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 in 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 to improving the lives of programme”. people with dementia. However, she also noted some of the difficulties in achieving Hosted by European Alzheimer’s Alliance European action, noting that the Council was Geoff Huggins presents on the Joint Action member Marian Harkin, MEP (Ireland), the very clear about health remaining a Member debate was well attended with 92 delegates State competence. European Joint Action on Dementia from across Europe, comprising representatives from the European Working Group of Europe is changing. Fami- Geoff Huggins, Director of Health and Social People with Dementia (EWGPWD), national Care Integration at the Scottish Govern- Alzheimer’s Associations, national govern- lies are more international. ment presented on the work of the second ment representatives, research partners and By sharing good practices and European Joint Action on dementia, “Act on pharmaceutical representatives. knowledge, dementia could be a Dementia”. Mr Huggins explained that the project was an example of an EU project Welcoming delegates and opening the ses- “flagship area, positively influenc- funded from the health programme, build- sion, Marian Harkin MEP (Ireland) noted that ing lives through collaboration.” ing on ALCOVE, the previous Joint Action. a recent report from the Organisation of Eco- nomic Coordination and Development (OECD) Iva Holmerová He explained to delegates that unlike other had estimated that around 9 million people projects, which often focus on generating new knowledge or information, the previ- Marian Harkin opens the lunch debate ous project had shown that the information was available but was not being translated into practice. As such, the focus of the second Joint Action was to demonstrate how good practice could be embedded and spread within different countries, with their different contexts and health structures.

Deeds, not words, are what we need now across Europe to improve the lives of people “with dementia and their carers.” Geoff Huggins

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Beginning in 2016 and due to run for three years, the programme has involved more than 10 countries, with additional collab- orators and partners supporting the work, including Alzheimer Europe. Mr Huggins outlined the project focused on identifying best practice for people with dementia within four work packages: yy Diagnosis and post-diagnostic support – led by France yy Crisis and care coordination – led by Italy and The Netherlands yy Residential care – led by Norway yy Dementia-friendly communities – led by England.

Mr Huggins also explained to delegates that Jean Georges presents on the work of Alzheimer Europe workstreams on coordination and dissemination are both being led by the Scottish Government, with the Agency for Health the relevant work taking place at a European coordinated and holistic approach to research. Quality and Assessment of Catalonia (AQuAS) level, taking the opportunity to reflect on the He further explained that activities beginning in Catalonia leading the evaluation of the progress made to date, some outstanding under the French Presidency in 2006 had been project. challenges and concerns, and identifying incredibly helpful in establishing dementia what Alzheimer Europe would like to see as a priority. The project is due to conclude and report on take place next. its work in October 2019. In the following years, there was significant Mr Georges set out the context around the progress made in relation to increases in EU European-level policies and Alzheimer work to establish dementia as a European funded dementia research, through a number Europe workstreams priority, highlighting that the Paris Declara- of different programmes, including the 7th and tion in 2006 was a catalyst for the beginning 8th Framework Programmes for Research and Jean Georges, Executive Director of Alzheimer of a political movement, calling for addi- Technological Development (FP7 and Horizon Europe presented to delegates on some of tional funding for research, as well as a more 2020), the Joint Programme on Neurodegen- erative Diseases (JPND) and the Innovative Deirdre Clune talks about the social aspects of dementia Medicines Initiatives (IMI) 1&2.

More recent policy and legislative drivers from the European Union have included the European Social Pillar and the Work-Life Bal- ance initiative, which aim to improve the lives of people with dementia and their carers. At a national level, Mr Georges noted that both the Swedish and German governments had recently committed to developing national dementia strategies, whilst Portugal published a strategy in the summer of 2018.

Focusing on the contribution of Alzheimer Europe, Jean Georges explained that Alzheimer Europe had 42 member organisations from 37 countries, with Estonia and FYR Macedonia, having joined in October 2018. He noted that the EU Health Programme allowed Alzheimer Europe to carry out much of its work, including its yearbooks and ethics publications, information dissemination through

Dementia in Europe 5 ALZHEIMER EUROPE

its newsletter and website, and capacity building amongst member organisations. The organisation also supported the Euro- pean Alzheimer’s Alliance, which contained 126 MEPs from 27 EU Member States.

Alzheimer Europe had also been in a position, working with the Dutch, Italian and Scottish governments, to support a new Governmen- tal Expert Group on Dementia, following the European Commission’s decision to disband its dementia expert group.

Jean Georges concluded his presentation by sharing Alzheimer Europe’s campaign pledge for the European Parliament Elections in May 2019. Alzheimer Europe and its members will be asking candidates standing for election to sign the European Dementia Pledge, committing them to joining the European Helen Rochford-Brennan asks a question on social care Alzheimer’s Alliance and working to make dementia a European priority. Nélida Aguiar, carer for her mother, Idalina – At the end of the meeting, Iva Holmerová, a member of the EWGPWD – highlighted her Chair of Alzheimer Europe, presented Helga According to Alzheimer experience on Madeira (Portugal), working Rohra with a plaque thanking her for six years to ensure carers received support and asked of service in the EWGPWD, including four Europe, 8.7 million Euro- how we can ensure national governments years served as the group’s first Chair. You peans live with dementia and make this support available for everyone. Jean can read our interview with Helga on page 28. these numbers are expected to Georges agreed that this was challenging and said that even in developed countries, it was Alzheimer Europe’s next European Parliament “at least double by 2050. Demen- an area which was often not given enough lunch debate is taking place on 26 February tia deserves to remain a priority attention. 2019, focusing on “Dementia as a European of future EU health and research research priority”. Nessa Childers, MEP (Ireland) asked about programmes!” continuing this work into the next parliament and Mr Georges highlighted that, in Nélida Aguiar shares her experience Jean Georges the run up to the elections, Alzheimer Europe, Open floor discussion together with its members, would let candidates know how they can be involved and the Following the presentations, there was an key issues for the dementia agenda. open floor discussion involving delegates, with questions posed for the presenters on Deirdre Clune, MEP (Ireland) asked whether future areas of focus, as well as contributions or not enough was being spent on social from people living with dementia and carers aspects of dementia, including in relation of people with dementia who shared their to research, noting that there is a lot we can experiences of living with the condition. do that makes a difference quite quickly. Mr Georges agreed noting this was the basis of Helen Rochford-Brennan, Chair of the Euro- the “care today, cure tomorrow” approach pean Working Group of People with Dementia Alzheimer Europe advocated. (EWGPWD) enquired why social care had not been included as a focus of the work of the Carmel Geoghegan, supporter of Helen Joint Action. Mr Huggins responded that part- Rochford-Brennan, asked about GP buy-in. ners had a limited scope of areas which they Geoff Huggins noted that as part of the could examine but that this was something Joint Action’s work in France and Italy, varia- which may be examined in future by the Gov- ble buy-in was evident and that finding out ernmental Expert Group. what practitioners found useful was crucial.

6 Dementia in Europe ALZHEIMER EUROPE

and other legal rights at the heart of each Alzheimer Europe AGM elects commitment of Scotland’s first and second dementia strategies. Jim has an MBA from Glasgow Caledonian University and joined new Board and welcomes two the Board of Alzheimer Europe in 2014: new member organisations “Being part of an international movement which aims to transform the lives of peo- On 29 October 2018, Alzheimer Europe held its Annual General ple with dementia, their families and Meeting (AGM) in Barcelona. Member associations elected a carers and which shares the same human rights based principles and values is very new Board which will serve until 2020 and accepted two new important to me. Being a member of the provisional member organisations. board of Alzheimer Europe provides the opportunity work as part of a European wide collective force for change.” Alzheimer Europe’s Board of Directors is com- Charles Scerri (Malta) – Vice-Chairperson prised of the office bearers – Chairperson, Maria do Rosário Zincke dos Reis (Portugal) Vice-Chairperson, Honorary Secretary and Charles is a graduate from – Honorary Treasurer Honorary Treasurer – and up to seven further the University of Dundee, members directly elected by a General Meet- Scotland. He lectures in Rosário has been practicing. The Chairperson of the European Working dementia studies at the ing law in Portugal since Group of People with Dementia (EWGPWD) is University of Malta and 1987, focussing on family an ex officio member of the Board of Directors is the National Focal Point law and the legal rights with full voting rights. All directors must on Dementia in Malta. He of people with incapacity. belong to full member organisations of is also the Chairperson of the Malta Dementia She joined the Alzheimer Alzheimer Europe. Society and has been Vice-Chair of Alzheimer Europe Board in 2008, and became Honorary Europe since October 2016. Prior to this, he was Treasurer in 2010. She is heavily involved in Iva Holmerová (Czech Republic) – Chairperson Alzheimer Europe’s Honorary Secretary: Alzheimer Portugal, as a current Board member and trainer on Legal and Fundamental Rights Iva is founder of the “For years, Alzheimer Europe has been of elderly people and people with incapacity: Czech Alzheimer Soci- advocating to make dementia a health ety, holds a PhD in and social priority in European countries. “My experience as member of Alzheimer Social Gerontology and As Vice-Chair, I have gained significant Europe’s Board has been very reward- is a practicing physician experience in the workings of dementia ing personally and as a representative qualified in General and associations throughout Europe, which of a national organisation, because it Geriatric Medicine. Iva is also the Director of in turn was instrumental in finding ways has allowed me to learn a lot from my the Czech Centre of Gerontology and joined in which we can come together for the colleagues and keep up with what is the Board of Alzheimer Europe in 2008, serv- benefit of individuals with dementia, their happening across Europe in the field of ing as Vice-Chairperson from 2010 to 2016 caregivers and family members.” dementia. The opportunity to participate until she became Chairperson in 2016: in decisions and in defining Alzheimer Jim Pearson (UK – Scotland) – Honorary Europe’s strategy has been of great “I have been involved in the demen- Secretary importance to me and to Alzheimer Por- tia movement for many years, during tugal, where I can share initiatives and which my ‘purely’ professional view on Jim is Alzheimer Scot- achievements.” dementia has changed, due to meetings land’s Director of Policy with people with dementia and caregiv- & Research and is respon- Helen Rochford-Brennan (Ireland) – Chair ers and to my close personal insights. sible for Alzheimer of the EWGPWD As Chairperson, I would encourage all Scotland’s public policy countries in the European region to join engagement. He has a Helen was the Vice-Chair- our membership and to be as active as background in welfare rights and a particu- person of the EWGPWD possible. Some of the issues faced by lar interest in promoting as well as protecting from 2014–2016 and people with dementia require interna- the rights of people living with dementia. became the group’s tional collaboration.” He played a significant role in developing Chairperson, thus also Scotland’s Charter of Rights for people with joining the Board of dementia and their carers, which puts human Alzheimer Europe, in October 2016. She is on

Dementia in Europe 7 ALZHEIMER EUROPE

the Monitoring Committee of Ireland’s first Marco Blom (Netherlands) – New member Sabine joined the Board in 2016: National Dementia Strategy and is a Global Dementia Ambassador. Marco graduated from “The work we do at European level is impor- the Radboud University tant, not only where health policy issues A life-long Rights and Social Justice Cam- Nijmegen in 1987 with are concerned, but also in the exchange paigner, Helen now advocates for the rights an MSc in Psychogeron- of experience and knowledge.” of people with dementia and was recently tology. After working in awarded an Honorary Doctor of Laws degree a regional mental health Pat McLoughlin (Ireland) – New member from the National University of Ireland Galway. institute for elderly people and at the National Institute of Care and Welfare, he Pat worked in consul- Helen was diagnosed with Early Onset joined Alzheimer Nederland in 1997. He tancy prior to becoming Alzheimer’s at the age of 62 and has since worked in several positions and was interim CEO of the Alzheimer written very personally about living with CEO from February 2017 until September 2018. Society of Ireland in Alzheimer’s dementia: Currently he is scientific director and also 2016. He was previ- head of National Services. He is an expert in ously CEO of two Health “I am not alone in realising the contribu- the field of dementia and has a special inter- Authorities, Deputy CEO of the Irish Health tion people with dementia can make. It is est in scientific research into dementia and Service Executive and Director of public hos- great to be part of the ‘Normal Majority’ development of internet-based interventions pitals. He was also CEO of Ireland’s Payments and not just a person with Alzheimer’s for family carers of people with dementia. He Clearing System: or tokenistic. It gives me a sense of pur- is also a Board member of the national Delta pose and is an opportunity for me to Plan Dementia in the Netherlands and editor “I hope to help the Alzheimer Europe Board create awareness of the aspirations and of Denkbeeld - a Dutch journal on demen- develop strategies to ensure the lived needs of people with dementia to be fully tia care: experiences of those with dementia and integrated in society. In the words of Ed their carers are central in lobbying the Roberts “when others speak for you, you “Since I started to work for Alzheimer Ned- European Parliament.” lose”. I have a voice of my own. I use that erland, I much enjoyed the conferences of voice at Board meetings to express our Alzheimer Europe as a major contribution Sirpa Pietikäinen (Finland) needs and aspirations.” to strengthen the national organisations in the different countries. I am very moti- Sirpa Pietikäinen MEP, Stefanie Becker (Switzerland) vated to make a good contribution to the former Finnish Minister work of Alzheimer Europe, with my broad of the Environment (1991– Stefanie is the Director of experience in the field of dementia and 1995), has been a Member Alzheimer Switzerland. A especially the broad range of activities of the European Parlia- trained psychologist and I am involved in with Alzheimer Neder- ment since 2008. At the gerontologist, she holds land. As one of the founding members of Parliament, she is currently a member of the a PhD in Psychology from Alzheimer Europe, Alzheimer Nederland Economic and Monetary Affairs Committee, Karl-Ruprechts Univer- will actively support the exchange of ideas and a substitute member of the Environment, sity of Heidelberg, Germany. For almost 20 and experiences (like the Alzheimer Cafés Public Health and Food Safety Committee, years, she has been working on the ques- and our online platform for family car- as well as the Women’s Rights and Gender tion of stabilising and promoting quality egivers) between member organisations” Equality Committee: of life for people with dementia. She is also founder and chief editor of the bilingual (Ger- Sabine Jansen (Germany) With a keen interest in working on health man-French) journal Applied Gerontology. issues with various organisations, Ms Pietikäi- Sabine is the Executive nen joined the Alzheimer Europe Board in 2010. Stefanie joined the Board in 2016: Director of the German Alzheimer’s association, “Over 10 million people in Europe live with a “Advocating for and supporting the needs Deutsche Alzheimer memory disabling disease, and the num- of people with dementia and their rela- Gesellschaft (DAlzG), the ber is still increasing. People with memory tives on the European level is a great umbrella organisation of disabling diseases and their carers face opportunity to raise our voice. A voice more than 130 regional and local Alzheimer stigma and discrimination, which makes which only gets stronger and louder with associations. Before joining DAlzG in 1995, their daily lives and health care difficult. the member organisations. Additionally, Sabine completed her studies in social work I want to do all that I can to promote the the exchange of experience, successful and worked in various fields of the health rights of people with memory disabling projects or even failures of initiatives sector. She is a member of several advisory diseases, help and facilitate good qual- between countries is always of mutual boards, including the Ministry of Health and ity care for them, and try to support best importance and inspiring.” various research projects. practices in medical care for everybody.”

8 Dementia in Europe ALZHEIMER EUROPE

Jesús Rodrigo (Spain) and comparing visions to what is being “In the work with my colleagues on the done in other countries to improve the Alzheimer Europe Board, I will respond to Jesús has a Degree in quality of life of those living with Alzheim- ongoing inquiries that will arise about Sciences of Education er’s. In addition, it is an important factor fundraising, strategic partner relation- and has spent his entire in reinforcing our lobby dimension with ships and policy discussions concerning professional career in the Spanish public authorities. All this is legal and economic issues concerning per- non-profit organisations, made possible thanks to the serious and sons with cognitive decline.” in positions of increasing profound work that takes place within responsibility. the Alzheimer Europe Board.” Farewell to three former Board members

He is currently the Executive Director of the Karin Westerlund (Sweden) – New member Alzheimer Europe wishes to thank outgoing Spanish Confederation of Associations of Board members Marie-Odile Desana (France), Families of People with Alzheimer’s and other Karin holds an Executive Sabine Henry (Belgium) and Štefanija Lukič Dementias (CEAFA), a position he has held MBA from Stockholm Zlobec (Slovenia) for their service. since 2005. Working directly with the Board, School of Economics he has contributed to developing the vari- and a Bachelor Degree in Two new member organisations ous strategic plans of the organisation and financial economics from in positioning the entity as a reference to the Stockholm University. Also during the 2018 AGM, Alzheimer Europe Central Government of Spain with regards the was pleased to welcome two new provisional definition of a national dementia strategy. Karin’s work for Alzheimer Sweden started member organisations: in 2015 with a 3-year inquiry about persons Jesús joined the Board of Alzheimer Europe with Alzheimer’s disease and Down Syn- Alzheimer Disease Association of Macedo- in 2014: drome. Today, she works as a Consultant and nia and NGO Living with Dementia, Estonia Investigator for the organisation, focussing were formally voted in, bringing the number “Being part of the Alzheimer Europe Board on the dialogue with the concerned Swedish of Alzheimer Europe members to 42, hailing has allowed the expansion of knowledge Public authorities: from 37 countries.

The Alzheimer Europe Board (2018–2020)

Dementia in Europe 9 ALZHEIMER EUROPE

Alzheimer Europe hosts the 4th edition of its annual Alzheimer’s Association Academy On 4 and 5 December 2018, Alzheimer Europe hosted its 4th Alzheimer’s Association Academy, in Brussels. Topic areas were chosen based on a survey of participants at the 2017 Academy and member organisations.

Alzheimer Europe’s 4th Alzheimer’s Associa- was moderated by James Pearson, from tion Academy involved 9 experts from various Alzheimer Scotland. This session included European and national institutions/organisa- presentations by Štefanija Lukič Zlobec tions. Participants included 31 representatives (Spominčica, Slovenia), who spoke about the Piers Kotting presents Join Dementia Research UK from Alzheimer Europe’s member organisa- experience of Spominčica in involving and tions; 4 company representatives; 4 members supporting carers of people with dementia; dementia. During their presentations the of the European Working Group of People Bernard O’Hagan (National Dementia Car- speakers addressed key questions such as: with Dementia (EWGPWD) and 7 Alzheimer ers Action Network – NDCAN, Scotland, UK), How can Alzheimer’s associations effectively Europe staff members. who told delegates about the experiences involve carers of people with dementia in of carers of people with dementia advo- their governance and activities? How should Involving carers cating for policy change at national level Alzheimer Europe effectively involve carers in Scotland; and Mario Possenti (Federazi- of people with dementia in its governance The first day began with a session on one Alzheimer Italia, Italy), who shared the and activities? and how are the interests of “Involving carers of people with demen- experience of Federazione Alzheimer Italia in people with dementia and of carers repre- tia in Alzheimer’s associations” and surveying the views of carers of people with sented by Alzheimer’s associations?

Participants and speakers at 4th edition of AE’s Alzheimer’s Association Academy

10 Dementia in Europe ALZHEIMER EUROPE

Involving people with dementia medicines; Andy Bolan (Biogen), who dis- increase research participation; Marissa cussed “Health System Preparedness of Six Zwan (VUMC, Netherlands), who presented The second session of the day was on “Giv- EU Countries for future Alzheimer’s Innova- “Hersenonderzoek” – the Dutch registry for ing a voice to and involving people with tion”; and Krista Tromp (Erasmus Medical brain research and nationwide online plat- dementia in Alzheimer’s associations” and Centre, Netherlands), who spoke about how form for recruitment and pre-screening of was moderated by Iva Holmerová, Chair- the introduction of preventative treatments participants for neuroscience studies and person, Alzheimer Europe. This session impacts the ethical issues raised by genetic Piers Kotting (Join Dementia Research, UK), included presentations by Dianne Gove and biomarker risk disclosure. on increasing the participation of people (Alzheimer Europe), who discussed the find- in dementia research, using Join dementia ings of Alzheimer Europe’s mapping exercise All three presentations helped to give the research as an example. This session intro- on the development and growth of working delegates at the Academy a clearer picture duced some of the initiatives at national groups of people with dementia in the Euro- of how the introduction of disease-mod- level to promote the involvement of people pean region and Jesús Rodrigo (CEAFA, Spain), ifying treatments impacts on the role with dementia, carers and people at risk of who spoke about PEPA, the Spanish Group of Alzheimer’s associations, how health developing dementia in dementia research, of People with dementia, as an example of a care professionals need to respond to the the role Alzheimer’s associations have in recently-created working group. The speak- introduction of new treatments, whether promoting opportunities for research par- ers looked at how national organisations can healthcare systems have the necessary infra- ticipation, and whether or not it could be better involve people with dementia in their structure and procedures in place for the feasible to encourage common systems or governance and activities, and at some of the introduction of new medicines, and how databases for people interested in partici- barriers identified. society might respond to the introduction pating in dementia research. of these medicines as well as ethical issues Introduction of Alzheimer’s treatments/ that would need to be addressed. PRODEMOS project consultation innovations – Some challenges Participation in dementia research The final session of the Academy was a con- Day two of the Academy began with a ses- sultation with the “Prevention of dementia sion on “Challenges for the introduction of The second morning session was on “Pro- using mobile phone applications project” Alzheimer’s innovation”, which was mod- moting the participation of people in (PRODEMOS) moderated by Krista Tromp. The erated by Jean Georges, Executive Director, dementia research”, with moderator PRODEMOS project aims to develop an evi- Alzheimer Europe. This session included Charles Scerri of the Malta Dementia Soci- dence-based dementia prevention strategy presentations by Tim Shakespeare (Alzheim- ety. This session included presentations using mobile health and making it accessi- er’s Society, United Kingdom), who shared by Ana Belén Callado Gil (Fundació Pas- ble to those at increased risk of dementia Alzheimer’s Society’s experience on prepar- qual Maragall, Spain), who gave examples who are usually not reached by preventive ing for the introduction of new Alzheimer’s of the effective use of communication to medicine. It is targeting socio-economically deprived populations in the EU and a population at risk of dementia in China. The final Academy speakers Krista Tromp (left) and Tim Shakespeare (right) get involved in the lively discussions aim is to implement a flexible, fully-adaptable mHealth platform in a culturally appropriate form in a range of healthcare settings across the globe. Project researchers Marieke Hoeve- naar-Blom, Edme Eggink, both at Amsterdam Medical Centre, and Shanu Sadhwani (Uni- versity of Sussex) asked delegates to reflect on a number of questions related to the app and some of the possible difficulties that they might encounter in creating and implementing it, as well as coming up with solutions and other ideas.

