by for.” retesting people whose IQ tests were recorded Sir Pratchett, who has fronto-temporal in 1947 (when the participants were 11 years- dementia, explained, “if I knew that I could die old). The project also factors in social at any time I wanted, then suddenly everyday background and diet. would be as precious as a million pounds. If I knew that I could die, I would live.”

Page 8 of 12 Newsletter: February 2010

22 February 2010: Study investigates public stigma relating to New resources and Alzheimer’s disease publications A study conducted in São Paulo, , on 500 individuals measured stigma by interviewing By reporting on recently published books, participants to assess three dimensions of reports and information videos on dementia we stigma: stereotypes, prejudice and hope to offer updates on the current resources discrimination. The researchers found that available to anyone who is affected by “dimensions of stigma were highly prevalent in dementia. relation to Alzheimer’s disease” and called for 31 January 2010: New book interventions to overcome the negative effects published on the facts of dementia associated with stigma. “Fast Facts: Dementia”, by Lawrence J Whalley The study was carried out by Sergio Blay and and John CS Breitner has been published by Erica Peluso and published in the American Health Press. Chapters are included on: Journal of Geriatric Psychiatry. • Basic neuroscience 25 February 2010: Awards given for • The aging brain medical research in Alzheimer’s disease • Symptoms, signs and course Recognition of new approaches to Alzheimer’s • Neuropsychiatric complications research was given to four researchers who • Clinical examination and received MetLife Foundation Awards for investigations Medical Research into Alzheimer’s disease. • Principles of care and treatment Awards were given to Todd E. Golde, professor of neuroscience at the University of Florida and • Pharmacological treatment Edward H. Koo, professor of neuroscience at • Epidemiology of the dementing the University of California who identified the illnesses “gamma-secretase modulators that decrease • Hypotheses on the causes of production of the highly toxic 42 amino acid Alzheimer’s disease form of ABeta and also to Eckhard Mandelkow, director of the Max-Planck-Institute for • Future treatments. Molecular Biology in Hamburg, Germany and Fast Facts (ISBN 9781903734179) costs GBP Eva-Maria Mandelkow, principal investigator of 10 or EUR 15. the Max-Planck Institute, who have been “seeking therapies through analysis of the 1 February 2010: Hints for carers pathological folding of tau protein.” book published “10 Helpful Hints for Carers – Practical solutions for carers living with people with dementia” provides practical solutions, ideas and practical information for carers. The book contains advice on: • Relaxing environments • Aggression • Agitation and/or anxiety • Depression • Hallucination • Sleeplessness • Wandering and • Organisations that can help. The book costs GBP 7.50 and is published by the Dementia Services Development Centre, the University of Leeds and the University of Stirling.

Page 9 of 12 Newsletter: February 2010

1 February 2010: Short video about • Recognition at EU level of the dementia available on you tube fundamental human rights of people with dementia A sensitive short video (9 minutes) which shows a day in the life of a grandmother, who • The use of the European Pact for has dementia, has been released on you tube. Mental Health and Well-being as a It conveys the feelings of confusion, anxiety tool for awareness raising and and distress experienced by the grandmother exchange of good practice for as she tries to prepare a meal for her Alzheimer’s disease and other granddaughter. It also highlights the concern dementias and upset which the family feel. • Implementation of the European Council conclusions to develop quality The video was produced by Vinn Bay and Tee frameworks for medical and care Boon Leng for a video competition as part of services for people with dementia the Alzheimer’s Disease International conference 2009. • The need for a Communication to call upon Member States to present 1 February 2010: Specialised National Action Plans furniture designed to help people • The promotion of awareness and with dementia understanding of dementia by the EU A specialised range of bedroom and lounge • A continuation of EU cross-cutting and furniture has been designed to “aid residents interdisciplinary research. with dementia in their daily activities”. The range includes specific design features on: 8 February 2010: EU Commissioner for health and consumer policy • Drawers - Scooped fronts to enable launches webpage easy viewing of contents John Dalli, the new EU Commissioner for • Wardrobes – motion sensor lighting to health and consumer policy has launched his illuminate objects webpage which includes information on his • Lounge furniture –1950s style to mandate, team, background as well as news create a reminiscent environment for bulletins. current residents. 18 February 2010: European The Dementia Range has been developed by Patients’ Forum launches new the company, YTM Furniture, who are based in website West Yorkshire, UK and who have supplied the care sector for nearly 30 years. The European Patients Forum (EPF) has 3 February 2010: UK paper considers launched its redesigned variations in approach to dementia website (www.eu- diagnosis, care and policy across the patient.eu) to offer a rich EU source of information for patient and patient organisations within Europe. A policy brief entitled “A problem shared is a Improvements have been made on the problem halved? Dementia: Learning navigational tools to provide easier accessibility opportunities from Europe” has been published for users with disabilities. by the International Longevity Centre – UK (ILC-UK), written one of their Senior 28 February 2010: Leaflet launched Researchers, Sally-Marie Bamford. to help improve dementia care in The brief considers dementia in terms of: hospitals • The EU context and the emerging role A booklet entitled “This is me” is designed to the EU institutions give medical staff information about each patient admitted to hospital. It has been • How the efficacy of policy compiled by the Alzheimer’s Society with the interventions of Member States is Royal College of Nursing. Basic details are assessed covered such as the patient’s name, address, • The reconciliation by policy-makers of contact, hobbies, things that worry the patient, requirements and funding. their eye sight and hearing capabilities, and mobility and sleep patterns. The author highlights the following priorities for action: The publication follows a report in November 2009 which highlighted that people with dementia spend longer in hospital than other

Page 10 of 12 Newsletter: February 2010

admitted for similar reasons and people with th dementia leave hospital in a worse condition Call for abstracts for 20 AE than when they arrived. Conference in Luxembourg

TV presenter Angela is now open Rippon highlighted the Please us the possibility of submitting your problem her mother abstract via the Alzheimer Europe website on: (who lived with www.alzheimer-europe.org/conferences dementia) had in hospital in that she would often be rude or aggressive to nurses. This made the nurses

Angela Rippon distressed. Ms Rippon said “The trouble is that student nurses don’t get any training in dealing with dementia specifically. Most of them haven’t had any experience of it and don’t recognise it, let alone know how to deal with it.”

Contact Alzheimer Europe at:

Alzheimer Europe, 145 route de Thionville, L-2611, Luxembourg (www.alzheimer-europe.org) We welcome abstracts for the following subjects: Jean Georges, Executive Director People with dementia and their carers ([email protected]) • Education and training of people with Dianne Gove, Information Officer dementia and their carers ([email protected]) • Relationships and sexuality Annette Dumas, EU Public Affairs Officer New technologies in the home ([email protected]) • • Proxy decision making - Giving a voice to Julie Fraser, Communication Officer people with dementia ([email protected]) Professional carers Gwladys Guillory-Hickey, Administrative Assistant ([email protected]) • Innovative care services Grazia Tomasini, Administrative Assistant • Avoiding neglect, coercive measures and abuse ([email protected]) • Caring professions and their training

• New technologies for the caring Alzheimer Europe Board professions Chairperson: Maurice O’Connell (Ireland) Medical professionals and researchers Vice-Chairperson: Sabine Henry (Belgium) • Involving people with dementia and their Honorary Secretary: Sigurd Sparr (Norway) carers in research Honorary Treasurer: Heike von Lützau-Hohlbein • Communicating research results and (Germany) managing expectations Members: • Disclosing a diagnosis to people with Iva Holmerová (Czech Republic) dementia and their carers Neil Hunt (United Kingdom) • Dementia research made easy Pekka Laine (Finland) Policy makers Patrick Maugard (France) • Successful campaigning Alicja Sadowska (Poland) • National dementia strategies Charles Scerri (Malta) • Financing care and dementia research Marc Schaefer (Luxembourg) • Policies supporting people with dementia Maria do Rósario Zincke dos Reis (Portugal) and their carers

Page 11 of 12 Newsletter: February 2010

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

Date Meeting AE Representative 1 March 2010 AE Staff Meeting (Luxembourg, Luxembourg) AE Staff COFACE meeting onf the wellbeing of families in Europe, today and 2 March 2010 Annette tomorrow (Brussels, Belgium) Eurofound seminar on the campany strategy in Europe: flexibility and social 3 March 2010 Annette dialogue (Brussels, Belgium) AE Working group on the ethical aspects of assistive technologies 8 March 2010 Dianne, Jean (Brussels, Belgium) Steering Committee of the European Dementia Ethics Network (Brussels, 9 March 2010 Dianne, Jean Belgium) 10–12 March 2010 ADI Conference (Thessalonica, Greece) Jean 19 March 2010 GSK Health Advisory Board (London, United Kingdom) Jean 31 March 2010 Meeting with International Longevity Centre (Brussels, Belgium) Annette Future Conferences

Date Meeting Place 10 March 2010 25th International Conference of Alzheimer’s Disease, www.adi2010.org Thessaloniki, Greece 11th International Geneva/Springfield Symposium on Advances in 24-27 March 2010 Geneva, Switzerland Alzheimer Therapy, www.internationalspringfieldsymposium.com American Academy of Neurology  62nd Annual Meeting, 10-17 April 2010 Toronto, Canada http://www.aan.com/am 25ème Colloque Médecine et recherche sur la maladie d’Alzheimer de la 26 April 2010 Paris, France Fondation Ipsen 6-8 May 2010 People Policy Partnerships, www.alzheimers.org.nz Wellington, New Zealand 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 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 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 10th Congress of European society for clinical neuro-pharmacology, 21-23 October 2010 Zagreb, Croatia [email protected]

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.

Page 12 of 12

NEWSLETTER March 2010

I am delighted to report that Highlights in this Editorial Alojz Peterle, MEP issue (Slovenia) has joined the This month European Alzheimer’s we organised 4 March 2010: Phase III Alliance, which brings the trial of Dimebon fails to 11 the first total number of MEPs show significant effects meeting of supporting our cause to 43. 8 March 2010: Working the working group on ethical group on the This month we report on the implications of assistive 2 ethical recognition that two of our technologies meets for implications of assistive member associations have first time technologies for people with received for their work: dementia which was 12 March 2010: AE Cyprus for their photographs Members Cyprus and the 8 organised within the of people with dementia and Netherlands win awards framework of the European the Netherlands for their Dementia Ethics Network. part in the development of 30 March 2010: UK We briefly report on the truly an intervention programme government publishes 6 interesting discussions white paper on care for carers. We also carry between the invited experts news from our associations and I look forward to our in Belgium, England, continued collaboration, Germany, Greece, Italy and which will enable us to Scotland. produce a set of guidelines

on assistive technology later In our science watch section this year. you will, as always, find information on some of the With the conference section latest research in the areas of the website now fully of diagnosis and treatment operational, the call for The news that the phase III abstracts is now open. I clinical trial of Dimebon was hope that you will be able to not able to reproduce the send in abstracts on your positive results of an earlier latest activities, projects and trial is of course particularly Table of contents research and to share these disappointing, as people Editorial...... 1 with the other conference with Alzheimer’s disease delegates. I invite you to and their carers are waiting European Alzheimer’s Alliance ...... 2 take advantage of the for new treatments. Alzheimer Europe ...... 2 reduced price for early bird In this issue we are also Alzheimer Europe Networking ...... 4 registration (before 31 July 2010). able to report on the European developments...... 4 encouraging news that Policy Watch...... 5 We have also been busy various personalities have preparing issue 5 of the Members’ News...... 7 spoken out about their Dementia in Europe personal experience of Science Watch ...... 10 magazine, which will be having a relative with Dementia in Society ...... 13 available at the end of April. dementia and the In Memoriam - Tuula Pirttilä (1958-2010) We are also in the process challenges which this ...... 15 of organising our brings. New resources and publications ..... 15 forthcoming lunch debate in the European Parliament Jean Georges AE Calendar ...... 17 and are looking forward to Executive Director Future Conferences...... 17 receiving an update on the Joint Programming Initiative on Alzheimer’s disease.

