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Marian Harkin Marian Harkin, MEP Hosts Alzheimer Europe Lunch Debate on Dementia As a Priority of the EU Health Programme

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Marian Harkin Marian Harkin, MEP Hosts Alzheimer Europe Lunch Debate on Dementia As a Priority of the EU Health Programme Issue 29 February 2019 Marian Harkin Marian Harkin, MEP hosts Alzheimer Europe lunch debate on dementia as a priority of the EU health programme Marianne Thyssen Helga Rohra José Luis Molinuevo discusses developments in social looks back on six years with the EWGPWD delivers the keynote lecture at the 28th affairs at an EU level Alzheimer Europe Conference TABLE OF CONTENTS Contents 3 Welcome by Iva Holmerová, Chairperson of Alzheimer Europe Contact Alzheimer Europe Alzheimer Europe 14, rue Dicks L-1417 Luxembourg 4 European Parliament lunch debate focuses on dementia as a priority of the EU health +352 29 79 70 programme +352 29 79 72 7 Alzheimer Europe AGM elects new Board and welcomes two new member organisations www.alzheimer-europe.org 10 Alzheimer Europe hosts the fourth edition of its annual [email protected] Alzheimer’s Association Academy @AlzheimerEurope 12 Comparing dementia strategies across Europe 14 Promoting intercultural dementia care and support in Europe alzheimer.europe Policy Watch 15 Governmental Expert Group on Dementia meets for fi rst time 16 Dementia as a European priority – A timeline of key developments since 2014 17 European Alzheimer’s Alliance members share their thoughts on making dementia a European priority Alzheimer Europe Board 20 Alzheimer Europe launches European Dementia Pledge for the European Parliament Chairperson: Iva Holmerová (Czech Republic) Elections – Get involved! Vice-Chairperson: Charles Scerri (Malta) 21 European Institutions reach agreement over European Accessibility Act Honorary Secretary: Jim Pearson (UK – 22 Commissioner Marianne Thyssen speaks to Alzheimer Europe about the progress of Scotland) key social reforms at an EU-level Honorary Treasurer: Maria do Rosário Zincke 24 The Innovative Medicines Initiative celebrates ten years of breakthroughs dos Reis (Portugal) Members 27 German Government commits to developing national dementia strategy Helen Rochford-Brennan, Chairperson of the European Working Group of People with Dementia in Society Dementia (Ireland) Stefanie Becker (Switzerland) 28 Helga Rohra refl ects on her time giving a voice to people with dementia in Europe Marco Blom (Netherlands) 30 Flanders forms a working group of people with dementia Sabine Jansen (Germany) Pat McLoughlin (Ireland) 32 Fostering multidisciplinary exchange towards person-centred dementia care Sirpa Pietikäinen (Finland) 34 Public opinion overwhelmingly against French decision to stop reimbursing Jesús Rodrigo (Spain) Alzheimer’s drugs Karin Westerlund (Sweden) 36 A look behind the headlines: The promise and reality of AI predicting AD Sta Spotlight on 28AEC Jean Georges, Executive Director Christophe Bintener, Project Offi cer 38 Alzheimer Europe Conference held in Barcelona under the banner “Making dementia a Cindy Birck, Project Offi cer European priority” Kate Boor Ellis, Communications Offi cer Ana Diaz, Project Offi cer 40 Alzheimer Europe Conference plenaries focus on policy, human rights, care and research Dianne Gove, Director for Projects 46 Snapshots of #28AEC Gwladys Guillory, Event and Conference 47 European Working Group of People with Dementia begins fourth term of offi ce Coordinator 48 Congratulations to the winners of the poster awards! Owen Miller, Policy Offi cer 50 Facts and fi gures Stefanie Peulen, Finance Offi cer Grazia Tomasini, Administrative Assistant Layout: The Publishing Bureau Photo credits Innovative Medicines Initiative Jurn Verschraegen Herbert Jennerich, BMFSFJ Alzheimer Europe European Parliament European Commission 2 Dementia in Europe WELCOME Welcome The Policy Watch section presents the fi rst At national level, we look at work being meeting of the newly convened Governmen- done in three countries : Belgium, France tal Expert Group on Dementia, an exciting and Germany . new initiative by Alzheimer Europe, made possible with the support of the Dutch Min- In Germany, the INTERREG-Danube INDEED istry of Health, Welfare and Sport, the Italian project is developing an intervention to sup- Ministry of Health and the Scottish Govern- port occupational collaboration in order to ment. The group was brought together aft er improve care for people with dementia in the initial discussions between these mem- Danube region, Project Coordinator Alexan- bers resulted in agreement that losing the der Kurz and Project Manager Lea Pfäff el tell European Commission Expert Group, dis- us more. banded midyear, would be detrimental. We Iva Holmerová, Chairperson of Alzheimer Europe are delighted that the meeting was so well The Flemish Region of Belgium has its fi rst- I am pleased to welcome you to the 