Issue 31 October 2019 Hugo de Jonge Dutch Minister of Health, Welfare and Sport talks about a more dementia- friendly Netherlands Gerjoke Wilmink Debbie Abrahams MP Ellý Katrín Guðmundsdóttir Alzheimer Nederland Executive Director discusses findings of UK inquiry into how people Chairperson of Iceland’s new dementia working reflects on the organisation’s 35 years with dementia are treated, compared with others group talks about what the group means to her supporting people with dementia with disabilities TABLE OF CONTENTS Contents 3 Welcome Contact by Iva Holmerová, Chairperson of Alzheimer Europe Alzheimer Europe 14, rue Dicks L-1417 Luxembourg Alzheimer Europe +352 29 79 70 +352 29 79 72 4 Engaging with members of the European Alzheimer’s Alliance www.alzheimer-europe.org 5 Our involvement in two new projects: AD Detect and Prevent, and VirtualBrainCloud [email protected] 9 Making dementia services and support culturally appropriate @AlzheimerEurope alzheimer.europe Policy Watch 13 Who’s who in the EU? 19 Governmental Expert Group on Dementia discusses national policy developments 22 Data-sharing in dementia research Board 25 Slovenian Prime Minister addresses neurological diseases conference Chairperson: Iva Holmerová (Czech Republic) Vice-Chairperson: Charles Scerri (Malta) Dementia in Society Honorary Secretary: Jim Pearson (UK – Scotland) Honorary Treasurer: Maria do Rosário Zincke 27 Examining the real impact of dementia policy campaigns dos Reis (Portugal) 30 UK inquiry looks at societal barriers for people with dementia Members Helen Rochford-Brennan, Chairperson of 32 Iceland forms a working group of people with dementia the European Working Group of People with Dementia (Ireland) 35 Exploring gene therapy for Alzheimer’s disease Stefanie Becker (Switzerland) Marco Blom (Netherlands) Spotlight on the Netherlands Sabine Jansen (Germany) Pat McLoughlin (Ireland) Sirpa Pietikäinen (Finland) 37 Alzheimer Nederland celebrates 35 years helping people with dementia Jesús Rodrigo (Spain) 41 “Dementia Event” organised for and by people with dementia Karin Westerlund (Sweden) 43 Dutch Health Minister discusses a more dementia-friendly Netherlands Staff Jean Georges, Executive Director 45 Refl ecting on the Deltaplan Dementie Christophe Bintener, Project Offi cer Cindy Birck, Project Offi cer Kate Boor Ellis, Communications Offi cer Angela Bradshaw, Project Offi cer Ana Diaz, Project Offi cer Dianne Gove, Director for Projects Gwladys Guillory, Event and Conference Coordinator Owen Miller, Policy Offi cer Aideen O’Brien, Administrative Assistant Stefanie Peulen, Finance Offi cer Grazia Tomasini, Administrative Assistant Photo credits Morgunblaðið (Iceland) Tadej Bernik (Slovenia) Council of Europe European Commission European Parliament Innovative Medicines Initiative Ministry of Health, Welfare and Sport (Netherlands) 2 Dementia in Europe Layout: The Publishing Bureau WELCOME Welcome the European Parliament elections in May We then turn our attention to Iceland, where 2019 and the appointment of key Commis- a new working group of people with demen- sioners for the next fi ve years. It also includes tia was formed at the start of the year. I an update on the Governmental Expert Group would like to congratulate our colleagues on Dementia, which met for the second time at Alzheimer Iceland for convening this in June 2019. The meeting was attended by group and thank them for paying tribute to representatives from 20 European coun- Alzheimer Europe’s European Working Group tries, as well as work package leads from of People with Dementia (EWGPWD), which the 2nd European Joint Action on Dementia they say was the inspiration for the Icelandic and representatives from the World Health group. You can read about the group’s aims Organization (WHO). Conversations focused and progress made so far. Last but not least, on timely diagnosis and post-diagnostic sup- two of my Alzheimer Europe colleagues, pro- Iva Holmerová, Chairperson of Alzheimer Europe port, care coordination, residential care and ject offi cers Angela Bradshaw and Cindy Birck, dementia-friendly communities. It is truly have put together a discussion piece on gene I am pleased to welcome you to the 31st edi- heartening to see the willingness of so many therapy for Alzheimer’s disease (AD). Readers tion of Dementia in Europe – the Alzheimer countries to use this important platform to can fi nd out more about what gene therapy Europe magazine. exchange knowledge and expertise. is, and whether or not it might be useful in the future treatment of AD. The fi rst section of our magazine highlights We then take a look at the ins-and-outs of some of our efforts to ensure dementia data-sharing in clinical research projects. Our fi nal section shines a spotlight on the remains a European priority. It begins with an The work we are doing in this area, which Netherlands and on Alzheimer Nederland, update on progress in reconvening the new will be published at the end of 2019, is made examining the excellent work taking place in European Alzheimer’s Alliance, the non-ex- possible thanks to