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European Luxembourg: Alzheimer’s Alliance Lulling Astrid (EPP) Netherlands: In March, Alojz Peterle, MEP (Slovenia) joined De Lange Esther (EPP), van Nistelrooij Lambert the European Alzheimer’s Alliance. The (EPP), Wortmann-Kool Corien (EPP) European Alzheimer's Portugal: Alliance currently has 43 Members from 16 Coelho Carlos (EPP) Member States of the European Union and 6 of Slovenia: the seven political groups Peterle Alojz (EPP) in the European Parliament. Slovakia: Mikolasik Miroslav (EPP), Zaborska Anna (EPP) Peterle Alojz The members of the Slovenia, EPP European Alzheimer’s United Kingdom: Alliance are the following: Hall Fiona (ALDE), McAvan Linda (S&D), Moraes Belgium: Claude (S&D), Simpson Brian (S&D), Watson Graham (ALDE), Willmott Glenis (S&D) Brepoels Frieda (Greens/EFA), Ries Frédérique (ALDE), Staes Bart (Greens/EFA), Sterckx Dirk (ALDE) Alzheimer Europe Cyprus: 8 March 2010: Alzheimer Europe Triantaphyllides Kyriacos (GUE-NGL) organises the first meeting of the working group on assistive Czech Republic: technology for people with dementia Cabrnoch Milan (ECR), Kohlicek Jaromir Within the framework of the European (GUE/NGL), Roithova Zuzana (EPP) Dementia Ethics Network, Alzheimer Europe Denmark: organised, and participated in, the working group on the ethical issues linked to the use of Schaldemose Christel (S&D) assistive technologies (AT). The working group Finland: discussed progress with the literature review and plans for producing a set of guidelines on Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli the ethical issues related to AT for people with (ALDE), Pietikäinen Sirpa (EPP) dementia (which will be published in December France : 2010). Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Two areas were discussed: Griesbeck Nathalie (ALDE), Grossetête Françoise 1. Ethical issues, concerns and benefits linked (EPP), Morin-Chartier Elisabeth (EPP) to the use of AT. The discussion included Germany: three presentations: Niebler Angelika (EPP), Roth-Behrendt Dagmar • The perspective of people with (S&D), Ulmer Thomas (EPP), Weisgerber Anja (EPP) dementia by James McKillop (who has dementia) Greece: • The perspective of carers by Heike Koppa Maria Eleni (S&D), Kratsa-Tsagaropoulou von Lützau Hohlbein (Chairperson of Rodi (EPP) the German Alzheimer Association – Ireland: Alzheimer Gesellschaft) Aylward Liam (ALDE), Childers Nessa (S&D); • The perspective of healthcare Crowley Brian (ALDE), McGuiness Mairead (EPP), professionals by Sirkkaliisa Heimonen Mitchell Gay (EPP) (Senior Researcher at the Age Institute, Helsinki, Finland) Italy: 2. Legal, practical and economic issues related Panzeri Pier Antonio (S&D), Toia Patrizia (S&D) to the ethical use of AT. This also included three presentations:

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• AT and civil liberties/ethico-legal Call for abstracts for 20th AE issues by Stefania Kapronczay (Head of the Patients Rights Program, Conference in Luxembourg Hungarian Civil Liberties Union, Hungary) is now open • Conflict between ethics and the There is now the possibility of submitting your cultural, social and financial context by abstract via the Alzheimer Europe website on: Luiza Spiru (Head of the memory www.alzheimer-europe.org/conferences clinic – Elias University Hospital, Bucharest • How can AT positively contribute towards respect of ethical principles (freedom, dignity and respect for autonomy) by Alistair Niemeijer (PhD student, VU University Medical Center, Amsterdam, the Netherlands). 23 March 2010: Call for abstracts and registration facility launched for the 20th Alzheimer Europe Conference in Luxembourg Alzheimer Europe has launched the conference section of the website (www.alzheimer- europe.org/EN/Conferences/Luxembourg- 2010) which includes the following information on the 20th Alzheimer Europe Conference: • Programme overview – details of the three day event (30 September – 2 October). We welcome abstracts for the following subjects: • Confirmed speakers - Del Signore Susanna, CNS & Internal Medicine People with dementia and their carers Group Leader, European Medicines • Education and training of people with Agency (United Kingdom), Georges dementia and their carers Jean, Executive Director, Alzheimer • Relationships and sexuality Europe (Luxembourg), Holmerová Iva, • New technologies in the home Chairperson, Czech Alzheimer's • Proxy decision making – Giving a voice to Society (Czech Republic), Krecké people with dementia Jeannot, Minister of the Economy Professional carers (Luxembourg), von Lützau-Hohlbein • Innovative care services Heike, Chairperson, Deutsche • Avoiding neglect, coercive measures and Alzheimer Gesellschaft (Germany), abuse McGettrick Gráinne, Policy and • Caring professions and their training research Officer, Alzheimer Society of • New technologies for the caring Ireland (Ireland) and Winblad Bengt, professions Director, Karolinska Institute Medical professionals and researchers Alzheimer Disease Research Center • Involving people with dementia and their (Sweden). carers in research • Call for abstracts – a full list of topics • Communicating research results and for people with dementia and their managing expectations carers, professional carers, medical • Disclosing a diagnosis to people with professionals and researchers as well dementia and their carers as policy makers are given on the • Dementia research made easy website as well as the closing date for Policy makers submission (30 June 2010). • Successful campaigning • Registration – the facility to register • National dementia strategies online is now available, as well as • Financing care and dementia research details of the reduced early bird • Policies supporting people with dementia registration fees (available until 31 and their carers. July 2010).

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Alzheimer Europe Networking On 2 March (Brussels, Belgium) Annette attended the Family Platform Info Day in the European Parliament (EP). On 3 March (Brussels, Belgium) Annette attended the Eurofound-EP seminar on “Company strategies in Europe: Flexibility and social dialogue”. On 8 March (Brussels, Belgium) Jean, Dianne and Annette attended the Alzheimer Europe working group meeting on the ethical implications of assistive technologies. On 9 March /Brussels, Belgium) Jean, Dianne and Annette attended the meeting of the Steering Committee of the European Dementia Ethics Networks. From 10 to 12 March (Thessaloniki, Greece) Pekka Lane and Jean participated in the Alzheimer’s Disease International Conference and gave an overview of the development of AE’s strategy and campaign to make dementia a European priority. On 10, 17 22, 26 and 29 March (Luxembourg, Luxembourg) Julie met with Jean-Paul Reuland from Binsfeld Publishers to discuss issue 5 of the Dementia in Europe magazine On 16 March (Brussel, Belgium) Annette met Eric Cheynis (post-graduate student) to discuss lobbying. On 23 March (Geneva, Switzerland) Jean gave a presentation on the activities of Alzheimer Europe at a Novartis meeting. On 31 March (Brussels, Belgium) Annette met Sally Bamford (International Longevity Centre) and Christine Marking.

Depressive disorders are most common, European making up nearly one third of all mental health problems. According to this study, only CVD developments contributes more to the burden of illness in Here we report on developments from the Europe. European institutions which may have an Although the information is essential to develop impact on people with dementia and/or their EU policies and preventative strategies, there carers. has been little work to synthesise the 19 March 2010: Report on Health in information gathered in the epidemiological studies on the prevalence of mental disorders Europe. Trends and analysis in the EU. There is little tradition in most EU The health research group of the Observatory countries, unlike the United States, of national on the Social Situation (funded by the epidemiological studies. Nor is there any European Commission) has produced a report standardization of approaches used in the on Health in Europe. This report is available in conduct of such studies, whether carried out at the form of a joint publication with the World national or regional levels across Europe. Health Organisation (WHO). In its conclusions, the report stresses that It investigates differences in health status population ageing presents particular policy within and between European countries. It challenges associated with reducing the discusses the relationship between living dependency ratio by increasing fertility rates, in conditions, socio-economic factors and health addition to presenting new health challenges with the objective of stimulating a debate and such as Alzheimer’s disease and dementia. policy action for creating a healthier and more equitable society. The report is now available in 24 March 2010: Review of EU the form of a joint publication with the WHO. working time rules The publication reports that mental health The European Commission has launched a problems have been estimated to account for consultation to ask the European social approximately 20% of the total burden of ill partners whether any action is needed at EU health across Europe. It also found that, in level on the Working Time Directive Finland and Sweden, the most prevalent cause (2003/88/EC) and what scope it should take. of death after CVD was Alzheimer’s disease This represents the first step towards a and other dementia. comprehensive review of the Directive. Other findings state that one in four people Since the Council and EP could not reach an experience a significant episode of mental agreement on the 2004 proposal, other issues illness during their lifetime. Four of the six have been added to the debate, reflecting leading causes of years lived with disability are fundamental changes in the world of work over attributable to mental health problems. the past twenty years. The Commission is thus

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planning a comprehensive review of the • A lack of prioritisation and commitment existing working time rules, starting with a to implementing the NDS was apparent thorough evaluation of the current provisions among many PCTs, as only 70 PCTs and issues in their application, before responded, giving a response rate of considering the different options to address just 46%. these issues. The review will be shaped by a • Two thirds of PCTs that did respond set of policy objectives, including protecting were unable to show where their workers' health and safety, improving balance allocation of dementia strategy funding between work and private life, giving had been spent, with half of these businesses and workers flexibility without stating that they could not separate this adding unnecessary administrative burdens for money from other funding. Submissions enterprises, especially SMEs. from stakeholders also pointed to The social partners have six weeks to make uncertainty as to whether Strategy their views known to the Commission. In funding has been allocated. parallel to the consultations, the Commission • More positively, most responding PCTs will carry out an extensive impact assessment. had in operation or were developing joint dementia strategies between Policy Watch themselves and Local Authorities. However, it is clear much more needs In this section you can find articles on various to be done. national policies and initiatives which can have an impact on issues surrounding dementia. Recommendations include: 10 March 2010: UK government • PCTs should account for the full considers how to fund elderly care allocation of their 2010/11 dementia service strategy funding. • PCTs must prioritise developing joint The UK Health Secretary, Andy Burnham, has commissioning strategies with local said that the government are considering three authorities for dementia as a matter of options to pay for a new national care service urgency and have clear systems to and that a white paper would be published on monitor their implementation. These this subject during March. Mr Burnham strategies should be publicly available. explained that he wants a “comprehensive, compulsory” social scheme which would take • PCTs should ensure they prioritise one of three forms: investment in all relevant aspects of the dementia strategy, especially those 1. People could decide to defer objectives identified as in need of retirement to 68 and use their pension urgent attention. contributions for three years to pay for a care fund. We provide full references to 2. People could pay in instalments in the articles on our website. Please visit run-up to retiring at 65. the completely revised Alzheimer 3. An estate levy (which would not be a Europe website on: flat fee, but a progressive levy) could www.alzheimer-europe.org be deducted from the property of older people when they die. 23 March 2010: Pilot scheme of 18 March 2010: UK Parliamentary tracking devices for people with Group reviews the progress made dementia to be expanded in the UK regarding the funding of the National Following trials where people with dementia Dementia Strategy were given GPS tracking devices, Ed Argar, The All-Party Parliamentary Group (APPG) on the cabinet member for adult and community Dementia published its inquiry into the funding services at Westminster (London), has of the National Dementia Strategy (NDS). The announced that these devices would be made report focuses on whether and how Primary available to every resident in the early stages Care Trusts (PCTs) in England have allocated of dementia who request it. He explained: “It’s their proportion of the GBP 150m NDS funding a very exciting opportunity to harness new to improving dementia care, and whether PCTs technology to improve the lives of people with had developed joint dementia care strategies dementia. It will allow them to live with local authorities. independently for longer, giving freedom but also peace of mind. It also gives relatives and The APPG found: friends peace of mind.”

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Westminster Council hopes that by using these the National Care Service, focusing on devices that the need to prevent people with the systems and business processes dementia from wandering by using physical that need to be put in place to make the restraint and/or drugs will no longer be present. National Care Service a reality. 30 March 2010: UK government • Introduce a National Care Service Bill to publishes white paper on care set the legal foundations of the National Care Service. Following a consultation process which • Enshrine in law for the first time included the views from over 68,000 people nationally consistent eligibility criteria (members of the public, carers and for social care helping to remove the representative organisations), the UK Health postcode lottery of care that exists now. Secretary, Andy Burnham presented the government’s plans for a National Care • Push forward with the prevention Service in England in the white paper “Building agenda and continue the drive towards the national care service”. He called it the personal budgets so that by 2012 “biggest change to the welfare state since everyone who would benefit from a 1948”. He explained that “'We’re not replacing personal budget will have one. the millions of carers or families who look after • Ensure accurate, relevant and each other. They are the underlying principle of accessible information about what the National Care Service and we will better people are entitled to, how the support them… there will be 1.7 million more assessment process works and how to people needing care in the next 20 years – we access care services is provided to must radically overhaul the way care is paid for everyone. and provided.” • Improvement of the gateway for Highlighting the challenge of planning for future accessing social care and disability care Mr Burnham said, “No one has any way of benefits to make simpler and easier for knowing how much care and support they may people. need in the future. A 65-year-old can expect to • Introduce a quality framework including need care costing on a body to drive up quality in social care. average £30,000 during retirement. However, Stage Three some people, for example • The introduction of a comprehensive people with severe National Care Service that is free when dementia, could end up they need it for all adults with an eligible needing care costing as care need, funded by contributions. much as £200,000”. • The founding principles of the National The proposal for the new system has three Care Service were said to: stages: • Be universal – supporting all adults with Stage One care and support needs within a framework of national entitlements. • Build on the best of the current system through reforms that are already • Be free at the point of use – based on underway and deliver the Personal need, rather than the ability to pay. Care at Home Bill. • Work in partnership – with all the different organisations and people who Stage Two support individuals with care and • From 2014 extend the coverage of free support needs day-to-day. care so that people will receive free • Ensure choice and control – treating care if they need to stay in residential everyone with respect and dignity, care for more than two years. ,putting people in charge of their lives. • Set up a commission to support • Support family, carers and community consensus and advise the Government life – recognising the vital contribution on the fairest and most sustainable way families, carers and communities play in that people can make their contribution enabling people to realise their to a care system which is free when potential. they need it. • Be accessible – easy to understand, • Set up a National Care Service helping people make the right choices. Leadership Group of expert stakeholders who will advise Government on the implementation of