Looking forward to the fifth Academy

The two-day Academy was a very interac- tive event, with plenty of interesting and thought-provoking discussions. Given the success of its Alzheimer’s Association Acad- emies to date, AE will host a fifth edition in December 2019.

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Comparing dementia strategies across Europe Following the publication of Alzheimer Europe’s Dementia 2018 yearbook comparing dementia strategies in in Europe countries in Europe, Owen Miller, Policy Offi cer, Yearbook 2018 Comparison of gives an overview of the report and some of the national dementia key points within it. strategies in Europe

At the 24th Alzheimer Europe Conference in These headings refl ect the most frequently Glasgow in 2014, The Glasgow Declaration recurring themes across all of the strategies was launched, calling for the creation of a reviewed, regardless of diff erences in terms of

This Dementia in Europe Yearbook received funding under an operating grant from the European Dementia Strategy and for the population size, economic status or health- European Union’s Health Programme (2014-2020) development of national strategies in every care systems. European country. The signatories also called upon world leaders to recognise dementia Specifi cally, considering the commitments Alzheimer Europe’s 2018 yearbook as a public health priority and to develop a and policies contained within the strate- global action plan on dementia. gies, it is apparent that the greatest number relate to the provision of health and social Since then, a considerable number of national care services for people with dementia. action points within the report are not a governments have published national demen- This includes a focus on care coordination, guarantee that they have been, or will be, tia strategies. Almost fi ve years on from the diagnosis, treatment and the training of implemented. Glasgow Declaration, our 2018 yearbook has health and social care practitioners. Aside been published, comparing 21 dementia from these service-focused commitments, On behalf of Alzheimer Europe, I would strategies (or national plans) and two neu- awareness raising amongst the public and like to thank members who took the time rodegenerative strategies across European improved infrastructure and resources for to review draft s of the yearbook and sug- countries, with a specifi c view to providing research were also areas of signifi cant focus gested changes and amendments with this a comparative overview of the priorities and for many of the strategies. work – this was invaluable in ensuring the areas of focus. Doing so has allowed us to report was as accurate as possible. I would establish not only what areas of dementia One point we are keen to emphasise about also like to extend our thanks to members policy and practice are being prioritised by the report is that its analysis of the poli- of the European Working Group of People national governments, but also the diver- cies and commitments within the national with Dementia (EWGPWD) who took time to sity of approaches to these issues. The main dementia strategies is done at face value. share their personal views and experiences body of the report is broken down into fi ve With the exception of where strategies have in relation to specifi c themes identifi ed main headings, which are then further sub- had mid-point reviews or evaluations, this within the strategies. Their contributions divided into specifi c subject areas. The fi ve report does not focus on the implementa- within the report illustrate that without main headings are: tion or progress of commitments or policies good implementation of the policies and within the strategies. As such, where a commitments within the strategies, it will y Development and implementation of country or strategy is not included under a be impossible to meaningfully improve the strategies certain section or subsection of the report, lives and experiences of people with demen- y Human rights and legal matters it should not be inferred that the country is tia, their families and carers. y Diagnosis, post diagnostic support, care not carrying out work in this area – it sim- and treatment ply refl ects that there was a lack of reference The report has now been published in Eng- y Informal carers to this area within the country’s strategy. lish and copies can be ordered from: www. y Research . Equally, the inclusion of commitments or alzheimer-europe.org/Publications

12 Dementia in Europe ALZHEIMER EUROPE

Table 1: National dementia strategies at a glance * Human rights Legal matters Diagnosis Post-diagnostic & Residential care Long-term End-of-life Prevention DFCs Public awareness Research infrastructure data Routine Implementation workforce Support for Support for Coordinated care Coordinated medication Treatment & Treatment & Training Technology support carers Acute & hospitals Acute Austria ● ● ● ● ● ● ● Belgium (Flanders) ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● Cyprus ● ● ● ● ● ● ● ● ● ● ● ● ● Czech Republic ● ● ● ● ● ● ● ● ● ● Denmark ● ● ● ● ● ● ● ● ● Finland ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● France ● ● ● ● ● ● ● ● ● ● ● Germany ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● Greece ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● Ireland ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● Israel ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● Italy ● ● ● ● ● ● ● ● ● ● Luxembourg ● ● ● ● ● ● ● ● ● ● ● ● ● ● Malta ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● Netherlands ● ● ● Norway ● ● ● ● ● ● ● ● ● ● ● ● ● ● Portugal ● ● ● ● ● ● ● ● ● ● Slovenia ● ● ● ● ● ● ● ● ● ● ● ● ● ● Spain ● ● ● ● ● ● ● ● ● ● ● ● Switzerland ● ● ● ● ● ● ● ● ● ● ● ● UK (England) ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● UK (N. Ireland) ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● UK (Scotland) ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● UK (Wales) ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●

* Implementation refers to whether the strategy outline implementation or governance measures – it does not refer to the status of implementation of the strategy.

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Dementia in Europe 13 ALZHEIMER EUROPE

Promoting intercultural dementia care and support in Europe Following the publication of Alzheimer Europe’s 2018 report examining the experiences of people The development of intercultural care from minority ethnic backgrounds with dementia, and support for Dianne Gove, Director for Projects with Alzheimer people with dementia from minority Europe gives an overview of the background to ethnic groups the report and some of the key themes. A discussion paper

An increasing number of people from minor- professional carers from minority ethnic ity ethnic groups are reaching an age at which backgrounds through the identifi cation and

The report entitled “The development of intercultural care and support for people with demen- the risk of developing dementia is higher and promotion of intercultural care and support. tia from minority ethnic groups” received funding under an operating grant from the European Union’s Health Programme (2014–2020) and from the Robert Bosch Stiftung this trend is predicted to continue in the next Members of the working group, with diff er- few decades. At the same time, people from ent expertise and experience in the fi eld and minority ethnic groups tend to use fewer from a range of ethnic groups, worked tire- Alzheimer Europe’s 2018 ethics report services than their counterparts from the lessly throughout 2018 to produce the report. majority ethnic groups in diff erent coun- They also provided a brief overview of some tries. This applies to most forms of support of the key sections of the report at a spe- The report has now been published in Eng- and care but is particularly noticeable in cial symposium during the 28th Alzheimer lish and will soon be available in French and the context of residential care, even though Europe Conference in Barcelona. Topics pre- German. Copies can be ordered from www. many people from minority ethnic groups are sented included: the prevalence, assessment alzheimer-europe.org/Publications employed in residential care homes. and diagnosis of dementia in minority ethnic groups; interpreter-mediated dementia An online database is currently being devel- It is clear from the literature that there are assessments of people from minority eth- oped containing information about culturally several factors that may contribute towards nic groups; working with and involving local sensitive and appropriate initiatives and the low uptake of services and support such minority ethnic groups in the development materials, which should hopefully provide as distrust, lack of awareness, how demen- of intercultural care and support; examples ideas and a solid basis for the development tia is understood, low levels of literacy, lack of activities and support for people from or improvement of intercultural dementia of fl uency in the national language, fear specifi c minority ethnic groups provided care and support in Europe. This database that traditions and practices will not be by Alzheimer associations and issues sur- will be regularly updated. We would there- supported and fi nancial issues. Moreover, rounding live-in/migrant carers for people fore be pleased to hear from you about any it is sometimes assumed that people from with dementia. relevant initiatives and materials you may minority ethnic groups don’t need sup- know of in Europe. port, based on the assumption that “they On behalf of Alzheimer Europe, I would look aft er their own”. This is a stereotype like to thank the members of the working which needs to be challenged and diff erent group, which I had the pleasure to chair. The approaches to care and support explored, members of the group donated their time, together with people from diff erent ethnic expertise and personal experience in the groups, in order to develop support that is fi eld and in so doing, made it possible for culturally appropriate and acceptable. All too Alzheimer Europe to accomplish this impor- oft en, care and support are provided within tant work. The members of the group were a framework which refl ects the cultural tra- (in alphabetical order) Jean Georges ( Lux- ditions, norms and assumptions of majority embourg), Michal Herz (Israel), Siiri Jaakson ethnic groups. (Finland), Ripaljeet Kaur (UK), Debi Lahav ( Israel), T. Rune Nielsen ( Denmark), Sahdia In 2018, Alzheimer Europe set up an expert Parveen (UK), Charlotta Plejert (Sweden), working group to write a comprehensive Mohammed Akhlak Rauf (UK), Daphna report aimed at improving the situation Golan Shemesh (Israel) and Carolien Smits First Meeting of Expert Working Group in Bradfor d, of people with dementia, their carers and ( Netherlands). 18 May 2018

14 Dementia in Europe POLICY WATCH

Additionally, members heard from observer Governmental Expert Group on organisations who presented on relevant developments from their organisations, the Commission’s update on EU funding for Dementia meets for first time dementia-specific research (primarily through the Horizon 2020 programme and through Following the decision of the European Commission to the future Horizon Europe programme), the disband its own Governmental Expert Group on Dementia OECD’s report into dementia policies across OECD nations and the WHO’s Global Action in 2018, Alzheimer Europe worked with the Dutch, Italian and Plan on Dementia 2017–2025. Scottish Governments to re-establish a similar group bringing together nominated national experts to share information Second Joint Action on Dementia and expertise. Members of the group also heard from work package leaders from the second Joint Action on Dementia who presented on the A new Governmental Expert Group on Demen- in future meetings. Also in attendance, progress of work underway as part of the tia met for the first time since the European as observers, were representatives from programme. The presentations were focused Commission disbanded a similar group in Alzheimer Europe, the European Commission, on their respective work packages: diagnosis summer 2018. The meetings took place on the Organisation for Economic Cooperation and post-diagnostic support; crisis and care 3–4 December 2018 in Brussels, bringing and Development (OECD) and the World coordination; residential care; and dementia together government-nominated represent- Health Organization (WHO). friendly communities. Members agreed that atives from across Europe to discuss progress this would be a useful forum in which to dis- and developments in relation to dementia Countries update on their dementia tribute the results and findings of the Joint policy, practice and research. Facilitated by strategies Action to as broad an audience as possible Alzheimer Europe, the Dutch Ministry of and to have a meaningful impact. Health, Welfare and Sport, the Italian Minis- To improve the understanding between mem- try of Health and the Scottish Government, bers of the group, each country presented on Future meetings of the group the group was brought together after initial the status of dementia policy and practice in discussions between these members resulted their country. In a number of cases, countries The group agreed that it would be worth- in agreement that losing the European Com- referred to their national dementia strategy while to meet twice per year, with sessions mission Expert Group would be detrimental, and the specific provisions laid out therein. dedicated to exploring specific themes and as no other platform existed in which govern- It was notable that whilst there were signif- areas of work, such as care coordination or ments exchange knowledge and information icant challenges and difficulties which were diagnosis. Alzheimer Europe will continue to on dementia. specific to countries, difficulties such as the provide a secretariat role for the organisation lack of good quality statistics and data, as and meetings of the group. In total, 17 governments attended the group, well as the rising demand for services and with apologies received from a further 6 supports due to demographic changes, were who expressed an interest in participating common across nearly all countries. Members of the Governmental Expert Group on Dementia

Dementia in Europe 15 POLICY WATCH

Dementia as a European priority – A timeline of key 2014 developments since 2014 Since 2014, a great deal of progress has been made towards making dementia a European priority. Here we set out some of the key milestones, both positive and negative, that have taken place in recent years, starting from the signing of the 2018 Glasgow Declaration in 2014.

Glasgow Declaration (2014) – The Glas- both the European Council and the European European Social Pillar (2017) – The Euro- gow Declaration called for the creation of Commission to prioritise greater collabora- pean Social Pillar, proclaimed by EU a European Dementia Strategy and national tion in research, care and prevention. The Members in 2017, sets out 20 principles strategies in every country in Europe. The 2016 declaration called for dementia to be in three areas: Equal Opportunities and declaration also called for world leaders recognised as a public health priority, as Access to the Labour Market; Fair Working to recognise dementia as a public health well as identifying the need for a strategy Conditions and Social Protection and Inclu- priority and to develop a global action to meet challenges presented by dementia. sion. As part of this, the Commission is plan on dementia. Over 11,600 individuals currently draft ing a directive in relation to signed the declaration, with more than 200 EPSCO Council adopts Luxembourg EU Principle Nine, “Work-Life Balance ”, which organisations and in excess of 150 policy Presidency Conclusions (2015) – The would give carers the right to fi ve days of makers showing their support by signing Employment, Social Policy, Health and paid leave each year. the pledge. Consumer Aff airs (EPSCO) Council of the Luxembourg EU Presidency, adopted con- Alzheimer Europe Carers’ Survey (2018) Horizon 2020 (2014–2020) – This pro- clusions on a number of health-related In June 2018, at a lunch debate in the gramme is the biggest EU Research and items, including conclusions on “Support- European Parliament, Alzheimer Europe Innovation programme, with approxi- ing people living with dementia”. One of presented the fi nal fi ndings from the Euro- mately EUR 80 Billion of funding available these included calling on all Member pean Carers’ Survey, which explored the over 7 years, aiming to deliver more break- States to address dementia as a priority, experience of carers in the diagnostics and throughs and discoveries in research. to develop national strategies or actions post-diagnostic processes in fi ve coun- plans and to strengthen the collaboration tries across Europe. The results showed Innovative Medicines Initiatives 1 & 2 between European countries. that the process of diagnosis is still taking (2008–2013 & 2014–2020) – As part of too long and carers oft en do not receive Horizon 2020, the IMI2 is a continuation of Second European Join Action on Dementia adequate support aft er the diagnosis has the original IMI scheme, representing the (2016–2019) – Following ALCOVE (Alzheimer been made. largest public-private medicines initiative Cooperative Valuation in Europe – the fi rst in the world. It was offi cially launched in “Joint Action on Dementia”), the European Governmental Expert Group on Demen- July 2014 and has funded a number of key Commission supported the launch of a tia (2018) – Following the decision of the dementia research projects, including EPAD, second Joint Action through its Health European Commission to disband condi- AMYPAD, ROADMAP and PARADIGM, all of Programme. The Joint Action aims to pro- tion specifi c Governmental Expert Groups which involve Alzheimer Europe. mote collaborative actions among Member in the summer of 2018, Alzheimer Europe States to improve the lives of people liv- worked with representatives from the European Parliament Written Declarations ing with dementia and their carers, and Dutch, Italian and Scottish Governments, (2015 and 2016) – Two Written Declarations focuses on four key areas: Diagnosis and to reconvene a Governmental Expert Group. were made with the support of MEPs in post-diagnostic support; Crisis and care You can read about the inaugural meeting the European Alzheimer’s Alliance in 2015 coordination; Residential care; and Demen- on the previous page. and 2016. The 2015 declaration encouraged tia-friendly communities.

16 Dementia in Europe POLICY WATCH

—— Services: Support services including European Alzheimer’s time-off for the carer —— Rehabilitation: Including health promotion and protection for the carer, on Alliance members share par with occupational health services. yy Pairing-up work on Alzheimer’s pro- their thoughts on making grammes with the development of user friendly e-health technologies that are dementia a European priority accessible, developed with the full participation, from the beginning, of intended As the current term of the European Commission comes users. to an end and with the European Parliament elections in The greatest contribution of the EAA has May 2019, we asked members of the European Alzheimer’s been building up the work of the European Alliance to reflect on progress towards making dementia a Dementia Ethics Network, as well as the close follow-up and monitoring of the development European priority. and implementation of national strategies to address memory disabling diseases in various Member States. As the timeline on page 16 shows, much Sirpa Pietikäinen (EPP, Finland) – Vice Chair progress has been made at a European level of EAA Martina Anderson (GUE/NGL, UK) – Member over the past 5 years to ensure that demen- of EAA tia remains a European priority. However, we Key achievements must continue to work to make sure that this include the European Dementia has wide-rang- progress is not lost. Commission’s initiative ing consequences for on Alzheimer’s disease those living with the The current political and policy context and other dementias condition, for their fam- means there will be a lot of significant devel- and the pushing forward ilies and carers and opments in a short space of time including of the creation of national Alzheimer’s pro- society as a whole. Much changes to the Commissioners who lead each grammes at the Member States level. It has remains to be done, maintaining a consist- directorate, the ongoing negotiations on also been a key to have an inclusive and broad ent focus on support mechanisms for people the Multiannual Financial Framework (MFF) roadmap with regards to how memory dis- diagnosed with dementia and their carers, which will determine the future budgets of abling diseases could be better treated and full access to home-care where needed and the EU (including the place of health), the the daily lives of people improved. addressing the stigma attached to the con- future Horizon Europe (2021–2027) research dition. I have met with representatives from programme and the European Parliament Further support can be shown by: national Non-Government Organisations elections in May 2019. This provides both (NGOs), alongside signing the 2016 parlia- opportunities and challenges for dementia yy Making dementia one of the health pri- mentary declaration and the pledge ran by as a European priority. orities in the Horizon Europe research Alzheimer Europe. programme As such, we asked members of the European yy Creating an informal carers programme European funding for local organisations is Alzheimer’s Alliance (EAA) to reflect and share at the European level to address the fol- vital to their development and capability to their thoughts on: lowing priorities: support citizens living with dementia, their —— Recognition: personal and societal families, safe community schemes and carers. yy What they considered as the key achieve- recognition of carers Funding streams for national organisations ments at an EU level in the recognition of —— Acknowledgement: recognition as should be developed as oftentimes charities dementia as a European priority. a carer leading to certain status for and NGOs are providing the dominant sup- yy What they believed the European Union carers, which would determine rights port system. Organisations caring for citizens could do to further support people with and obligations with dementia in the north of Ireland should dementia and their carers in future health, —— Support: Based on certain criteria, not suffer any diminution of such support research and social programmes. right to defined social support in the context of Brexit. Europe should fur- yy What they saw as the greatest achieve- —— Work Life Balance: guaranteed right ther focus funding and support in a research ment/contribution of the EAA over the to combine carer’s role with formal capacity, recognising that the Commission past five years. employment funds research projects on Alzheimer’s and

Dementia in Europe 17 POLICY WATCH

neurodegenerative diseases through the 7th therefore cooperation to encourage studies Karin Kadenbach (S&D, Austria) – Member Research Framework Programme. daunted by huge investment costs is vital. of EAA

