Issue 21 December 2015 SPOTLIGHT on Alzheimer Europe’s 25th conference in Ljubljana Alain Berset Swiss Federal Councillor, presents Switzerland’s national dementia strategy Pierre Meulien takes up office as IMI Executive Director Lydia Mutsch, Luxembourg’s Minister of Health and Edith Schippers, Dutch Minister of Health, Welfare and Sport discussed EU Joël Jaouen takes the helm of France Alzheimer priorities on dementia TABLE OF CONTENTS 04 Welcome Policy Watch by Heike von Lützau-Hohlbein, Chairperson of Alzheimer Europe 22 MEPs are making dementia a European priority A new Written Declaration calls for a Prioritising Dementia European Alzheimer’s disease strategy 06 AE lunch debate focuses on 24 Dementia, a priority for global action against dementia Luxembourg’s EU Presidency Heinz Becker, MEP (Austria) hosted European health ministers met in AE’s latest lunch debate Luxembourg to discuss dementia priorities 10 AE prepares a new 26 Pierre Meulien takes up office strategic plan as IMI Executive Director AE presented a new strategic plan at IMI will continue to help improve the the 2015 Annual General Meeting lives of people with dementia 12 The Glasgow Declaration 29 Swiss conference focuses on campaign calls for a European the challenges of dementia dementia strategy Europe's German-speaking countries Alzheimer Europe Board The campaign reached individuals, discussed future dementia priorities Heike von Lützau-Hohlbein (Germany), organisations and policy Chairperson Iva Holmerova (Czech Republic), makers in all EU countries 31 Spain advances toward a Vice-Chairperson national dementia strategy Maria do Rosario Zincke dos Reis (Portugal), 14 Honorary Treasurer AE’s ethics working group CEAFA’s survey results will be included Charles Scerri (Malta), produces training aids in a draft national dementia strategy Honorary Secretary for professional carers Helga Rohra (European Working Group The new report targets health of People with Dementia, EWGPWD) 33 France Alzheimer symposium Marie-Odile Desana (France) and social care professionals focuses on policy and research Sabine Henry (Belgium) faced with ethical dilemmas The event highlighted the James Pearson (UK-Scotland) Sirpa Pietikäinen (Finland) impact of technology on disease Jesus Rodrigo (Spain) 16 AE’s 2015 Yearbook detection and diagnosis Štefanija Lukicˇ Zlobec (Slovenia) explores dementia-friendly Contact Alzheimer Europe at: initatives in Europe Alzheimer Europe 33 organisations from 31 countries 14, rue Dicks provided input to this report L-1417 Luxembourg Tel.: +352 29 79 70 Fax: +352 29 79 72 18 AE: an active partner in www.alzheimer-europe.org European projects [email protected] AE reports on the progress of several EU-funded research projects Jean Georges, Executive Director Vanessa Challinor, Policy Officer Ana Diaz, Project Officer Kate Ellis, Communications Officer Dianne Gove, Director for Projects Gwladys Guillory, Event and Conference Coordinator Stefanie Peulen, Finance Officer Alex Teligadas, Director for Communication Grazia Tomasini, Administrative Assistant 2 TABLE OF CONTENTS Dementia in the news SPOTLIGHT on Alzheimer Europe’s 25th 36 Joël Jaouen takes the helm conference in of France Alzheimer Ljubljana The association’s role to support people with dementia remains at the forefront 38 Birgitta Martensson leaves the Swiss Alzheimer Association Alzheimer Europe’s 25th Birgitta looks back at 15 years of Conference in Ljubljana tenure as Executive Director 50 AE conference opens with 40 World Alzheimer’s Day 2015 ambitious objectives AE and its member associations The 25th Alzheimer Europe commemorate World Alzheimer’s Day Conference opened under the theme “Dementia: putting strategies 42 Putting a face to commitment and research into practice” Highlights of activities of various people in the dementia world 52 Dementia: putting strategies and research into practice 45 ADI releases World Highlights from the plenary sessions Alzheimer Report 2015 of the Ljubljana conference ADI’s new report focuses on the global impact of dementia 56 The EWGPWD at the annual conference The European Working Group of People with Dementia was very active in this year’s conference 58 Snapshots from Ljubljana 61 Winners of the first AE poster awards The Alzheimer Europe Foundation presents the winners of the poster award competition 62 Charts and figures Over 98% of delegates would recommend future AE conferences to their colleagues Photo credits European Parliament, European Commission, Alzheimer Europe, Peter Paniccia Layout The Publishing Bureau 3 WELCOME Welcome The latter half of 2015 has been a busy time for all of Dementia is also on the EU Presidency agenda: us at Alzheimer Europe. I would like to begin by wel- during an informal meeting held in September in coming Vanessa Challinor, our new Policy Officer. Luxembourg, policy makers agreed on the neces- At the same time, I bid farewell to Annette Dumas sity to improve dementia care and that dementia with a great appreciation for her