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we're absolutely delighted to have her on Members’ News board”. In this section we report on our members’ latest 5 March 2010: Local branch of initiatives and work. Alzheimer Scotland opens Dementia 1 March 2010: Alzheimer Scotland Resource Centre due to funding from publishes free booklet on self- BIG Lottery directed support Earlier this year GBP 50m Alzheimer Scotland has published a free Lottery funding was announced booklet, the aim of which is to raise awareness aimed at helping young people of self-directed support. “Taking charge – a and people with dementia and short guide to self-directed their carers in Scotland. Following a successful support for people with application from a branch of Alzheimer dementia and their carers” Scotland (Helensburgh), a new Dementia covers the basics of: Resource Centre opened in Helensburgh. The opening was attended by MSP Jackie Baillie, • how self-directed support works Provost William Petrie OBE and Henry Simmons, Chief Executive of Alzheimer • contracting with an agency or Scotland. voluntary organisation On the announcement of the GBP 50m lottery • employing your own personal funding, Henry Simmons, Chief Executive, assistant Alzheimer Scotland said: “This is absolutely • managing your own support and wonderful news. It clearly shows BIG Lottery funding. Scotland’s commitment to people with dementia and those who care for them. There It also looks at possible reasons for the low are around 73,000 people in Scotland with uptake of self-directed support by people with dementia and countless family and friends dementia and provides information on sources providing unpaid help and support. We believe of support and further reading. that no-one should have to go through dementia on their own. Investment such as this The booklet can be downloaded from the will go a long way towards making life better for Alzheimer Scotland website. everyone affected by the illness.” 3 March 2010: Model and presenter 10 March 2010: German Alzheimer Nell McAndrew calls for people to Association launches website for join her in charity run for the young people Alzheimer’s Society "Alzheimer's & You" is the name Model and presenter Nell McAndrew, whose given to the new website launched grandad, Sam, has Alzheimer’s disease will be by the German Alzheimer running to raise money which Association (Deutsche Alzheimer Gesellschaft will go to the Alzheimer’s e.V.), the aim of which is to inform young Society. She explained the people about Alzheimer’s disease and impact her granddad’s encourage them to get involved with people diagnosis had on the family, with dementia. Aside from information about “Our whole family have been devastated by the disease itself, there are specific tips and granddad's diagnosis so I'm delighted to be suggestions about how to make contact with able to give my support. The money raised will family members and neighbours who may have improve the lives of people with dementia and dementia. Users may also test their own their carers. I hope runners of all levels will join concentration and memory by taking the me on the run and raise vital funds”. interactive memory test. The site is aimed at The Alzheimer’s Society is the teachers and educators too and includes ideas nominated charity (second for classroom projects on dementia. year running) for the international healthcare Sabine Jansen, Executive Director of the company, Bupa. Director of Fundraising for the German Association said "We hope that young Alzheimer’s Society, Jo Swinhoe, said: “Thanks people find this initiative on dementia to Bupa, we were able to raise £1 million in interesting. There are so many people with 2009 to help fight dementia - this year we want dementia who enjoy contact with young people to do even better and Nell's support is a and we want to promote and encourage fantastic boost. She's an inspiration both as a dialogue.” runner and a tireless charity fundraiser and

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This website is part of the project “Alzheimer’s Nina Kotras, Executive Director of the Greek and You” aimed at increasing awareness of Association said, “This landmark event brought dementia amongst young people from 14 to 21 together professionals in dementia care, and has been promoted by the Federal Ministry medical professionals, researchers, family for Family Affairs, Senior Citizens, Women and carers, people with dementia, and national Youth since 2007. Within the framework of the Alzheimer associations for a truly project there has been a student competition, multidisciplinary conference. the website developed and a handbook on dementia for schools may be developed. “Based on the theme Dementia: Making a difference', the Conference organised by ADI in 12 March 2010: Alzheimer Nederland cooperation with the Greek Association of win award for their intervention Alzheimer’s Disease and Related Disorders, programme focused on the latest developments in medical treatments, non pharmacological interventions Trimbos, Geriant and Alzheimer Nederland and prevention, as well as sharing best practice were awarded the joint Alzheimer’s Disease in care. International (ADI)/Fondation Médéric Alzheimer award for the most promising “The Greek Association of Alzheimer Disease psychosocial intervention in 2010. This eMental welcomed all invitees at the historical city of Health intervention was designed for family Thessaloniki where they met new friends form caregivers and people with dementia and the Alzheimer community across the world. The called “mastery over dementia” with the aim of city of Thessaloniki was the ideal scenery, a preventing and/or reducing depression and the multicultural and cosmopolitan environment perceived burden of caregivers. It was where visitors from all over the world felt developed by the Netherlands Institute of comfortable and welcome. mental Health in collaboration “The Board of the Greek Association and with the Alzheimer’s Related Disorders, Professor Magda Tsolaki, Association. President of the Greek Federation of The intervention was built on Alzheimer’s Disease and Relative Disorders the principles of psycho-educational and all the staff and volunteers who joined their programmes, the cognitive-behaviour efforts for this prominent conference, would like management of disorders of behaviour, once again to thank all the delegates for their relaxation and personal development. Themes participation and of course ADI. We will addressed in the intervention include: continue our efforts to achieve a better quality of life for people with dementia.“ • How to manage behavioural problems 12 March 2010: Cyprus awarded • Receive help from others prizes for photographs depicting “an • Take time for yourself active life with dementia” • Think and feel Professional photographer, Andreas Philippides, from • Problems of communication and Cyprus, was awarded both problems of self-confidence 1st (USD 500) and 3rd prize (USD 200) for his entries in the Alzheimer Consisting of eight lessons and booster Disease International Photography sessions, participants are in contact with a Competition, entitled an “Active life with professional teacher who ensures participants dementia”. receive information and practical exercises and reviews exercises. The subject of the first photograph was Kieri Panayi, aged 77 and mother of three. Kieri has 10-13 March 2010: The Greek had Alzheimer’s disease Association of Alzheimer’s Disease for seven years and used and Related Disorders hosts to be a professional international conference musical accompanist and The Greek Association of music teacher. Together Alzheimer’s Disease and with her husband, who is Related Disorders hosted the also a musician, they find 25th International Conference they still enjoy music. of Alzheimer’s Disease The third prize went to the photograph of Sofia International (ADI) in Thessaloniki, 10-13 Zorlakki, aged 71, who has had Alzheimer’s March, 2010. disease for five years. Also a mother of three, Sofia used to be an executive Secretary at the

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Ministry of Labour. Now she takes care of her La Ligue Alzheimer offered three different three grandchildren. activities: Delighted by the result, • A presentation of the documentary ‘Le Antigoni Diakou, President Labyrinthe de l’Oubli’ (16 March). This of the Pancyprian movie gave a faithful account of what one Alzheimer Association, must cope with in their daily life with addressed the participants Alzheimer’s disease. It gave people a at the gala dinner, greater understanding, enabling thanking ADI for the opportunity to participate everyone to see the disease from in the competition. Ms Diakou she said that the another point of view. In addition, it competition had “enabled them to carry forward triggered questions and emotions, being our mutual cause of raising awareness and in an ideal starting point for a discussion. particular to help us fight stigma and bias for • An extraordinary session of our the disease.” Alzheimer Cafés was held (18 March). 15 March 2010: ‘Pilgrimage’ begins People were invited to sit down around a to raise awareness of Alzheimer’s table decorated with Easter eggs. They disease in Italy had the opportunity to talk about the disease in informal surroundings (see Two companions have set picture). off on a ‘pilgrimage for • A lecture entitled ‘Alzheimer’s disease: to Alzheimer’s disease’ in order to raise understand it and to get involved’ was awareness about the disease and also raise given by La Ligue Alzheimer’s funds for the Italian Alzheimer Association, Chairperson, Sabine Henry (19 March). (Federazione Alzheimer This was a particular highlight for la Ligue Italia). The 15,000 Alzheimer and this lecture aimed to help kilometre journey on a anyone concerned by the disease to see specially-designed how to become involved in helping. tandem, will take the companions from Monte 25 March 2010: Alzheimer Nederland Sant’Angelo, across Italy, organises public debates with the Vatican, Monaco, France, the Czech Members of Parliament and receives Republic, Austria, Hungary and Slovenia. grant of EUR 600,000 15-19 March 2010: La Ligue The Netherlands are preparing for national Alzheimer participates in the 2010 elections on 9 June. On 27 March, Alzheimer International Health Film Festival Nederland organised the first of two public ‘ImagéSanté’ debates with Members of the Dutch Parliament (MP) running for election. Five MPs spoke to La Ligue Alzheimer an audience of 400 volunteers about their plans took part in the 2010 in the next election and, after a vote, the MPs International Health Film Festival ‘ImagéSanté’. secured the trust of the volunteers. A second La Ligue Alzheimer was invited at the festival debate is scheduled at the end of May. within the framework of the festival activities aimed at elderly people. In order to ensure people with dementia and their carers are high on the priorities of newly- This festival’s ninth edition took place in Liège elected policy makers a group of volunteers is from the 15th of March until the 19th of March busy trying to influence the election plans of and was organised by Liège’s University five of the national political parties. Alzheimer Hospital Centre, the University of Liège, and ‘la Nederland, together with volunteers who are Province de Liège’. also members of the various parties, is helping The five-day festival was a to write and to defend amendments to parties’ big event. ImagéSanté’s plans. objective was to promote Alzheimer Nederland has also received training and information in (together with the Martha Flora Nursing the field of Health by any Homes) a grant of EUR 600,000 by a national audio-visual means and the festival included lottery fund for the development of the activities such as the projection of 250 films, “Alzheimer Experience”. This serious game is (amongst which about 100 were entered into a “an innovative and contemporary tool for competition), the live broadcast of surgical imaginary travelling through the disease, thus operations, conferences, workshops and round enabling one to empathise with the world of table conferences. people with dementia.”

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Professional game builders will develop this persons. The study was conducted by tool especially for: researchers from the Rush University Medical Centre, Chicago, USA and reported in the • family carers journal Archives of General Psychiatry. • volunteers 3 March 2010: Study examines • professionals and trainees relationship between amyloid • the general public. plaques and the impairment of protective cells Participants in the Alzheimer Experience: A study which investigated the relationship • learn the feeling of suffering from between the Amyloid-Beta (Aβ) protein dementia and living with dementia (associated with the formation of plaques) and • also get knowledge and information astrocyte’s cells (which repair, protect and about dementia transfer of energy) found that a build up of Aβ • experience ‘real life’ how to cope with impairs the functionality of the astrocyte cells. someone with dementia The researchers established that the build-up of Aβ infiltrates the astrocyte cells through a learn strategies to do this • “scavenger” receptor and that astrocytes could successfully. still function in the presence of Aβ if the The Alzheimer Experience will be accessible activation of the scavenger receptor could be via the Alzheimer Netherlands website. The impaired. platform on which the Alzheimer Experience is Researchers from the École Polytechnique developed will be suitable for translation. The Fédérale de Lausanne (EPFL) Laboratory of first version is expected in March 2011. Neuroenergetics and Cellular Dynamics in Lausanne, Switzerland carried out the study Science Watch which was published in the Journal of Neuroscience. This section has highlights of the most recent published research on dementia, including 3 March 2010: Study launched to research on the prevention, diagnosis, and examine how to identify dementia in treatment of the disease. deaf people 1 March 2010: USD 28 million A team of researchers from the University of awarded to research grants to Manchester, University College London (UCL), examine cognitive decline and the Royal Association for Deaf people have launched a study to investigate how to Over a period of 5 years, 17 research projects identify dementia in deaf people and to explore will benefit from the USD 28 million grant from how they might best cope with the Research Partnership in Cognitive Ageing. their condition. The projects are to “examine the neural and behavioural profiles of healthy cognitive aging Dr Susanne Sorensen, head of and explore interventions that may prevent, Research at the Alzheimer’s reduce or reverse cognitive decline in older Society (which is funding the people.” The partnership is supported by the project) said: “The fact that US National Institute of Health and the many deaf people struggle to get a diagnosis of McKnight Brain Research Foundation. dementia means that they’re unable to access treatment that could help relieve some of their We provide full references to symptoms and enable them to remain articles on our website. Please visit independent for longer. One million people will the completely revised Alzheimer develop dementia in the next 10 years. We must act now.” Europe website on: 4 March 2010: Study investigates the www.alzheimer-europe.org effect of repetitive anaesthesia on mice 2 March 2010: Study examines the relationship between purpose in life A study which investigated the effects of and risk of Alzheimer’s disease repetitive anaesthesia had on mice found that the repeated use of anaesthesia with A study over a 7 year period on more than 900 isoflurance, whilst safe for normal mice, participants has found that greater purpose in increased the risk of changes similar to those life is associated with a reduced risk of observed in the Alzheimer disease in mice with Alzheimer’s disease and mild cognitive impairment in community-dwelling older

