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José Manuel Barroso, President of the European Commission, Discusses Issue 16 February 2014 SPOTLIGHT on Alzheimer Europe’s 23 conference inrd Malta Michel Goldman talks about the Innovative Medicines Initiative Adriana Maggi discusses the progress of the JPND initiative José Manuel Barroso, President of the European Commission, discusses how Europe Joseph Cuschieri hosts a lunch debate on the can help people with dementia European Dementia Monitor POLICYTABLE WATCHOF CONTENTS 04 Welcome Policy Watch by Heike von Lützau-Hohlbein, Chairperson of Alzheimer Europe 26 EC President Barroso discusses the challenges of dementia President Barroso explains how the EU helps Prioritising Dementia people with dementia Alzheimer Europe Board Heike von Lützau-Hohlbein (Germany), 06 Comparing and benchmarking 29 JPND tackles neurodegenerative Chairperson Iva Holmerová (Czech Republic), national dementia policies diseases Vice-Chairperson Maltese MEP Joseph Cuschieri hosts Vice-Chair Adriana Maggi describes current Maria do Rosário Zincke dos Reis (Portugal), Alzheimer Europe lunch debate and future JPND activities Honorary Treasurer Charles Scerri (Malta), Honorary Secretary 10 MEPs speak out on dementia 35 IMI - addressing challenges Helga Rohra (European Working Group 31 Members of the European Parliament in drug development of People with Dementia, EWGPWD) express their views on dementia Executive Director Michel Goldman gives an Patrick Maugard (France) Maurice O’Connell (Ireland) update on IMI’s joint EU-EFPIA projects Sirpa Pietikäinen (Finland) 18 Alzheimer Europe presents 2013 Alicja Sadowska (Poland) 38 Henry Simmons (UK/Scotland) Dementia in Europe Yearbook The view from Greece: New edition features dementia prevalence Minister of Health Adonis figures for 33 countries Georgiadis Contact Alzheimer Europe at: Minister Georgiadis comments on EU and Alzheimer Europe 14, rue Dicks 22 AGE Platform Europe promotes local efforts to help Greeks with dementia L-1417 Luxembourg dementia-friendly communities Tel.: +352 29 79 70 Anne-Sophie Parent, Secretary General of 40 Fax: +352 29 79 72 Report from the G8 Dementia www.alzheimer-europe.org AGE Platform Europe, talks about the new Summit [email protected] “AFE INNOVNET” project of which Alzheimer Heike von Lützau-Hohlbein gives a personal Europe is a partner. account of the London summit Jean Georges, Executive Director rd Ana Dias, Project Officer 23 Perceptions and portrayal of 42 Evaluation of the 3 French Annette Dumas, EU Public Affairs Advisor Kate Ellis, Communications Officer dementia Alzheimer plan Julie Fraser, Editor, Dianne Gove, Director of Projects at Prof Joël Ankri gives an objective view Dianne Gove, Director for Projects Alzheimer Europe, reports on the work of of the French dementia strategy Gwladys Guillory, the European Dementia Ethics Network Event and Conference Coordinator Stefanie Peulen, Finance Officer 44 Portugal advances toward a Alex Teligadas, Director for Communication national dementia strategy Grazia Tomasini, Administrative Assistant Dr Álvaro de Carvalho, Director of the National Mental Health Programme, aims for a pathway to timely diagnosis 2 TABLE Issue 16 OF CONTENTS February 2014 SPOTLIGHT on Alzheimer Dementia in the news Europe’s 23 conference inrd Malta 48 World Alzheimer’s Day 2013 Alzheimer Europe’s member associations commemorate WAD 50 Country focus: Norway Ingrid Fry, Communications Advisor of the Alzheimer Europe’s 23rd Norwegian Health Association, looks back Conference in Malta at the 2013 telethon that raised millions for dementia II AE Conference sets ambitious goals Maltese and EU officials open the 52 Living with dementia conference with optimism in the Czech Republic Nina Balác˘ková describes her remarkably IV Living well in a active life with dementia dementia-friendly society The conference focused on integrated care, prevention and dementia-friendly societies VIII Snapshots from Malta X EWGPWD: active participation of people with dementia The European Working Group of People with Dementia operated a stand and organised a special symposium during the conference XII Demographics of a successful conference Photo credits Conference gets high ratings from European Parliament, European Commission, Alzheimer Europe, Heike von Lützau-Hohlbein 529 delegates from 44 countries by Heinz Schwarz. Layout binsfeld corporate Print Imprimerie Centrale, Luxembourg 3 POLICY WATCHWELCOME Welcome This issue of Dementia in Europe magazine will ap- Dementia Conference in London. The outcomes pear during our first 2014 lunch debate at the Euro- from this meeting appear to be very positive; in pean Parliament – which will also be the last de- fact I was surprised to realise how far we have come mentia debate in the current Parliament. I would since I became involved with dementia many years like to thank all 71 MEPs of the European Alzhei- ago. mer’s Alliance for their support, particularly their efforts to bring the challenges of dementia to the On the scientific front, we are pleased to include forefront over the past five years. You can read interviews with representatives from both JPND about these efforts in