excellent work in will remain a priority for the upcoming Dutch EU keeping us abreast of dementia-related activities Presidency term. This is also the case for funding in the various EU bodies over the past ten years. future dementia research: in June, the Innovative Medicines Initiative (IMI) named Pierre Meulien as AE has now released both of its annual research its new Executive Director and he assures us that publications: the ethics working group has pro- IMI will continue to help improve the lives of peo- duced a training booklet for professional carers, ple with dementia. Heike von Lützau-Hohlbein while the 2015 Yearbook is dedicated to an overview of dementia-friendly initiatives in Europe. There is Also in June, Switzerland hosted a conference of also a special report to celebrate Alzheimer Europe’s Europe’s German-speaking countries to discuss 25th anniversary. the challenges of dementia. I was very glad to par- ticipate in this event, where the Health Ministers In June, Austrian MEP Heinz Becker hosted our lunch from these five countries agreed to strengthen debate on the global efforts that are underway to cooperation in key areas and also, with a further combat dementia – efforts that are now supported 11 nations, to recommend action within the World by many world leaders and include tangible plans Health Organisation. for international cooperation. I am very pleased to see such progress, particularly as a former carer Our member organisations have also, as always, from a time when dementia was virtually unknown been very active. In Spain, a survey conducted or ignored. by CEAFA has led to an official mandate to draft a national dementia strategy. France Alzheimer As you read this, we will be holding another lunch appointed a new president, Joël Jaouen and also debate in Brussels with a focus on European coop- held a conference to explore the influence of eration on dementia. Alzheimer Europe will present research on public policy. The Swiss Alzheimer Asso- the results of its Glasgow Declaration campaign, ciation also has a new Executive Director, namely which calls for a pan-European dementia strategy Stefanie Becker. We wish both Ms Becker and Mr and a national strategy in every country. I would like Jaouen every success in their new roles! This issue to express my profound gratitude to all the individ- also includes a retrospective by Birgitta Martensson, uals from the organisations who worked to gather who recently stepped down after a long tenure as signatures from policy makers, organisations and head of the Swiss association. citizens in their countries. Finally, this issue contains a special section on Our loyal readers will notice that the back cover our 25th Annual Conference in Ljubljana. I am very of this issue differs from the usual invitation to pleased that we succeeded in attracting so many the next AE conference. Exceptionally, we invite all dedicated people who are willing to work together Members of the European Parliament to support the to improve the lives of people with dementia and new Written Declaration to have Alzheimer’s disease their carers in every country in Europe. See you in recognised as a public health priority. We are also Copenhagen in 2016! counting on our member associations to remind their MEPs to sign up before the end of the year. 4 PRIORITISING DEMENTIA Prioritising Dementia MEP Heinz Becker hosted AE’s June lunch debate MEP Sirpa Pietikäinen AE’s new strategic plan was presented at the 2015 Annual General Meeting gave closing remarks at the lunch debate 06 AE lunch debate focuses on global action against dementia 10 AE prepares a new strategic plan 12 The Glasgow Declaration campaign calls for a European dementia strategy 14 AE’s ethics working group produces training aids for professional carers 16 AE’s 2015 Yearbook explores dementia-friendly initatives in Europe 18 AE: an active partner in European projects PRIORITISING DEMENTIA AE lunch debate focuses on global action against dementia On 30 June 2015, Austrian MEP Heinz Becker hosted an Alzheimer Europe lunch debate entitled “The World Health Organisation and the World Dementia Council and global action on dementia: what role for the European Union?” in the European Parliament MEP Heinz Becker with fellow Austrians Monika Natlacen (L) and Antonia Croy “The global view is Mr Becker welcomed the participants and also Dementia clearly has a huge economic impact, the next step from gave a special mention to his fellow MEP Sirpa Pie- which was estimated in 2010 at USD 604 billion tikäinen (Finland) as “a driving force in improving or EUR 545 billion. This amounts to 1% of global the European view care for people with dementia.” Ms Pietikäinen is GDP (gross domestic product), making dementia and the reverse is a Vice-Chairperson of the European Alzheimer’s Alli- the equivalent of the world’s 18th largest economy. true as well: we can ance (EAA) and also sits on the Alzheimer Europe In economic terms, these costs are unevenly dis- Board.