It is a credit that the EAA has made this issue Deirdre Clune (EPP, Ireland) – Member of EAA Dementia has been a a priority. It assists in sharing developments European priority for in relation to research, support systems and One of the major achieve- nearly ten years now. The developments in the treatment of Alzheim- ments at EU level in first step by the Parlia- er’s. This body in association with local recognising that demen- ment was set by adopting organisations such as The Alzheimer Society tia is a priority is ensuring the written declaration of Ireland and Dementia NI, provide consist- that all countries develop 80/2008. Since then dementia has been on ent pressure for much-needed change. We a dementia strategy. We the European agenda many times, such as the need to develop understanding of the prac- are not there yet but I am confident that all council communication in 2015, which wel- tical impact of dementia, alongside the EU countries will develop such a strategy and comed the second Joint Action on Dementia. psychological and emotional impact – and thus implement policies recognised at EU One project which I would like to highlight support carers to look after themselves when level that will improve the lives of those with is “Horizon 2020”. The research done during supporting someone with dementia. dementia and their carers. this project is especially important for tackling dementia in the future. Specifically for Matt Carthy (GUE/NGL, Ireland) – Member To further support those with dementia we Alzheimer’s, the EU spent EUR 544 Million in of EAA should encourage collaboration and shar- 370 projects over the past 10 years. ing of best practice in helping those with The inclusion of dementia dementia to better manage day to day living. In my opinion, the most important action in the European Coun- Research that focuses on social programmes to support people with dementia and their cil’s conclusions in 2015 should receive a balanced share of funding carers is information. Many people do not was an important step in and support. know what a broad field of opportunities raising the profile of this exists. The programmes have to be available sometimes hidden dis- The EAA has raised awareness and ensured and easily accessible for everybody. Other- ease with policy makers. Of the 48,000 people that public representatives care, under- wise, many people living with dementia living with dementia in Ireland, it is estimated stand and are willing to support policies that will be excluded in the process of health, that 63% of them reside in their own homes. improve the lives of those with dementia, rec- research and social programmes. I am happy The number of people developing dementia is ognising the important role played by carers. that Member States and other stakeholders rising every year, and is expected to more than can now consult the “best practice portal” double by 2040. While healthcare is not an EU Marian Harkin (ALDE, Ireland) – Member of (launched in April 2018), practices selected competence, it is important for the issue to EAA under the second Joint Action on dementia. be raised through multilateral fora since the breadth of actions to address these challenges In terms of the EU level The work of the EAA in line with Alzheimer as our populations continue to age must be achievements, the Joint Europe’s strategic plan has been the main coordinated. At national level though, we need Programme – Neuro- achievement in recent years. The five objec- to urgently start addressing funding gaps in degenerative Disease tives that are tackled within are the most healthcare to ensure that people affected and Research is the largest important in the fight against dementia, those caring for them are protected. global research initiative, especially providing a voice to people with focusing on improving scientific under- dementia and supporting research in this The European Parliament’s 2011 resolution call- standing, medical tools to identify and treat field, as these have a major influence on the ing for specific national plans and strategies Alzheimer’s, and social care structures. fight against dementia and Alzheimer’s. to facilitate funding has, for the most part, been realised. A National Dementia Strategy The EU can further work to ensure greater Merja Kyllönen (GUE/NGL, Finland) – Mem- was published in my home country (Ireland) collaboration between Member States in ber of EAA in 2015, however full implementation of the research and sharing of best practice. Addi- strategy remains an issue. While the vast tionally, it can facilitate the involvement Getting dementia rec- majority of actions such as the provision of of patient’s organisations in policymaking. ognised in the research funds for care, housing adaptation, and train- Furthermore, it can agree on the Work-Life agenda and highlighting for early diagnosis will take place through Balance proposal to ensure carers’ leave and ing dementia as a major national health strategies, the EU should look more flexible working conditions. public health and social to play a role in facilitating complementary care issue has been a key research in health care and research institu- The EAA has managed to put Alzheimer’s achievement, as has sharing the knowledge tions across Europe. No new medicines have firmly on the EU Agenda and make it a Euro- and information around Europe. Addition- been approved for dementia in over a decade, pean priority. ally, getting the Commission, Parliament and

18 Dementia in Europe POLICY WATCH

Council to take dementia and it eff ects seri- which means it receives more attention European project. Empowering citizens to ously, has been crucial. and funding. participate in decision-making about their health and well-being must extend to people The EU must fi nance the programmes to fi nd Despite the gathered research and growing with dementia and their carers. This means new treatments, medicines and innovative availability of data, several frontline actors addressing issues of education and poverty. healthcare equipment. It must also fi nance such as the European Federation of Nurses The European Parliament has been very pro- programmes that support the wellbeing of Associations are not suffi ciently included in gressive in its approach to the Commission’s carers as well as patients. the policy-making process, which is problem- proposal for a Work -Life Balance Directive atic since those actors are most exposed to the which would give carers paid leave. We now The EAA has made an excellent co-operation real challenges of dementia. The EU could also require action from the Council to make this with parliamentarians to share knowledge give more priority to dementia by establish- a reality and transform the lives of millions and existing information about dementia ing, for example, a dementia coordinator at EU of caregivers. and its eff ects to citizens, as well as the lat- level. Similarly, it could do more to spur collab- est advances in scientifi c research and what oration between health and social ministries The greatest achievement of the European needs to be done in this important area. and set up a comprehensive research agenda Alzheimer’s Alliance during the current legisla- that gathers all stakeholders for an informed ture has been the increased level of awareness Paul Rübig (EPP, Austria) – Member of EAA debate on the real implications of the disease. amongst politicians about the importance of evidence-based policy-making and the role The European Union is The real merit of the EAA is that it puts demen- of experts, including those with lived expe- dedicated to fight dis- tia in the spotlight, raising awareness on a rience of dementia. This is demonstrated by eases and to improve national and European level about the urgent the strong wording of the Written Question to health and life of its cit- need for a comprehensive approach. By gath- the Commission regarding the dismantling of izens. The main key for ering potential stakeholders it managed to the Expert Working Group. Despite the Com- that is Europe’s support trigger a greater exchange of information and mission’s disappointing answer the Alliance is for research and innovation in the health best practices. Similarly, it was eff ective in in a strong position to bring the fi ght to the and medical sector. In STOA, the scientifi c lobbying dementia higher up the EU agenda, next legislature, building on the many excel- committee within the European Parliament, which led to increased funding and research. lent joint initiatives and increased networking we focused on that topic (for example with Therefore, the greatest achievement of the between Member State organisations. The a Brain Awareness campaign) as improvement EAA is to serve as the glue that connects all issues provoked by dementia and our ageing in technology for healthcare and medicine players in the fi eld. society will not be going away soon! is crucial when it comes to a society that gets older. For this we need better connec- Julie Ward (S&D, UK) – Member of EAA tivity between researchers, universities, laboratories and health centres like hospitals Regarding key achieve- combined with more investments in research ments we must applaud and development of technology. the 2015 Luxembourg Presidency for being Hilde Vautmans (ALDE, Belgium) – Member explicit about the way in of EAA which dementia impacts many areas of life, not just the aff ected per- The European Alzheimer’s Alliance has Through the Act on son but the wider family, community and been active in the European Parliament Dementia Joint Action, society as a whole. The Presidency’s state- since 2007. The EAA is a non-exclusive, and other initiatives ment that the human rights of people with multinational and cross-party group that the EU has put demen- dementia must be respected was an impor- brings together Members of the European tia higher on the agenda tant reminder that we are dealing with people Parliament to support Alzheimer Europe and its members in making dementia a and encouraged Member who still have lives to lead, albeit in chal- public health priority in Europe. States to develop national identifi cation lenging circumstances. I was pleased to see The mission of the group is to send out the and treatment strategies. Similarly, it set the Presidency’s call for a gender-sensitive political message that concerted action is up information-exchange and expert coop- approach to research. This mirrors my own needed in the fi eld of prevention, diagnosis eration mechanisms in which government work on disability, women and mental health and treatment of Alzheimer’s disease, as offi cials can exchange best practices and and the promotion of intersectionality as a well as research and social policies. It also work toward a better treatment of this means of recognising multiple discrimination. seeks to promote actions to give dementia priority at European and national level. disease. The key achievement really is its response to a public cry for increased action The adoption of the EU Social Pillar in Goth- The group currently has 126 members from and eff ective measures. Since 2006 demen- enburg in 2017 was a crucial step towards 27 EU Members States. tia has been moving up the EU agenda, putting people back at the heart of the

Dementia in Europe 19 POLICY WATCH

By encouraging candidates to sign up to the Alzheimer Europe launches pledge, it gives us a strong basis on which to follow up with successful candidates aft er the European Dementia Pledge election has taken place. For details on the election pledge, campaign for the European Parliament resources and other relevant information, Elections – Get involved! please visit the Alzheimer Europe website. Changes to number of elected MEPs Alzheimer Europe has launched its Election Campaign for the European Parliament Elections ( 23 May – 26 May), asking It is useful to note that as a result of the UK’s exit from the European Union, there candidates to sign our pledge committing them to make has been a reallocation of some of the seats dementia a European priority. resulting in a change in the allocation of MEPs for some countries. Whilst there were a total of 751 MEPs elected in the 2014 election, at the 2019 election, there will be only Alzheimer Europe is pleased to launch its EU. Alzheimer Europe will campaign primar- 705 MEPs elected. Election Campaign for the European Parlia- ily through social media, but will also raise ment Elections, which will take place between awareness and encourage others to contact The table below shows how many MEPs will 23 May and 26 May 2019. their national candidates through our news- be elected in each country in 2019 – the num- letter and other channels. ber in brackets shows how many MEPs the As for previous European elections, country currently has. Alzheimer Europe, with the support of our We will also, on an ongoing basis, update members, will ask every person standing as the Alzheimer Europe website to show which a candidate for the European Parliament to candidates have signed up, listed by country, Germany 96 (96) show their commitment to supporting peo- and including information on the candidate’s France 79 (74) ple with dementia, their families and carers national party, European Party and a link to Italy 76 (73) by signing up to the pledge. their website/social media platform. Spain 59 (54) Poland 52 (51) Alzheimer Europe has put together a social These elections are crucial as they are the fi rst media pack in order to target candidates, step in our work to ensure that elected deci- Romania 33 (32) which has been shared with our mem- sion-makers at an EU level understand how Netherlands 29 (26) bers, as have translated versions of the they can make a diff erence to the lives of peo- Greece 21 (21) pledge, in each of the 27 languages of the ple with dementia, their families and carers. Belgium 21 (21) Portugal 21 (21) Czech Republic 21 (21) Sign the European Dementia Pledge 2019 Hungary 21 (21) y Join the European Alzheimer’s Alliance Sweden 21 (20) y Support the campaign of Alzheimer Europe and its member organisations to make Austria 19 (18) dementia a European priority and call for: Bulgaria 17 (17) — Increased EU funding for and improved collaboration in all areas of demen- Denmark 14 (13) tia research Slovakia 14 (13) — The launch of a European research mission to prevent or cure Alzheimer’s dis- Finland 14 (13) ease and other dementias Ireland 13 (11) — The development of a platform for the exchange of good practices between Croatia 12 (11) European countries on care approaches and services Lithuania 11 (11) — The recognition of dementia as a disability and the inclusion of people with dementia in EU disability policies Slovenia 8 (8) — The recognition of the impact of caring for people with dementia and the inclu- Latvia 8 (8) sion of carers of people with dementia in EU Social Pillar policies. Estonia 7 (6) y Become a Dementia Friend and support dementia-inclusive initiatives in your Cyprus 6 (6) countr y. Luxembourg 6 (6) Malta 6 (6)

20 Dementia in Europe POLICY WATCH

European Institutions reach agreement over European EU Member States need to Accessibility Act go above and beyond the scope of the Act if they want it The European Parliament and the Council have, after a number to make a difference. They need of years of negotiation, reached political agreement over “to ensure that persons with dis- the scope of a new directive aimed at improving the lives of abilities have the same access to people with disabilities. The European Accessibility Act aims places, products and services as to improve accessibility for a range of goods and services, everybody else.” whilst reducing divergent legislation across the EU. Yannis Vardakastanis

More than 80 million people in the EU are yy Audiovisual media services such as tel- Accessibility requirements, for example with affected by a disability to some degree, evision broadcast and related consumer regard to ramps, doors, public toilets and stair- with around 9 million estimated to have equipment cases, currently vary across EU countries. In some form of dementia. The accessibility yy Services related to air, bus, rail and water- order to make the built environment “contin- of goods, services and places is a precon- borne passenger transport uously and progressively more accessible” to dition for equal participation in day-to-day yy Banking services persons with disabilities, Member States are life. As such, the European Accessibility Act yy E-books encouraged to align their diverging require- was first proposed by the European Com- yy E-commerce. ments as much as possible. The co-legislators mission in December 2015, in order to bring introduced a review clause requiring the Com- benefits both for persons with disabilities The European Accessibility Act will facilitate mission to assess the situation five years after and for businesses producing relevant prod- the work of companies, and aims to bring the application of the Directive. ucts and services. benefits for persons with disabilities and elderly people in the EU. Businesses will ben- Micro-enterprises (organisations with fewer The Accessibility Act efit from the elimination of barriers caused than 10 employees) that provide services by a fragmented market, thanks to the cre- are exempted from the Directive and those After many year of negotiations, on 8 Novem- ation of a single set of requirements, which providing products will be exempted from ber 2018, the European Parliament and the will simplify cross-border trade. some obligations to avoid imposing a “dis- Council came to a provisional agreement proportionate burden” on them. Member on revisions to the Commission’s initial Exemptions States will have to provide guidelines to proposal. The Act aims to improve the func- micro-enterprises in order to facilitate the tioning of the internal market for accessible There is a feeling, amongst some, that the Act implementation of this legislation. products and services, by removing barriers did not go far enough and failed to live up created by divergent legislation through the to its name. For example, the European Dis- The Act provides an important step forward establishment of European-wide functional ability Forum (EDF) highlighted that the Act towards the inclusion of persons with disabil- requirements. This will be achieved through omitted key areas, which are vital in allowing ities. However, it would undoubtedly benefit accessibility principles, rather than prescrip- people with disabilities to go about every- from accessibility criteria, incorporating the tive detailed technical solutions, applicable day life, including transport or accessible built environment and transport. to: buildings and infrastructure. Yannis Varda- kastanis, MEP President of the EDF stated The provisional agreement will be submitted yy Computers and operating systems that “EU Member States need to go above to the Council’s Permanent Representatives yy ATMs, ticketing and check-in machines and beyond the scope of the Act if they want Committee for approval. Once the Member yy Smartphones it to make a difference. They need to ensure States’ Permanent Representatives confirm yy TV equipment related to digital television that persons with disabilities have the same the agreement, the European Parliament will services access to places, products and services as vote in the plenary session and the Council yy Telephony services and related equipment everybody else.” will conclude by the final adoption.

Dementia in Europe 21 POLICY WATCH

Our Work-Life Balance Commissioner Marianne Thyssen proposal is of particu- speaks to Alzheimer Europe lar importance to people living with dementia and their carers. about the progress of key “It includes provisions for carer’s leave and the right to request social reforms at an EU-level flexible working arrangements” Commissioner for Employment, Skills, Social Affairs and Labour Mobility, Marianne Thyssen, care for loved ones with dementia without having to give up or slow down their careers. has spoken to Alzheimer Europe to provide an Our proposal for a Directive is currently under update on areas of work such as the European negotiation by the European Parliament and the Council, who have the common ambi- Social Pillar and Work-Life Balance initiative, and how these tion to find agreement in the next weeks. aim to improve the experience for people with dementia, their The precise timeline for implementation will depend on the final agreement between the families and carers. co-legislators.

What do you believe remains the single Over one year has passed since the adop- products and services, such as phones, bank- greatest challenge in ensuring that people tion of the European Pillar of Social Rights, ing services and the 112 emergency number, with dementia and their carers, remain what progress has been made to realising accessible to persons with disabilities and active citizens within their communities? its principles? older people. To make the Pillar a reality on the ground, for tangible results and a As Europe’s population is ageing, the number The proclamation last year by the three politi- meaningful impact in the everyday lives of of people with dementia is on the rise. Find- cal European institutions was not the end but Europeans, we have to continue our action at ing a suitable cure might stop this increase. the beginning of a process, a commitment to all levels. European countries must continue In the meantime, people with dementia need work together to reach our goals. This is what their efforts, in close cooperation with social quality care to help them manage their con- we have been doing – we are implementing partners and civil society. The European Com- dition, avoid unnecessary hospitalisations the Pillar together at all levels: local, national mission is steering this process through the and stay as independent as possible. Main- and European, together as public authori- European Semester, the annual cycle of social taining social ties is particularly important, ties, social partners and Non-Governmental and economic policy coordination. Further- as loneliness and isolation can accelerate the Organisations (NGOs). As Commission, we more, the Commission monitors performance progression of the disease. launched a number of proposals and we are in each Member State and steers the process working very hard with the Council and the of upwards convergence through the social Receiving a diagnosis of Alzheimer’s disease Parliament, to finalise them. One example is scoreboard. or being faced with symptoms of dementia to ensure that everybody can have access to can be a shock to patients and their families, social protection that Member States provide As the Work-Life Balance initiative moves who often have to manage on their own. Tar- for adequate and effective coverage. Another into the negotiation stage between the geted support for people living with dementia example to enable men and women to rec- Commission, Parliament and Council, what and carers is therefore vital. It should be oncile work with caring obligations. Our is your hope for the final version of the ini- provided in a coordinated way to avoid that Work-Life Balance proposal is of particular tiative and what is the expected timeline people living with dementia need to navigate importance to people living with dementia for implementation? the maze of different services in the already and their carers. It includes provisions for crumbling world they live in. carer’s leave and the right to request flexi- The key objective of the Work-Life Balance ble working arrangements for people caring initiative is to address women’s under- for a dependent relative. representation in the labour market by promoting the equal sharing of caring My ultimate goal is that A milestone was reached in November, when responsibilities between women and men. women and men can care the European Parliament and the Council With this initiative, we are offering more pos- for loved ones with dementia came to a provisional agreement on our pro- sibilities for parents and carers to reconcile posal for a European Accessibility Act. This their professional and caring responsibilities. without having to give up or new legislation will make many everyday My ultimate goal is that women and men can “slow down their careers.”

22 Dementia in Europe POLICY WATCH

Across Europe, there are a few demen- European funding for social innovation will hopefully pave the tia friendly initiatives, but more is needed. European funding for social innovation will way for further bright ideas in providing care to people with hopefully pave the way for further bright dementia, while the new generation of Structural Funds should ideas in providing care to people with demen- help turn these ideas into regular practice .” tia, while the new generation of Structural Funds should help turn these ideas into reg- “ ular practice. European Social Fund Plus will merge existing funds in the social and health fi eld. Combin- In the context of the Multiannual Finan- ing diff erent funds will help us tackle major cial Framework (MFF), how do you see the challenges with a bigger impact. The new fund future of the European Union’s activities will for instance help European countries to in the social and health fi eld? test innovative solutions for the health systems of tomorrow. As budgets remain under Profi le We want to strengthen the Union’s social pressure across Europe, the structural funds Marianne Thyssen was appointed as the dimension in the next long-term EU budget for allow us to make wider investments, into peo- European Commissioner for Employment, 2021–2027. The Commission proposed a Euro- ples’ health, supporting longer-term outcomes Social Aff airs, Skills and Labour Mobility in November 2014. She previously served pean Social Fund Plus with a budget of EUR that go beyond traditional health spending. as a Member of the European Parliament 101 billion, geared towards investing in people. For example, by educating young Europeans between 1991 and 2014. We want to ensure people are equipped with in healthy lifestyles we save lives and money the right skills needed to deal with challenges in future. Investments to promote healthier @mariannethyssen and changes on the labour market, in line work environments, or support for education www.ec.europe.eu/social with the European Pillar of Social Rights. The and training programmes do the same.

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Dementia in Europe 23 0195.23-Biogen-CorporateAd-Alzheimers-Alzheimer-Europe-02.indd 1 24.05.18 17:20 POLICY WATCH

The Innovative Medicines Initiative celebrates ten years of breakthroughs In October 2018, the Innovative Medicines Initiative (IMI) th celebrated the 10 anniversary of its first call for proposals, th showcasing the achievements of its projects through a IMI 10 Anniversary Scientific Symposium communication campaign over several months. A highlight of the year was the IMI Scientific Symposium held on 22 and 23 October 2018 in Brussels, where young researchers from IMI What is IMI? objectives. Public-private partnerships such projects had the opportunity to present their as IMI are making the lives of Europeans bet- work and showcase outstanding project out- In 2007, the European Commission released ter, create jobs and boost our competitiveness. comes. The scientific programme covered four a proposal for the creation of a public-pri- They deliver results that single companies or main areas (stratification towards personal- vate partnership between the European countries could not achieve alone”. ised medicines, patient centric approaches Community, represented by the European in drug development, enablers for discovery Commission and the European Federation and development of new drugs, collaborating of Pharmaceutical Industries and Associa- to fight infections), reflecting the particular tions (EFPIA). advantages of conducting research in public-private-partnership consortia. It featured The initiative aims to improve health by 72 poster and 28 oral presentations selected speeding up the development of, and patient IMI: Celebrating 10 Years of Medical by a Programme Committee comprising access to, innovative medicines, particularly Innovations top experts. As part of the celebration, IMI in areas where there is an unmet medical or awarded a prize to the three best poster and social need. IMI projects aim to provide Euro- On 27 June 2018, over 400 people joined IMI, oral presentations at the end of the event. peans, including the increasing number of the European Commission and EFPIA for a Prizes were also awarded for the best IMI pro- older people, with more efficient and effective celebration of IMI’s 10th anniversary at the ject communication materials. These were medicines and treatments. IMI does this by European Commission in Brussels. The goal selected by a committee of staff from IMI, the facilitating the collaboration between the key of the event was to highlight the successes European Commission and EFPIA. players involved in health research, including of IMI projects, showcasing tangible results academia, industry, small and medium-sized which have translated into concrete bene- enterprises, patient organisations and medi- fits for European citizens. During a plenary cines regulators. session, speakers from diverse backgrounds highlighted the way IMI has brought together IMI refers to two consecutive programmes: people from universities, industry, small IMI1 (2008–2013) and IMI2 (2014–2020). Dur- and medium-sized enterprises, patients, ing those 10 years, more than 100 projects and regulators to tackle major research and have been carrying out ground-breaking healthcare challenges. work on a variety of topics, including severe asthma, Alzheimer’s disease, diabetes and Project representatives described how IMI cancer. These delivered numerous tools and had contributed to specific results in their IMI Stakeholder Forum 2018 resources as well as generating more than fields. Commissioner Moedas gave a talk and 4,000 publications to help researchers speed described the cultural shift this had brought The subsequent IMI Stakeholder Forum 2018 up the development of urgently needed about as one of the biggest achievements took place on 24 October in Brussels under treatments. of IMI, and described IMI’s work as ‘radical the banner “The value of cross-sectoral health collaboration’. In addition, the exhibition research and innovation”. The event looked Following a detailed analysis of IMI’s first pro- gave attendees the opportunity to meet IMI at IMI through the lens of cross-sector col- jects by independent experts into their project participants and see first-hand IMI laboration and discussed the added value of socio-economic impacts, Carlos Moedas, Euro- project results in areas such as cancer, antimi- technology convergence to address complex pean Commissioner for Research, Science and crobial resistance, Alzheimer’s disease, digital health challenges, especially in those areas Innovation, said: “…IMI is delivering on its health and Ebola. where there is a huge public health need.