the following pages, as over and IMI. Adriana Maggi, Vice Chair of the JPND 30 MEPs kindly responded to our request for high- Management Board, explains how the programme lights of their achievements and future priorities. supports projects and how patient and carer Heike von Lützau-Hohlbein organisations can participate in its work. Michel Our last lunch debate was hosted by Joseph Goldman, Executive Director of IMI, talks to us Cuschieri, MEP (Malta) and was dedicated to a pres- about IMI’s continuing efforts to address entation of the European Dementia Monitor – a challenges in drug development. Alzheimer Europe benchmark of national dementia policies. This is is currently involved in three IMI projects, namely one of Alzheimer Europe’s new publications, along Aetionomy, EMIF and PharmaCog. with the 2013 Yearbook that showcases national policies relating to the care and support of people This issue also carries a special section on the 23rd with dementia and their carers. I would like to Alzheimer Europe Conference, which took place in thank Mr Cuschieri for his time and effort, especial- Malta in October 2013. Looking back, I am still over- ly as he was also an active supporter of our recent whelmed by the relevance and quality of the pres- annual conference in Malta. entations, as well as the dedication and enthusiasm of the delegates that made this conference a great I am also very grateful to Mr José Manuel Barroso, success. President of the European Commission, who found the time to speak about how the EU is helping peo- On behalf of all the Board and staff members of ple with dementia. Mr Barroso clearly states that Alzheimer Europe, I would like to wish our readers a the EU is always keen to help member states re- very healthy and productive 2014. We look forward solve their health issues, including the rising finan- to seeing you at our lunch debates, public affairs cial and societal costs of dementia. meetings and at the 24th Alzheimer Europe Confer- ence in Glasgow. These concerns are not limited to Europe. Last De- cember, I was fortunate enough to attend the G8 4 PRIORITISING Issue 16 DEMENTIA February 2014 Prioritising Dementia Joseph Cuschieri, MEP (Malta), hosts Alzheimer Europe’s 15th lunch debate Anne Sophie Parent discusses 33 Members of the European Parliament speak out on dementia the “AFE INNOVNET” project 06 Comparing and benchmarking national dementia policies 10 Members of the European Parliament speak out on dementia 18 Alzheimer Europe presents the 2013 Dementia in Europe Yearbook 22 Promoting age-friendly and dementia-friendly communities across the EU 23 The perceptions and portrayal of dementia 5 POLICYPRIORITISING WATCHDEMENTIA Comparing and benchmarking national dementia policies On 3 December 2013, Joseph Cuschieri, MEP (Malta) and member of th Joseph Cuschieri the European Alzheimer’s Alliance, hosted Alzheimer Europe’s 15 lunch debate which was dedicated to a presentation of the “European Dementia Monitor”. Joseph Cuschieri welcomed all 40 participants – European Dementia Monitor including fellow MEPs Anneli Jäätteenmäki (Fin- land) and Marina Yannakoudakis (UK) – to this Jean Georges (Executive Director, Alzheimer “All have a part debate. Delighted to be hosting this event, he Europe) thanked Joseph for his support. He to play: citizens explained that his being a member of the European explained that the aim of European Dementia need to be informed Alzheimer’s Alliance is an important part of his Monitor (EDM) is to benchmark national dementia and aware, work. Dementia is a challenge for all EU Member policies which will help lobbyists to compare, on a States: over seven million Europeans live with regular basis, various issues for people with demen- EU institutions dementia and there are some 21 million informal tia both at EU and national levels. and national carers. The cost of formal and informal care per governments need to patient per year is estimated to be EUR 21,000. The The EDM offered an exciting new way to work as collaborate.” impact of this complex disease is vast and with no Alzheimer Europe and national Alzheimer associa- known cure, ways at delaying the onset and tions had collaborated alongside pharmaceutical improving the quality of life of people with demen- companies. Jean acknowledged the general support JOSEPH CUSCHIERI tia need to be pursued. of GE Healthcare, GlaxoSmithKline, Janssen, Lilly, Nutricia, Pfizer and Sanofi and particular support in It is imperative to address both the stigma associ- data provision by Lundbeck, Merz and Piramal. ated with the disease and the fact that the treat- ment and care of people with dementia differs The EDM is based on data from existing, well- between EU Member States. All have a part to established and trust-worthy sources. Comparable play: citizens need to be informed and aware data is a challenge and, to overcome this, the EDM while EU institutions and national governments is based on a simple point system which will enable need to collaborate. Policy makers and practioners the results to be presented in a simple and clear need to be informed and enlightened and the lunch table.
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