Issue 1 June 2008 DEMENTIA I N E U R O P E THE ALZHEIMER EUROPE MAGAZINE Fighting dementia together Françoise Grossetête explains how dementia is finally being made a European priority. Demystifying Dementia A closer look at media reporting on Alzheimer’s disease “the goal has been set … discover or validate a diagnosis or treatment within 5 years.” Florence Lustman talks about Is the dementia epidemic preventable? the French Alzheimer Plan Discussion with Professor Lutz Frölich in the European Parliament AE_NWL_0108.indd 1 6/19/08 3:59:19 PM 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 AE_NWL_0108.indd 2 6/19/08 3:59:24 PM DEMENTIA Issue 1 IN EUROPe June 2008 TABLE OF CONteNtS ACT NOW THe ALZHeIMeR EUROPe MaGaZINe Remember those who cannot 6.1 million people have dementia in Europe 03 Welcome 24 English Dementia Strategy about By Maurice O’Connell, to become a reality Chair of Alzheimer Europe Neil Hunt, Chief Executive of the Alzheimer Society describes the progress of the English Dementia Strategy Prioritising dementia 26 Protecting people with dementia across borders 06 A new vision for dementia A closer look at the Hague Convention on Prioritising the needs for people with the International Protection of Adults Alzheimer Europe Board dementia and their carers Maurice O’Connell (Ireland), Chairperson 28 Policy Overview Sabine Henry (Belgium), Vice-Chairperson 08 Fighting Dementia Together A roundup of policy developments in the EU Sigurd Sparr (Norway), Honorary Secretary Heike von Lützau-Hohlbein (Germany), Françoise Grossetête talks about how Honorary Treasurer the European Alzheimer’s Alliance is making Iva Holmerovà (Czech Republic) dementia a European priority Neil Hunt (UK) Pekka Laine (Finland) Dementia in the News Patrick Maugard (France) 11 The European Alzheimer’s Alliance Alicja Sadowska (Poland) in Action 32 Demystifying Dementia Charles Scerri (Malta) Marc Schaefer (Luxembourg) Members of the European Parliament unite A critical look at media reporting of Maria do Rosário Zincke dos Reis (Portugal) for the dementia cause dementia research Contact Alzheimer Europe at: 12 Can the dementia epidemic 36 Dementia in Society Alzheimer Europe be prevented? A roundup of how dementia is reported 145 route de Thionville Lutz Frölich addresses this important and portrayed in literature and the arts L2611, Luxembourg Tel.: +352 29 79 70 question at the Alzheimer Europe lunch Fax: +352 29 79 72 debate in the European Parliament 38 Spotlight on… Switzerland www.alzheimer-europe.org Looking back on twenty years www.dementia-in-europe.eu [email protected] 14 Breaking Barriers of achievements Report on the annual Alzheimer Europe conference from Oslo 39 Putting a face to commitment Jean Georges, Executive Director Annette Dumas, EU Public Affairs Officer The people behind Alzheimer Europe Julie Fraser, Communication Officer Dianne Gove, Information Officer Gwladys Guillory-Hickey, Administrative Assistant Policy Watch 40 Publications 20 France pledges EUR 1.6 billion Photo credits to fight Alzheimer’s disease 42 Forthcoming events European Parliament, European Commission, THE tIME tO ACt IS NOW The French President unveils an ambitious and conferences Alzheimer Europe, Getty Images. Alzheimer’s Plan to address a “real national MAKE DEMENtIA A EUROPEAN PRIORItY Layout drama” binsfeld corporate Print Qatena, Luxembourg AE_NWL_0108.indd 3 6/24/08 6:30:59 AM EDITORIAL WELCOME A warm welcome to Alzheimer Europe’s very We were encouraged by the political interest in fi rst issue of Th e Dementia in Europe magazine. our 18th Alzheimer Europe Conference “Breaking With predictions that the numbers of people with Barriers” in Oslo. In our coverage, we report dementia will be increasing two-fold by 2040, we on the contribution of Florence Lustman, the co- are launching the magazine at a pivotal time: ordinator of the French Plan and the visit of nine Policy makers of today have a rare opportunity to Belgian MPs who attended our conference on a change the course of the predicted epidemic of fact-fi nding mission. Th ey, along with some tomorrow. I believe this magazine to be a unique 620 delegates, were told of the barriers people and informative tool for policy makers in that it is with dementia and their carers face and the im- the fi rst European magazine entirely dedicated to pact barriers can have. Th is message was poi- European policy on dementia. gnantly brought home to the delegates by Jan Henry Olsen, the Norwegian ex-Minister for By creating Th e Dementia in Europe magazine, Fisheries, who was diagnosed with dementia, and, Maurice O’Connell Chairperson of Alzheimer Europe we at Alzheimer Europe aim to raise and main- his wife, Laila Lanes, both of whom gave excep- tain both awareness and interest in dementia tionally direct, brave and memorable speeches. issues, as well as providing up-to-date