24 Dementia in Europe POLICY WATCH

Involvement of Alzheimer Europe

To mark this anniversary, IMI also prepared a Dr Mathieu Boudes, PARADIGM Project series of videos with testimonials from its key Coordinator, European Patients’ Forum partners and stakeholders. It launched several “Project Participant Testimonial” videos, “PARADIGM aims to participate in the for which Alzheimer Europe’s Executive Direc- co-creation of a framework to advance tor, Jean Georges provided the perspective of a patient engagement in medicines devel- patient organisation. opment and therefore umbrella patient organisations such as Alzheimer Europe Alzheimer Europe is uniquely placed to share are key to bring in the perspectives of the the views and lived experience of people with members of those organisations in our dementia, to ensure ethical issues are taken work. It has a multiplying eff ect.” into consideration and to help with the communication of project aims/achievements to the general public and its network of patient and carers’ organisations. Alzheimer Europe has been an active partner in many IMI Dr Laura Campo, MOPEAD Project Leader, dementia and Alzheimer’s disease focussed Eli Lilly undertakings from the launch of the fi rst dementia related project on. “The MOPEAD Project aims to encourage a cultural shift towards a timely diagnosis of Mr Georges commented on Alzheimer Alzheimer’s disease during the very early Europe’s involvement in IMI projects, high- symptomatic stages of the disease. Ethi- lighting that IMI’s patient-centric approach cal implications of an early diagnosis and deepens collaboration between scientists and external engagement are key components researchers and those who stand to benefi t. of the project. Alzheimer Europe, in a true People with dementia have been at the fore- spirit of collaboration, gave an invaluable front of this trend. IMI lets Alzheimer Europe contribution by producing the project’s involve people with dementia in advisory ethics guidance and fostering an eff ective roles within projects. This participation is communication. This was a great benefi t vitally important; people with dementia are for the project and underscored the impor- increasingly eager to be part of every decision tance of value partnerships with patient that concerns their welfare and care. On page organisations, with the ultimate and com- 26, we have included an overview of IMI pro- mon goal to improve the environment for jects in which Alzheimer Europe has been and people living with Alzheimer’s disease.” is participating in as an active partner.

Dr Pierre Meulien, Executive Director, Innovative Medicines Initiative (IMI)

“Alzheimer’s disease represents a major chal- A large-scale, multi-stakeholder, collab- lenge for public health, and we urgently orative approach is essential if we want need new strategies to prevent the onset of to make progress on these points, and disease, slow its progression and, ultimately, patients and carers must be at the heart cure it. However, the brain is extremely com- of these collaborations. As such, I am plex, and developing Alzheimer’s treatments delighted that Alzheimer Europe is an is far from easy. We need to attack it at dif- active participant in so many of our pro- ferent levels, ranging from understanding jects. They do a fantastic job of bringing the basic mechanisms of the disease, to to the scientists the needs, opinions and stratifying patients, and defi ning strate- knowledge of people with dementia. I gies for early intervention. We also urgently know they also report back to their com- need eff ective treatments for the psychiatric munity as well as to the wider public on symptoms of Alzheimer’s disease. the results of our projects.”

Dementia in Europe 25 POLICY WATCH

Overview of IMI Projects

PharmaCog (2009–2011) Prediction of Cogni- AETIONOMY (2014–2019) Organising Knowl- PARADIGM (2018–2020) The Patients Active tive Properties of New Drug Candidates for edge about Neurodegenerative Disease in Research and Dialogues for an Improved Neurodegenerative Diseases in Early Clini- Mechanisms for the Improvement of Drug Generation of Medicines project’s mission cal Development. The project focussed on Development and Therapy. AETIONOMY is to provide a unique framework that ena- increasing the ability to predict new eff ec- sought to identify subgroups of demen- bles structured, eff ective, meaningful, ethical, tive medicines from laboratory studies and tia and Parkinson’s disease – based on the innovative, and sustainable patient engage- clinical models. underlying genetic or molecular causes of the ment and demonstrates the “return on the www.alzheimer-europe.org/Research/ variants – in order to allow tailored therapies. engagement” for all players. PharmaCog www.aetionomy.eu www.imi-paradigm.eu/ PharmaCog – grant agreement 115009 AETIONOMY – grant agreement 115568 PARADIGM – grant agreement 777450

EMIF (2013–2017) The European Medical Infor- EPAD (2015–2020) European Prevention of mation Framework project has connected Alzheimer’s Dementia. The goal of the initi- data on 52 million individuals, deciphering ative is the prevention of dementia in people MOPEAD (2016–2019) The Models of Patient links between genetic background, biolog- with evidence of the disease (such as bio- Engagement for Alzheimer’s Disease project ical abnormalities, brain imaging changes, marker abnormalities) who still may have aims to deliver a step-change in Alzheimer’s mental symptoms and disease progression. little or no complaints or clinical symptoms. disease patient engagement strategies and www.emif.eu/ www.ep-ad.org/ a paradigm shift from late-stage diagnosis EMIF – grant agreement 115372 EPAD – grant agreement 115736 to early-stage diagnosis. www.mopead.eu/ MOPEAD – grant agreement 115985

ROADMAP (2016–2018) The “Real World AMYPAD (2016–2021) The “Amyloid imaging to Outcomes across the Alzheimer’s Disease prevent Alzheimer’s disease” project aims to spectrum for better care: Multi-modal data improve the diagnostic workup of patients Access Platform” project provided the foun- suspected to have Alzheimer’s disease and dation for an integrated data environment their management. and framework for real-world evidence in www.amypad.eu/ Contact Alzheimer’s disease. AMYPAD – grant agreement 115952 www.roadmap-alzheimer.org/ ROADMAP – grant agreement 116020

IMI acknowledgement Innovative Medicines Initiative These projects, in which Alzheimer Europe is IMI2 JU, TO 56, B-1049 a project partner, receive funding from the Brussels, Belgium Innovative Medicines Initiative and Innovative Medicines Initiative 2 Joint Undertakings. The @IMI_JU Joint Undertaking receives support from the [email protected] European Union’s Horizon 2020 research and www.imi.europa.eu innovation programme and EFPIA. +32 (0)2 221 81 81

26 Dementia in Europe POLICY WATCH

German Government commits to developing national dementia strategy The German Federal Government has announced its intention to develop a national dementia strategy for Germany, following

the launch of the “Alliance for People with Dementia 2014– Jens Spahn and Franziska Giffey launch the Alliance for 2018” report. Dementia report

The German Federal Government has given The “Alliance for People with Dementia” Speaking at the launch of the new report Dr its approval for the development of a German brings together federal, state and local Giffey said: “Dementia can affect any one of National Dementia Strategy. In September umbrella organisations as well as more than us, and the diagnosis must not lead to people 2018, Federal Health Minister Jens Spahn of 20 associations and institutions from the being excluded from society. The report shows the Christian Democrats (CDU) and Federal nursing and health sector, science and civil that we have been able to address the lives of Family Minister Franziska Giffey of the Social- society, including the German Alzheimer’s many people with illnesses and their loved ists (SPD) announced the decision as part of association (Deutsche Alzheimer Gesellschaft ones through a host of concrete measures. We the launch of the “Alliance for People with – DAlzG). Monika Kaus, Chairperson of the are also starting to develop a National Demen- Dementia 2014–2018” report outlining some DalzG commented: “It is necessary to go on tia Strategy, one of the main priorities for me of the work on dementia, including around working together to support people with is to be able to improve the conditions for the 450 projects, which have taken place across dementia and their families. For this work, development of a National Dementia Strategy. Germany over the past four years. resources are needed.” For example, our goal is to create equal, good quality local contact points across the country”. 1.7 million people currently live with demen- People with dementia and tia in Germany. Every year, the number of In addition, Mr Spahn commented: “People their families are at the people with the condition is estimated to with dementia and their families are at the heart of society, it’s no longer increase by about 40,000. Based on these heart of society, it’s no longer taboo to talk projections, it is estimated that by the year about dementia, we need a dementia-friendly taboo to talk about dementia.” 2050, the number of people diagnosed with society, and the Alliance has made important “ Alzheimer’s disease or another form of other progress for people with dementia – but we Jens Spahn dementia will rise to over three million people. need to continue as a society. Working to make life more liveable for people with dementia and their relatives, that is why, together with Stakeholders come together for the launch of the report my colleague Dr Franziska Giffey, I will launch the National Dementia Strategy, which builds on the Alliance’s proven cooperation with people with dementia. This includes good nursing and medical care as well as an understanding in everyday life – in medical practices, hospitals, public offices or in the supermarket”.

The findings from the Alliance for People with Dementia report will be used to inform the new strategy, as well as the development of a specific office within the German Centre for Gerontology, which will be jointly funded by the two Ministries. Work to develop the country’s dementia strategy commenced on 21 January 2019, with the intention of comple- tion and sign-off from the Federal Cabinet by the beginning of 2020.

Dementia in Europe 27 DEMENTIA IN SOCIETY

more in its activities (e.g. in working groups Helga Rohra reflects on her and at conferences) and we took the opportunity to share ideas on how to involve people with dementia more fully in the organisa- time giving a voice to people tion, including on the Board. That was the point when the EWGPWD was born! A historic with dementia in Europe moment in the dementia movement!

On 4 December 2018, Helga Rohra said goodbye In spring 2012, a group of people with demen- to her colleagues in the European Working tia together with staff from their national Alzheimer organisations met in Glasgow Group of People with Dementia (EWGPWD) after to learn how a working group can function. six years in the group. She spoke to us about Scotland, with its Scottish Working Group, had already some experience and were the her time in the group and the achievements she first in Europe. What an honour to meet and deems most important. learn from my friends there!

Later in 2012, the EWGPWD was founded You were a founding member of the speaker. Together with my colleagues from as an Advisory Group of Alzheimer Europe. European Working Group of People with Scotland and Poland we were a kind of high- I strongly believe that the very beginning Dementia (EWGPWD), which was formed light: people with dementia at younger age should never be forgotten as well as the first in October 2012 and met for the first time (we were in our fifties at that time). The inter- people with dementia involved. My personal at the 22nd Alzheimer Europe Conference. action with many other participants gave me motivation to join was the chance to work, to What were your reasons for joining and confidence in our still existing abilities. At a get involved at a European level, to learn from what were your expectations? Were these previous Board meeting, I had already empha- other Alzheimer organisations. The main expectations met? sised the need for people with dementia to reason was my wish to show the world that be more involved, a point on which Jean people with dementia are still valuable and Let me go back to the year 2011. I can remem- Georges, Executive Director of Alzheimer to change the perception on dementia: “See ber the Alzheimer Europe Conference in Europe was in agreement. Alzheimer Europe us, not only our disease!” I was convinced Warsaw (Poland), at which I was invited as a was keen to involve people with dementia that as part of a group and with the support

Helga Rohra accepts her EWGPWD plaque and gives a farewell speech at the AE lunch debate in the European Parliament in Brussels, 4 December 2018

28 Dementia in Europe DEMENTIA IN SOCIETY

of Alzheimer Europe we can do very valuable projects like INDUCT or ROADMAP – to name activities we carry out, giving us the oppor- work in this respect. just a few. tunity to talk, to activate people in our own countries, to include us in projects. My expectations today – aft er 6 years work in Our contribution in writing papers, even the group – have been more than met and I books about ethical aspects or rights of peo- The political sector, especially the social and feel very honoured and happy to have been ple with dementia was also very important. health sector could be infl uenced in a very a part of amazing projects. positive way by giving people with dementia What do you think has been the EWGPWD’s “power” to represent themselves. What did it mean to you to be the group’s biggest achievement so far and what do you fi rst Chairperson, and could you share some hope it can achieve in the future? Honestly, I tell you, I feel sad that my friends things that were/have been important to in the group are not honoured in all the coun- you, both in your role as Chair and as a The major achievement, in my mind, was our tries. We are all heroes – we are all working member of the group? very active participation in the recognition of for a better dementia world! dementia as a disability. We helped write his- To become the group’s first Chairperson tory in this fi eld! Our pioneering work will be I am also confi dent that working groups of meant a lot to me. Like in ordinary life, this honoured by the coming generations! people with dementia will and have to exist in means responsibility, a need for a good com- every country! I also have a dream: A person mand of the English language, good insights I strongly believe that the members of the with dementia as a Member of the European in dementia-related topics, a tough way to EWGPWD can achieve changes in their own Parliament! represent our voice at meetings. countries, can be active partners in dementia strategies. As such a passionate advocate for the rights The very sensitive diff erence I always felt was of people living with dementia, what are the balance between feelings! The members I am very confi dent that the EWGPWD will join your plans for further work in this area? still have abilities and are passionate to con- in global projects, since we are the experts! tribute in projects, BUT they are fragile and I will carry on my work for the rights of people tears or sadness are a part of this as well as The group was originally formed to ensure with dementia! My focus is on people with very personal issues. I had one aim: to make that the activities of Alzheimer Europe duly dementia at a younger age and their inclusion everyone feel valued and feel comfortable in refl ect the priorities and views of people in the workplace. I am involved in projects the group! And I know I did a good job! with dementia. In your view, has this been like; “Migrants and dementia” and “Lesbian, achieved? Gay, Transgender and Bisexual (LGBT) com- I myself experienced an enormous uplift by munities and dementia”. being a Chair. I was grateful that I could carry The activities of Alzheimer Europe defi nitely on a part of my former life, before my diag- refl ect our views and focus on our priorities. My current favourite is: “Care farms”, where nosis. Alzheimer Europe and the EWGPWD I’d like to point out that the staff of Alzheimer people with dementia are both working and became a kind of family. Europe not only gives us the professional but LIVING on the farm. And... I am writing my also the sometimes needed moral support! new book about relationships and the world Dementia remains a key part of my life, a pos- The projects are discussed and evaluated. I of feelings in dementia. itive topic – a start of a new, a diff erent life. always felt like a partner in a team! I have deep appreciation for this attitude! I think I will of course be present at the next I started to write books to encourage people each member feels highly valued in his or her Alzheimer Europe Conference in The Hague with dementia to LIVE, to get active in their advisory function and there lies the unique- with an abstract. My passion for the EWGPWD own associations. ness of Alzheimer Europe and our EWGPWD. and Alzheimer Europe will go on.

What would be one or two personal high- We are examples to be followed by other lights from your two terms in this position patient organisations! (2012–2014 and 2014–2016)? What are some of the main obstacles Profi le The EWGPWD and our achievements are sim- encountered in the important work the Helga Rohra is an author and a dementia ply unique! In 2012 and even some years aft er, group does? activist. She was a founding member of very few patient organisations had patients the European Working Group of People who spoke for themselves. Some of the main obstacles are sadly our with Dementia (EWGPWD) and was the own national organisations that we repre- group’s fi rst Chairperson (2012–2014 and 2014–2016). She left the group in 2018 aft er We were invited as keynote speakers or sent. I noticed in all these years that some 6 years. partners in workshops with professionals. support their members, such as Wales, Ire- A highlight was our involvement as co-re- land and Scotland – to name some of them. @ContactHelga searchers, and being partners in many By “support” I mean: showing interest in the

Dementia in Europe 29 DEMENTIA IN SOCIETY

involvement of people with dementia in pro- Flanders forms a working group ject development, research and policy advice; valuing the expertise of people with dementia as the starting point to help reduce the of people with dementia stigma around dementia.

Olivier Constant, Communications Officer So far, so good at the Flanders Centre of Expertise on Since the group is brand new, we are focus- Dementia and Hilde Lamers, Director of the ing on creating an open, strong partnership Alzheimer’s League Flanders tell us about the very first working between the members, as a foundation to group of people with dementia to be formed in the Flemish move forward with tangible actions in 2019. We have already involved some of our mem- Region (Belgium). bers in the creation of a brand new animation movie for our awareness-raising campaign. It was released during the kick-off of the cam- On 11 October 2018, the brand new ‘Flemish organisation, the Alzheimer’s League Flanders, paign on 7 January 2019. The video is available Working group of people with dementia’ held to translate the ambitions for this new work- to watch at: www.onthoumens.be/in-beeld/ its first meeting. The group operates at the ing group into practice. The idea of the group animatiefilm-vergeet-dementie-onthou-mens regional level of Flanders in Belgium. is also in line with the Updated Dementia Plan for Flanders 2016–2019, authored by Jo Van- Two of our members also shared their tes- The origins of the group deurzen, Flemish Minister for Welfare, Public timonies in front of large audiences. On 25 Health and Family. This plan encourages us October 2018, Paul presented at a conference The idea grew initially from the mission of the to strengthen the autonomy of people with on the “Reference framework for quality of Flemish awareness-raising campaign “Forget dementia and their family caregivers. life, housing and care for people with demen- dementia, remember the person”, which is tia” and on 30 October, Geert gave a short coordinated by the Flanders Centre of Exper- The members speech during the Special Symposium of tise on Dementia (Expertisecentrum Dementie the European Working Group of People with Vlaanderen en de regionale expertisecentra) At the moment, we have five people with Dementia (EWGPWD) at the 28th Alzheimer in cooperation with the Alzheimer’s League dementia involved, together with their family Europe Conference (28AEC) in Barcelona. Flanders (Alzheimer Liga Vlaanderen), the caregivers. It is our ambition to involve people Association of Flemish cities and munici- with dementia in all stages of the condition, Building a strong foundation for the future palities (Vereniging van Vlaamse Steden en not only in the first phase of dementia and not Gemeenten), the Flemish Elderly Council only people who are younger than 65 years. In terms of what to tackle as a first project for (Vlaamse Ouderenraad) and the King Baudouin the group to work on, there many ideas, which Foundation. The Flanders Centre of Expertise Goals and ambitions are detailed in an action plan emerging from on Dementia started brainstorming about the our second meeting, which took place on 18 idea at the beginning of 2018, together with Together with the members, we have defined December 2018. A strong contender would be the other plans for the new chapter of ‘Forget some clear goals and ambitions for the group to produce a communication advice document dementia, remember the person’. The centre in Flanders: Reaching out more proactively to for the media, to encourage them to use more joined forces with the patient and volunteer the media and opinion makers; meaningful respectful language and to portray dementia and people with dementia a more realistic way. 2nd meeting of the Flemish working group of people with dementia, 18 December 2018 We believe that these first steps we have taken are taking us on a promising and inspiring journey that will lead to more results and an integrated vision by the end of 2019. Ensuring the sustainability of the group will be challenging, of course. It will require balancing the meaningful involvement of group members, while maintaining a balance between their personal needs and producing tangible results, but the positive energy of the true experts – the people with dementia and their loved ones – is definitely a solid basis for the future.