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mutations of the amyloid precursor protein measured by the Alzheimer’s disease associated with Alzheimer’s disease. assessment scale – cognitive subscale (ADAS- cog) and global function as measured by the The research was conducted by Doctors Maria clinician’s interview-based impression of Ángeles Mena and Justo García de Yébenes, change-plus caregiver input (CIBIC+). from CIBERNED (Centro de Investigación Biomédica en Red de Enfermedades The trial is being sponsored by the companies Neurodegenerativas) and published in the Pfizer and Medivation. Journal of Alzheimer’s disease. 5 March 2010: PET scan confirms 4 March 2010: New form of prion pathological changes in the brain disease found following treatment with an Alzheimer’s drug Scientists have reported on a new form of prion disease in mice that resembles a form of By using positron emission tomography (PET), human Alzheimer’s disease. These results a study was able to “demonstrate for the first mirror findings from two newly reported human time the effect of an Alzheimer’s drug cases of the prion disease Gersstmann- (bapineuzumab) on pathological changes of the Straussler-Scheinker syndrome (GSS). disease in people living with the disease.” The Together the findings show that in prion results showed that bapineuzumab (an anti Aβ diseases, the plaque-associated damage to antibody), brought about measurable clinical blood vessels can occur without the sponge- improvement with brain amyloid load declines like damage to the brain. reaching statistical significance. Study author, Bruce Chesebro, Chief of the The study was conducted by Juha Rinne, Laboratory of Persistent Viral Diseases, University of Turku, Finland, and colleagues National Institute of Allergy and Infectious and published in the Lancet Neurology. Diseases (NIAID) said that this indicates that prion diseases can be divided into two groups: 5 March 2010: Study examines “those with plaques that destroy brain blood depression and risk of dementia in vessels and those without the plaques that lead adults with diabetes to the sponge-like damage to nerve cells”. A study conducted over a five-year The study was reported by the US Department period, has found that “adults who of Health and Human Services. have both diabetes and major depression are more than twice as 4 March 2010: Study suggests that likely to develop dementia, memantine treatment may result in compared to adults with diabetes only.” improvement of some symptoms of Grants from the National Institute of Mental Alzheimer’s disease Health, National Institutes of Health, supported Findings of a study on over 1 400 people in the study, which was conducted by Dr Wayne Greece suggest that most of the people with Katon, University of Washington and Alzheimer’s disease demonstrated significantly colleagues. It was published in the Journal of improved cognitive function and Internal Medicine. neuropsychiatric symptoms after six months of memantine treatment. 11 March 2010: Study develops diagnostic test for cognitive The study was presented by Dr Giailoglou, impairment Lunbeck Hellas, SA, Athens, Greece at the European Psychiatric Association (EPA) 18th In an effort to address the fact that most cases European Congress of Psychiatry. of Alzheimer’s disease are not diagnosed in the primary care setting, (resulting in lost 4 March 2010: Phase 3 trial of opportunities for treatment), researchers from Dimebon, a potential Alzheimer drug, the University of Tennessee, USA, have fails to show significant effects developed a computerised self test (CST). The CST is thought to be an effective and simple Six months through the phase 3 trial of the drug test to determine whether a person has mild “dimebon” in people with Alzheimer’s disease, cognitive impairment. The study suggests that the results have failed to show “any significant the test proved to be more effective and effect in two co-primary and several secondary accurate than existing tests. outcomes measures.” The study will be published in the Journal of The study split participants into three groups, Alzheimer’s Disease. two receiving 5 or 20mg dimebon three times a day respectively and the third group a placebo. The co-primary endpoints were: cognition as

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12 March 2010: Study of people with member clubs of the Scottish Football Heritage Alzheimer’s disease examines risk of Network. getting lost when driving Henry Simmons Chief Executive Alzheimer A study which looked at media Scotland commented: "This is a truly innovative stories (published between 1998 and imaginative project and Alzheimer and 2008) that involved people Scotland is extremely happy to have been with Alzheimer’s who were involved from its earliest stages. The Scottish reported missing found that 207 drivers with Football Museum has not only created a Alzheimer’s had gone missing whilst driving, marvellous tool for engaging with men with even though the majority had set off on a dementia, but also ensured that research was routine trip to the post office, store or relative’s carried out in the pilot, providing an impressive house. Of the 207 drivers, 32 had died, 35 body of evidence.” were found injured and another 70 were not 15 March 2010: Study examines found at the time that the data was analysed. family history of Alzheimer’s disease The study was conducted by Linda Hunt, and the associated risk for children associate professor in the School of Occupational Therapy, Pacific University, A study in which brain amyloid Oregon, USA and will be published in the plaques (associated with March/April issue of the American Journal of Alzheimer’s disease) were Occupational Therapy. highlighted has found a greater number of protein clumps among The Alzheimer's Association offers a web- healthy adult children of parents based program called "Comfort Zone" that with Alzheimer’s disease compared to adult families of Alzheimer's patients can use if the children with no family history of dementia. person can still drive safely in familiar places. Researchers also found that the numbers of The driver agrees to limit driving to a "comfort clumps were particularly striking among those zone," and a global positioning system (GPS) study volunteers whose mothers had been monitors driving. If the driver leaves the area, diagnosed with the disease. the family is notified in real time. The brain plaques could be highlighted by use 14 March 2010: Study suggests a of positron emission tomography (PET) and a freshwater polyp may be a useful fluorescent dye, Pittsburgh Compound B (PiB) research model for Alzheimer’s and the researchers hope that this technique disease will enable the identification of early markers of the disease, which in turn may result in the Researchers have found that genome development of approaches to delay or prevent sequence of the freshwater polyp, Hydra, has Alzheimer’s disease. about the same number of genes as humans and also has genes linked with the beta The research, led by Lisa Mosconi, research amyloid plaque formation found in Alzheimer’s assistant professor of psychiatry at NYU disease. This finding could result in Hydra Langone, USA, is published online in the early being a potential research model for edition of Proceedings of the National Academy Alzheimer’s disease. of Sciences. The research was carried out by an 15 March 2010: Study examines the international team of researchers and relationship between amyloid published in the journal Nature. plaques, connection impairment in certain brain regions and the display 14 March 2010: Study examines the of symptoms of Alzheimer’s disease relationship between football memorabilia and the memory of men A study has found that cognitively normal, with dementia healthy individuals who have brain amyloid plaques also have A study suggests that showing football the connections between memorabilia to men with important brain regions involved dementia may stimulate their in learning memory impaired (as memories. Over a period of 12 do people with Alzheimer’s disease), although months participants were shown they may not necessarily display the symptoms match photographs and of Alzheimer’s disease. programmes during discussions. The study was led by Dr Yvette Sheline, The research was carried out by Glasgow Professor of Pyschiatry and Radiology, Calendonian University with the Scottish Washington University, USA and published in Football Museum, Alzheimer Scotland and Biological Psychiatry.

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15 March 2010: Two studies Johnson&Johnson’s Janssen Alzheimer highlight the role the gene IDE plays Immunotherapy unit said that the trials are in influencing the risk of Alzheimer’s some of the “largest scale ever in Alzheimer’s disease disease” and that once they are complete they expect to have “a very comprehensive Two studies have found “strong evidence for understanding of the clinical impact of the role of the gene, insulin-degrading enzyme bapineuzumab.” (IDE), in influencing risk of Alzheimer’s disease.” Although it was already understood 23 March 2010: Study examines the that IDE appears to breakdown the build up of rate at which memory may decline the protein associated Alzheimer’s disease, A study in which over 1,000 people took amyloid beta (Aβ), the new studies suggest that memory and thinking skills tests found that “the it is the level of IDE present which is key. Too thinking skills of those with mild cognitive little IDE appears to promote the development impairment declined twice as fast each year as of Alzheimer’s disease, whereas an increased those who had no cognitive problems, whilst level appears to protect against it. the skills of those with Alzheimer’s disease The studies, (both of which included Dr Zou declined four times as fast as those with no and Dr Carrasquillo from the Mayo Clinic, USA) cognitive problems”. appear in the journals Neurology and PLoS The research entailed participants having ONE respectively. memory and thinking skills tests at the start of We provide full references to the study and again every three years. People took part in the study for an average of 5.5 articles on our website. Please visit years, and up to 11 years. the completely revised Alzheimer It was carried out by Robert S Wilson, Rush Europe website on: University Medial Center, Chicago and www.alzheimer-europe.org colleagues, and published in the medical journal of the American Academy of Neurology. 16 March 2010: New molecule 29 March 2010: Rat created which designed which may prevent and emulates Alzheimer’s disease break down toxic protein associated with Alzheimer’s disease Researchers have genetically manipulated rats that can emulate Alzheimer’s “Affibody” is a small protein which disease in humans. Mice has been developed by scientists in have been developed in the Sweden. A new test-tube study past, but as it is considered suggests that this protein prevented that rats are more intelligent the Aβ protein forming clumps as well as than other rodents and that their behaviour is reversing the process. In an additional study, predictable, researchers believe they can now the researchers crossed fruit flies, which had study the evolution of learning and memory been genetically engineered to produce the Aβ deficits. protein, with fruit flies which had been genetically engineered to produce Affibody and McGill University (Canada) researchers carried found that their offspring did not develop the out the study, which was published in the symptoms of Alzheimer’s disease. Journal of Alzheimer’s disease. Lead by Dr Leila Luheshi, Department of Genetics, University of Cambridge and Dementia in Society Professor Torleif Härd of the Swedish Articles here include coverage of dementia in University of Agricultural Sciences, the the media, for example on television and in research has been published in PLoS Biology. films. 17 March 2010: Trial results for 15 March 2010: Actor James Nesbitt bapineuzumab, a potential speaks of his mother’s Alzheimer’s Alzheimer’s drug, may be delayed disease Results from studies which were completed at Film and TV star James Nesbitt the end of 2008 on the potential Alzheimer’s has spoken about his experience drug, bapineuzumab, were originally due to be of his mother, May, having published this year. However, the drug Alzheimer’s disease. He said: “I company, Johnson&Johnson, who took over hadn’t seen her since Christmas the development of the drug last year, are still as I’ve been filming a lot … I adding participants to the study. Eric Yuen of noticed that when you spend a bit

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of time away the deterioration is, in a sense, whereby researchers and medical students are more marked. She wasn’t really aware of me able to meet people with dementia in an when I visited her but by the end she knew informal setting. Although the meetings are me.” brief, it is hoped that the sessions enable dialogue and a greater understanding between He continued: “You realise that this is actually a each other. real condition and it is everything you feared it would be and then you are just playing a 19 March 2010: TV personality waiting game because the condition varies so Arlene Phillips talks of her father’s much from person to person and nobody can dementia actually tell you anything.” Arlene Phillips OBE, He explained why he has chosen to speak of (choreographer, theatre his mother’s disease, saying: “I think by talking director, former dancer and about this I can offer other people hope that talent show judge on Strictly actually in a way it does get better because Come Dancing and So You there are very painful stages to go through.” Think You Can Dance), has spoken of her father’s 16 March 2010: TV presenter, Fiona dementia in order to launch a Phillips, talks of the impact “Carer of the Year Award” Alzheimer’s disease has had on her campaign by the Daily Mail newspaper. Fiona Phillips, TV She explained that the first she realised presenter, has explained something was wrong with her father, Abraham that she had a breakdown Phillips, was when the police called her as they when trying to cope with had found him wandering and lost in London. her work and her mother’s She explained “I was shocked. Dad had always (Amy) Alzheimer’s disease, saying “When I been sharp, well and he loved walking; for look back, I do think, God I was severely years he had set out right across the capital depressed. I didn't want to go out. It was with no problems. It was totally out of character everything I could do to just go into work and and at first I just dismissed it as a one-off.” look after the children. I was not functioning However, this was the first of a series of normally at all.” Ms Phillips left her job as a episodes where her father was confused as he presenter a year ago, after finding out that her was showing the first symptoms of dementia. father now has Alzheimer’s disease. Talking of how she took on the role of carer she We provide full references to said: “Suddenly our roles were reversed and I articles on our website. Please visit felt a tremendous responsibility for him. One of the completely revised Alzheimer the most important things for me was to stay kind, loving and caring, despite the fact that the Europe website on: person I knew was slowly becoming less of that www.alzheimer-europe.org person. He looked like Dad but didn’t act in the same way. That was very hard.” 16 March 2010: Theatre programme Ms Phillips also speaks of the feelings of guilt used to help people with dementia and the difficulty of taking care of the old and remember the young when she said: “It’s difficult being sandwiched between two ages of need: A twelve-week drama workshop children and old parents. I don’t know what the entitled “in the Limelight” has been solution is. I have always been someone who’s launched in London, which aims to pushed myself to do everything. Luckily, I had help people with dementia the support of my very understanding partner reminisce about their past. Suzy Harvey, an who helped care more for the children. But I actress and drama facilitator explained “One fitted it all in with an ill temper and was possibly week we did the marriage scene from Romeo grumpier than I would have like to have been, and Juliet, and used some confetti. As one lady as I never felt I’d completed anything to a was holding it in her fingers, she began to satisfactory standard”. remember her own wedding.” Eventually her father went to live with her 19 March 2010: Buddy programme sister, Karen, before passing away. enables researchers to meet people with dementia A buddy programme has been developed in the US (Northwestern University, Chicago)