and thor- ough information. To this end, this edition brings A false representation of dementia itself and of the most recent fi ndings regarding factors which research results in the media can cause unneces- may increase and/or decrease our risk of getting sary hardship for people with dementia and for dementia, which were presented during our their carers. Jean Georges, Alzheimer Europe’s third lunch debate at the European Parliament by Executive Director, takes a critical look at the way Prof. Lutz Frölich earlier on this year. dementia is portrayed in the press. Alexander Kurz of the Technical University in Munich and Practical ways of how we (politicians, organisa- Miia Kivipelto of the Karolinksa Institute in tions and individuals) can help ensure that Stockholm compare the headlines of two newspa- dementia becomes a European priority are given per articles with the reality behind these stories. in “A new vision for dementia” and the impact that can be achieved when Members of the Euro- Conversely, in our Dementia in the News sec- pean Parliament unite is illustrated when tion, we are reminded of the power the media can Françoise Grossetête, the Chair of the European have in helping people to understand the impact Alzheimer’s Alliance, talks about the achieve- that this disease has in fi lms such as Away from ments and hopes for the Alliance. Her and Paul Watson’s documentary, “Malcolm and Barbara: Love’s Farewell”. I am convinced that in 2008, we are witnessing the powerful eff ects political will can have. We trust that you will enjoy this publication. With the far-reaching and ambitious French Together, we can ensure that all the people who Alzheimer’s Plan being implemented and the live and deal with the eff ects of dementia receive English Dementia Strategy being developed, we the best support possible. However, with an consider the detail of each plan and challenges epidemic looming, the time to act is NOW. that lie ahead. Maurice O’Connell, Chairperson 4 AE_NWL_0108.indd 4 6/24/08 6:31:02 AM DEMENTIA Issue 1 IN EUROPe June 2008 THe ALZHeIMeR EUROPe MaGaZINe PRIORITISING DeMeNtIa Breaking Barriers Jan Henry Olsen, ex Fisheries Minister for Norway at the Oslo Conference Françoise Grossetête “It is clear we need to make Alzheimer’s disease a European public health priority.” 06 A new vision for dementia 12 Can the dementia epidemic Prioritising the needs for people with be prevented? dementia and their carers Lutz Frölich addresses this important question at the Alzheimer Europe lunch 08 Fighting Dementia Together debate in the European Parliament Françoise Grossetête talks about how the European Alzheimer’s Alliance is making 14 Breaking Barriers dementia a European priority Report on the annual Alzheimer Europe conference from Oslo 11 The European Alzheimer’s Alliance in Action Members of the European Parliament unite for the dementia cause AE_NWL_0108.indd 5 6/24/08 6:31:08 AM PRIORITISING DEMENTIA A NEW VISION FOR DEMENTIA The political priorities of the European Alzheimer movement Alzheimer Europe and its 31 member organisa- pean Union, the World Health Organisation, the tions adopted the Paris Declaration in 2006 in Council of Europe and national governments to order to identify the action required by all stake- recognise fully the challenge that dementia Action plans are holders in the fight against dementia. To date, presents us with and to take immediate action. urgently needed 70 members of the European Parliament have Action plans on European, international and to develop pledged to support the organisation’s campaign national levels are urgently needed to develop comprehensive to make dementia a European priority. comprehensive strategies and solutions to address the different needs of people with dementia and strategies and The scale of the problem and some issues the their carers. solutions to address Declaration seeks to address are that: the different needs Much can be done in the fight against dementia of people with • 6.1 million people currently live with a form of in the areas of research and medicine. We need to dementia in the European Union address the wide variations in the length of time dementia and their • Every year, 1.4 million people develop dementia it takes to diagnose someone with dementia, carers. in Europe which, in Europe, ranges from 10 months in • Every 24 seconds, a new case of dementia arises Germany to 32 months in the United Kingdom. in the European Union Dementia needs to be a compulsory part of medi- • A diagnosis of Alzheimer’s disease can take up cal training in order that the medical profession to 20 months in Europe is aware of all aspects of the disease. • Only 17% of carers are satisfied with the level of dementia care in their country In addition, awareness campaigns are required • 1 in 5 carers receives no information at diagnosis.