In Europe A Look at How Dementia Is Reported and Sabine Henry (Belgium), Vice-Chairperson Portrayed in Literature and the Arts
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issue 5 April 2010 Dementia i n E u r o p E T h E A l z h E i m E r E u r o p E m A g A z i n E Sirpa Pietikäinen highlights the situation of people with dementia in Finland MEPs speak Françoise Grossetête, mEp (France) about the role Brian Crowley, mEp (ireland) of the European Prof. Philippe Amouyel talks about the Joint Programming Alzheimer’s on Alzheimer’s disease Alliance. Mattias Karlsson becomes Chairperson of a local Swedish Alzheimer association Frieda Brepoels, mEp (Belgium) Dagmar Roth-Behrendt, mEp (germany) MEMbErS of thE EuroPEAn parliAMEnt unitE for thE dEMEntiA cAuSE Alzheimer Europe gratefully acknowledges the support of the following MEPs, who have become a member of the European Alzheimer’s Alliance. Audy Aylward Brepoels Cabrnoch Childers Coelho Crowley De Lange Jean-Pierre Liam Frieda Milan Nessa Carlos Brian Esther (France, EPP) (Ireland, ALDE) (Belgium, Greens-EFA) (Czech Republic, ECR) (Ireland, S&D) (Portugal, EPP) (Ireland, ALDE) (Netherlands, EPP) Griesbeck Grossetête Hall Jaakonsaari Jäätteenmäki Kohlícek Jaromír Koppa Kratsa- Nathalie Françoise Fiona Liisa Anneli (Czech Republic, Maria Eleni Tsagaropoulou Rodi (France, ALDE) (France, EPP) (United Kingdom, ALDE) (Finland, S&D) (Finland, ALDE) GUE/NGL) (Greece, S&D) (Greece, EPP) Lulling McAvan McGuinness Mikolášik Mitchell Moraes Morin-Chartier Niebler Astrid Linda Mairead Miroslav Gay Claude Elisabeth Angelika (Luxembourg, EPP) (United Kingdom, S&D) (Ireland, EPP) (Slovakia, EPP) (Ireland, EPP) (United Kingdom, S&D) (France, EPP) (Germany, EPP) Panzeri Peterle Pietikäinen Ries Roithová Roth-Behrendt Schaldemose Simpson Pier Antonio Alojz Sirpa Frédérique Zuzana Dagmar Christel Brian (Italy, S&D) (Slovenia, EPP) (Finland, EPP) (Belgium, ALDE) (Czech Republic, EPP) (Germany, S&D) (Denmark, S&D) (United Kingdom, S&D) Staes Sterckx Toia Triantaphyllides Ulmer Van Nistelrooij De Veyrac Watson Bart Dirk Patrizia Kyriacos Thomas Lambert Christine Graham (Belgium, Greens-EFA) (Belgium, ALDE) (Italy, S&D) (Cyprus, GUE/NGL) (Germany, EPP) (Netherlands, EPP) (France, EPP) (United Kingdom, ALDE) © European Parliament © European Weisgerber Willmott Wortmann-Kool Záborská Anja Glenis Corien Anna (Germany, EPP) (United Kingdom, S&D) (Netherlands, EPP) (Slovakia, EPP) You can make a difference. Join the European Alzheimer’s Alliance today. Dementia issue 5 i n E u r o p E April 2010 taBle oF conTEnTs T h E A l z h E i m E r E u r o p E m A g A z i n E 04 Welcome 28 The View from finland By Maurice O’Connell, Sirpa Pietikäinen, MEP (Finland) talks about Chairperson of Alzheimer Europe the key challenges that face people with dementia and their carers in Finland. Prioritising dementia 30 Eu news round up A brief look at some of the news from the 06 facing dementia together European institutions. The role which the European Alzheimer’s Alliance has, and will continue to play, is 32 Joint Programming on Alzheimer’s considered in four articles from the members disease of the Alliance’s Executive (MEPs Françoise Prof. Philippe Amouyel, Chair of the Grossetête, Frieda Brepoels, Dagmar Roth- Management Board of the Joint Programming Behrendt and Brian Crowley). Initiative on Neurodegenerative diseases, including Alzheimer’s disease, speaks to 11 Ethical dilemmas of assistive Alzheimer Europe about how he hopes the technology Initiative will address some key challenges. The working group on assistive technology (AT) discusses the ethical implications of using Dementia in the news AT at its meeting in Brussels in March. Alzheimer Europe board 38 Dementia in Society Maurice O’Connell (Ireland), Chairperson 13 healthcare decision making in Europe A look at how dementia is reported and Sabine Henry (Belgium), Vice-Chairperson portrayed in literature and the arts. Sigurd Sparr (Norway), Honorary Secretary for people with dementia Heike von Lützau-Hohlbein (Germany), Alzheimer Europe carried out an inventory of Honorary Treasurer national laws on healthcare decision making 40 Living with dementia Iva Holmerová (Czech Republic) A carer from Spain speaks with the Spanish Neil Hunt (UK) in 31 European countries. This article is an Pekka Laine (Finland) overview of its findings, which were published Alzheimer Association, Confederación Patrick Maugard (France) in the 2009 Dementia in Europe Yearbook. Española de Familiares de Enfermos de Alicja Sadowska (Poland) Alzheimer y otras Demencias (CEAFA), about Charles Scerri (Malta) Marc Schaefer (Luxembourg) 18 improving the drug development his experience of caring for his wife who had Maria do Rosário Zincke dos Reis (Portugal) process in Europe Alzheimer’s disease. Alzheimer Europe takes a look at the new contact Alzheimer Europe at: and exciting European project known as 43 Spotlight on Greece Alzheimer Europe “PharmaCog” which hopes to improve the The Greek Association of Alzheimer’s 145, route de Thionville disease and related disorders celebrates its L-2611 Luxembourg process of drug development. Tel.: +352 29 79 70 th 15 anniversary