APRIL 2017 ALZHEIMER EUROPE TABLE OF NEWSLETTER CONTENTS HIGHLIGHTS IN THIS ISSUE 25 Mar: EU turns 60, Lancet journal looks at its health record 7 6 Apr: AE publishes new Dementia in Europe magazine 2 01 Welcome 18 Apr: AMYPAD project launches its website 4 26 Apr: AE signs joint letter on relocation of EMA 3 02 26 Apr: Commission releases European Pillar of Social Rights 8 Alzheimer Europe 30 Apr: Call for abstracts closed for 27AEC 3 03 EU projects WE LCOME 05 At the end of March, Europe Internal Market Committee (IMCO) on the Alzheimer Europe celebrated the 60th European Parliament report on the Networking anniversary of the signing of Accessibility Act, it was only adopted by a the Treaties of Rome - the narrow majority and almost all amendments 06 birth of the EU. The Lancet proposed by the disability movement (led by European Alzheimer’s journal published an excellent the European Disability Forum together with Alliance editorial to mark the occasion, looking at its members, including AE, and partners) 07 the EU’s achievements in the area of public were rejected. EU developments health as well as some areas for To keep up to date with European policy improvement. It is a timely reminder, under news and other aspects of dementia in 09 the shadow of Brexit and with increasing Europe, I recommend reading our latest Members’ news support for extremist parties across Europe, “Dementia in Europe” magazine. Issue 24 of the importance of continued came out this month. You can find out how 13 collaboration and investment in health. On to get your copy in the AE news section of Policy watch the subject of Brexit, there is uncertainty this newsletter. I would like to express my about the future of the European Medicines’ 15 gratitude to all those who contributed. Agency, which will have to relocate from its Behind the headlines On the conference front, we have just current home in London. It is likely that a closed the call for abstracts for the 27th 16 decision on the new location will be taken Alzheimer Europe Conference (27AEC) and Science watch by the EU’s heads of state in June, so am delighted to report that we have close to together with other civil society 400 abstracts, which I am sure will make for 19 organisations, we have sent a letter to the another exciting and diverse event. The call Living with dementia Commission and the Council, drawing for the German sessions remains open until attention to some important aspects to be 26 April. 20 considered, with particular emphasis on Finally, also on the subject of Annual Dementia in society facilitating the involvement of patients and Conferences, I would like to congratulate consumers and on facilitating safe and easy our friends at ADI on another successful 21 travel for external experts. New Publications and conference, this year in Kyoto, Japan. I was Also on the European policy front, we were resources unable to attend, but AE Board member pleased to see that the Commission has Stefanie Becker represented us at the 22 released the European Pillar of Social Rights, Elected Board and Council meetings and AE calendar 2017 to drive the future of EU social policy. One EWGPWD Vice Chair Chris Roberts was a of its principles focuses on “Work-Life speaker. We look forward to hearing more 22 balance for working parents and carers”, an about his experience in next month’s issue! Conferences 2017 ambitious and comprehensive proposal. On Jean Georges a less positive note, in a final vote in the Executive Director 1 APRIL 2017 ALZHEIMER EUROPE About the Dementia in Europe magazine “Dementia in Europe” magazine appears in print twice per 6 April: Alzheimer Europe publishes new year with a circulation that varies between 2,600 and 3,500. It Dementia in Europe magazine is distributed to all the Members of the European Parliament (MEPs) and many high-level decision makers in the European On 6 April, Alzheimer Europe (AE) Commission, among others. published the 24th edition of its “Dementia in Europe” magazine. Past issues can be freely downloaded. In issue 24 of the magazine, Hon Dr For further information Justyne Caruana, MP, Parliamentary Please contact Communications Officer Kate Boor Ellis on Secretary for Rights of Persons with [email protected] or Policy Officer Disability and Active Ageing, discusses Vanessa Challinor on Vanessa.Challinor@alzheimer- how Malta is addressing dementia during europe.org. the current Maltese EU Council 6 April: Alzheimer Europe presents European Presidency, Herta Adam of the European Commission talks Dementia Monitor about addressing dementia at the European level and AE was invited to present the Professor Michal Novak discusses plans for a national results of the upcoming dementia strategy for Slovakia. You can also read about the publication “The European 2016 Slovak EU Presidency and its conference on Alzheimer’s