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In Memoriam - Tuula Pirttilä (1958-2010) Alzheimer Europe is sorry to announce the death of Tuula Pirttilä, Board Member of the Alzheimer Society of Finland (Muistilitto ry) and key note speaker at Alzheimer Europe conferences. She passed away on 24 March 2010. Alzheimer Finland said: “Tuula Pirttilä fulfilled her vocation as professor of Neurology at the Kuopio University. Her research, focused on Alzheimer’s disease, encompassed the development of diagnostic aids, clinical drug trials as well as rehabilitation. Professor Tuula Pirttilä was the first scholar in Finland to start talking about rehabilitation in connection with people with a dementia. She headed the rehabilitative work carried out both at the University of Kuopio and at the Alzheimer Society of Finland. She was the invited keynote speaker on rehabilitation both in the Oslo AE Conference in 2008 and in the EU-seminar arranged by President Sarkozy in Paris. Tuula Pirttilä’s choice of career was influenced by the fact that her mother had Alzheimer’s disease. Apart from her scientific work Professor Pirttilä was active in many NGOs and organisations both nationally and locally. She was a board member in the Alzheimer Society of Finland as well as the local association of the Kuopio region for many years. Tuula Pirttilä’s untimely death is a great loss to her family and close ones, but also to the entire field of science and research in Finland and worldwide. Her energy and ability contributed to the work of numerous organisations. She was an excellent speaker who could translate complicated medical terminology into language understood by everybody. The work goes on, but nobody can replace Tuula Pirttilä in the uniqueness of her expertise. According to Tuula Pirttilä´s wish a fund carrying her name has been founded. Donations to the fund will be directed to dementia work carried out by the Alzheimer Association of Kuopio (IbanFI86 46000010 2133 67 BIC HELSFIHH).” will be consulted in the future when it comes to New resources and discussing their needs.” publications 1 March 2010: New book published on dementia By reporting on recently published books, reports and information videos on dementia we The book “Understanding hope to offer updates on the current resources Dementia” is aimed at helping lay available to anyone who is affected by people understand more about dementia. dementia. The book gives case studies at the beginning of 28 February 2010: New book chapters, which include: published for people with dementia • What is dementia? “Ich spreche für mich selbst” (I speak for • Symptoms of dementia myself) is a new (German) book in which people with dementia speak for themselves. • Treatments for dementia The publishers (Demenz Support Stuttgart) • Getting help state “People with dementia are frequently • Living with dementia – tips portrayed as being old, in need of care and • Future prospects helpless, which is a fairly negative image. A lot is said about them but little with them, even • Questions and answers when it is about their needs and how they can • How your brain works be supported. In this book people with dementia are given the chance to speak for Written by Dr Nori Graham (Emeritus themselves. They express their wishes and Consultant in the Psychiatry of Old Age at the demands even those from countries in which Royal Free Hospital and Dr James Warner there is already an established movement (Consultant in Old Age Psychiatry at St Charles representing their interests. It is an inspiring Hospital, London), the book has been book which stirs your conscience. Its published by Family Doctor Publications contribution will be that people with dementia Limited in association with the British Medical Association.

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8 March 2010: US Alzheimer’s ThisCaringHome.org is an interactive Association releases 2010 facts and multimedia website which features videos, figures report animations, photographs as well as reviews of home furnishings and smart technologies. The Alzheimer’s association Visitors can go on a virtual tour through each have published their 2010 room of a house and see how different Facts and Figures report, which measures may be taken to help care. includes a special report on race, ethnicity and Alzheimer’s It took four years to develop and won the 2009 disease. The report includes e-Healthcare Leadership Award. chapters on: • An overview of Alzheimer’s disease (including its definition, characteristics, symptoms, risk factors and treatment).

• Prevalence (the report found that 5.3 million Americans have Alzheimer’s Contact Alzheimer Europe at: disease and more women than men have dementia). Alzheimer Europe, 145 route de Thionville, L-2611, • Mortality (Alzheimer’s disease was found Luxembourg (www.alzheimer-europe.org) to be the seventh-leading cause of death Jean Georges, Executive Director across all ages in the US and the fifth- ([email protected]) leading cause of death for those aged 65 Dianne Gove, Information Officer ([email protected]) and over). Annette Dumas, EU Public Affairs Officer • Care giving (the report found that there ([email protected]) are 10.9 million unpaid care givers in the Julie Fraser, Communication Officer US and it also considered the impact ([email protected]) baby boomers will have in years to Gwladys Guillory-Hickey, Administrative Assistant come). ([email protected]) • Use and costs of health care, long-term Grazia Tomasini, Administrative Assistant care and hospice (annual costs were ([email protected]) estimated to be USD 172 billion dollars). • Special report: race, ethnicity and Alzheimer Europe Board Alzheimer’s disease (older African- Americans and Hispanics were found to Chairperson: Maurice O’Connell (Ireland) be considerably more likely than older Vice-Chairperson: Sabine Henry (Belgium) white people to have Alzheimer’s disease Honorary Secretary: Sigurd Sparr (Norway) and other dementias). Honorary Treasurer: Heike von Lützau-Hohlbein (Germany) 26 March 2010: Multimedia website Members: for carers of people with Alzheimer’s Iva Holmerová (Czech Republic) disease developed Neil Hunt (United Kingdom) A website designed to help carers of people Pekka Laine (Finland) Alzheimer’s disease by suggesting strategies to Patrick Maugard (France) “better care for people with dementia, Alicja Sadowska (Poland) especially how to adapt the home environment Charles Scerri (Malta) to meet the behavioural and physical needs of Marc Schaefer (Luxembourg) people with Alzheimer’s disease” has been Maria do Rósario Zincke dos Reis (Portugal) created by researchers from Weill Cornell Medical College, USA.

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

Date Meeting AE Representative 2 April 2010 Binsfeld publishers (Luxembourg, Luxembourg) Julie EU Presidency Conference “Mental Health and Well-being in older 19-20 April 2010 Jean people” (Madrid, Spain) Elan meeting “Progress in Alzheimer’s Research: Today’s 22 April 2010 Jean perspectives, tomorrow’s hope” (London, UK) 26 April 2010 AE Board meeting (Brussels, Belgium) AE Board and staff European Parliament lunch debate “Joint programming initiative on 27 April 2010 AE Board and staff Alzheimer’s disease”(Brussels, Belgium) 27 April 2010 EFPIA Think Tank meeting (Brussels, Belgium) Annette EFGCP-EUCROF workshop on “Ethical challenges in clinical research at 27-28 April 2010 both ends of life – Common lessons to be learnt from paedriatic and Dianne geriatric clinical development” (Antwerp, Belgium) Future Conferences

Date Meeting Place American Academy of Neurology  62nd Annual Meeting, 10-17 April 2010 Toronto, Canada http://www.aan.com/am 25ème Colloque Médecine et recherche sur la maladie d’Alzheimer de la 26 April 2010 Paris, France Fondation Ipsen 6-8 May 2010 People Policy Partnerships, www.alzheimers.org.nz Wellington, New Zealand 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 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 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 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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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 Germany, 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, Spain 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) United Kingdom: 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.

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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.

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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 Sweden (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: London 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, Australia. Canada. 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, New Zealand 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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NEWSLETTER May 2010

dementia plans, which will take Highlights in this issue Editorial place on 22 June. 14 May 2010: Play about I would like to Work is progressing well on our Rita Hayworth’s life with extend a warm different projects, such as the 10 Alzheimer’s disease welcome to literature review on the ethical performed Elena Oana implications of assistive Antonescu, technologies or the 27 May 2010: Alzheimer MEP from establishment of national medication may be 4 Romania and reports on proxy-decision reimbursed in Bulgaria thank her for making in dementia. joining the other 46 MEPs who 30 May 2010: Poster by In May, Annette and I attended have become members of the the Finnish Alzheimer 6 an expert meeting convened by European Alzheimer’s Alliance Society wins award the Belgian Ministry of Health from 16 European Union for the preparations of a Belgian countries. Presidency Conference on the Raising awareness of the societal aspects of dementia

disease itself and the issues and the research paper which surround it plays a presented by Professor Murna fundamental part of our Down highlighted a number of members’ work. This month is interesting policy approaches to no different and we report on destigmatise dementia and our members’ activities from improve the quality of life of Finland, Greece, Ireland, both people with dementia and Portugal and the UK (both in their carers. This will definitely England and in Scotland). be a Conference to look forward to. Greater understanding of the Table of contents disease can also be gained by In this newsletter, we also report on two meetings Editorial...... 1 hearing people describe how it has affected their lives. This organised by the European European Alzheimer’s Alliance ...... 2 month we report on John Patients’ Forum. As a founding Alzheimer Europe Networking ...... 2 Suchet’s moving observations member of the Forum, of caring for his wife, Bonnie, Alzheimer Europe continues to European developments...... 3 who has Alzheimer’s. We also believe in the need of a strong Other European organisations...... 3 bring news of a play about the and united patients’ voice in life of Rita Hayworth and her Europe and we are delighted to Policy Watch...... 3 struggle with the disease. The report on the organisation’s Members’ News...... 4 contrast between her on screen continued good health both in life and battle with Alzheimer’s its past activities, future plans Science Watch ...... 6 disease provides a stark and financing. Dementia in Society ...... 10 reminder of the fact that Finally, as always we bring you dementia can strike anyone at New resources and publications ..... 11 a selection of research news on any time. AE Calendar ...... 12 the genetics, prevention and In the office we continue to treatment of Alzheimer’s Future Conferences...... 12 prepare for our forthcoming disease and other forms of conference in September and I dementia. It is truly encouraging take this opportunity to remind to see the amount of research readers that our call for that we can report on a weekly abstracts closes on 30 June. basis. Early bird registration is also still available and you can register Jean Georges at a reduced rate until 31 July. Executive Director We have also started preparations for our lunch debate in the European Parliament on national

Page 1 of 13 Newsletter: May 2010

European Germany Niebler Angelika (EPP), Roth-Behrendt Dagmar Alzheimer’s Alliance (S&D), Ulmer Thomas (EPP), Weisgerber Anja (EPP) Greece In April, Antonescu Elena Oana Chountis Nikolaos (GUE-NGL), Koppa Maria Eleni (Romania) joined the European (S&D), Kratsa-Tsagaropoulou Rodi (EPP) Alzheimer’s Alliance, which brings the total number of Ireland MEPs in the Alliance to 46, representing 16 Member States Aylward Liam (ALDE), Childers Nessa (S&D); of the European Union and six Crowley Brian (ALDE), McGuiness Mairead (EPP), of the seven political groups in Mitchell Gay (EPP) the European Parliament. Italy Antonescu The members of the European Panzeri Pier Antonio (S&D), Toia Patrizia (S&D) Elena Oana Alzheimer’s Alliance are the (Romania, EPP) following: Luxembourg Belgium Lulling Astrid (EPP) Brepoels Frieda (Greens/EFA), Ries Frédérique Netherlands (ALDE), Staes Bart (Greens/EFA), Sterckx Dirk (ALDE) De Lange Esther (EPP), van Nistelrooij Lambert (EPP), Wortmann-Kool Corien (EPP) Cyprus Portugal Triantaphyllides Kyriacos (GUE-NGL) Coelho Carlos (EPP) Czech Republic Romania Cabrnoch Milan (ECR), Kohlicek Jaromir (GUE/NGL), Roithova Zuzana (EPP) Antonescu Elena Oana (EPP) Denmark Slovakia Schaldemose Christel (S&D) Mikolasik Miroslav (EPP), Zaborska Anna (EPP) Finland United Kingdom Jaakonsaari Liisa (S&D), Jäätteenmäki Anneli Hall Fiona (ALDE), Lynne Liz (ALDE), McAvan Linda (ALDE), Pietikäinen Sirpa (EPP) (S&D), Moraes Claude (S&D), Simpson Brian (S&D), Watson Graham (ALDE), Willmott Glenis (S&D). France Audy Jean-Pierre (EPP), De Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Grossetête Françoise (EPP), Morin-Chartier Elisabeth (EPP) Alzheimer Europe Networking On 4 May (Brussels, Belgium), Jean and Annette attended the Belgian Presidency expert meeting on dementia. On 4 May (Brussels, Belgium), Annette attended the European Parliament Environment and Health Committee meeting to hear Commissioner Dalli's Work Plan for 2010. On 5 May (Berlin, Germany), Jean attended a Recognition Programme meeting and gave a presentation on Alzheimer Europe’s campaign to make dementia a European priority. On 6 May (Brussels, Belgium), Annette attended the Patients’ Rights Day organised by Active Citizenship in the European Parliament. On 11 May (Brussels, Belgium), Annette attended the STOA meeting on ageing research in the European Parliament (FUTURAGE, a roadmap for ageing research). On 13 May (Luxembourg, Luxembourg), Jean met with Ruth Bosworth from Pfizer. On 18 May (Brussels, Belgium), Annette attended the European Patients' Forum Health Technology Assessment seminar. On 19 May (Brussels, Belgium), Annette represented Alzheimer Europe at the European Patients' Forum General Assembly meeting. On 25 May (Brussels, Belgium), Annette met with Roxana Radulescu (European Patients’ Forum Senior Policy Advisor).