30 Dementia in Europe DEMENTIA IN SOCIETY

Geert Van Lae r, a member of the European and Flemish working groups Contact

Geert was born in a small village called Merksplas in Belgium. His father was a dairy farmer but Geert chose to study digital technology. He worked for 30 years as a telecom soft ware engineer and spent a lot of time in Norway, Germany, Israel and China with his job. Even when he was at the head offi ce in Antwerp, Belgium, he Hilde Lamers, Alzheimer’s League Flanders was working with people from all over hilde.lamers@ the world. alzheimerligavlaanderen.be www.alzheimerliga.be In 2017, he received a diagnosis of early “Involvement of people with dementia in stage dementia and in 2018 he was nom- creating inclusive communities is essential, Olivier Constant, Flanders Centre of inated by Ligue Nationale Alzheimer but I’m convinced that we need more guid- Expertise on Dementia Liga and became a member of the Euro- ance to make it work. Everybody moves [email protected] pean Working Group of People with at his or her own pace. A kind of proce- @EcdOlivier Dementia. He is also a member of the dure that describes the steps people with www.dementie.be newly launched Flemish working group dementia and their loved ones can take to Campaign website for ‘Forget dementia, of people with dementia. reach out to local policy makers would be remember the person’: really useful for the future.” www.onthoumens.be

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professional boards and academies, public Fostering multidisciplinary administrations, municipalities, charities, nursing home operators, business schools, commercial chambers, social enterprises and exchange towards person- start-ups. Through capacity building at the institutional level the project adopts a top- centred dementia care down strategy that will lead to a broad and sustainable change of care practice for all rel- The EU project INDEED is developing an evant actors. intervention to support occupational INDEED currently develops a skill-building collaboration, to improve care for people educational intervention based on multidis- with dementia in the Danube region. Project Coordinator ciplinary exchange, addressing institutions. Alexander Kurz and Project Manager Lea Pfäff el tell us more. This intervention consists of three modules: y An interprofessional educational and skill-building module addressing all occu- y Insuffi cient knowledge and skills of all pational groups (CAMPUS); professional groups involved in dementia y A networking tool for professions to care, including general practitioners (GPs), support interprofessional and interinsti- nurses, social workers, occupational thera- tutional cooperation (CONNECT); pists, physical therapists and pharmacists y Business counselling to stimulate entre- INDEED y Poor collaboration of these professional preneurial activity in the fi eld of dementia groups and insuffi cient coordination of care (COACH). As in other parts of Europe, dementia has services become a major health and social chal- y Lack of dementia-specifi c services and CAMPUS will provide a comprehensive over- lenge in the countries of the Danube region: facilities, particularly day centres, respite view of information that all occupations Upstream, in countries like Germany or Aus- care and special care units in institutions involved in dementia care should have access tria and downstream in Bulgaria or Romania. y Low level of public awareness of demen- to. It will encompass topics such as the mag- It is estimated that at least 3 million older tia and high level of stigma. nitude of dementia, the importance of timely adults are currently living with dementia in diagnosis and the need for multiprofessional the geographical area. Meeting the need for multiprofessional dementia management. This form of shared collaboration learning is not intended to replace but com- Due to increasing longevity, the number of plement profession-specifi c education and people with dementia is predicted to rise by The initiative “Innovation for dementia in training. Also the common knowledge base 50% by 2030 in Eastern and Southern Europe. the Danube region” (INDEED) is a project will facilitate mutual understanding and At the same time, the age dependency ratio supported by the European Union in the exchange. (the ratio of people aged 65 years or above framework of the INTERREG-Danube Trans- relative to the population of working age) is national Programme from 2018 to 2021 with CONNECT will portray diff erent occupations expected to increase. The health and social funds from the European Regional Develop- involved in dementia care and showcase their systems of many countries are not optimally ment Fund (ERDF) and the Instrument for respective services. Presenting the various prepared to tackle this societal challenge. Pre-Accession Assistance (IPA). Twenty part- contributions to dementia care and illustrat- ners from 10 countries are working together, ing where they are off ered, will be the fi rst An additional problem in the Danube region representing academia, business, public step towards multiprofessional person-cen- is the outward migration of skilled health authorities and the civil sector. An interven- tred dementia care. workers (“care drain“) driven by economic tion is being developed, bridging the gaps reasons which is resulting in a lack of qual- mentioned above. The vision is to strengthen COACH will provide real-life examples of ifi ed personnel and reduced family support. competences, cooperation and innovation good practices regarding business models A survey among experts from all 14 countries of diff erent institutions involved in demen- in dementia care. Also, it will introduce basic of the Danube region (9 EU Member States: tia care through multidisciplinary exchange. knowledge about developing a business plan Austria, Bulgaria, Czech Republic, Croatia, as well as about market analysis. The concept Germany, Hungary, Slovak Republic, Slove- A triple pillar educational intervention of social entrepreneurship as an innovative nia and Romania. 5 non-EU countries: Bosnia model in dementia care will be highlighted. and Herzegovina, Moldova, Montenegro, Ser- INDEED aims at enhancing competences and bia and Ukraine) in 2018 identifi ed major gaps skills of key institutions involved in dementia By enhancing the collaboration among occu- in dementia care: care, comprising medical and nursing schools, pations in dementia, the quality of care for

32 Dementia in Europe DEMENTIA IN SOCIETY

intervention’s content. In liaison with public authorities and policy makers the intervention will be adapted to concrete national needs. The fi nal intervention package will be made available to all interested institutions within and outside the Danube region.

Project partners

Austria: The Brain Company, Gmunden; Vienna University of Economics and Busi- ness, Vienna.

Bosnia and Herzegovina: Association AiR, Sarajevo; Ministry of Health of the Feder- ation of Bosnia and Herzegovina, Sarajevo. INDEED DTP kick-off meeting , 25–26 September 2018 Bulgaria: Medical University of Sofi a; Bul- people with dementia will be increased, in four countries (Bulgaria, Romania, Slova- garian Society of Dementia, Sofi a. accommodating the concept of person-cen- kia and Slovenia). Representatives of relevant tred care. Activities connected to the institutions as well as policy makers from the Croatia: University of Zagreb; City of Zagreb; implementation of the INDEED intervention region but also from neighbouring countries Ministry of Health Croatia. will also contribute to the development of will be invited to these workshops to stim- national dementia plans. ulate cross-border collaboration. During the Czech Republic: National Institute of Mental workshops, presentations will be held, printed Health, Prague; MediWare Medical Engineer- Blended-learning as a new format for materials will be provided and group work ing, Prague. dementia-related skill-building in the Dan- using the online platform will be arranged. ube region Also, the workshops will incorporate specifi c Germany: Klinikum rechts der Isar of Tech- region conditions. The moderation will be per- nical University Munich; Bavarian State There are a multitude of online courses avail- formed by teams consisting of one facilitator Ministry of Health and Care, Munich; Bavar- able about dementia. Some are accessible who will be active in all four countries and by ian Research Alliance, Munich; German to the general public and to informal carers, another facilitator from the respective country. Alzheimer’s Association, Berlin. while others target professionals as part of The workshops will be held in English. their vocational or ongoing training. In con- Hungary: Social Cluster Association, Budapest. trast, INDEED delivers the three modules To meet the needs and preferences of users, CAMPUS, CONNECT and COACH in a blend- to align the intervention with evolving Romania: Romanian Alzheimer Society, ed-learning concept combining a multimedia national dementia plans and to ensure its Bucharest. platform with traditional formats such as sustainability, key stakeholders are involved presentations, workshops, fl yers and booklets. throughout the project. The principle of par- Slovak Republic: Memory Center Bratislava; The INDEED consortium considers face-to- ticipative design has already been applied Slovak Medical Association, Bratislava; Slo- face workshops to be an essential tool to during the initial INDEED “policy assess- venia: University of Ljubljana. enhance cooperation, but considers online ment session” at the kick-off meeting. At learning as a second pillar of intervention this event, a group of 15 selected representa- delivery. The online platform has the advan- tives of diff erent institutions gave extensive tage of being accessible in rural areas where insights into the current state of dementia direct exchange among various professions care in the Danube region. The next partic- is diffi cult because of long distances. In addi- ipatory event will be in spring 2019 where Contact tion, the internet-based parts of the modules three focus groups on dementia educa- Prof. Dr Alexander Kurz, Project Coordinator will include more detailed information and tion will be conducted in three Danubian profession-specifi c learning contents from countries. [email protected] which users can select their preferences. Dissemination activities Lea Pfäff el, M.Sc., Project Manager Testing the strategy lea.pfaeff [email protected] The experience gathered from the partic- www.interreg-danube.eu/approved- The educational and skill-building intervention ipatory events and the pilot workshops projects/indeed will be fi eld-tested in a series of workshops will be used to refi ne and complement the

Dementia in Europe 33 DEMENTIA IN SOCIETY

can cause financial problems, particularly Public opinion overwhelmingly among retired people. This ministerial decision is very unfortunate and, to put it bluntly, against French decision to stop incomprehensible. reimbursing Alzheimer’s drugs This ministerial decision is very unfortunate and, to A recent national survey in France showed an put it bluntly, incomprehensible.” overwhelming majority of the public disagreed with the government’s decision to stop “ reimbursing anti-dementia drugs. Prof. Bruno There have been a number of groundless media claims that anti-dementia drugs do Dubois spoke to us about the results of the survey and about “more harm than good” (although, reassur- the impact of this controversial government decision. ingly, these survey results show that public opinion in France has not been swayed by such sensationalist reporting). Can you give According to the press release published on vivo; symptoms are well identified and spe- us your assessment of the efficacy of these World Alzheimer’s Day 2018 by the Société cific. Memory problems related to AD are drugs and the reality of the benefit-harm Française de Neurologie (SFN), Recherche sur different from those related to ageing. Thanks ratio? Alzheimer and France Alzheimer, there is a to specific tests, we now know how to bring question mark, for some, over the very exist- them to the fore. There is no room for confu- These drugs have shown real efficacy on the ence of Alzheimer’s disease (AD) and a belief, sion. It is extremely rewarding and pleasing to symptoms of patients. Moreover, drugs do still, that what we talk about as AD is sim- see that the French people, in the overwhelm- not obtain market authorisation without ply the brain ageing. Survey respondents are ing majority of cases, are well aware of this. clear proof of their benefits. Their efficacy almost unanimous (90%) in agreeing that it has been demonstrated in studies, initially is indeed a very real disease, going some way The survey seems to show that French conducted over 6 months, and later con- to allaying fears that such a groundless belief people have a good understanding of the firmed in longer-term studies. They have might be widespread. Was this the main rea- impact and reach of AD and dementia. This also shown the ability of these treatments to son for doing the survey and are you pleased same, well-informed population disagrees delay institutionalisation and to reduce car- with this result? overwhelmingly (80%) with the decision egiver-burden. The DOMINO study found that made by the Ministry of Health to stop the number of entries into institutions was There have long been schools of thought reimbursing anti-dementia drugs. Are higher among patients who had discontin- that seek to dismiss reality, even where you surprised by this level of opposition? ued treatment than in those who continued. AD is concerned. And in good faith, with- What do you think the reasons are for such Moreover, stopping treatment leads to the out doubt. Thus, some general practitioners strength of feeling? brutal exacerbation of symptoms. (GPs) consider memory loss as more or less normal in later life. They do not see a reason The Ministry of Health, following the recom- Pharmacovigilance has not shown any seri- for medicalising a condition they consider mendations of the Haute Autorité de Santé ous adverse effects since these drugs were as an inevitable and more or less natural (HAS), made the decision to stop the reim- put on the market, 20 years ago. All you have consequence of older age. One recent book, bursement of anti-Alzheimer drugs, despite to do is respect the doses and contraindi- published in France, aims solely to regurgitate evidence of their modest but irrefutable cations, as for any medication. Overall, the old arguments, declaring that AD is nothing efficacy, proven in double-blind studies. It benefit / risk ratio remains favourable. This more than a social construct. is interesting to see that the French popula- is also the finding of the National Institute tion, again in its very large majority, disagrees for Health and Care Excellence (NICE) in the This negationist mindset leads to the risk with the decision. This does not surprise me, United Kingdom, where there is little incli- that older people who are ill, some of a very because it is consistent with what we, spe- nation to spend public money senselessly. advanced age, may be excluded from access cialised doctors, observe in our daily practice. to care and treatments. However, just as we Aside from the emotional and financial don’t question the treatment of cataracts There is a growing number of cases where impact on persons living with demen- or hip osteoarthritis regardless of the age patients notice worsening of their symptoms tia who are currently taking these drugs at which they occur, there is no reason to after they stop taking these medications. with positive results, are there any other deprive older patients of the care and treat- Others, meanwhile, have taken the decision negative consequences of stopping reim- ment available for AD. The disease is very real: to continue their course of treatment despite bursement? Will it have an impact on early the lesions are real and are now observable in having to pay out of their own pocket. This diagnosis rates, or on research, for example?

34 Dementia in Europe DEMENTIA IN SOCIETY

 

 

     

   

   

   

       

Graphic shows high percentages of French people (under and over 60) who disagree with their government’s decision to stop reimbursing anti-dementia drugs

Stopping treatment leads Does the SFN have any plans for further with the best possible support and to fur- action in this area? ther our understanding of the brain lesions, to the brutal exacerbation their causes and how to stop them. of symptoms .” At a time when some are questioning the very existence of the disease and the eff ect of anti-Alzheimer drugs, the SFN, as “ a scholarly society, conducted this survey It cannot be ruled out that this decision because it deemed it important to high- may, unfortunately, have an impact on early light its concerns and remind people that Profi le diagnosis and research. On that subject, I AD is indeed a disease of the nervous sys- Prof. Bruno Dubois is a professor of would look to the thesis of JF Ballenger, a tem. It corresponds to a specifi c and now Neurology at Sorbonne Université and historian of science. In his article “Progress well-established pathology; it results from President of the Société Française de Neurologie (SFN). in the history of Alzheimer’s disease: the very real lesions, which are now observable importance of context”, he points out that during patients’ lives; it causes well-identi- www.sf-neuro.org putting dementia and senility in the same fi ed symptoms. box would have resulted in abandoning all research into the disease for half a century, Finally, SFN felt that in the current context, it between the 1920s and 1970s. We can only ought to reiterate that the only constructive hope that this new resurgence of obscuran- response to this public health issue, going tist theories will not have that eff ect… forward, is to provide people with dementia

Dementia in Europe 35 DEMENTIA IN SOCIETY

A look behind the headlines: There are numerous benefits of employing AI The promise and reality technology in dementia research. of AI predicting AD This includes early detection of “brain disease that may later lead Alzheimer Europe interviewed Prof. Craig to dementia.” Ritchie and Dr Samuel Danso, from the Centre for Dementia Prevention (Edinburgh, Early detection of brain disease leading to Scotland), about recent headlines suggesting Artificial interventions such as lifestyle modification or drug treatment could further delay the pro- Intelligence (AI) could be used to “spot Alzheimer’s” years earlier gress of the disease, which may reduce the than current diagnosis methods allow. impact on an individual and broader society. Furthermore, there is a growing interest in the utilisation of AI technology to assist For the purposes of this article, Prof. Ritchie compared to patients predicted to be in a in the identification and then recruitment and Dr Danso specifically referred to an arti- ‘slow-decline’ category. of individuals into clinical trials in Alzheim- cle in the Telegraph newspaper, titled “Neck er’s disease to develop the very interventions scans, gene tests and AI apps: the race to Study 3 (www.joingamechanger.org) sought referred to already. ‘catch’ dementia early”, published 18 Novem- to employ AI powered technology through ber 2018. a smartphone app called Mezurio to collect The ability to predict an individual’s likeli- data from participants diverse populations hood of progression within a given timeframe Were the headlines right or were they mis- to help understand what healthy cognition provides researchers the ability to recruit par- leading in some way? is. The data collected from participants ticipants into clinical trials accurately and include activities that require them the effectively. The second study is a major con- This Telegraph article mentions three recent use of memory, thinking and learning skills tribution to the data driven approaches to studies that report the application of AI during interaction with the app. Based on this potentially effective recruitment process. technology in predicting the developments review of the above studies and other sim- of Alzheimer’s dementia by three separate ilar published initiatives that are looking at research groups. application of AI technologies within the The ability to predict an dementia domain, the headline appropri- individual’s likelihood of Study 1 looked at using advanced AI tech- ately captures and conveys an important nology called deep learning to predict and exciting series of initiatives which genu- progression within a given time- Alzheimer’s dementia based on features inely may have impact not only for research frame provides researchers the obtained from positron emission tomogra- but also clinical practice. AI correctly applied “ability to recruit participants phy (PET) scans. may one day play an important role to predict onset and progression of Alzheimer’s into clinical trials accurately and Study 2 looked at how AI technology could disease. effectively.” be used to predict clinical trajectories of Alzheimer’s dementia and in people in ear- How important is this story/study for fur- What might be the impact of this story/ lier stages of Alzheimer’s disease, who have thering dementia research? Should we be study in the scientific community? what is commonly referred to as prodromal excited? dementia. Their aim is to one day help cli- AI technology has two components: the algo- nicians make important decision on the There are numerous benefits of employing rithm and the data that serve as input. Study type and frequency of assessment, based AI technology in dementia research. This 1 and 2 propose novel algorithm frameworks on features obtained from both clinical data includes early detection of brain disease that can be further developed and refined. and computerised tomography (CT) scans that may later lead to dementia for interven- It was interesting to see how the proposed of the brain. For example, patients that are tions due to the computational efficiencies algorithms performed against the already predicted to be in a ‘fast-decline’ category – which may lead to reduction in cost; con- known algorithms such as Support Vector may be recommended for close monitoring sistency in diagnosis and prediction – this Machine and Random Forest when applied through frequent assessment and imple- may then result in less ‘human errors’ in to the tasks described in particular and the mentation of preventive interventions decision-making. dementia domain in general.

36 Dementia in Europe DEMENTIA IN SOCIETY

Study 3 also introduced a novel data acqui- algorithms are inadequate (they may be diseases that lead ultimately to dementia sition approach, which is also a major small or not have the ‘right’ data variables start much earlier in life, it is important to contribution to the scientifi c community. measured accurately). For instance the stud- validate these algorithms in much younger This approach introduces robust and objec- ies reported in the newspaper article have populations. tive assessment of participants, which can relatively small sample sizes. feed into AI algorithms in real time at large In the listed studies, older populations (aver- scale to be deployed for identifi cation in the Study 1 used only 48 samples of PET scans to age ages >70 years) were used in developing community through screening with this tech- develop the deep learning algorithm and Study the algorithms. Planned analysis in fantastic nology for people at risk of dementia and 2 used only 69 samples of CT and clinical data databases/studies where research partici- monitoring progression of brain disease. to develop the trajectory prediction model. pants are really well-characterised could be One day we will need datasets of several thou- used to validate and improve upon these What are the next steps? sands to develop really accurate models. The algorithms through their development in more individuals participate in a project of substantially larger numbers of people at a Even though the studies described in the arti- this nature, the more likely the results will be much earlier stage of brain disease. Some cle have the potential to be employed within applicable to a broad range of individuals. In examples of such databases/studies would the dementia research community, more work a small sample the results may not be robust be the PREVENT Dementia (www.preventde- needs to be done before they are ready for enough to produce similar performance on mentia.co.uk) and ALFA Project as well as the prime time in the clinic or on your smartphone. another dataset. Another reason for the need European Prevention of Alzheimer’s Demen- It is a well-known issue that AI algorithms tend to have further validation of these studies is tia (EPAD) (www.ep-ad.org) programme. to suff er from generalisation problems. the variable nature of how we defi ne dementia as well as the diff erent types of brain disease AI will yield amazing results and the head- that lead to a range of diff erent ‘dementias’. line does herald the coming together of a Even though the stud- computational approach and better and ies described in the This introduces another level of complexity larger datasets giving the individual and article have the potential to be from a computational modelling perspective the clinician the most important factor in and makes results less easily implemented making the right decision for themselves employed within the dementia into the clinical practice. For example, there is and for their patients: knowledge. “research community, more work currently overreliance on cognitive decline as needs to be done before they are the outcome of interest on dementia, but this could also be due to depression and is also AI will yield amazing ready .” only one way to measure the consequences of brain disease. Would the models that predict results and the headline Prediction accuracy of the algorithms does decline in memory also predict advancement does herald the coming together not perform as reported when applied to of brain disease and which is more relevant of a computational approach a different dataset. This is particularly and at which stage of the illness? Further- true when the data used to develop the more, as it has been established that brain “and better and larger datasets.”