Dementia Monitor” at a meeting of the informal coalition of disease, while at a global level, we look at what has happened Civil Society Organisations (CSO’s) working on long term care so far with the World Health Organization (WHO) Global (LTC) and informal care (IC) hosted by Eurodiaconia. Action Plan on the Public Health Response to Dementia and ask Alzheimer’s Disease International (ADI) to comment on this The Dementia Monitor is intended as a tool to allow policy initiative. makers to identify both gaps and best practices, in order to improve care and support of people with dementia and their In our own news, you can take a look at our recent lunch carers all over Europe and to give national associations a debate at the European Parliament in Brussels, discussing the means to lobby for change within Member States by results of the European Dementia Monitor and the reactions comparing their country to others. of the MEPs who attended. We present our new Board and Chairperson, two new member associations from Albania and The ageing population and increasing numbers of people living Hungary, our 2016 Yearbook on legal capacity in dementia and with dementia is one of the greatest social and economic our discussion paper on ethical issues linked to the changing challenges facing Europe today. Being able to benchmark and definitions/use of the term Alzheimer’s disease. use comparative figures is essential to create the need for more awareness on a political level. We are also pleased to showcase three new EU projects in which we are involved: AMYPAD (Amyloid imaging to prevent Also present at the meeting was Daniel Molinuevo (Eurofound) Alzheimer’s disease), MOPEAD (Models of Patient Engagement who presented the draft version of a report on private for Alzheimer’s disease) and ROADMAP (Real world outcomes provision in care homes – “The role of the private providers in across the Alzheimer’s disease spectrum for better care: multi- nursing and residential care services”. Eurofound wanted to modal data access platform). gather the input of other CSOs for the report. In particular, about the EU policy context section and the concluding In the society section, we congratulate the European Working remarks about the European Semester and the Group of People with Dementia (EWGPWD) on receiving the deinstitutionalisation debate at the EU level. “Mano Amiga” - a prestigious international award. Also in this section, one of the group’s members, Chris Roberts shares his Policy Officer Vanessa Challinor represented Alzheimer experiences of living with dementia in Wales and discusses Europe. Welsh dementia policy. The Alzheimer Society of Ireland tells 22 April: AE Chairperson presents our ethics us about its recent “Dementia care begins at home” campaign work at a meeting in the Czech Republic and Federazione Alzheimer Italia describes progress thus far in On 22 April, there was a meeting its dementia-friendly community project. In a new spot in this held in Prachatice, a town in the section, we take a look “behind the headlines” with Dr Tom South Bohemian Region of the Russ of Edinburgh University, who discusses media reports Czech Republic, organised by the linking air pollution and dementia. Hospice Providers’ Association. At Last but not least, there is a special "spotlight" section of the this meeting, AE Chairperson Iva magazine dedicated to the 26th Alzheimer Europe Conference Holmerova (pictured) presented (26AEC) in Copenhagen, from 31 October to 2 November 2016. some of our work on ethical issues. You can buy the magazine here. 2 APRIL 2017 25 April: Czech version of online Diagnosis of 30 April: Alzheimer Europe closes call for dementia carers’ survey launched, three abstracts for 27AEC, except for German countries reach target sessions At the end of March, we announced the The call for abstracts for the 27th launch of our online Diagnosis of dementia Alzheimer Europe Conference carers’ survey. The survey had been (27AEC) is now closed for all launched in four out of the five sessions apart from those in participating countries at that time - Finland, Italy, the German. The call for abstracts for Netherlands and Scotland. We are pleased to announce that the german sessions will remain the fifth and final participating country, the Czech Republic, open until 26 April. launched the survey in Czech language during April. We are delighted to have received close to 400 abstracts. The carers’ survey is a project we are working on together with These will be reviewed by the Programme Committee during five of our national member organisations and academic lead, the month of May. the University of Bangor, Wales (UK). It has received financial http://alzheimer-europe.org/Conferences/Berlin-2017 support from the pharmaceutical company Roche. Feedback is being sought from 1,000 informal carers (e.g.