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19 May 2010: European Patients’ Forum European holds its AGM The European Patients' Forum (EPF) General developments Assembly Meeting took place in Brussels on 19 May 2010. EPF received a warm welcome from its Here we report on developments from the European members for its work carried out in 2009, its 2010 institutions which may impact people with dementia work plan, its European policy work and the and/or their carers. management of its funds. 20 May 2010: European Commission Working groups were organised to focus on two launches second stage social partner questions 1) how can EPF membership best guide, consultation on electromagnetic field strengthen and reinforce EPF to the benefit of all of legislation its members and 2) where would the EPF be in 2020 The European Commission launched a 2nd stage as a European Patients' Movement ? consultation with European social partners on 20 In a closing speech, Commissioner Dalli's May 2010 to seek their views on the electromagnetic representative reiterated the Commissioner's field legislation. commitment to put patients high on the European The aim is to improve Directive 2004/40/EC of 29 Commission's agenda and work with patients. He April 2004 on the minimum health and safety touched upon the economic crisis and feared some requirements regarding the exposure of workers to difficult decisions would need to be made. It will be the risks arising from physical agents necessary to establish priorities in terms of limited (electromagnetic fields). budgets. Health promotion and prevention will empower people to make healthy choices. As Based on the outcomes of this consultation and other a healthy population goes hand in hand with a elements such as new scientific recommendations healthy economy, it will be worthwhile investing in and studies, the Commission will prepare a health. comprehensive socio-economic impact assessment before adopting a new legislative proposal. On a question from the audience regarding the funding of patient groups, Commissioner Dalli said Consultation deadline : 5 July 2010. that it is very likely that the 25% level of industry funding for patient organisations being eligible to EU funding will be maintained. The way forward would Other European be the setting up of a Foundation. In this respect, the Norwegian model was said to be an interesting organisations model. Here we cover the news from independent European organisations such as the European Patient’s Forum, We provide full references to (rather than official bodies of the EU) articles on our website. Please visit 18 May 2010: Seminar on Health the completely revised Alzheimer Technology Assessment held Europe website on: The European Patients' Forum (EPF) seminar on www.alzheimer-europe.org Health Technology Assessment (HTA)took place in Brussels on 18 May 2010. The seminar's aim was to redress the limited knowledge and know-how the patient community has on the science and rationale Policy Watch behind HTA. With speakers from the European In this section you can find articles on various Commission, patient organisations, industry and national policies and initiatives which can have an health professionals, the event presented the impact on issues surrounding dementia. science, methodologies, processes and policies behind HTA and how the patients could get involved. 7 May 2010: The state of California develops an Alzheimer’s Plan Parallel workshops were organised on: The Alzheimer’s Association (US) and the State • the science and methodologies behind Alzheimer’s Advisory Committee are leading the HTA development of a State Alzheimer Plan, which is the • the politics of HTA at EU and national first time that policy and practices regarding level: how can patient groups best get Alzheimer’s disease have been addressed since involved? 1987. It is being drafted by the Alzheimer’s State Plan Task Force, which is composed of • applying the Value+ model on patient representatives from the health care and provider involvement in the HTA process. community, researchers, academics, family caregivers, local and state government, law experts Annette Dumas attended on behalf of Alzheimer for the elderly and Alzheimer’s association staff and Europe. volunteers. The Plan be completed at the end of 2010 and will address: • Care and Services for people with Alzheimer’s disease and related dementias

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• Support for family caregivers Parallel to the workshop presentations on Alzheimer’s disease were held repeatedly all through • Public awareness and education the day. • Creation of a dementia capable workforce Brochures and booklets were distributed to 1,500 people while 150 new members enrolled with the • End of life care. Athens Alzheimer’s Association. African-Americans are at higher risk for Alzheimer’s 30 April 2010: Alzheimer Scotland disease, but less likely than whites to have a diagnosis and this can result in a delay of treatment. launches report on social care for To address this, a special consultation meeting (at dementia the Town Hall) was arranged. Online feedback was Alzheimer Scotland’s new report, Let’s possible throughout May. The Task Force created a Get Personal – personalisation and caregiver survey (in English, Chinese, Spanish, dementia, was launched at the end of Vietnamese and Korean) with input being submitted April and received significant Scottish before 31 May 2010. media coverage. The report demonstrates what can be achieved when people with dementia and their 27 May 2010: Alzheimer medication carers are given control over their own social care reimbursed if used in hospital treatment support. in Bulgaria The Chief Executive of Alzheimer Scotland said, For the first time in Bulgaria, Alzheimer medication “This research shows that, when empowered to (Aricept and Exelon) is to be reimbursed by the state direct their own support, families effectively combine if it is used during hospital treatment. Irina Ilieva, the state resources around their own natural supports - Executive Secretary of the Bulgarian Alzheimer creating truly personalised support. Our findings add society welcomed this decision, saying that the weight to the Scottish Government’s drive towards society likes to “think that our joint efforts, including self-directed support and point to a new way forward the case we filed at the Commission for the for dementia services. Prevention of Discrimination, contributed to this.” The Society will continue to campaign for the Alzheimer “Improving access to personalised support, so that medication to be reimbursed for all treatment (not just people with dementia and their families can have in hospital). genuine choice and control, is the key to achieving the best possible outcome from both state and We provide full references to personal resources. Scotland must change its articles on our website. Please visit methods of community-based dementia care – remaining static is not an option. We hope that this the completely revised Alzheimer approach will be recognised by the forthcoming Europe website on: National Dementia Strategy and will be central to reshaping care in the future.” www.alzheimer-europe.org May 2010: "Kelembra has forgotten"- New Project of Alzheimer Portugal brings Members’ News generations together The Northern Branch of Alzheimer In this section we report on our members’ latest Portugal has embraced a new initiatives and work. project, this time planned for children and the 24 April 2010: Workshops for caregivers relationships established with their grandparents. of people with dementia organised in The main objective is to raise awareness in children Greece regarding the importance of support for their The Athens Association of Alzheimer’s grandparents helping them to overcome memory Disease and Related Disorders problems and some daily life difficulties. Promoting organised educational workshops for links between generations, reinforcing the role of the relatives and caregivers of people with elderly in society/family, with children as key players dementia on Saturday, April 24 2010, at in strengthening and nurturing these ties, are also the Athens War Museum, from 10:00- part of the objectives. 19:00 hours. Based on the book "Memo, the baby More than 250 caregivers attended and had the elephant", which was edited by opportunity to talk with health care Alzheimer Portugal, "The Storyteller - professionals about the problems Kelembra has forgotten" is intended and difficulties experienced trying to for children aged 6 to 10 years and is being meet patients’ needs. presented in interact with children in a very creative and captivating way. Also involved are an Workshop titles were: Occupational Therapist and a Clinical Psychologist, from the Association, who answer the questions, 1) Treatment of Alzheimer's Disease which arise from the story, regarding Kelembra the 2) Alzheimer's Disease Progression grandmother and the attitudes of Memo comparing 3) Behavioral and Psychological Problems them with real life situations of children. These 4) Practical issues of Caring. sessions stimulate their social interaction, patience,

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affection, and provide a better understanding of the as possible, for the support of dementia patients and relations with grandparents. their caregivers. The book "Memo, The Baby Elephant" 12 May 2010: UK- Award ceremony is aimed at children from 5 years recognises the work a carer of a person contributing to the demystification of with dementia and also donates proceeds Alzheimer's disease. It´s available in a to the Alzheimer Society bilingual edition – Portuguese/English - and is illustrated with colorful designs that tell the The dementia carer of the year 2010, which is one of adventures of Memo in . The book has the five awards given at the Daily Mail’s National Carers retail cost of EUR 12.50 and a special price of EUR of the Year Awards, was given to Michael Tuton, 10 for members of Alzheimer Portugal. whose mother, Molly, is in the late stages of dementia. Following the death of his father in 2002, 10 May 2010: Regional helpline launched Mr Tuton moved back to Hull from Canada in order to by the Alzheimer’s Society care for his mother. The Alzheimer’s Society has launched a 24 hour The event was sponsored by Bupa in support of helpline for people in Cornwall Alzheimer's Society, which will receive all funds who are affected by Alzheimer’s raised from the day. Celebrities supporting the event disease. The service offers included Lynda Bellingham, Britt Ekland, Julian information and support for people concerned about Fellowes and Angela Rippon. memory loss, confusion and dementia. The service is supported by Age Concern Cornwall. Andrew Ketteringham, Director of External Affairs of the Alzheimer’s 10 May 2010: Workshop organised Society, said “'Every year we ask our “Supporting the caregivers - An updated patrons, vice-presidents, partners and view on coping with dementia” in Greece ambassadors to meet together so that we can thank them for the enormous help The Greek Association of Alzheimer’s Disease and they give us. This year, with the proceeds Related Disorders (GAADRD) has going to Alzheimer's Society, we came to the participated in the ‘Students Week’, conclusion that this was the event to which we should held at Aristotle University of invite them all. It couldn't have been a better Thessaloniki, organising a workshop decision; it was moving and inspirational and all of us entitled “Supporting the caregivers - came away feeling privileged to have been present at An updated view on coping with dementia”. a very special occasion.” ‘Students Week’ is an event that encompasses a 20 May 2010: Alzheimer’s Society calls series of student activities and events held each year for advice to be given to doctors on for a period of 4-5 weeks mainly within the premises palliative care of the Aristotle University of Thessaloniki. This event aims at promoting student pursuits in many fields of Following the publication of the science and culture, encouraging the expression of General Medical Council’s (GMC) individual and collective creativity, and supporting end-of-life care guidance, the Alzheimer Society has human relations and social solidarity. called for doctors to receive advice on palliative care for people with dementia. Within this framework, GAADRD organized the aforementioned workshop on 10th May (17:00 - A spokesman for the Society said: “This guidance is 20:00), at the Ceremony Hall in the old Faculty of a good start towards addressing the needs of people Philosophy. Professor Magda Tsolaki and her staff, in at the end of their lives but it does not go far enough close cooperation with students from the Medical to tackle the specific needs of people with dementia. faculty of the Aristotle University and other It is good to see the GMC emphasising the need for specialists, were able to create a multidisciplinary doctors to weigh up the benefits of starting or workshop. The event was open to all members of the withdrawing treatment; that clinicians should academic community but also to the general public presume someone has the capacity to make and was attended by almost 220 people. decisions; and the importance of dealing with family members in a sensitive manner. However dementia Speakers covered a wide range of topics for is not adequately addressed in the report despite the caregivers. Areas covered included: family therapy, fact that one in three people over 65 will die with the tackling social stigma, legal advice for caregivers, devastating condition. People with dementia have dealing with behavioural disorders, communication specific end-of-life care needs and too many are techniques with patients, coping with caring subjected to an undignified and unnecessarily painful problems, satisfaction rising form the caregiving role , death. We need dementia-specific guidance for spirituality and the role of caring itself. clinicians if we are to ensure people with dementia The event proved to be a unique opportunity, both for get the dignity they deserve at the end of their lives.' students who were able to make presentations and 24 May 2010: The Alzheimer Society of learn more about dementia, but also for caregivers, who were given updated information in order to deal Ireland calls for action to be taken to with their strenuous role. It is the Greek Association’s develop a national dementia strategy, intention to continue organising these events and streamline dementia care and increase retain close cooperation with the academic funds community, in an effort to mobilize as many people A programme which focused on dementia care has been welcomed by the Alzheimer Society of Ireland