Profi le Profi le Prof. Craig Ritchie is a Professor of the Dr Samuel Danso is a Researcher & Psychiatry of Ageing, and director at Data Scientist at Edinburgh Dementia Edinburgh Dementia Prevention, the Prevention, the University of Edinburgh, University of Edinburgh. He is also a and a Fellow at EPAD Academy. He holds a visiting Professor at Imperial College, PhD in Artifi cial Intelligence with special London. Prof Ritchie leads and the Chief research interest in application of AI Investigator of numerous dementia approaches and technologies to dementia research projects and these include the research. Dr Danso plays a key role in EPAD, PREVENT Dementia Programme, several dementia research projects – EPAD, The University of Edinburgh’s Centre for and the Scottish Dementia Informatics PREVENT Dementia Programme, and the Dementia Prevention combines research Partnership. He has authored several Scottish Dementia Informatics Partnership. in science, medicine and social sciences to publications in the area of dementia lead global eff orts in preventing dementia. research and currently chairs the Board of the United Kingdom Dementia Platform www.centrefordementiaprevention. Programme. com

Dementia in Europe 37 SPOTLIGHT ON 28AEC

España (FAE), Santiago Marimón Suñol, who Alzheimer Europe Conference is living with dementia, and Gemma Tarafa, Commissioner for Health and Functional Diversity for the City of Barcelona, also held in Barcelona under the addressed the delegates.

banner “Making dementia Putting dementia in the spotlight in Spain

a European priority” Ms Cantabrana (CEAFA) thanked Alzheimer Europe for helping to put dementia in the The 28th Alzheimer Europe Conference “Making dementia a spotlight in Spain by holding its conference European priority” was held under the Honorary Patronage of in Barcelona. She emphasised the importance of Spain taking the final step to approve its Her Majesty Queen Sofía of Spain. More than 800 participants national dementia strategy, the creation of from 46 countries participated. which has been one of the focal points for her organisation in recent years. She implored representatives of the Spanish authorities in The 28th Alzheimer Europe Conference and her mother’s partner having the con- attendance to use the experiences of other (#28AEC) was formally opened on the dition. She said she now believed that we countries present to help them move forward. evening of 29 October 2018 by Iva Holmer- should broaden our focus, which has been ová, Chairperson of Alzheimer Europe (AE). Ms mainly on diagnosis, pharmacotherapy, inter- Focusing on early diagnosis rates Holmerová thanked HRH Queen Sofia for her ventions and management. The individual Patronage and extended a special welcome needs and preferences of people with demen- Ms Martínez (FAE) highlighted some pos- to the 35 people with dementia attending tia and their families should be considered itive changes in recent years, for people the conference, as well as their support- and respected, she emphasised, and these with dementia and their carers, with a huge ers. Ms Holmerová has been involved in the needs and preferences must translate into increase in the information, training and dementia movement for many years, during clinical and practical thinking and acting. scientific knowledge available to them. She which, she shared that her “purely” profes- highlighted that there is more participa- sional view on dementia had changed due Following Ms Holmerová, Cheles Cantabrana, tion from everyone concerned (institutions, to meetings with people with dementia and Chairperson of the Confederación Española self-help movements, and pharma and tech caregivers, as well as through her close per- de Alzheimer (CEAFA), Noemí Martínez, companies, among others), whilst also not- sonal insight into dementia, with her mother Vice-Chairperson of Fundación Alzheimer ing that there are too many differences across

Alzheimer Europe Chairperson Iva Holmerová welcomes delegates to the conference

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Europe with regards the length of time from art installation to create a dialogue around diagnosis to end-of-life. In the immediate dementia – timed to coincide with the future, FAE will be focusing on improving Alzheimer Europe Conference. early diagnosis rates, as well as helping patients and carers access new technolo- Collaborating to overcome the challenges gies and training, helping forge better links presented by dementia prevention between professionals and families and putting more pressure on the relevant authorities In his keynote presentation “Will we be able to help implement everyday solutions. to prevent Alzheimer’s disease?” Dr José Luis Molinuevo from BarcelonaBeta Brain Research Living with dementia in Spain Center gave an overview of the challenges and opportunities regarding the prevention Mr Marimón Suñol, representing the Span- of Alzheimer’s disease (AD). He expressed the ish Working group of people with dementia rationale behind preventing AD and the rea- (AFAD), opened his speech by saying how son why prevention may be key to tackling it. truly honoured he was to speak on behalf of However, he stressed that this is far from easy people living with dementia. He informed del- and there are many challenges along the way. José Luis Molinuevo delivers the keynote lecture egates about two initiatives he and his fellow AFAD members are currently involved in: The Dr Molinuevo commented: “Although the While the advent of bio- first involves giving input on and support- advent of biomarkers does allow us to iden- ing the upcoming national dementia plan for tify AD in vivo through biomarkers that are markers allows us to Spain, and the second is a project trying to proxies of pathology, and improved trials identify AD in vivo and improve- establish a network of cognitive stimulation design is allowing us to test new pathways ments in trial designs mean we activities. He also paid homage to Pasqual in a more efficient way, defeating AD is still Maragall, former Mayor of Barcelona and a challenge that will require all of us working “can test new pathways more effi- President of the Generalitat de Catalunya, together to find a solution”. ciently, defeating AD remains a who is himself living with dementia. The challenge that requires a huge Pasqual Maragall Foundation in Barcelona Following Dr Molinuevo’s lecture, dele- funds research on Alzheimer’s disease and gates enjoyed a lively welcome reception in collaborative effort.” dementia. Mr Marimón Suñol ended with a the foyer of the Barceló Sants Hotel, where heartfelt thank you to everyone at the confer- they were treated to a fusion of Flamenco José Luis Molinuevo ence for the work they do to advance research and Afro-Cuban music played by the group and care in the dementia field. “Sabor de Gracia”.

Tackling the challenge of an ageing population Opening Ceremony speaker panel (left to right) Gemma Tarafa, Santiago Marimón Suñol, Iva Holmerová, Noemí Martínez,Cheles Cantabrana Commissioner Tarafa invited delegates not only to enjoy the conference, but also to explore the lively city of Barcelona. She shared conclusions from a recent meeting of stakeholders, which found that the ageing of the population is one of the two main challenges facing the City of Barcelona in the coming decades (with the other being the impact of pollution on health). An ageing population means an increasing number of people affected by dementia, she pointed out, and the City of Barcelona will take a three- pronged approach to tackling this challenge: Firstly, through awareness-raising; secondly, by supporting and furthering research into dementia prevention; and finally, ensuring that better support is available for carers. In closing, Ms Tarafa drew the audience’s attention to the “4000 bubbles” campaign – an

Dementia in Europe 39 SPOTLIGHT ON 28AEC

from 22–40. Its priorities are to facilitate Alzheimer Europe Conference professional careers in dementia by offering training and mentoring, to facilitate the uptake of new technologies to improve qual- plenaries focus on policy, ity of life of persons with dementia and their families and to increase awareness and fight human rights, care and research stigma around dementia. th The 4 plenary sessions at the 28 Alzheimer Europe Conference Carmen Orte, Director General of IMSERSO “Making dementia a European priority” took place on 30–31 (Instituto de Mayores y Servicios Sociales) presented “Dementia as a health and social October 2018 and focused on dementia as a policy priority, the priority in Spain”. Ms Orte highlighted the importance of a human rights-based approach to dementia importance of putting our focus where it is most needed, where dementia and specif- and disability, dementia as a care priority and dementia as a ically Alzheimer’s disease is concerned: on research priority. reducing its impact; on improving quality-of-life for people with dementia and their family caregivers and on ensuring they can Dementia as a policy priority University of Luxembourg, presented the fully exercise their rights; on ensuring people World Young Leaders in Dementia (WYLD) with dementia can continue to live in their The first plenary session on “Dementia as network, which brings together young pro- chosen environment for as long as possible; a policy priority” was chaired by Jesús Rod- fessionals in the field of dementia, supporting promoting maximum autonomy and partic- rigo (Spain) and opened with the first of four the work of the World Dementia Council. The ipation by means of involving wider society “Meet the researchers of tomorrow” ses- WYLD consists of over 250 members from 30 in our response to the challenge posed by sions. Anja Leist, Associate Professor at the countries around the world and ages range dementia. She also stressed the need to put a

Plenary 1 speaker panel (left to right) Geoff Huggins, John Gallacher, Carmen Orte, Anja Leist, Dan Chisholm, Jesús Rodrigo

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stop to exclusion and stigmatising behaviour 2017–2025, adopted by 194 Member States disease progression modelling and detailed towards people with dementia. Awareness in 2017 at the World Health Assembly. “The health economic evaluation; and has made and consciousness-raising, integrated soci- Global Action Plan represents a truly global a strong case for the collection of new data osanitary attention, valuing caregivers more commitment to improve the lives of people that is intentionally designed to enable early highly and more research, innovation and with dementia, their carers and families”, Mr detection and disease progression modelling. knowledge-sharing will help achieve these Chisholm affirmed. It covers 7 action areas, goals. each with identified targets and activities for Dementia as a human rights priority Member States, Partners and the WHO Secre- Geoff Huggins, Director of Health and Social tariat. For each of the action areas, the WHO The second plenary session focused on Care Integration at the Scottish Government has developed specific tools and guidance “Dementia as a human rights priority” and took the floor next, delivering a presentation materials to enable countries to convert this was chaired by Charles Scerri (Malta). The on the EU Joint Action (JA) ‘Act on Dementia’, commitment into action, including a policy session opened with the second “Meet the which began in March 2016. It aims to pro- guidance manual, a dementia-friendly toolkit, researchers of tomorrow” session, delivered mote collaborative actions among Member iSupport (an e-health solution for caregiv- by Stina Saunders, a fellow at the IMI EPAD States to improve the lives of people with ers of people with dementia), and the Global project (European Prevention of Alzheimer’s dementia and their carers. The first phase Dementia Observatory. Dementia risk-reduc- Dementia) and a doctoral candidate at the of work – to conduct evidence reviews and tion guidelines are also now being elaborated. University of Edinburgh. Her talk focused on reports on diagnosis and post diagnostic Equipped with these tools, the WHO is now engaging research participants as collabora- support, crisis and care coordination, qual- working with a range of national and inter- tors working towards a common goal with ity of residential care, and dementia friendly national partners to simultaneously address the study team. The EPAD study has set up communities – is completed and practical several key dimensions of the public health the EPAD Participant Panel in order to learn testing is now taking place with frontline challenge of dementia in Europe and beyond. from the experience of research participants, services, to gather evidence in order to learn provide participants an on-going active voice about the implementation challenges in pilot in the project and incorporate participants’ sites across Europe, including Bulgaria, France, We need to put a stop input. Greece, Italy, the Netherlands, Norway, Poland, to stigmatising behav- Romania and the United Kingdom. iour towards people with Helen Rochford-Brennan, Chairperson of the European Working Group of People with Examples of testing include tackling stigma dementia. Awareness and con- Dementia (EWGPWD), took the floor next, to around dementia diagnosis by bridging the “sciousness-raising, valuing talk about promoting a human rights-based gap between primary care practitioners and caregivers more highly, and approach to dementia through the active hospital specialists; testing a case manage- involvement of people with dementia. This ment approach to post-diagnostic support more research, innovation and is a cause very close to her heart, as a person in primary care innovation sites; testing the knowledge-sharing will help living with dementia who advocates for the implementation of training programmes to achieve this.” rights of people with dementia, and having support staff in identifying and managing the been a Rights and Social Justice Campaigner symptoms of stress and distress; trialling an Carmen Orte all her life. “Many people living with demen- e-learning programme in dementia palliative tia are denied their human rights from the care for healthcare staff working in nurs- time of diagnosis. As they live with the dis- ing homes in Norway and testing different Prof. John Gallacher, Project Co-ordinator ease they navigate systems and structures approaches to building ‘dementia-friendly’ of the IMI ROADMAP project (Real world which are not person centred and rights communities. The JA plans to hold its final Outcomes across the Alzheimer’s Disease based. As a result, either deliberately or by conference in The Hague in October 2019, spectrum for better care: Multi-modal data omission their human rights are denied”, said coinciding with next year’s Alzheimer Europe Access Platform), closed this engaging first Ms Rochford-Brennan. Human rights viola- (AE) conference, where it plans to share the plenary session. He shared the work done tions include the lack of statutory rights to learning about challenges and opportunities by the project so far: The ROADMAP project homecare the inappropriate prescribing of in implementing best practices throughout has demonstrated the ability of academic, Psychotropic medicines and the inability of Europe. industry, patients and regulatory partners persons living with dementia to be active par- to work together on a highly complex, widely ticipants in their community. People living Dr Dan Chisholm, Programme Manager for distributed, and tightly time-constrained pro- with dementia must be actively involved in Mental Health at the World Health Organ- ject; established a broad-based and evidence all aspects of the disease. isation (WHO) Regional Office for Europe based consensus on the priority outcomes for (Copenhagen, Denmark) spoke next, about dementia treatment pathways; developed a From research to healthcare, legislation to prioritising dementia internationally and comprehensive database of available Euro- awareness, the lived experience must be val- specifically about the WHO’s Global Action pean real world data; demonstrated that ued and have the power to influence. Good Plan on the public response to dementia the current evidence base is inadequate for practice for involving people with dementia

Dementia in Europe 41 SPOTLIGHT ON 28AEC

includes appropriate supports, a non tokenis- whether the existence of specific legal instru- and disability. In 2017, Alzheimer Europe set tic approach and a value placed on experts ments on the rights of older persons and their up a working group of experts on dementia, by experience. The members of the EWG- protection is necessary. Reasons for not hav- disability, ethics, mental health legislation, PWD, are strong advocates of PPI (patient ing such instruments include the fact that anthropology, policy and psychology, which and public involvement) and believe co-cre- people have rights because they are human worked closely with members of the EWG- ation and robust collaboration are the only beings regardless of age, gender, language, PWD. Together, they explored possible way to ensure that the human rights of per- sexual orientation, capacity, abilities, etc. and implications for ethics, policy and prac- sons living with dementia are a research instruments and specific norms for the pro- tice of recognising dementia as a disability. priority. “Human rights can be a theoretical, tection of the older people already exist (e.g. Thinking about how people with dementia abstract concept that for some people living International Human Rights Conventions of might experience and feel about disability, with dementia seems far removed from their the UN, Charter of Fundamental Rights of the it is important to emphasise that disability, daily reality. Quality engagement with just EU of 2010, Constitution of 1978, Civil Code, like dementia, is not a person’s sole identity. such people will lead to the human rights Penal Code). Nevertheless, the existence of People have multiple, intersecting and over- of many more people living with dementia sectoral legal norms at international, national lapping identities. Dianne stated that whilst being met”, she concluded. and regional level (in the case of Spain) aimed overall, there may be ethical, practice and at the protection of groups that are particu- policy benefits of viewing dementia as a disa- Dr Fernando Vicente, advisor to the General larly vulnerable, is a reality of the political bility, none of these potential benefits should Directorate of the Institute of Older People action that is appropriate to the challenges require a particular person with dementia to and Social Services (IMSERSO) of the Ministry posed by the ageing of the population. This identify with disability against his/her wishes, of Health, Social Services and Equality, was up constitutes a great challenge of governance and emphasised the need to recognise and next. Addressing the room in Spanish (simul- in Spain and hinders the adoption of meas- respect difference and individual choice. taneously translated into English), Dr Vicente ures to mobilise action, he concluded. spoke about Human Rights in Spanish health Dr Karen Watchman, Senior Lecturer in the and social legislation: In the discussion about Dr Dianne Gove, Director for Projects at Faculty of Health Sciences and Sport at the ageing, there has been a heated debate at Alzheimer Europe, gave delegates an over- University of Stirling, closed the second ple- national and international level about view of the organisation’s work on dementia nary session with her talk on dementia and

Plenary 2 speaker panel (left to right) Karen Watchman, Stina Saunders, Dianne Gove, Charles Scerri, Helen Rochford-Brennan, Fernando Vicente

42 Dementia in Europe SPOTLIGHT ON 28AEC

intellectual disability. Dr Watchman told del- with intellectual disabilities. “By valuing the We need to address tradi- egates that, whilst countries across Europe perspectives of people with an intellectual are at different stages in their support of peo- disability and dementia, we reinforce the tional forms of outcome ple with an intellectual disability, longer life importance of ensuring that best-practice for assessment, which are often expectancy of people with Down syndrome people with dementia also applies to people based in a deficit model rather means a rise in the incidence of early onset with an intellectual disability. This includes than one which promotes liv- dementia, with at least 1 in 3 people with Down a timely diagnosis which is shared appropri- “ syndrome being diagnosed in their 50s or 60s. ately, individualised post-diagnostic support, ing well with dementia, i.e. what Older families are facing the multiple jeopardy and the need to meaningfully include the per- can no longer be achieved rather of caring for their relative with an intellectual spective of persons with intellectual disability disability who is ageing, and has a diagnosis in decisions that affect them”, Dr Watchman than what can.” of dementia. This is often at a time when they concluded are facing their own ill health, she pointed out. Gail Mountain Increased knowledge and awareness among Dementia as a care priority parts of the ageing population, around think- support staff in health and social care sec- ing about decline and dementia. This cultural tors/NGOs can lead to greater understanding The third plenary session “Dementia as a care anxiety also influences the development of of the impact of individualised non-drug priority” was chaired by Myrra Vernooij-Das- assistive technologies promoting self-manage- supports for people with an intellectual dis- sen (Netherlands) and opened with the third ment and activity in dementia, which results ability and dementia, including the potential “Meet the researchers of tomorrow” session, in the potential cognitive decline associated for a reduction in medication. Improvement with Sébastien Libert, a PhD student based with the progression of dementia not being is also needed in the area of diagnosis and at University College London, and part of the primarily addressed in the design of many of post-diagnostic support, for residents with Interdisciplinary Network on Dementia Using these technologies. It is therefore important intellectual disability who are diagnosed with Current Technologies (INDUCT). He argued that, to consider how the progression of dementia dementia. A longer-term approach is needed with the increasing promotion of an active and affects people’s experiences with such tech- to support this ageing population, which takes productive later life in western societies, there nologies, often developed to help with early into account the perspective of the person is a growing discomfort and anxiety among to moderate dementia, he concluded.

Plenary 3 speaker panel (left to right) Manuel Martin-Carrasco, Martina Roes, Sébastien Libert, Marjolein de Vugt, Myrra Vernooij-Dassen, Gail Mountain

Dementia in Europe 43 SPOTLIGHT ON 28AEC

Gail Mountain, Professor of Applied Demen- are associated with an array of deleterious Expanding findings from other studies on tia Research and Director of the Centre for effects, including an increase in mortality. clinical utility of amyloid PET imaging (ABIDE Applied Dementia Research at the Univer- Various methods have been tried, to reduce and IDEAS), the AMYPAD Diagnostic Study is sity of Bradford used her presentation to the use of antipsychotics in nursing homes, looking to understand for whom and when urge delegates to work together to recon- the most successful of which, overall, seems this technique is valuable, and whether its sider the appropriateness of commonly-used to be the implementation of sustained train- optimal use is cost-effective in clinical routine. outcome measures in dementia practice and ing programmes, leading to a change in the In combination with EPAD, the AMYPAD Prog- research. The issues she stated as needing to culture in the facilities themselves. nostic Study is using amyloid PET imaging to be addressed are: Traditional forms of out- improve the determination of an individual’s come assessment can be based in a deficit risk of developing dementia, and will provide model rather than one which promotes liv- Maintaining relationships crucial technical insights into how current ing well with dementia – what can no longer and making connections and future secondary prevention trials can be achieved rather than what can; The con- are of paramount importance improve participant selection and measure- structs being measured can contribute ment of treatment effect using amyloid PET. towards the deficit model – what about abil- in ensuring quality-of-life for ity to self-manage and retain resilience rather “people with dementia, according Next, Maria Isabel Gonzalez Ingelmo, Man- than ADL?; The majority of traditional forms to people living with the condi- aging Director of the National Reference of assessment require recall; a challenge for Centre for Alzheimer’s and Dementia Care those with cognitive deficit. Prof. Mountain tion. This is why relationships of the Institute for Older Persons and Social suggested a radical rethink regarding what are such a fundamental com- Services (IMSERSO), under the auspices of should be asked and how, including the role ponent in person-centred care.” the Spanish Government, informed dele- of new technology in creating solutions to gates that her organisation is committed this problem. Martina Roes to promoting research into non-pharmacological therapies, through networking and Marjolein de Vugt, professor of psychoso- transferring knowledge. She spoke about the cial innovations in dementia at the Mental Martina Roes, Chair of Nursing Science and importance of social and health care research Health and Neurosciences research school, Health Care Research at the Department for in the field of Alzheimer’s disease (AD) and Maastricht University presented the ‘Part- Nursing Science / Faculty for Health, Univer- other dementias. This area of research pur- ner in Balance’ programme. She noted that sity of Witten/Herdecke closed this plenary sues the development of evidence-based existing e-health interventions for caregivers session with a presentation on “fostering and interventions that are able to improve the of people with dementia are mainly aimed at sustaining relationships with people with quality-of-life of people with dementia and dealing with dementia-related problems, but dementia”. She emphasised that maintaining their families. Ms Gonzalez Ingelmo empha- may not fit the needs of informal caregivers of existing relationships and making and sus- sised that clinical research and social and persons at an early stage of the disease pro- taining new connections are of paramount health care research are equally important cess. The programme she presented aims to importance in ensuring quality-of-life for and must work hand in hand, to achieve the respond to this unmet need. It is a blended people with dementia, and this, according to best results for everyone concerned. care intervention, developed specifically with people living with the condition themselves. and for informal caregivers of people with This is why relationships are such a funda- Mercè Boada, Founder and medical director dementia in the early stages and she was mental component in person-centred care of Fundació ACE, used her session to stress pleased to announce that a randomised, con- and why person-centredness is so important. the important role EU research collaborations trolled trial has already had positive results in can play in helping to improve the diagno- the areas of self-efficacy, experienced control Dementia as a research priority sis of AD. Identifying ways to improve early and quality-of-life. diagnosis of AD and changing the current per- The last plenary session focused on “Demen- ception that dementia is part of the normal Manuel Martín-Carrasco, Medical Director tia as a research priority” and was chaired ageing process are on the global agenda. Euro- of the Father Menni Psychiatric Clinic of by José Manuel Ribera Casado (Spain). It pean cooperation in projects like MOPEAD or Pamplona, spoke to delegates about reduc- began with the fourth and final “Meet the ADAPTED are a great opportunity to establish ing the use of antipsychotics in residential researchers of tomorrow” session, presented strategies focused on increasing knowledge and nursing homes. The fact that many by Isadora Lopes Alves, who is currently doing and awareness. “Health policymakers, stake- people with dementia are living in long- her postdoctoral research for the IMI AMYPAD holders, national Alzheimer associations and term care facilities, leads to a high rate of project (Amyloid Imaging to Prevent Alzheim- academic institutions should collaborate to psychiatric symptoms and behavioural prob- er’s Disease) at the VUmc, Amsterdam. The improve our healthcare systems, by training lems, said Dr Martín-Carrasco. A high rate AMYPAD Consortium involves 9 centres primary care practitioners and other health- of psychopharmacological treatments, in across Europe and aims to examine the value care professionals cross Europe working in the particular antipsychotics and benzodiaze- of amyloid PET imaging in two clinical studies field of neurodegenerative diseases. It is crucial pines are used, as a result and these drugs recruiting up to 2,900 individuals. to find biomarkers that are assumable for our

