Dementia I N E U R O P E the Alzheimer Europe Magazine
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Issue 2 December 2008 DEMENTIA I N E U R O P E THE ALZHEIMER EUROPE MAGAZINE “The fight of all Europeans against Alzheimer’s disease Katalin Levai, MEP, highlights the importance of the European Alzheimer's Alliance is a priority” Nicolas Sarkozy Alzheimer's associations throughout Europe celebrate World Alzheimer's Day Jan Tadeusz Masiel, MEP, talks about the situation in Poland for people with dementia ACT NOW Remember those who cannot 6.1 million people have dementia in Europe THE TIME TO ACT IS NOW MAKE DEMENTIA A EUROPEAN PRIORITY DEMENTIA Issue 2 IN EUROPE December 2008 TABLE OF CONTENTS THE ALZHEIMER EUROPE MAGAZINE 04 Welcome 28 National dementia strategies By Maurice O’Connell, A snapshot of the status of national dementia Chair of Alzheimer Europe strategies within Europe 30 The view from Poland Prioritising dementia Jan Tadeusz Masiel, MEP, talks of the challenges faced by people with dementia and 06 Working together towards a better their carers understanding of dementia Alzheimer Europe reflects on the aims of the 32 Confronting double discrimination European Collaboration on Dementia project Roger Newman and Bill Cashman talk about and talks with Dianne Gove about the social discrimination, inclusion and diversity in the care recommendations context of people with dementia and their carers 09 Fighting dementia together Alzheimer Europe speaks with Katalin Levai, 34 Policy overview MEP A roundup of policy developments in the EU Alzheimer Europe Board 10 36 Learning from each other: Developing the European Pact of Maurice O’Connell (Ireland), Chairperson A European Ethics Network Mental Health Sabine Henry (Belgium), Vice-Chairperson A summary of the European workshop on John Bowis, MEP, talks to Alzheimer Europe Sigurd Sparr (Norway), Honorary Secretary Heike von Lützau-Hohlbein (Germany), ethics and interview Honorary Treasurer Iva Holmerovà (Czech Republic) 14 An insight into good end-of-life care Dementia in the News Neil Hunt (UK) Pekka Laine (Finland) for people with dementia and their Patrick Maugard (France) carers 39 Moving dementia out of the shadows Alicja Sadowska (Poland) A summary of a European workshop on ethics Jean Georges, Executive Director of Alzheimer Charles Scerri (Malta) Marc Schaefer (Luxembourg) and interview with Ulla Schmidt, German Europe, looks at the contribution that public Maria do Rosário Zincke dos Reis (Portugal) Minister for Health figures can make to the fight against stigma Contact Alzheimer Europe at: 16 40 Current and future treatment options Dementia in Society Alzheimer Europe for Alzheimer’s disease A look at how dementia is portrayed in 145 route de Thionville Professor Alexander Kurz presents an overview literature and the arts L2611, Luxembourg Tel.: +352 29 79 70 of treatment options Fax: +352 29 79 72 42 World Alzheimer’s Day www.alzheimer-europe.org 19 The European Alzheimer's Alliance in Alzheimer associations across Europe www.dementia-in-europe.eu action campaign for change [email protected] A look at the work of some of the members of the European Alzheimer’s Alliance 45 Spotlight on … Finland, Italy Jean Georges, Executive Director Annette Dumas, EU Public Affairs Officer and Portugal Julie Fraser, Editor A look back at the associations’ achievements Dianne Gove, Information Officer Policy Watch as they celebrate their anniversaries Gwladys Guillory-Hickey, Grazia Tomasini, Administrative Assistants 22 Europe unites against Alzheimer’s 48 M embers’ events disease The German Youth competition Photo credits Report on the French Presidency Conference European Parliament, European Commission, on the fight against Alzheimer’s disease 49 Putting a face to commitment Alzheimer Europe, Getty Images. The people behind Alzheimer Europe Layout 27 Making dementia a European priority binsfeld corporate Members of the European Parliament call for 50 Forthcoming events the development of a European Action Plan on and conferences Print Alzheimer’s disease Qatena, Luxembourg EDITORIAL WelcOME I am delighted to be welcoming you to Alzheimer In this issue, we include evidence of the com- Europe’s second edition of The Dementia in Europe mitment and success of Alzheimer associations magazine. It has been wonderful to receive feed- around Europe raising awareness during their back that our Magazine has been used so widely World Alzheimer’s Day celebrations. Such events to help raise awareness of the issues which sur- are crucial to remove the stigma described by Jan round this dreadful disease, and a heartfelt thank Henry T. Olsen and his wife, Laila Lanes, who you goes out to all those who have contributed, courageously spoke out at the French Conference helping to ensure the magazine is both relevant about the