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(ASI), which is the leading dementia specific service carers dealing with 12 different agencies at any provider in Ireland. The programme on RTĒ News, one time. ‘Prime Time Investigates: Alzheimer’s Disease’ highlighted the issue of dementia care and the Alzheimer's disease and related dementias deepening crisis for carers due to difficulties in affect more than 40,000 people in Ireland, accessing information, support services and impacting on the lives of 50,000 carers. The specialist care. number of those affected is set to increase substantially due to population ageing. The Society is now making an urgent appeal for action to alleviate this hidden health 30 May 2010: The Finnish Alzheimer crisis for carers and those affected by Society poster awarded the title of the Alzheimer's disease or a related ‘Best Health Promotion Material of the dementia but warns that it is struggling Year’ to cope with the growing demand for its services nationwide. The Finnish Centre for Health Promotion has a tradition of The Society has launched an online campaign for electing the Best Health Promotion Material of the public support calling on the government to: Year. This year the title was granted to a poster by the Alzheimer Society of Finland. The message of the poster is built on a play of words: The Finnish • recognise Dementia as a National Health word MUISTA meaning both the imperative form of Priority NOW and expedite its plans to the verb to remember" and also the word "others". All develop a Dementia Strategy and in all, the message is to encourage people implementation plan so that there can be to care for others, to get inspired about better planning of services and policy as others, to worry about others - and to soon as possible. The Society has remember it all. reaffirmed its commitment to working with all the relevant stakeholders to achieve this The poster was designed by a small objective Finnish Advertising Agency called Maustamo. • take immediate action to streamline We provide full references to dementia care so that current spending on vital services can be more effective for articles on our website. Please visit families the completely revised Alzheimer • increase the commitment of funding for Europe website on: community based services - such as those provided by the charity - in order to enable www.alzheimer-europe.org families to continue caring for their loved ones at home, with dignity, for longer. Science Watch

Fundraising plays a vital role in providing This section has highlights of the most recent Alzheimer Society of Ireland services. On published research on dementia, including research average HSE funding represents only 68% of on the prevention, diagnosis and treatment of the cost - with more than €5m to be raised through disease. fundraising, donations and other grants annually. Despite funding constraints, demand 1 May 2010: New brain research project for services is rising with more than 800 people launched on The Society's waiting list for services. The UK’s independent science academy, the Royal Society, has launched a new project, Brain Waves, The Society is grateful for the tremendous which will investigate developments in neuroscience outpouring of support it has received following and their implications for society. the Primetime programme and the generous contribution of fundraisers and donors who help The project will be led by a Steering Group, chaired bridge the gap between funding received and by Professor Colin Blakemore, who said “Our cost of service provision. increasing understanding of the brain and associated advances in technologies to study the brain, including Equitable and timely access to specialist the human brain, are beginning to give us the tools to information, diagnostic services, community improve the treatments for neurodegenerative services such as home care, day care and short diseases, such as Parkinson’s and Alzheimer’s, and term respite as well as quality residential mental illnesses, including depression and services must be the benchmark towards which schizophrenia. But these advances will also increase the state strives according to the Society. our insights into normal human behaviour and mental wellbeing, as well as giving the possibility of The personal stories portrayed in the enhancement, manipulation and greater programme gave a snapshot of the complexity understanding of the degradation of brain function.” of issues families are dealing with, highlighting the lack of uniformity in delivery of services (the “Brain research is likely to have huge implications for quality and availability of services can be very society. We need to do something that scientists different in one area compared to another) and usually don’t like to do – to speculate about the fragmentation of the system which can see future. There’s a lot to think about and we must begin

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now the process of providing the best possible Alzheimer’s disease and Huntington’s syndrome information in areas of public policy such as health, have a common 3D structural unit, which researchers education, law, and security. Progress in have called “β-arcade”. The researchers hope that neuroscience is going to throw up all sorts of their work will help to diagnose the risk of developing questions about personality, identity, responsibility neurodegenerative diseases and also facilitate the and liberty. We need to be prepared to answer and identification of target sites in order to develop new respond to those questions.” treatments. There will be five reports, the first of which is 3 May 2010: Study examines the expected this Autumn and the last should be relationship between liver disease and published in 2011: memory loss 1. The first module consists of an assessment A study on 300 people who had cirrhosis of the liver of the relevance of neuroscience to the found that over half of them also displayed symptoms areas of public policy, addressing such of neurocognitive impairment. The study was part of issues as the ethics of neuroscience a larger study looking at the effects of AST-120 on technologies and their commercialisation. It people who have liver disease and neurocognitive is expected that this report will be impairments. published in the Autumn. Led by Christopher Randolph, Clinical Professor, 2. Neuroscience, education and lifelong Department of Neurology, Loyola University, learning - How can neuroscience help Chicago, the study was reported at the Digestive explain (and potentially enhance) memory, Disease Week meeting, New Orleans, USA. creativity, attention, motivation and other brain processes that are essential for 4 May 2010: Results from animal study on learning? The project will look at these potential Alzheimer’s disease released issues as well as the challenges, opportunities and limitations of applying the A potential Alzheimer’s drug, Anavex 2-73, which lessons from neuroscience to learning in targets mitochondrial dysfunction, has been tested on the classroom and beyond. on rats, mice and dogs. Results showed that “when (the drug was) administered prior to amyloid-beta 25- 3. Neuroscience, conflict and arms control - 35 peptide, ANAVEX 2-73 protected against the Addressing concerns around the military amyloid peptide-induced learning deficits, and security applications of rapid advances hippocampal lipid peroxidation and cell loss in the in the neurosciences; the risks of CA1 pyramidal layer and showed potent ‘militarisation’ of neuroscience. These neuroprotective activity.” Preparations are now include indications that advances in underway to carry out Phase I trials. neuropharmacology are stimulating new interest in the development of toxic Developed by the company Anavex, the research chemical and biological agents as was carried out with the research organisation incapacitating weapons. These would Forenap Pharma EURL. target the central nervous system to 5 May 2010: Study finds an increased risk degrade human cognition, performance, or of dementia for spouses of people who consciousness. have dementia 4. Neuroscience, responsibility and the law – A study published in the Journal of Assessing the possible future impact of American Geriatrics Society has found brain research on the legal system. This an increased risk of dementia for could include such issues as the possible spouses of people who have dementia. prediction of criminality, behaviour change, surveillance and mental privacy, as well as The study, led by Dr Maria Norton, Utah wider discussion about what neuroscience State University USA, was conducted on could mean for understandings of decision- over 2,000 people aged 65 and over who were making, intention, responsibility and free monitored over a 12 year period. The results showed will. that “incident dementia was significantly associated with older age, and having a spouse with dementia, 5. Lessons for the governance of novel areas with participants with a spouse who developed of science and new technologies - Bringing dementia being at a six times increased risk of together lessons and common themes developing dementia.” from the first 4 reports, this part will reflect on the governance, regulation and public 5 May 2010: Study examines the accountability of science and technology, relationship between the presence of AB principally for neuroscience but also for protein and Alzheimer’s disease other developing areas of science and technology, such as synthetic biology, A study which examined 43 brains to investigate the genomics and nanotechnology. relationship between biochemically distinct forms of amyloid- β protein and the presence of Alzheimer- 3 May 2010: Researchers identify type dementia found that “soluble amyloid β-protein common protein structure in is a major correlate of dementia associated with neurodegenerative diseases Alzheimer-type pathology and is likely to be intimately involved in the pathogenesis of cognitive Researchers have discovered that the proteins in failure.” neurodegenerative diseases such as Parkinson’s,

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The study was led by Dominic Walsh, University people found that those people with semantic College Dublin, Ireland and reported in the journal dementia, whilst “able to discriminate between Brain. different flavours and indicate whether they found them pleasant or not, had difficult in identifying We provide full references to individual flavours or assessing the appropriateness of particular flavour combinations (for example, articles on our website. Please visit vanilla and pickle)”. Researchers believe that this the completely revised Alzheimer loss of meaning for flavours links up with why people Europe website on: with semantic dementia develop a preference for unusual foods and food combinations. www.alzheimer-europe.org The study was led by Katerine Piwnica-Worms, Washing University in St Louis, Missouri and Jason 5 May 2010: Study on mice examines the Warren, University College London, UK and effect physical activity has on memory published in the journal Cortex. function 10 May 2010: Phase III trial commences A study found that the regeneration of hippocampal for potential Alzheimer treatment neurons was greater in those mice which were physically active or which had seizures compared to A Phase III clinical trial has begun which tests the those mice which were inactive. ability of Intravenous Immune Globulin (IVIg) in slowing down the progression of Alzheimer’s The study was led by Dr Verdon Taylor, Max Planck disease. For over 20 years IVIg has been used to Institute of Immunobiology, Freiburg, Germany, and treat primary immunodeficiency disorders. published in the journal Stem Cell. The trial is being led by Michael Rafii, Assistant 6 May 2010: Study on mice examines the Professor of neurosciences, UC San Diego School of relationship between ‘histones’, gene Medicine and Associate Director of the Alzheimer’s expression and memory function Disease Cooperative Study (ADCS). German researchers who investigated the 10 May 2010: Test which indicates relationship between ageing and the function of tiny propensity for various diseases, including protein spools (which control gene expression known Alzheimer’s disease, to be sold over-the- as histones) found that “by injecting a drug (some of counter in the US which have been previously used for cancer treatment) into the hippocampus of older mice to A test called the “Insight test”, which restore acetylation, the gene expression of these scans people’s genes for a propensity mice looked similar to their younger counterparts. for various diseases, including Moreover this treatment improved the ability of old Alzheimer’s disease, is to be made mice to remember a foot shock.” available in 6,000 Walgreens’ drugstores in the US from 14 May 2010. This will be the first time that such The study, led by Andrew Fischer, laboratory for testing be made available over-the counter. Aging and Cognitive Diseases, European Neuroscience institute, Gottingen, Germany, was The US Department of Food and Drug Administration published in Science. has questioned whether the Pathway Genomics’ test will be sold legally as it does not have the agency’s 7 May 2010: Study examines the approval. In addition, there have been various relationship between music and criticisms including those that the results will be too recognition vague to provide much useful guidance. A study which investigated the effect musical 12 May 2010: Study identifies two genes mnemonics had on verbal information associated with the risk of Alzheimer’s recognition found that people with disease Alzheimer’s disease demonstrated better recognition accuracy for sung lyrics than A study suggests that there are two more genes (one spoken lyrics. People without gene near BIN1 and the other near to BLOC1S3 and Alzheimer’s disease showed no marked difference MARK4) which are associated with the risk of between the accompanying sung or spoken Alzheimer’s disease. The results also reinforced recording when recalling the information. Participants earlier results from 2009 which had identified the were presented visually with lyrics to 40 songs, 20 of genes PICALM and CLU as being associated with which were accompanied by a sung recording and Alzheimer’s disease. This was a genomewide the other 20 by a spoken recording. association study (GWAS) on more than 35,000 people (the largest to date for Alzheimer’s disease). The study was carried out by scientists from Boston University School of Medicine (BUSM) and The study was led by Monique Breteler, Erasmus published in the journal Neuropsychologia. University, Rotterdam, the Netherlands and Sudha Seshadri, Boston University, USA. 10 May 2010: Study examines the relationship between flavour processing 12 May 2010: Study examines word recall and semantic dementia in the elderly A study which investigated the A study which examined word recall in people processing of flavour information giving between 75 and 90 found that people with few teeth different flavoured jelly beans to scored lower than those with more teeth.