this year. Nina Kotras, Fax: +352 29 79 72 Executive Director, speaks of the highlights www.alzheimer-europe.org and hopes she has for the Association. www.dementia-in-europe.eu Policy Watch [email protected] 20 Developing national dementia plans 46 Putting a face to commitment Alzheimer Europe reports on the appointment Jean Georges, Executive Director across Europe Annette Dumas, EU Public Affairs Officer We speak with Charles Scerri (Chair of the of Thierry Jarlet (as Director General, Julie Fraser, Editor National Dementia Strategy Group in Malta), France Alzheimer) and of Mattias Karlsson Dianne Gove, Information Officer (as Chairman of the Dalarnas Iän Association, Gwladys Guillory-Hickey, Grazia Tomasini, Antigoni Diakou (President of the Pancyprian Administrative Assistants Alzheimer Association), Dr Christos Patsalides Sweden) as well as the departure of Neil Hunt (Minister of Health, Cyprus) and Teresa Caeiro (former Chief Executive of the Alzheimer’s Society, UK). (MP, Portugal) about progress made in their Photo credits country to create a national dementia plan. European Parliament, European Commission, Alzheimer Europe (by Gwladys Guillory-Hickey) 26 “Alzheimer’s disease: What policies?” Layout Alzheimer Portugal reports on its recent binsfeld corporate conference in Lisbon. Print Imprimerie Centrale, Luxembourg welCome WElcoME Alzheimer Europe is extremely grateful to mentia in Europe Yearbook, in which we receive support from the passionate and dedicated consider the differences and similarities found MEPs who make up the European Alzheimer’s between Member States with regard to health Alliance. In this issue, the determination of care decision making (for consent, access to the executive members of the Alliance to keep information and diagnosis, advance directives Alzheimer’s disease on the European agenda is and end-of-life issues) for people with dementia. clear. The Chairperson of the Alliance, Françoise Grossetête, highlights the recent activity taken to Alzheimer Europe has long advocated the estab- put dementia on the European agenda and the lishment of national dementia plans and it is role which the Alliance has played in doing so. wholly encouraging to be able to bring you Frieda Brepoels explains how the Alliance has reports on the ongoing discussions to do just this. played such a crucial role in the last Parliamentary In this regard, we hear from Charles Scerri, maurice o’Connell chairperson of Alzheimer Europe session, highlighting the need to call upon the (Chair of the National Dementia Strategy Group recently appointed Commissioners Dalli, Andor in Malta), Teresa Caeiro (MP, Portugal), Antigoni and Geoghegan-Quinn to keep up the momen- Diakou, (President of the Pancyprian Alzheimer tum. Dagmar Roth-Behrendt reminds us that Association) and also Dr Christos Patsalides Member States need to be serious in their efforts (Minister for Health in Cyprus). to address dementia and Brian Crowley explains how the Alliance can work in the future to ensure Sirpa Pietikäinen, MEP, talks about the situa- that the goals set out in Alzheimer Europe’s Paris tion for people with dementia and their carers in Declaration are implemented in a timely fashion. Finland and we also hear how carers and people with dementia in Greece have benefitted from the I am delighted at the European level of activity work of the Greek Association of Alzheimer’s dis- surrounding Alzheimer’s disease over the past ease and related disorders in the anniversary arti- year and that we are able to bring to you an inter- cle by Nina Kotras, Executive Director of the As- view with the Chair of the Management Board of sociation. the current European pilot Joint Programming Initiative, Professor Philippe Amouyel. With Finally, this issue carries a very honest and 24 countries already agreeing to participate in heart-wrenching account of how it can feel to be a this Initiative, Professor Amouyel speaks of the carer of someone with dementia. Reading this emerging need for Member States to ensure that article brought it home to me just how essential their budgets be spent on common objectives and the work which Alzheimer associations carry out in an integrated way. is, in particular, how crucial it can be that the support and the opportunity to have someone to We bring you up to date with two of Alzheimer talk to are available as the journey with dementia Europe’s 2010 projects, including the partnership is taken. between the European Commission and European Federation of Pharmaceutical Industries and Associations (Pharmacog) and also the continued development of the Dementia Ethics Network project. We also give an overview of our 2009 De- Maurice O’Connell, Chairperson 4 Dementia issue 5 i n E u r o p E April 2010 PRioRitisinG Dementia T h E A l z h E i m E r E u r o p E m A g A z i n E PRioRitisinG dEmEnTiA 2009 Dementia in europe Yearbook healthcare decision making in Europe for people with dementia Dementia in Europe The 2009 Dementia in Europe Yearbook presents the results of the Alzheimer Yearbook 2009 Europe project on healthcare and decision-making in dementia, as well as the 2008 Annual Report of the organisation.