44 Dementia in Europe SPOTLIGHT ON 28AEC

Plenary 4 speaker panel (left to right) José Manuel Ribera Casado, Clive Ballard, Isadora Lopes Alves, Mercè Boada, Maria Isabel Gonzalez Ingelmo, Philippe Amouyel healthcare systems as well as less invasive for Prof. Amouyel pointed out that almost half include identifying underlying causes, people affected”, concluded Dr Boada. of the heritability of AD remains to be iden- training caregivers, making environmental tified. Genetics, he concluded, will play a adaptations, implementing person-centred Next up to the podium was Philippe Amouyel, pivotal role in general prevention, identi- care, and devising a programme of tailored Professor of Epidemiology and Public Health fication of disruptive treatments and care. activities. at the University Hospital of Lille, with a Due to its predictive role, genetics has a presentation on the genetics of Alzheimer’s major influence on prevention, pre-symp- There is an emergence of promising research, disease (AD): AD occurrence, as with many tomatic and early diagnoses of dementia. focusing on new pharmacological treat- chronic diseases, results from the interac- This deserves careful discussion, particularly ments, including analgesics, citalopram, tion between environmental factors and an linked to ethical considerations. pimavanserin and dextromethorphan; and individual susceptibility. In less than 1% of we are likely to see a significant advance in AD cases, mostly early onset forms, genom- The final speaker at plenary 4 was Professor the treatment of Behavioural and Psycho- ics has been able to identify several causing Clive Ballard, who is part of a growing team of logical Symptoms in people with Dementia genes, and set the basis of the amyloid cas- dementia researchers at the University of Exe- over the next 5 years. Prof. Ballard summa- cade model. In the sporadic forms of AD, the ter Medical School. His presentation looked rised the study’s results, saying: “We know most common, genomics research, based on at pharmacological options for the treatment that antipsychotics and sleeping tablets an agnostic screening of the genome, has of behavioural symptoms of dementia and can all be highly damaging to people with allowed scientists to identify new pathophys- specifically at the recent international Delphi dementia. The headline here is that sedating iological pathways, improving understanding consensus paper. The paper brings together elderly, frail people with dementia is likely of the molecular processes involved in AD. leaders in the field to update guidance based to cause them harm and should be avoided on latest evidence. It advises that drug treat- if at all possible. Our paper brings together Over the past 10 years, the exponential ments should only be used as a last resort for the latest evidence in this field and advises progress made in the deciphering of the the treatment of agitation, and highlights professionals to try non-drug approaches genome have meant that more than 30 the need for more work focusing on spe- where possible and highlights emerging regions of the genome, associated with an cific non-pharmacological interventions for pharmacological therapies which may pro- increased or decreased risk of AD in these psychosis most universally experienced by vide safer and more effective approaches to late-onset forms, have been identified. Still, people with dementia. Non-drug approaches treatment in the future.”

Dementia in Europe 45 SPOTLIGHT ON 28AEC

Snapshots of #28AEC

Cheles Cantabrana, CEAFA, addresses dele- A sunny backdrop to another exciting and packed conference Noemí Martínez speaks on behlaf of Fundación Alzheimer España, gates during the Opening Ceremony at the Opening Ceremony

Helen Rochford-Brennan stresses the Sébastien Libert presents one of the meet the researchers of tomor- José Luis Molinuevo delivers the keynote lecture importance of a rights-based approach row sessions to dementia

Chris Roberts shares his lived experience Spanish sessions were simultaneously translated to English and Networking between sessions helps forge and reinforce vital inter- of dementia during the EWGPWD Special vice-versa national collaboration Symposium

EWGPWD member Idalina Aguiar (left) with John Gallacher shares the success of the ROADMAP project dur- Some of the 175 posters presented at 28AEC her daughter and carer, Nélida (right) ing its two years

46 Dementia in Europe SPOTLIGHT ON 28AEC

Carers and supporters of the group’s mem- European Working Group of bers joined them on the stage and at the end of the symposium, they made the statement: People with Dementia begins “Many voices together make our voice stronger”. fourth term of offi ce Departing members Former EWGPWD members Nina Baláčková The working group began its fourth two-year term of offi ce at (Czech Republic) and Helga Rohra (Germany) a meeting held on 28 October 2018 in Barcelona, prior to the also attended the pre-conference meeting th and participated in the symposium but have 28 Alzheimer Europe Conference. now left the group. Both were founding members of the EWGPWD, having joined in October 2012. Ms Baláčková was also Vice-Chairperson Prior to the conference, members of the y Petri Lampinen, Finland in 2013–2014 and Ms Rohra was the group’s European Working Group of People with y Thomas Maurer, Switzerland fi rst Chairperson (2012–2014, 2014–2016). Dementia (EWGPWD) met to prepare for their y Angela Pototschnigg, Austria (new) involvement in the programme, including y Geert Van Laer, Belgiu m. Alzheimer Europe and the EWGPWD wish to the Special Symposium “I have dementia thank both of them for their important and and life goes on”, which took place on 30 Symposium “I have dementia and life goes on” positive contributions, as well as thanking October 2018. their friends and family members, for their One of the highlights of the conference was support. The members a symposium organised by the group and , chaired by Helen Rochford-Brennan and mod- The EWGPWD for 2018–2020 is composed of erated by Chris Roberts. the following 13 members, including four new members, welcomed by the group at The entire group participated and each mem- this pre-conference meeting: ber shared a few words about themselves and their lived experience. Finnish member y Helen Rochford-Brennan, Ireland Petri Lampinen then gave a speech about his (Chairperson) experience of receiving a diagnosis of fron- y Chris Roberts, UK – England; NI and Wales totemporal dementia, the impact it had on (Vice-Chairperson) him and his family and his approach to living The European Working Group of People y Idalina Aguiar, Portugal life to the fullest. Chris Roberts translated his with Dementia was set up by Alzheimer y Stefan Eriksson, Sweden (new) words to English, for the audience. Europe in 2012. It is composed entirely of y Tomaž Grižnič, Slovenia people with dementia, nominated by their national Alzheimer associations. They work y Amela Hajrič, Bosnia & Herzegovina As every year, the EWGPWD Symposium was to ensure that the activities of Alzheimer y Carol Hargreaves, UK – Scotland incredibly popular and there was lively audi- Europe refl ect the priorities and views of y Bernd Heise, Germany (new) ence participation, during the closing Q&A people with dementia. y Miha Kastelic, Czech Republic (new) session.

The members of the EWGPWD and their supporters during the special symposium at 28AEC

Dementia in Europe 47 SPOTLIGHT ON 28AEC

of intervention. The team responsible for Congratulations to the winners this poster argues, however, that the impact of motivational support and emotion requires more investigation in the context of the poster awards! of serious games and dementia. Their poster presents the first results of the European The Alzheimer Europe Foundation is pleased to present the project PLAYTIME and looks at future tra- winners of the poster competition, as voted by delegates at jectories in the field:

28AEC. 1. Indicators for cognitive assessment were implemented using web camera based eye tracking. The Alzheimer Europe Foundation is pleased (HoGent). It is extremely popular and is usu- 2. Capacity for physical activities and bal- to present the winners of the 28AEC poster ally fully-booked. ance were assessed with a wearable competition, as voted by delegates. The sensor-based motion test. winners were awarded EUR 750 and the run- CasAperta believes in the creative capacities 3. Psycho-social aspects were analysed from ners-up were awarded EUR 250. of people with dementia and the use of imag- a newly developed serious game compo- ination to branch out, finding new ways to do nent using decision-making in role play. WINNER: Luisa Bartorelli (Italy), “The new things, rather than holding on to activities It also presents results from the first field Alzheimer village of the Fondazione Roma: A people used to enjoy. The emphasis is on using study about the usability of these innova- positive approach for people with dementia” creativity and abilities in the here and now. tive components.

This poster introduces Villaggio Emanuele RUNNER-UP: Nélida Aguiar (Portugal), “Per- Sharing the winnings (named after its founder), a new “Alzheimer petuating memories” village” in Rome. It aims to offer residents with The winners have all made the generous deci- dementia an environment that is as close Nélida Aguiar’s mother, Idalina Aguiar has sion to donate their prize money or use it for to “normal life” as possible, whilst ensuring Alzheimer’s dementia. Her poster looks at charitable actions: their safety and wellbeing. The Village, with the importance of living well with dementia, its streets and piazzas, is a structure where which she says can be done by “maintaining yy Luisa Bartorelli has donated hers to residents can move around independently the bonds that unite us with the past, while Alzheimer Uniti Roma where it will be in “spazi di liberta”. It is open to the outside providing the best comfort in the present and used to help people with dementia and world and the poster authors emphasise the accepting the uncertainty of the future.” their families in Italy. importance of involving neighbours and the yy Bie Hinnekint will use hers to organise fur- local community, to contribute to the concept For Ms Aguiar, living well with dementia is: ther CasAperta music salons. of a dementia friendly community. integration, acceptance, adapting, reinvent- yy Lucas Paletta gave his to the Sozialverein ing the day-to-day, preserving the memory Deutschlandsberg, an organisation that WINNER: Bie Hinnekint (Belgium), “CasA- for as long as possible, working hard on works with people with dementia living perta, music and arts café by people with understanding the will of the person with at home, in remote rural areas near Graz, dementia and their carers” dementia, listening to their voice and valuing Austria. their opinion. It is of great importance to real- yy Nélida Aguiar donated hers to Garouta This poster introduces the CasAperta project in ise that a diagnosis of dementia is not only do Calhau, a day centre for persons with Ghent. CasAperta is a music and arts café and a about the impact of the disease on the per- dementia. support-group, founded in 2016. The aim is for son, but rather its impact on the whole family, people with dementia and their carers to have she says. The capacity to adapt to change is As in previous years, a free subscription for new experiences together, enjoy music and fundamental in uniting and strengthening the 2019 conference in The Hague was also arts, make friends and by participating spread family ties and it is important to live with awarded to one lucky participant, drawn at the message that “Living well with demen- love, respect for the individual and by remain- random from the submitted poster evalua- tia is possible”. Over 25 pairs from around the ing integrated in society as much as possible. tion forms. Romaine Rizzo (Malta) was the greater Ghent area are participating. winner. RUNNER-UP: Lucas Paletta (Austria), “PLAY- CasAperta Music-Salon is a new element of TIME: Motivation, emotion and assessment The Alzheimer Europe Foundation is grateful the project, developed in 2018. It takes place in serious games for dementia intervention” to all 187 conference delegates who voted and across six Sunday afternoons in the Quatre all poster presenters for their excellent con- Mains music café, where classical music is The effect of serious games for cognitive tributions at the conference. performed by two young musicians from stimulation of people with dementia has the Royal Academy of Fine Arts in Ghent been thoroughly tackled via several avenues

48 Dementia in Europe SPOTLIGHT ON 28AEC

POSTER PRESENTATION 28TH ALZHEIMER EUROPE CONFERENCE IN BARCELONA // 29-31 OCTOBER 2018 P04.16

1 1 12 VEERLE BAERT, PHD, elena de ru, MSc & bie hinnekint, msc 1 DEMENTIA FRIENDLY GHENT, OCMW GHENT, BELGIUM 2 THE COURAGE TO GROW OLD     CasAperta     music and arts cafe    by people with dementia and their carers     In CASAPERTA jeanine, participant from start The present is the place  duo’s of people to be for me and my sister  with dementia   and their carers  meet monthly  for an artistic Joy, attention,  afternoon in a community- appreciation is  what we feel  center cafe,  where other visitors are People with dementia At home, I make welcome to join are a wonderful I love to see   art with my and have a drink. audience for a musician the joy of the curlers elderly. Cosmopolitan Traditional Urban

Every time my grandchildren You never guess are very curious what granddad living well with dementia and I did at casAperta what I’m thinking

    we are one of the 25 duo’s can i come enjoying casaperta.  next time???    Thanks to enthusiastic volunteering from the  beginning, CASAPERTA  attracted many duo’s!  

Me and my wife are so My music companion I live in a new proud hosting the Music this, i will is 92 and has dementia, way with my and arts café in our never forget here he can improvise wife now. community center with his sax 

 CASAPERTA gave me  an understanding of  my granny, living in our home since she’s having dementia      As an art-student,  Our hearts felt connected by the music and made us people with dementia   la-la-la inspire me fully!  move in synchrony, it was  such a wonderful feeling again...  wOw!  This is our ‘safe-haven’ we  make new families together    I like baking cake  but i don’t like  to be in  the picture  inventing stories with my sister since Casaperta is a whole new i make art the experience at home casapertagent.blogspot.com jend 1st price Casaperta Arts in Society Award World Alzheimer’s day 2018 PRODUCTIONS Deinze/Belgium CERA-Foundation

WINNER: Luisa Bartorelli WINNER: Bie Hinnekint

Living with dementia is INTEGRATION!!!

Perpetuating Memories PLAYTIME:PLAYTIME: Motivation, Motivation, Emotion Emotion and and Assessment Assessment in AGUIAR, Nélida and AGUIAR, Idalina PLAYTIME:PLAYTIME: Motivation, Motivation, Emotion Emotion and and Assessment Assessment Alzheimer Portugal and EWGPWD in Serious Games for Dementia Intervention Retrocede Serious Games for Dementia Intervention Living with dementia and / or caring for someone with dementia inin Serious Serious Games Games for for Dementia Dementia Intervention Intervention 1 1 1 2 13 4 2 4 3 5 4, 6 7 4 8 requires an enormous capacity for adaptation, and it is fundamental Lucas Paletta , Maria FellnerLucas , Liselore Paletta Snaphaan, Maria , Inge Fellner Bongers ,, JosefLiselore Steiner Snaphaan , Mariella Panagl, Inge , Alexander Bongers Lerch, ,Josef Geert Vander Steiner Stichele Mariella , Ernst Koster Panagl , Martijn, Niessen to unite and strengthen family ties. 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MindBytes , Ghent, Belgium a Long-termanalysis• Long & control -goal:term .assessment goal: assessment of cogni - of (accelerometertemperature,rature,, gyroscope bluetoothbluetooth)., ). magnetometer , Framework of’ concepts, accurate and Eizenman et al., 2016) via anti-saccade 4 measures of McRoberts. affective attention affective • Long-termcognitive goal control: assessment & daily mental of state . balance tests (Guralnik et al., 2000). domains and calibration menu temperature,• The short bluetooth physical). performance battery (SPPB)2 MIRA: narrative forslider executive function assessmentgames slidertest, tive visual control comparison & daily task mental. state. mean SPPB (sub) scores affective attention affective • Eye tracking enables classification• Long-term goal : Thepredictive short physicaltool for dementia, performance battery 8(SPPB) subjective measures of calibration menu cognitive control & daily mental state. • The shortis aa physical group performanceof measures batterythat combines (SPPB) 0 the 7 slider games slider • Web camera eye tracking: accuracy ca. gradient of risk for mortality, nursing home Sway 1/3 Sway6 2/3 Sway 3/3meanSway SPPB (sub)McRoberts.Gait scoresChair Stand SPPB Total Ghent University Belgium • Eye trackingWebof cameraAlzheimer enables based status eye tracking classification (Crawford 2012; is a groupWearableresults of sensorof measures the for movementgait thatspeed, monitoringcombines chair standthe and8 early. 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Sway test inGait firstChair field Stand trialSPPB (AT, Total NE) • Long-term goal: assessment of temperature, bluetooth). 4 cade1,3 cm test, (vs. visual1 cm with comparison Tobii EyeX) task. Results of SPPB test in first field trial (AT, NE) The research leading to these results affective attention affective admission,a andLong-term disability. goal: predictive tool for dementia, 2 calibration menu cognitive control & daily mental state. • The short physical performance battery (SPPB) slider games slider mean SPPB0 (sub) scores has received funding from the project • Eye tracking enables classification 8 a Web camera eye tracking: accuracy is Sociala group ofgradient measures of Innovationriskthat forcombines mortality, the nursing home StrategySway 1/3 Sway 2/3 Sway 3/3 Sway Gait Chair Stand SPPB Total PLAYTIMEAcknowledgements of the AAL Programme of the of Alzheimer status (Crawford 2012; 6 We have to reinvent daily, small common acts, so that the ca. 1,3 cm (vs. 1 cm with Tobii EyeX) results of theadmission, gait speed, and chair disability. stand and Results of SPPB test in first field trial (AT, NE) European Union, by the Austrian BMVIT/ Eizenman et al., •2016User) via-centered anti-saccade design is an iterativebalance process, tests (Guralnik where etthe al .goal, 2000 is) . 4 memory is preserved as long as possible. The research leading toFFG these (No. results 857334). test, visual comparisonthe taskdevelopment. of usable• Longproducts,-term goalservices: predictive or systems, tool for dementia, 2 Social Innovation0 Strategy • Web camera eye trackingachieved: accuracy through ca involvement. of potential users of a product, has received fundingAcknowledgements from the project gradientSocial of risk for mortality, Innovation nursing home Sway 1/3 Sway 2/3 Sway 3/3StrategySway Gait Chair Stand SPPB Total PLAYTIMEAcknowledgements of the AAL Programme of 1,3 cm (vs. 1 cm withservice Tobii EyeX •or systemUser) -centered in system design designadmission, is (Karat,an iterative and1996 disability) . process, . where the goal is Results of SPPB test in first field trial (AT, NE) Important to continue to make oneself heard and perceived by • Social innovation can be defined as “innovative activities and The research leading to these results • User-centeredthe development design is an of iterativeusable process,products, where services the goalor systems,is the European Union, by the Austrian services that are motivated by the goal of meeting a social need the developmentachieved through of usable involvement products, of potentialservices usersor systems, of a Socialproduct, Innovation Strategy the will expressed by the person living with dementia, how The researchhasBMVIT/FFG received leading funding(No. to these 857334 from results ).the project and that are predominantly diffused through organizations achievedservice through or system involvement in system of design potential (Karat, users 1996 of) . a product, has receivedPLAYTIME funding of fromthe AAL the Programmeproject of whose primary purposes are social” (Mulgan et al., 2007). service• Social or system innovation in system can design be defined (Karat, 1996as “innovative). activities and important their integration and opinion should be valued. PLAYTIMEthe ofEuropean the AAL Union,Programme by the of Austrian • Mental Health Care Eindhoven & Sozialverein Deutschlandsberg. • Sociala servicesinnovationUser-centered that can are designbe motivated defined is an byas iterative the“innovative goal process, of meeting activities where a social and the needgoal is the development of usable products, services or systems, • First field trial with N=18 participantsSocial (N=9 AT, N=9 NE) . InnovationEarly Strategy the EuropeanAcknowledgements Union,BMVIT/FFG by the Austrian (No. 857334 ). servicesandachieved that that are motivatedthroughare predominantly involvement by the goal diffused ofof potentialmeeting through ausers social organizations of need a product, service or system in system design (Karat, 1996). PLAYTIME whoseversion primary tested purposes at home are ( 2social” weeks (Mulgan) and inet algroup., 2007. ). Mental Health Care Center Eindhoven: focus group meeting BMVIT/FFG (No. 857334). • Userand- centeredthat are design predominantly is an iterative diffused process, through where organizationsthe goal is Evaluationa• MentalSocialat home Healthinnovation; usability, Care canEindhoven feasibility, be defined & appropriatenessSozialverein as “innovative Deutschlandsberg and activities and. services that are motivated by the goal of meeting a social thewhose development primary purposes of usable are social”products, (Mulgan services et al. , or2007 systems,). The research leading to these results acceptability• First. Second field trialfield withtrial plannedN=18 participants for 2019 (N= (N=409). AT, N=9 NE). Early • achievedMental needHealth through and Care involvementthat Eindhoven are predominantly of& potentialSozialverein diffused users Deutschlandsberg of througha product, organizations . whose primary purposes are social” (Mulgan et al., 2007). has received funding from the project PLAYTIME version tested at home (2 weeks) and in group. Mental Health Care Center Eindhoven: focus group meeting We specially thanks, to all the team of “Garouta do Calhau” Center • serviceFirst field or system trial with in system N=18 design participants (Karat, 1996(N=9 ).AT, N=9 NE). Early PLAYTIME of the AAL Programme of a EvaluationMental Health at home Care; Eindhovenusability, feasibility, & Sozialverein appropriateness Deutschlandsberg. and Mental Health Care Center Eindhoven: focus group meeting Social innovation strategy implemented by Mental Sozialverein Deutschlandsberg: • SocialPLAYTIME innovation version can tested be defined at home as “innovative(2 weeks) activitiesand in groupand . acceptability. Second field trial planned for 2019 (N=40). the European Union, by the Austrian Health Care Center Eindhoven and Tilburg University Alzheimer trainer session servicesEvaluation that atare home motivated; usability, by the feasibility, goal of meeting appropriateness a social need and ESQUERDA, Bloco de. Criação do estatuto do Cuidadore Informail e reforça asmedidas de apoio a pessoa dependente: documento a First field trial with N=18 participants (N=9 AT, N=9 NE). Early PLAYTIME version tested at home (2 weeks) and in group. BMVIT/FFG (No. 857334). (Bongers, Snaphaan et al., 2018). andacceptability that are. Secondpredominantly field trial planneddiffused forthrough 2019 (N=organizations40). enquadrador. Pr0jecto de lei nº 801/XIII/3ª. Lisboa. Março 2018 Evaluation at home; usability, feasibility, appropriateness and acceptability. Second field trial planned for 2019 (N=40). whose primary purposes are social” (Mulgan et al., 2007). FORBES Blake. Exercise programs for people with dementia: The Cochrane database of systematic reviews. Abril 2015 • Mental Health Care Eindhoven & Sozialverein Deutschlandsberg. LOPES, Manuel. Medidas de Intervenção Junto dos Cuidadores Informais: documento enquadrador. Prespectiva nacional e internacional. THE INNOVATION COMPANY • First field trial with N=18 participants (N=9 AT, N=9 NE). Early prm pos 18 235 Lisboa. Setembro 2017 THE INNOVATION COMPANY Social innovation strategy implemented by Mental Health Care Center PLAYTIMEUser version-centered tested design andat systemhome development (2 weeks. ) and in group. SozialvereinMental Health Deutschlandsberg: Care Center Eindhoven: Alzheimer focustrainer group session meeting SATOW, Roberta. Doing the Right Thibg.New York. Junho 2007 Eindhoven and Tilburg University (Bongers, Snaphaan et al., 2018). Evaluation at home; usability, feasibility, appropriateness and acceptability. Second field trial planned for 2019 (N=40).