a grant from Gates Ven- the country. Alzheimer Nederland is co-host- clusive, multinational and cross-party group tures. Our policy section concludes with a ing our 29th Alzheimer Europe Conference that brings together Members of the Euro- piece about the policy outcomes of a recent “Making valuable connections” (#29AEC) in pean Parliament (MEPs) to support Alzheimer Spominčica (Alzheimer Slovenia) conference, The Hague. As well as looking at the his- Europe and its members to make dementia “In the Rhythm of the Human Brain”, held in tory and work of our co-hosts, this section a policy priority in Europe. This section also Ljubljana earlier this year under the honor- includes an interview with people living highlights some of the work to engage with ary patronage of Prime Minister Marjan Šarec, with dementia, who share their refl ections MEPs as the new parliamentary term com- who was a keynote speaker. following the “Dementia Event ” – a national mences and the political agenda for the next gathering for and by people with dementia. fi ve years is shaped. Our third section, Dementia in Society, Finally, we are delighted to have an interview begins with a piece about policy cam- with the Dutch Health Minister, as well as an We are pleased to present two new EU-funded paigning at local and national levels. Two of update on the country’s national dementia projects in which we are actively involved, Alzheimer Europe’s national members asso- strategy – the Deltaplan Dementie . Alzheimer’s Disease Detect and Prevent and ciations, The Alzheimer Society of Ireland VirtualBrainCloud. This fi rst section concludes and Muistiliitto – Alzheimer Society of Fin- If you are reading this magazine at our con- with an in-depth look at our ethics report on land, highlight the impact such campaigns ference, I warmly welcome you to The Hague. making services and support for people with can have in terms of concrete outcomes. dementia appropriate for people from all eth- Next, Debbie Abrahams MP, Co-chair of the Happy reading! nic communities. The work for this report was UK Government’s All Party Parliamentary carried out by an expert working group set Group (APPG) on Dementia, reveals some of up by Alzheimer Europe last year. the key fi ndings of the group’s report, “Hid- den no more: Dementia and disability”. The The Policy Watch section presents a “who’s report highlights the fact that people with who” of some of the key leaders and deci- dementia are treated diff erently to those sion-makers in the European Union following with other health conditions or disabilities. Dementia in Europe 3 ALZHEIMER EUROPE y Employment and Social Affairs commit- Engaging with European tee (EMPL) – Eight EAA members sit on this committee y Environment, Public Health and Food Alzheimer’s Alliance Safety committee (ENVI) – Eight EAA mem- bers sit on this committee members to make dementia y Industry, Research and Energy commit- tee (ITRE) – Ten EAA members sit on this a European Priority committee y Internal Market and Consumer Protection With the European Parliament now sitting for the new committee (IMCO) – Seven EAA members term (2019–2024), Alzheimer Europe has been working to sit on this committee. re-establish the European Alzheimer’s Alliance. Having these connections will allow Alzheimer Europe to better engage with decision-makers within the parliament, par- their countries. These letters highlighted the ticularly when seeking to influence legislation importance of treating dementia as an area at the committee stages. of priority, including within the Horizon 2020/ Europe research programmes, the European Pil- EAA Chair and Vice Chairs lar of Social Rights and the Health Programme. Following the European elections in May 2019, The letters also contained four specific asks: As we announced in Dementia in Europe 30 Alzheimer Europe has been working with its (June 2019), Sirpa Pietikäinen MEP (Finland) members to ensure that dementia remains a y Raise a question during hearings of can- has agreed to become the chair of the EAA priority at a European level. This work builds didates for the Council of Commissioners, in the year ahead. To ensure that we have a on the foundations laid during the #Demen- asking how they will ensure dementia is balance of representation across the political tiaPledge2019 campaign, in which we asked prioritised within their remit. spectrum, Alzheimer Europe has also written candidates to commit to joining the Euro- y Ensure that dementia is considered dur- to EAA pledgees from the EPP, S&D, Reform pean Alzheimer’s Alliance (EAA) and working ing the course of the work of the European Europe, the EFA/Greens and GUE/NGL invit- with us if elected. Parliament committees on which they sit. ing them to become Vice Chairs of the group. y Engage with their country’s national Once confirmed, Alzheimer Europe will post As a result of this campaign, the EAA now has Alzheimer’s/dementia organisation to find the details of the full make-up of the group 91 members and we are working to ensure out what is happening in their country, on its website.