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Participants’ recall was tested periodically over a 20 May 2010: Study examines the three year period by their being asked to relationship between the use of recall 10 words they had been presented pesticides and risk of dementia with five minutes earlier. A study has found that pesticide The study was carried out by researchers at the exposure may increase the risk of University of Kentucky, America. dementia and Alzheimer’s disease in late life. The study was carried out by 13 May 2010: Studies examine the inviting residents of the agricultural relationship between people with a trial community of Cache county, UT, aged fibrillation who are treated with catheter 65 years and older to participate. ablation and the risk of Alzheimer’s Over 3,000 people enrolled. Cognitive status was disease assessed at baseline then after 3, 7 and 10 years. Research presented at the Annual Scientific The study was led by KM Hayden, Departments of Sessions of the Heart Rhythm Society suggests that Psychiatry and Behavioural Sciences, Duke people with a trial fibrillation treated with catheter University Medical Center, Durham, USA and was ablation are less likely to develop Alzheimer’s published in the journal Neurology. disease or other forms of dementia. 20 May 2010: Study examines obesity The on-going research has been carried out on over and dementia 37,000 people over a three year period by scientists from the Heart Institute at Intermountain Medical An analysis of the relationship between Center and led by John D May and T Jared Bunch. various factors (body mass index (BMI), waist circumference (WC), waist 17 May 2010: Experts explore the to hip ratio (WHR), subcutaneous adipose tissue relationship of caffeine on the brain and (SAT), visceral adipose tissue (VAT) with magnetic Alzheimer’s disease resonance imaging (MRI) markers of brain ageing) found that in middle-aged participants there was a A collection of original studies by experts stronger connection between central obesity and the offer various perspectives on the role risk of dementia and Alzheimer’s disease. caffeine may play including: The study, led by Sudha Seshadri, was carried out • Caffeine and Cognition in by researchers from the Boston University School of Functional Magnetic Resonance Imaging Medicine and published in the journals Annals of • Is Caffeine a Cognitive Enhancer? Neurology. • Chronic Caffeine Consumption Prevents 30 May 2010: Study highlights the role Memory Disturbance in Different Animal three proteins, AB, tau and -synuclein, Models of Memory Decline may play in cognitive decline • Caffeine and Coffee as Therapeutics A study in which researchers developed a mouse Against Alzheimer’s Disease model which exhibits the combined pathologies of Alzheimer’s disease and dementia with Lewy bodies • Caffeine Protects Against Disruptions of (DLB) found that, compared to other transgenic mice, the Blood-Brain Barrier in Animal Models of the mice with AD/DLB exhibited “accelerated Alzheimer’s and Parkinson’s Diseases cognitive decline associated with a dramatic enhancement of Aβ, tau, and -synuclein • Caffeine, Cognition, and Socioeconomic pathologies.” The researchers believe this supported Status the theory that Aβ, tau, and -synuclein interact in • Caffeine, Cognitive Functioning, and White vivo to promote the aggregation and accumulation of Matter Lesions in the Elderly: Establishing each other and accelerate cognitive dysfunction. The Causality from Epidemiological Evidence study also revealed that the accumulation of - synuclein alone could significantly disrupt cognition. • Caffeine as a Protective Factor in Dementia and Alzheimer’s Disease The study, led by Frank La Ferla, University of California, was published in the Journal of • Caffeine Intake is Associated with a Lower Neuroscience. Risk of Cognitive Decline: A Cohort Study from Portugal We provide full references to • Caffeine Intake and Dementia: Systematic articles on our website. Please visit Review and Meta-Analysis. the completely revised Alzheimer The experts were brought together by guest editors Europe website on: of the Journal of Alzheimer’s disease, Alexandre de Mendonga, Institute of Molecular Medicine and www.alzheimer-europe.org Faculty of Medicine, University of Lisbon, Portugal, and Rodrigo A. Cunha, Center for Neuroscience and Cell Biology of Coimbra and Faculty of Medicine, University of Coimbra, Portugal.

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and its symptoms played a big role in my decision to Dementia in Society write the play. I have personally experienced it through a close family member, and it is not easy to 10 May 2010: USD 15 million donated to grasp the deterioration of a person with so much Alzheimer’s research knowledge and vividness. It is one of the most absurd phenomena of human nature.” A US couple, Charles F and Joanne Knight, have donated USD 15m to Washington University’s Charles Scerri, General Secretary of Alzheimer’s research centre. Joanne Knight’s mother the Malta Dementia Society, who was diagnosed with Alzheimer’s disease in the 1980s attended the play said, “I found the and she is a board member and former chairperson performance very refreshing and I of the St Louis chapter of the Alzheimer’s believe it can be used as an Association. educational tool in raising awareness. It was different and highly entertaining.” The Centre’s director, John Morris, said, “The Knight funding of the Alzheimer's centre will provide us the 19 May 2010: Author talks of her wherewithal to retain faculty whom we'd like to keep mother’s dementia and also to recruit faculty that we need to replace individuals or to go into a new direction that's been Author Catherine Horwood has described her developed. We don't have to wait to develop a track experience having a mother with Alzheimer’s record of preliminary findings and then a grant disease. Ms Horwood had noticed over a two-year application process and then wait to see if the grant period that her mother, a former ballet dancer, found is awarded. We can immediately begin exciting and tasks increasingly difficult and witnessed her promising new studies with this wonderful gift." mother’s frustration. For example, her mother found that she could no longer read because she couldn’t The news was announced on the St Louis Public remember what the proceeding text was about, nor Radio Station. could her once elegant mother remember how to button up a cardigan. Ms Horwood felt further 10 May 2010: Song about Alzheimer’s confirmation that something was deeply wrong when disease performed her mother lost her passion for gardening, something Song writer and singer Loretta Hagen performed her which had been a common interest for them both. song “Sundown Till Dawn” at the Connecticut Film Her mother also recognised her changing condition, Festival, USA. The song is written about her mother, as Ms Horwood’s grandma had also had dementia. Vera Tutini, who was diagnosed with Alzheimer’s Ms Horwood explained how the symptoms worsened disease seven years ago. Hagen hopes that her song and one day her mother, who rarely left the house, will raise awareness and funding for research into the went outside into the street and told a neighbour disease. “there’s a man in the house. He wants to kill me. I can’t go back in there.” She refused for a long time to We provide full references to return to the house and a chair was brought out for her. The man, explained Ms Horwood, was her father articles on our website. Please visit who had been married to her mother for 50 years. the completely revised Alzheimer Her mother died two months later. Europe website on: Ms Horwood said “few other degenerative diseases strip someone of their personality quite so thoroughly www.alzheimer-europe.org as Alzheimer's. Watching someone you love become so diminished is agony. At the first signs, there is the 14 May 2010: Play performed about Rita denial that this can be happening. Then there is Hayworth’s life and struggle with anger with the illness itself; and sometimes even Alzheimer’s disease anger with the person themselves for no longer being who they were. And finally there is the living “Me, myself and Rita” is a one-actress bereavement: mourning someone who is still alive play depicting the life of 1940s film star, but no longer with you.” Rita Hayworth which was performed in many countries, the latest of which was, 27 May 2010: British newscaster talks Malta, in May. Written and acted by about his experience of his wife having Almog Pail, the play presents the dementia contrast of Ms Hayworth’s glamorous stage life with that of her real life, in which she lived with early onset British newscaster, John Suchet, has Alzheimer’s disease. spoken about his experiences since announcing that his wife, Bonnie, has In an interview in the Malta Independent, Ms Pail dementia. After some encouragement described the impact Alzheimer’s disease had on by specialist nurse, Ian Weatherhead, Rita Hayworth saying, “Alzheimer’s disease struck he kept a journal about this journey, Rita in her early forties, progressively ruining her which he has decided to publish, calling it “My life. She could barely memorise text, and it became Bonnie: How Dementia Stole The Love Of My Life”. impossible to work with her. The real tragedy was the lack of awareness of the disease at the time, leading Originally Mr Suchet thought not many people would people to confuse her condition with alcoholism and take notice of his announcing his wife’s dementia, but foolishness. She was thrown out of Hollywood, dying he explained his surprise as he “received hundreds as a recluse in her New York apartment after a 20- of thousand of e-mails and letters from all across the year struggle. The power of this destructive disease world, all from carers saying that's what we're going through. Thank you for talking about it."

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Since the announcement made last year of Bonnie 5 May 2010: US Teenagers from Suchet’s dementia, Mr Suchet has had to place her Alzheimer organisation hope to expand in a home. He said that “Bon went into full-time care content on their website last September and to say it was the most difficult decision I've ever had to take is a pathetic A part of the Alzheimer’s Foundation of America’s understatement." website is dedicated to helping teenagers who are affected by Alzheimer’s disease. Written by a He also described the day he took her into care and teenager the site is called AFATeens.org. and calls the fact he had to buy her a one way train ticket, for teenagers to: saying "It's the little things that break you up." • Get connected – by gaining support from Mr Suchet talked of his own struggle, having to adapt experts, sharing experiences and to his new life without his wife and said “I'm starting a remembering loved ones with creative new life. Am I happy? Of course not. Am I excited? contributions God, no. It was never supposed to be like this.” • Take action – by joining or starting AFA New resources and Teens chapters and • Learn more. publications The author wishes to develop this site, hoping to By reporting on recently published books, reports and expand the education content by adding interactive information videos on dementia we hope to offer online tools which explain disease progression, offer updates on the current resources available to anyone coping strategies and encourage teens to adopt who is affected by dementia. healthy lifestyles that can lower risk factors. To fund this, a proposal has been posted on the Pepsi ideas 1 May 2010: Book published on dance for website (refresheverything.com) where ideas are people with dementia posted then voted on. The winner is awarded money from Pepsi for their project. The guide “Invitation to the Dance” offers practical suggestions (such as dance ideas, themes, music 20 May 2010: The French Ministry of and props) aimed to help carers organize simple Health guidelines on Alzheimer’s disease dance sessions for people with dementia. It is not published in English necessary that the carers have experience in dance as the book hopes to encourage lay people to run the Recommendations by the Ministry of Health which sessions. were made within the framework of the French Alzheimer’s Plan (2008-2013) have now been made The guide includes chapters on: available in English. Quick reference guides now available in English are: • Where does dance fit in? • The management of behavioural disorders • Let’s dance! • Diagnosis and treatment of Alzheimer’s • Structure of the session disease • The ethic of the dance session • Alzheimer’s disease and related • Materials for the dance session conditions: Health monitoring for family carers. • Dancing with people with dementia And the Clinical Practice Guidelines now published in • Sample dance sessions. English is The author, Dr Heather Hill, who has run dance • Alzheimer’s disease and related sessions for people with dementia explains “Dance conditions. Diagnosis and Treatment. sessions gave care staff the opportunity to see behind the mask of dementia, giving staff the time All of the above guides are available on the Ministry and space to relate to residents simply as human of Health’s website. being to human being, joining with them in an activity which could be vigorous, could be relaxing, could allow for sharing of memories, self expression or social interaction. These practical experiences, together with my own research, have convinced me that dance has much to offer in terms of meeting not merely the physical but also the social and emotional needs of people with dementia.” Invitation to the Dance (48 pages) by Heather Hill and the accompanying music CD by Ian Cullen costs GBP 25.00 and is available from the Dementia Services Development Centre (DSDC) Stirling, Scotland.

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

Date Meeting AE Representative 200th Anniversary Meeting of Karolinska Institutet (Stockholm, 8-9 June 2010 Jean Sweden) 11-12 June 2010 European Memory Clinics Association (Basel, Switzerland) Heike 21 June 2010 Alzheimer Europe Board (Brussels, Belgium) AE Board and staff European Parliament lunch debate “Alzheimer’s disease and 21 June 2010 dementia as a national priority: Contrasting approaches by AE Board and staff France, Germany and the UK” (Brussels, Belgium) EU Conference “Mental health and Well-being in older people” 28-29 June Jean (Madrid, Spain) Future Conferences

Date Meeting Place 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 18th European Social Services Conference, http://esn- 21-23 June 2010 Barcelona, Spain conference.org/ 1st International Congress on controversies in longevity, health 24-27 June 2010 Barcelona, Spain and aging (CoLONGY), www.comtecmed.com Mental Health and Well being in Older People- Making it Happen, 28-29 June 2010 http://ec.europa.eu/health/mental_health/events/ev_20100419_en Madrid, Spain .htm Together for Health – a Strategy for the EU 2020, 29-30 June 2010 http://ec.europa.eu/health/interest_groups/eu_health_forum/open_ Brussels, Belgium forum/2010/index_en.htm#fullwidth 2010 IANA (International Academy on Nutrition and Aging), Albuquerque, New 26-27 July 2010 www.healthandage.com/html/min/iananda Mexico Dignity for the Frail Old: From dilemmas to solutions, 2-5 September 2010 Bergen, Norway www.dignity.no International Conference on evidence-based policy in long-term 8-11 September 2010 London, UK care, [email protected] 15-17 September 26e Congrès de la Société de Psychogériatrie de Langue Limoges, France 2010 Française (SPLF), www.nexcom-events.com 22-25 September 5th Croatian Congress on Alzheimer's Disease with international Zadar, Croatia 2010 participation, www.alzheimer2010.com 30 September – 2 20th Alzheimer Europe Conference “Facing Dementia Together”, Luxembourg, October 2010 www.alzheimer-europe.org/conferences Luxembourg 7-9 October 2010 Gemeinschaft leben, www.deutsche-alzheimer.de Braunschweig, Germany Coming of Age: Dementia in the 21st Century, 19-21 October 2010 London, UK www.dementia.stir.ac.uk 9ème Congrès International Francophone de Gériatrie et Gérontologie 19-21 October 2010 Nice, France 30èmes Journées Annuelles de la Société Française de Gériatrie et Gérontologie, www.cifgg2010.com 10th Congress of European society for clinical neuro- 21-23 October 2010 Zagreb, Croatia pharmacology, http://www.escnp.org The 4th World Congress on Controversies in Neurology (CONy), 28-31 October 2010 Barcelona, Spain www.comtecmed.com 3-5 November 2010 Third Conference: Clinical Trials on Alzheimer’s Disease (CTAD), Toulouse, France

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http://www.ctad.fr The 10th International Conference on Alzheimer’s & Parkinson’s 9-13 March 2011 Diseases (AD/PD 2011), Barcelona, Spain www2.kenes.com/adpd/Pages/Home.aspx The VII International Association of Gerontology and Geriatrics 14-17 April 2011 (IAGG) – European Region Congress “ Healthy and Active Ageing Bologna, Italy for all Europeans 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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