THE INNOVATION COMPANY Social innovation strategy implemented by Mental Health Care Center User-centered design and system development. Sozialverein Deutschlandsberg: Alzheimer trainer session Eindhoven and Tilburg University (Bongers, Snaphaan et al., 2018). Social innovation strategy implemented by Mental Health Care Center THE INNOVATION COMPANY User-centered design and system development. Sozialverein Deutschlandsberg: Alzheimer trainer session Eindhoven and Tilburg University (Bongers, Snaphaan et al., 2018).

RUNNER-UP: Nélida Aguiar RUNNER-UP:THE INNOVATION COMPANY LucasSocial innovation strategy implemented Paletta by Mental Health Care Center User-centered design and system development. Sozialverein Deutschlandsberg: Alzheimer trainer session Eindhoven and Tilburg University (Bongers, Snaphaan et al., 2018).

Dementia in Europe 49 SPOTLIGHT ON 28AEC

Facts and figures • 96% of delegates would recommend future Alzheimer Europe Conferences to their colleagues. • 87% of delegates rated the opening ceremony, keynote lecture, plenaries and closing ceremony of the conference to be good/very good.

Country Attendees Country Attendees Country Attendees Spain 149 Austria 16 Croatia 2 United Kingdom 143 Greece 11 Hong Kong 2 Netherlands 64 Portugal 10 Korea 2 Italy 40 Czech Republic 10 Romania 1 Germany 35 USA 7 Brazil 1 Iceland 34 Australia 6 Singapore 1 Denmark 32 Hungary 6 Mexico 1 Switzerland 31 Israel 5 Taiwan 1 Ireland 29 Canada 5 Albania 1 Norway 26 Estonia 5 Argentina 1 Finland 22 Cyprus 4 Chile 1 France 22 Malta 3 Ghana 1 Belgium 19 Jersey 3 Montenegro 1 Sweden 18 Poland 2 Thailand 1 Luxembourg 18 Japan 2 TOTAL 814 Slovenia 18 Bosnia and Herzegovina 2

Academics/Researchers 227 Alzheimer association staff and volunteers 209 Health or social care professionals 194 Students 47 Industry representatives 35 People with dementia 34 Carers 31 Civil servants 22 Policy makers 15 Total: 814

50 Dementia in Europe Our members are helping peopleOur members with dementia are helping and their peoplecarers in with 32 countries dementia and their carers in 32 countries

Alzheimer Europe Members Our members are helping Alzheimer Europe Members peopleOur members with dementia are helping and their AUSTRIA – VIENNA ICELAND - REYKJAVIK ROMANIA – BUCHAREST peopleAlzheimer Austria with dementia andThe Alzheimer’s their Association of Iceland Societatea Alzheimer carersAUSTRIA – VIENNA in 32 countries ICELAND - REYKJAVIK ROMANIA – BUCHAREST carersAlzheimer Austria in 32 countries The Alzheimer’s Association of Iceland Societatea Alzheimer BELGIUM – BRUSSELS IRELAND – DUBLIN SLOVAKIA – BRATISLAVA Ligue Nationale Alzheimer Liga The Alzheimer Society of Ireland Slovak Alzheimer’s Society BELGIUM – BRUSSELS IRELAND – DUBLIN SLOVAKIA – BRATISLAVA Ligue Nationale Alzheimer Liga The Alzheimer Society of Ireland Slovak Alzheimer’s Society BOSNIA & HERZEGOVINA - SARAJEVO ISRAEL – RAMAT GAN SLOVENIA – LJUBLJANA Udruženje AiR EMDA Alzheimer– The Alzheimer’s Europe Association Members of Association “Forget-me-not” BOSNIA & HERZEGOVINA - SARAJEVO IsraelISRAELAlzheimer – RAMAT GAN Europe Members SLOVENIA – LJUBLJANA Udruženje AiR EMDA – The Alzheimer’s Association of Association “Forget-me-not” BULGARIA – SOFIA Israel SPAIN – MADRID Alzheimer Bulgaria ITALY – MILAN Fundación Alzheimer España BULGARIA AUSTRIA– SOFIA – VIENNA FederazioneICELAND - REYKJAVIK Alzheimer Italia ROMANIA –SPAIN BUCHAREST – MADRID Alzheimer BulgariaAlzheimer Austria ITALYThe Alzheimer’s – MILAN Association of Iceland Societatea AlzheimerFundación Alzheimer España AUSTRIA – VIENNA ICELAND - REYKJAVIK ROMANIA – BUCHAREST BULGARIA Alzheimer- VARNA Austria FederazioneThe Alzheimer’s Alzheimer Association Italia of Iceland Societatea AlzheimerSPAIN – PAMPLONA FoundationBELGIUM Compassion – BRUSSELS Alzheimer ITALYIRELAND – ROME– DUBLIN SLOVAKIA –C.E.A.F.A. BRATISLAVA BULGARIA Ligue- VARNA Nationale Alzheimer Liga AlzheimerThe Alzheimer Uniti Society Onlus of Ireland Slovak Alzheimer’sSPAIN Society– PAMPLONA FoundationBELGIUM Compassion – BRUSSELS Alzheimer ITALYIRELAND – ROME– DUBLIN SLOVAKIA –C.E.A.F.A. BRATISLAVA CROATIA –Ligue ZAGREB Nationale Alzheimer Liga AlzheimerThe Alzheimer Uniti Society Onlus of Ireland Slovak Alzheimer’sSWEDEN Society – LUND BOSNIA & HERZEGOVINA - SARAJEVO ISRAEL – RAMAT GAN SLOVENIA – LJUBLJANA Alzheimer Croatia JERSEY – ST HELIER Alzheimerföreningen i Sverige Udruženje AiR EMDA – The Alzheimer’s Association of Association “Forget-me-not” CROATIA – ZAGREB SWEDEN – LUND BOSNIA & HERZEGOVINA - SARAJEVO JerseyIsraelISRAEL Alzheimer’s– RAMAT GAN Association SLOVENIA – LJUBLJANA Alzheimer CroatiaUdruženje AiR JERSEYEMDA – The– ST Alzheimer’s HELIER Association of Association Alzheimerföreningen“Forget-me-not” i Sverige CYPRUS – LARNACABULGARIA – SOFIA JerseyIsrael Alzheimer’s Association SPAIN – MADRIDSWEDEN – STOCKHOLM PancyprianAlzheimer Alzheimer Bulgaria Association LUXEMBOURGITALY – MILAN – LUXEMBOURG Fundación AlzheimerDemensförbundet España CYPRUS – LARNACABULGARIA – SOFIA Federazione Alzheimer Italia SPAIN – MADRIDSWEDEN – STOCKHOLM Alzheimer Bulgaria AssociationITALY – MILAN Luxembourg Alzheimer Fundación Alzheimer España Pancyprian Alzheimer Association LUXEMBOURG – LUXEMBOURG Demensförbundet Our members are helping BULGARIA - VARNA Federazione Alzheimer Italia SPAIN – PAMPLONA CZECH REPUBLICFoundation – PRAGUE Compassion Alzheimer AssociationITALY – ROME Luxembourg Alzheimer C.E.A.F.A. SWITZERLAND – YVERDON-LES-BAINS Our members are helping BULGARIA - VARNA SPAIN – PAMPLONA Czech Alzheimer’s Society MALTAAlzheimer – UnitiMSIDA Onlus Association Alzheimer Suisse CZECH REPUBLICFoundation – PRAGUE Compassion Alzheimer MaltaITALY –Dementia ROME Society C.E.A.F.A. SWITZERLAND – YVERDON-LES-BAINS people with dementia and theirCROATIA – ZAGREB Alzheimer Uniti Onlus SWEDEN – LUND Czech Alzheimer’s Society MALTA – MSIDA Association Alzheimer Suisse people with dementia and theirAlzheimer Croatia JERSEY – ST HELIER Alzheimerföreningen i Sverige Our members are helpingDENMARK – HELLERUP Malta Dementia Society TURKEY – ISTANBUL CROATIA – ZAGREB Jersey Alzheimer’s Association SWEDEN – LUND carers in 37 countries AlzheimerforeningenAlzheimer Croatia MONACOJERSEY – ST –HELIER MONTE-CARLO AlzheimerföreningenAlzheimer i Sverige Vakfı carers in 34 countries DENMARK CYPRUS– HELLERUP – LARNACA AMPAJersey Alzheimer’s- Association Association Monégasque pour SWEDEN – STOCKHOLMTURKEY – ISTANBUL people with dementia andAlzheimerforeningen theirPancyprian Alzheimer Association laMONACOLUXEMBOURG recherche – MONTE-CARLOsur – LUXEMBOURG la maladie d’Alzheimer DemensförbundetAlzheimer Vakfı Our members are helpingFINLAND –CYPRUS HELSINKI – LARNACA AMPAAssociation - Association Luxembourg Monégasque Alzheimer pour SWEDEN – STOCKHOLMUNITED KINGDOM – EDINBURGH Pancyprian Alzheimer Association LUXEMBOURG – LUXEMBOURG Demensförbundet Our members are helpingMuistiliitto la recherche sur la maladie d’Alzheimer Alzheimer Scotland carers in 32 countries CZECH REPUBLIC – PRAGUE Association Luxembourg Alzheimer SWITZERLAND – YVERDON-LES-BAINS Our members are helpingFINLAND –Czech HELSINKI Alzheimer’s Society NETHERLANDSMALTA – MSIDA – AMERSFOORT Association UNITEDAlzheimer KINGDOM Suisse – EDINBURGH people with dementia andMuistiliitto their Alzheimer Scotland people with dementia and theirCZECH REPUBLIC – PRAGUE AlzheimerMalta Dementia Nederland Society SWITZERLAND – YVERDON-LES-BAINS people with dementiaFRANCE and –Alzheimer PARISCzech Alzheimer’s their Europe Society Members NETHERLANDSMALTA – MSIDA – AMERSFOORT Association UNITEDAlzheimer KINGDOM Suisse – LONDON Our members are helpingAssociationDENMARK France Alzheimer – HELLERUP AlzheimerMalta Dementia Nederland Society TURKEY – ISTANBULAlzheimer’s Society carers in 32 countries FRANCE – PARISAlzheimerforeningen MONACO – MONTE-CARLO Alzheimer VakfıUNITED KINGDOM – LONDON carers in 32 countries AlzheimerDENMARK – HELLERUP Europe Members NORWAY – OSLO TURKEY – ISTANBUL AMPA - Association Monégasque pour carers in 34 countriesAssociation France Alzheimer Alzheimer’s Society people with dementia andAlzheimerforeningen their NasjonalforeningenlaMONACO recherche – MONTE-CARLOsur la maladie Demensforbundet d’Alzheimer Alzheimer Vakfı Our members are helpingGERMANY FINLAND– BERLIN – HELSINKI NORWAYAMPA - Association – OSLO Monégasque pour UNITED KINGDOM – EDINBURGH Ourcarers members in 32 countries are helpingDeutsche AlzheimerMuistiliitto Gesellschaft e.V. Nasjonalforeningenla recherche sur la maladie Demensforbundet d’Alzheimer Alzheimer Scotland GERMANYAlzheimer FINLAND– BERLIN – HELSINKI Europe Members POLANDNETHERLANDS – WARSAW – AMERSFOORT UNITED KINGDOM – EDINBURGH people with dementia andMuistiliitto their Alzheimer Scotland people with dementiaDeutsche and Alzheimer their Gesellschaft e.V. 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AlzheimerPolish Alzheimer’s Portugal Association HUNGARY Social Cluster Association Polish Alzheimer’s Association Disease and Related Disorders POLAND – WARSAW Hungarian Alzheimer SocietyAALBANIALBANIALBANIA – TIRANA Social ClusterHUNGARYGREECE Association – THESSALONIKI POLAND – WARSAW Alzheimer Albania Panhellenic Federation of Alzheimer’s Polish Alzheimer’s Association Alzheimer Albania Albania HungarianAlzheimer Alzheimer Society Europe Members Polish Alzheimer’s Association BELGIUMBAUSTRIABELGIUMELGIUM – –– BRUSSELS VIENNABRUBRUSSELSSSELS ICELANDIRELAND –- DiseaseGREECE REYKJAVIKDUBLINAlzheimer and– THESSALONIKI Related Disorders Europe Members ROMANIASLOVAKIAROPORTUGALPORTUGALMANIA – – LISBON BUCHAREST BBRATISLAVA–U LISBONCHAREST AUSTRIA – VIENNA ICICELANDELAND - - R PanhellenicREYKJAVIKEYKJAVIK Federation of Alzheimer’s ROMANIA – BUCHAREST LigueLigueAlzheimer Nationale Nationale Austria Alzheimer Alzheimer Liga Liga TheICELAND Alzheimer’sAlzheimer –GR REYKJAVIKEE SocietyC EAssociation – THE SofSALON Ireland ofIK IcelandI SocietateaSlovakAlzheimerAlzheimer Alzheimer’s Portugal Alzheimer Portugal Society AAUSTRIAUSTRIA – VVIENNAIENNA The Alzheimer’sDiseaseICELAND Association and - REYKJAVIK Related Disordersof Iceland PORTUGALROMANIAPORTUGAL – – BUCHAREST LISBONLISBON Alzheimer Austria TheAlzheimer Alzheimer’s Iceland Association of Iceland Societatea Alzheimer Alzheimer Austria PanhellenicTheHUNGARY Alzheimer’s – Federation BUDAPEST Association of Alzheimer’s of Iceland AlzheimerSocietatea Portugal Alzheimer HUNGARY DiseaseSocial Cluster and Related Association Disorders Hungarian Alzheimer Society BOSNIABOBELGIUMBOSNIASNIA & & HERZEGOVINA– HERZEGOHERZEGOVINA BRUSSELSVINA – -SARAJEVO SARAJEVSARAJEVOO IRELANDISRAEL – RAMAT– DUBLIN GAN SLOVAKIASLOVENIASLOVAKIROMANIAA –– – LJUBLJANABRATISLAVABRAT BUCHARESTISLAVA BELGIUM – BRUSSELS IRIRELANDELAND – – DU DUBLINBLIN SLOVAKIA – BRATISLAVA UdruženjeUdruženjeLigue Nationale AiR AiR AlzheimerBAUSTRIABELGIUMELGIU LigaM –– VIENNA BRUBRUSSELSSSELS TheEMDAIRELAND Alzheimer – The – ICELANDIRELANDDUBLIN Alzheimer’s Society –- REYKJAVIKDUBLIN of Association Ireland of SlovakAssociationROMANIASLOVAKIAROSocietateaMANI Alzheimer’sA – BUCHARESTBBRATISLAVA “Forget-me-not”UAlzheimerCHARE SocietyST AUSTRIA – VIENNA The AlzheimerICICELANDELAN SocietyD - - R REYKJAVIKE YKJAof IrelandVIK ROMANIA – BUCHAREST Ligue Nationale AlzheimerLigueAlzheimer Nationale Liga Austria Alzheimer Liga TheIsrael AlzheimerThe Alzheimer’sAlzheimerSociety of Society Association Ireland of Ireland of Iceland SlovakSocietateaSlovak Alzheimer’s Alzheimer’s Alzheimer Society Society Alzheimer Austria TheThe Alzheimer’s Alzheimer’s Association Association of of Iceland Iceland Societatea Alzheimer

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Alzheimer Nederland UNITEDAlzheimer’s KINGDOM Society – LONDON AssociationGERMANY –France BERL IAlzheimerN Association France Alzheimer AlzheimerAlzheimerAMPA – Association Nederland Nederland Monégasque pour la Alzheimer’sAlzheimer Society Scotland FRANCEGERMANY – PARIS – BERLIN Association France Alzheimer POLANDNORWAY – – WARSAW OSLO UNITEDUAlzheimer’sNITED KINGDOMKING SocietyDOM – LONDONLONDON recherche NORWAsurNORWAY la maladieY – – OSL OSLOO d’Alzheimer FRANCEDeutscheAssociation – AlzheimerPARIS France Alzheimer Gesellschaft e.V. 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NasjonalforeningenNasjonalforeningenMONTENEGROPORTUGAL – PODGORICA Demensforbundet Demensforbundet– LISBON Alzheimer’s Society GREECEGERMANY – THESSALONIKI – BERLIN NasjonalforeningenPOLAND – WARSAWDemensforbundet GERMANY – BERLIN NVO FuturaPOLANDAlzheimerPolish Alzheimer’s – PortugalWARSAW Association GERMANYPanhellenic – Federation BERLIN of Alzheimer’s Polish Alzheimer’s Association Deutsche Alzheimer GesellschaftGREECE – THESSALONIKI e.V. Polish Alzheimer’s Association Deutsche Alzheimer GesellschaftGREECE – THESSALONIKI e.V. Disease and Related DisordersPanhellenic Federation of Alzheimer’s POLANDPORTUGAL – WARSAW – LISBON PanhellenicDisease and Federation Related Disorders of Alzheimer’s POLAND – PORTUGALWARSAW – LISBON Disease and Related Disorders PolishAlzheimerNETHERLANDS Alzheimer’s PortugalPORTUGAL – AMERSFOORT Association – LISBON Disease and Related Disorders Polish Alzheimer’sPORTUGALAlzheimer Association Portugal – LISBON GREECE – THESSALONIKI Alzheimer NederlandAlzheimer Portugal GREECE – THESSALONIKI Alzheimer Portugal Panhellenic Federation of Alzheimer’s Panhellenic Federation of Alzheimer’s Disease and Related Disorders PORTUGAL – LISBON Disease and Related Disorders PORTUGAL – LISBON Alzheimer Portugal Alzheimer Portugal 29th Alzheimer Europe Conference Making valuable connections The Hague, Netherlands 23–25 October 2019 www.alzheimer-europe.org/conferences #29AEC