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Dementia in Europe the Alzheimer Europe Magazine

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Dementia in Europe the Alzheimer Europe Magazine Issue 10 February 2012 GAZINE SPECIAL DEMENTIA secTION SPOTLIGHT ON ALZHEImeR EUROPE’S IN EUROPE 21ST coNfeRENce THE ALZHEIMER EUROPE MA Enda Connolly provides an update on the Joint Programming Initiative Florence Lustman reviews the progress of the French Alzheimer Plan eelie Kroes talks about EU CommissionerU can help N people with dementia how the E and their carers Marie-Odile Desana is awarded the “Chevalier de la Légion d’Honneur” TABLE OF CONTENTS 04 Welcome by Heike von Lützau-Hohlbein Policy Watch Prioritising Dementia 20 Rising to the challenge: How the EU can help to address dementia Neelie Kroes, Vice-President of the European 06 Debating dementia in the European Parliament Commission and Commissioner for DG Digital Agenda, explains how the European th A report on Alzheimer Europe’s 11 lunch Innovation Partnership on Active and Healthy debate in the European Parliament which Ageing and new technologies can assist was hosted by Frieda Brepoels, MEP (Belgium) people with dementia and their carers. in December and dedicated to a presentation of the of “Value of Knowing” survey and report. 24 EU Presidency: Denmark Astrid Krag, the Danish Minister for Health, Alzheimer Europe Board speaks about the health agenda for the Heike von Lützau-Hohlbein (Germany), 09 Alliance in action Chairperson A look at how European Alzheimer’s Alliance Danish EU Presidency. Iva Holmerová (Czech Republic), Vice-Chairperson members raise awareness and understanding 26 A progress report on the Joint Maria do Rosário Zincke dos Reis (Portugal), of the disease at European and national level. Honorary Treasurer Programming Initiative on Sigurd Sparr (Norway), Neurodegenerative Diseases Honorary Secretary 12 Legal provisions relating to the Enda Connolly, Member of the Joint Sabine Henry (Belgium) Liane Kadusch-Roth (Luxembourg) restriction of the freedom of Programming Initiative on Neuro- Patrick Maugard (France) movement of people with dementia degenerative Diseases (JPND) Executive Maurice O’Connell (Ireland) Board and Chief Executive of the Irish Health Sirpa Pietikäinen (Finland) Alzheimer Europe reports on the legal provisions Alicja Sadowska (Poland) relating to the restriction of the freedom of Research Board discusses the progress Charles Scerri (Malta) movement of people with dementia in Europe of the initiative. Henry Simmons (UK/Scotland) which have been published in the 2011 Dementia 31 Future use of MRI in Europe still in Europe Yearbook. Contact Alzheimer Europe at: threatened by opposition Alzheimer Europe 145, route de Thionville in European Council 14 DECIDE: new tool potentially offers L-2611 Luxembourg Monika Hierath, Alliance for magnetic Tel.: +352 29 79 70 faster access for earlier diagnosis resonance imaging (MRI) Secretariat, Fax: +352 29 79 72 of Alzheimer's disease explains the importance of its work in www.alzheimer-europe.org [email protected] Fulvio Galeazzi, “DECIDE” project coordinator, light of current legislation. speaks with Alzheimer Europe about the 33 Jean Georges, Executive Director European project “DECIDE” and how it can National dementia plans: Annette Dumas, EU Public Affairs Officer help people with dementia and their carers. France and Luxembourg Julie Fraser, Editor Florence Lustman, General Inspector of Dianne Gove, Information Officer Finances and Vice-Chair of the Foundation Gwladys Guillory, 16 The ethics of dementia research for the Scientific Coordination of the French Event and Conference Coordinator Alzheimer Europe provides an overview of the Alex Teligadas, Communications Officer Alzheimer Plan, reflects on the progress Grazia Tomasini, Administrative Assistant newly published report “The Ethics of Dementia achieved in implementing the current plan and Research” which provides a detailed discussion Mars di Bartolomeo, Luxembourg Minister of some of the main ethical issues linked to of Health, talks about the development of carrying out dementia research. a national dementia strategy in Luxembourg. DEMENTIA Issue 10 IN EUROPE February 2012 TABLE OF CONTENTS THE ALZHEIMER EUROPE MAGAZINE 41 The view from Denmark 53 Living with dementia in Romania The key challenges that people with Ramona Amariei, from Romania, talks about dementia and their carers face in Denmark her experience of caring for her mother, are considered by Ole Christensen, MEP who has Alzheimer’s disease. (Denmark). 