impact dementia has on their lives and and informative. called for people to be more open about this dis- ease. This sentiment is echoed by Jean Georges, European policy on dementia has been pushed Executive Director of Alzheimer Europe in his to the forefront of agendas these last few months article “Moving dementia out of the shadows”, as our coverage of the high profile French Presi- which considers the negative reaction to the an- Maurice O’Connell Chairperson of Alzheimer Europe dency Conference “The fight against Alzheimer’s nouncement that Britain’s former Prime Minister, disease and related disorders” illustrates. I am Baroness Thatcher, has dementia. One way in delighted that Alzheimer Europe’s agenda has which openness about the disease can be achieved been endorsed by no less than the President of is illustrated in the article on the German Alzhe- France and national ministers from around Eu- imer’s Association’s recent Youth Competition, rope. That momentum should be growing at a which encouraged young people to be actively in- time when we face economic uncertainty only volved with people with dementia and their carers. adds to our commitment that we must persevere. Without exception, speakers at the Conference Up-to-date research on current treatment options called for collaboration, cooperation and a pooling of Alzheimer’s disease, which were presented dur- of resources in order that we continue to progress. ing Alzheimer Europe’s fourth lunch debate at the European Parliament by Prof. Alexander Kurz in Current examples of collaborative work are given September, are also reported on. in the interview with Katalin Levai, MEP, who talks of the work of the European Alzheimer’s Al- Finally, we give details of the European Parlia- liance, in our report on the recently completed ment’s Written Declaration nº 80/2008 on the pri- European Collaboration on Dementia project and orities against Alzheimer’s disease. Members of in the article “Learning from each other: A Euro- the European Parliament have, for a short while, a pean Ethics network”. Unfortunately, stark differ- golden opportunity to pledge their commitment ences between the European countries are also to helping people with dementia and their carers revealed and perhaps most evident in our snap- by signing this Declaration and I take this oppor- shot of national dementia specific plans. Further, tunity myself of asking all MEPs, to please sign in “The view from Poland”, Jan Tadeusz Masiel, this Declaration without hesitation. Remember, MEP, talks of the lack of services for people with the time to act is NOW. dementia and we also take a look at the differences in approach to dementia treatment and care at an individual level, as Roger Newman illustrates in his wonderful article “Gods for today!” Maurice O’Connell, Chairperson 4 DEMENTIA Issue 2 IN EUROPE December 2008 THE ALZHEIMER EUROPE MAGAZINE PRIORITISING DEMENTIA Fighting Dementia together “I hope that by this action we will draw the attention of other European decision makers to the fact that European health policy is lacking” Katalin Levai, MEP, talks to Alzheimer Europe about the Written Declaration on the fight against Alzheimer’s disease Professor Alexander Kurz “The vision is to prevent dementia altogether” 06 Working together towards a better 14 An insight into good end-of-life understanding of dementia care for people with dementia and Alzheimer Europe reflects on the aims of the their carers European Collaboration on Dementia project A summary of a European workshop on and talks with Dianne Gove about the social ethics and interview with Ulla Schmidt, care recommendations German Minister for Health 09 Fighting dementia together 16 Current and future treatment Alzheimer Europe speaks with Katalin Levai, options for Alzheimer’s disease MEP Professor Alexander Kurz presents an overview of treatment options 10 Learning from each other: A European Ethics Network 19 The European Alzheimer's Alliance A summary of the European workshop on in action ethics and interview A look at the work of some of the members of the European Alzheimer’s Alliance PRIORITISING DEMENTIA The EuroCoDe experts at a workshop meeting in Brussels WORKING TOGETHER TOWARDS A BETTER UNDERSTANDING OF DEMENTIA As the European Commission’s three-year project to create a net- work of all players active in the field of dementia comes to a close, Alzheimer Europe reflects on the aims of the project and talks with work package leader Dianne Gove about the recommendations for social care. The European Collaboration on Dementia The specific aims of the project were: (EuroCoDe) project was set up in order to develop a European network of all the players active in the 1. Consensual Prevalence rates area of dementia. The network brought together By gathering existing epidemiological