29th edi- attended, with 17 governments represented. ever working group of people with dementia. tion of our Dementia in Europe magazine. Olivier Constant from the Flanders Centre of With the upcoming European elections (May Expertise on Dementia and Hilde Lamers of The fi rst section highlights some of our eff orts 2019), we decided to ask MEPs in the Euro- the Alzheimer’s League Flanders introduce the to ensure dementia remains a European pri- pean Alzheimer’s Alliance about their hopes group. Providing a voice to people with demen- ority, including our recent lunch debate in and plans for the future of the EU. Readers tia and their carers is an important part of what the European Parliament, which focused on can also fi nd out what is happening with the we do and groups like this are of paramount dementia as a priority of the EU health pro- European Accessibility Act and the Work -Life importance to ensure their voices are heard. gramme. During the debate, Geoff Huggins, Balance provisions associated with the Euro- Director of Health and Social Care Integration pean Social Pillar in two further articles. For In France, an overwhelming majority of the at the Scottish Government presented the the latter, we spoke to Commissioner for public disagreed with the government’s deci- work of the second European Joint Action on Employment, Skills, Social Aff airs and Labour sion to stop reimbursing anti-dementia drugs. dementia and Jean Georges, Executive Direc- Mobility, Marianne Thyssen. France Alzheimer tried hard to have this deci- tor of Alzheimer Europe, gave an overview sion reversed, via a campaign, supported by of some of the work taking place at a Euro- Also at European level, representatives of the Alzheimer Europe, and a national survey, con- pean level, including some of the policy and Innovative Medicines Initiative (IMI), which ducted together with the Société Française de legislative drivers from the European Union. celebrated its 10th anniversary in 2018, spoke Neurologie (SFN) and the Fondation pour la Additionally, he highlighted some aspects to us about some achievements to date and recherche sur Alzheimer. We asked Prof. Bruno of Alzheimer Europe’s work, including our about Alzheimer Europe’s involvement in IMI Dubois to tell us more about the results of annual publications, the 2018 editions of projects. the survey and the impact of this controver- which are also presented in this fi rst section. sial government decision. I would like to thank our lunch debate host Finally, on the national policy front, we have MEP Marian Harkin (Ireland) and MEPs Heinz heartening news from Germany, where the Finally, we take a look “behind the headlines”, K. Becker (Austria), Sirpa Pietikäinen (Finland), Federal Government has announced its with Prof. Craig Ritchie and Dr Samuel Danso, Nessa Childers (Ireland) and Deirdre Clune intention to develop a national dementia both from the University of Edinburgh, who (Ireland) for their active participation, as well strategy. comment on recent headlines about Artifi - as MEP Martina Anderson (UK, Northern Ire- cial Intelligence (AI) and its ability to predict land) who was represented at the meeting. In the Dementia in Society section, we speak Alzheimer’s. to Helga Rohra, a founding member and Our recent Alzheimer’s Association Academy the fi rst Chair of the EWGPWD , who has left Our “special section” takes a look back at the is also showcased. National member organisa- the group. Helga has been instrumental in success of our 28th Alzheimer Europe Confer- tions, company representatives and members much of the work done by the group since ence held in Barcelona. Key presentations at of the European Working Group of People with its inception i n 2012 and she will be missed. the opening ceremony and the plenary ses- Dementia (EWGPWD) joined us for the fourth I would like to personally thank her for her sions are covered and we also showcase the edition of this popular annual event and expert hard work, leadership, enthusiasm and ded- contributions of people with dementia at the speakers from various European and national ication during her six years of service and for conference. organisations presented on topics chosen by her continuing important contributions to a survey of previous participants. the fi eld of dementia. Happy reading! Dementia in Europe 3 ALZHEIMER EUROPE European Parliament lunch debate focuses on dementia as a priority of the EU health programme Alzheimer Europe and the European Alzheimer’s Alliance organised a lunch debate in the European Parliament, hosted by Marian Harkin, MEP. Alzheimer Europe held its final lunch debate were living with dementia in EU Member of 2018 in the European Parliament on 4 States. Ms Harkin noted that with no cure December 2018, which focused on the topic currently available, better policies and inter- of “Dementia as a priority of the EU health ventions were key
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