54 Dementia in society Alzheimer Europe takes a look at how 43 Policy developments dementia is portrayed in the media. A round up of recent policy developments in the field of dementia. SPECIA sec L SP TION OTLIGHT ON ALZH E EIme Dementia in the news ST UR R 21 co OPE’S Nfe RENce 46 World Alzheimer’s Day st A snapshot of the celebrations of the 2011 Alzheimer Europe’s 21 Conference World Alzheimer’s Day by national Alzheimer in Poland associations. II Polish conference stresses the importance of solidarity 48 Members’ news with people with dementia Alzheimer Europe reports on some of the Highlights from the 21st Alzheimer Europe recent activities carried by national Alzheimer conference where more than 470 delegates associations in Denmark, France, Germany, from nearly 40 countries came together Italy, Malta, Portugal and the UK. in Warsaw, Poland. VI People with dementia speak out 49 Putting a face to commitment Alzheimer Europe reports on the keynote A look at the recognition given to people speeches given by Archie Latta, Helga Rohra who work in the field of dementia as well as and Marek Romecki during the plenary new appointments in Alzheimer Europe session “The Value of Diagnosis”. member associations. VIII Feedback on the conference 50 Austerity measures in Ireland by people with dementia Photo credits and Greece People with dementia share their thoughts European Parliament, European Commission, on the conference and Archie Latta reports Alzheimer Europe, Heike von Lützau-Hohlbein Maurice O’Connell, Chief Executive Officer by Heinz Schwarz, Marie-Odile Desana back to the Scottish Dementia Working Group of the Alzheimer Society of Ireland and by Elysée, Frédérique Ries by Fabrice Debatty on his trip to Warsaw. Professor Magda Tsolaki, the President of Layout the Panhellenic Federation of Alzheimer’s binsfeld corporate X Climbing Seven Summits disease and related disorders consider for Alzheimer’s disease Print the consequences for people with dementia Mountaineer and carer Alan Arnette discusses Imprimerie Centrale, Luxembourg and national associations of recent austerity his motivation for and success of his measures put in place in their respective campaign to raise awareness and funds for countries. the disease. WELCOME Welcome Alzheimer Europe has enjoyed a particularly Initiative. Also, we hear about the health agenda busy few months! Our 21st Annual Conference in for the EU during the Danish Presidency from Poland in October attracted over 470 participants Astrid Krag, the Danish Minister for Health. from 40 countries and we hope you enjoy reading about the various presentations in our dedicated The situation for people with dementia and their conference section. carers in Denmark is considered by Ole Christensen MEP, (Denmark). An update on the status of the In December, Alzheimer Europe organised its 11th national dementia strategy in France is provided lunch debate in the European Parliament which by Florence Lustman, Vice-Chair of the Foundation was hosted by Frieda Brepoels, MEP (Belgium). for the Scientific Coordination of the French It concentrated on the launch of the Value of Alzheimer Plan and in Luxembourg by Mars Knowing survey in five languages (English, French, di Bartolomeo, Luxembourg Minister for Health. Heike von Lützau-Hohlbein German, Polish and Spanish). The debate was im- Chairperson of Alzheimer Europe portant and useful in helping us to understand With the economic crisis deepening drastic cuts that there is an overwhelming willingness by the are being made. At the same time, the need for general public to confront Alzheimer’s disease and support and services is increasing. Professor Magda to get a diagnosis despite the fear of the condition. Tsolaki from Greece and Maurice O’Connell from Ireland talk about how austerity packages are Since the last issue of the magazine, Alzheimer impacting people with dementia in their countries. Europe has published two reports: The 2011 Dementia in Europe Yearbook which focuses on Our Dementia in the News section includes the legal provisions relating to the restriction of the highlights of national Alzheimer’s associations’ freedom of movement of people with dementia and celebrations of World Alzheimer’s Day as well as a the Ethics of Dementia Research, which provides moving article by carer Ramona Amairei from a detailed discussion of some of the main ethical Romania. issues linked to carrying out dementia research in an ethical manner. I am grateful to all those who When we started the Dementia in Europe maga- contributed to these comprehensive publications zine we were concerned about finding sufficient and am sure they will prove invaluable to all who content. Now we are publishing our 10th issue and work in the field of dementia. I think the variety and depth of articles are a clear indication that there is much to be debated and We provide an update on current initiatives at to be done to help people with dementia and European level. Commissioner Neelie Kroes, Vice- their carers. President of the European Commission, explains how the European Innovation Partnership of Active and Healthy ageing initiative can help people
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