Dementia in Europe magazine issue 29, February 2019 by Alzheimer Europe

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

discusses developments in social affairs at an EU level

Helga Rohra

looks back on six years with the EWGPWD

JosĂŠ Luis Molinuevo

delivers the keynote lecture at the 28th Alzheimer Europe Conference

TABLE OF CONTENTS

Contents 3

Welcome by Iva Holmerová, Chairperson of Alzheimer Europe

Alzheimer Europe 4 7 10 12 14

European Parliament lunch debate focuses on dementia as a priority of the EU health programme Alzheimer Europe AGM elects new Board and welcomes two new member organisations Alzheimer Europe hosts the fourth edition of its annual Alzheimer’s Association Academy Comparing dementia strategies across Europe Promoting intercultural dementia care and support in Europe

Contact Alzheimer Europe 14, rue Dicks L-1417 Luxembourg +352 29 79 70 +352 29 79 72 www.alzheimer-europe.org info@alzheimer-europe.org @AlzheimerEurope alzheimer.europe

Policy Watch 15 16 17 20 21 22 24 27

Governmental Expert Group on Dementia meets for first time Dementia as a European priority – A timeline of key developments since 2014 European Alzheimer’s Alliance members share their thoughts on making dementia a European priority Alzheimer Europe launches European Dementia Pledge for the European Parliament Elections – Get involved! European Institutions reach agreement over European Accessibility Act Commissioner Marianne Thyssen speaks to Alzheimer Europe about the progress of key social reforms at an EU-level The Innovative Medicines Initiative celebrates ten years of breakthroughs German Government commits to developing national dementia strategy

Dementia in Society 28 30 32 34 36

Helga Rohra reflects on her time giving a voice to people with dementia in Europe Flanders forms a working group of people with dementia Fostering multidisciplinary exchange towards person-centred dementia care Public opinion overwhelmingly against French decision to stop reimbursing Alzheimer’s drugs A look behind the headlines: The promise and reality of AI predicting AD

Spotlight on 28AEC 38 40 46 47 48 50

Alzheimer Europe Conference held in Barcelona under the banner “Making dementia a European priority” Alzheimer Europe Conference plenaries focus on policy, human rights, care and research Snapshots of #28AEC European Working Group of People with Dementia begins fourth term of office Congratulations to the winners of the poster awards! Facts and figures

Alzheimer Europe Board Chairperson: Iva Holmerová (Czech Republic) Vice-Chairperson: Charles Scerri (Malta) Honorary Secretary: Jim Pearson (UK – Scotland) Honorary Treasurer: Maria do Rosário Zincke dos Reis (Portugal) Members Helen Rochford-Brennan, Chairperson of the European Working Group of People with Dementia (Ireland) Stefanie Becker (Switzerland) Marco Blom (Netherlands) Sabine Jansen (Germany) Pat McLoughlin (Ireland) Sirpa Pietikäinen (Finland) Jesús Rodrigo (Spain) Karin Westerlund (Sweden) Staff Jean Georges, Executive Director Christophe Bintener, Project Officer Cindy Birck, Project Officer Kate Boor Ellis, Communications Officer Ana Diaz, Project Officer Dianne Gove, Director for Projects Gwladys Guillory, Event and Conference Coordinator Owen Miller, Policy Officer Stefanie Peulen, Finance Officer Grazia Tomasini, Administrative Assistant Layout: The Publishing Bureau Photo credits Innovative Medicines Initiative Jurn Verschraegen Herbert Jennerich, BMFSFJ Alzheimer Europe European Parliament European Commission

Dementia in Europe

WELCOME

Welcome The Policy Watch section presents the first meeting of the newly convened Governmental Expert Group on Dementia, an exciting new initiative by Alzheimer Europe, made possible with the support of the Dutch Ministry of Health, Welfare and Sport, the Italian Ministry of Health and the Scottish Government. The group was brought together after initial discussions between these members resulted in agreement that losing the European Commission Expert Group, disbanded midyear, would be detrimental. We Iva Holmerová, Chairperson of Alzheimer Europe are delighted that the meeting was so well I am pleased to welcome you to the 29th edi- attended, with 17 governments represented. tion of our Dementia in Europe magazine. With the upcoming European elections (May The first section highlights some of our efforts 2019), we decided to ask MEPs in the Euroto ensure dementia remains a European pri- pean Alzheimer’s Alliance about their hopes ority, including our recent lunch debate in and plans for the future of the EU. Readers the European Parliament, which focused on can also find out what is happening with the dementia as a priority of the EU health pro- European Accessibility Act and the Work-Life gramme. During the debate, Geoff Huggins, Balance provisions associated with the EuroDirector of Health and Social Care Integration pean Social Pillar in two further articles. For at the Scottish Government presented the the latter, we spoke to Commissioner for work of the second European Joint Action on Employment, Skills, Social Affairs and Labour dementia and Jean Georges, Executive Direc- Mobility, Marianne Thyssen. tor of Alzheimer Europe, gave an overview of some of the work taking place at a Euro- Also at European level, representatives of the pean level, including some of the policy and Innovative Medicines Initiative (IMI), which legislative drivers from the European Union. celebrated its 10th anniversary in 2018, spoke Additionally, he highlighted some aspects to us about some achievements to date and of Alzheimer Europe’s work, including our about Alzheimer Europe’s involvement in IMI annual publications, the 2018 editions of projects. which are also presented in this first section. 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 K. Becker (Austria), Sirpa Pietikäinen (Finland), Federal Government has announced its Nessa Childers (Ireland) and Deirdre Clune intention to develop a national dementia (Ireland) for their active participation, as well strategy. as MEP Martina Anderson (UK, Northern Ireland) who was represented at the meeting. In the Dementia in Society section, we speak to Helga Rohra, a founding member and Our recent Alzheimer’s Association Academy the first Chair of the EWGPWD, who has left is also showcased. National member organisa- the group. Helga has been instrumental in tions, company representatives and members much of the work done by the group since of the European Working Group of People with its inception in 2012 and she will be missed. Dementia (EWGPWD) joined us for the fourth I would like to personally thank her for her edition of this popular annual event and expert hard work, leadership, enthusiasm and dedspeakers from various European and national ication during her six years of service and for organisations presented on topics chosen by her continuing important contributions to a survey of previous participants. the field of dementia.

At national level, we look at work being done in three countries: Belgium, France and Germany. In Germany, the INTERREG-Danube INDEED project is developing an intervention to support occupational collaboration in order to improve care for people with dementia in the Danube region, Project Coordinator Alexander Kurz and Project Manager Lea Pfäffel tell us more. The Flemish Region of Belgium has its firstever working group of people with dementia. Olivier Constant from the Flanders Centre of Expertise on Dementia and Hilde Lamers of the Alzheimer’s League Flanders introduce the group. Providing a voice to people with dementia and their carers is an important part of what we do and groups like this are of paramount importance to ensure their voices are heard. In France, an overwhelming majority of the public disagreed with the government’s decision to stop reimbursing anti-dementia drugs. France Alzheimer tried hard to have this decision reversed, via a campaign, supported by Alzheimer Europe, and a national survey, conducted together with the Société Française de Neurologie (SFN) and the Fondation pour la recherche sur Alzheimer. We asked Prof. Bruno Dubois to tell us more about the results of the survey and the impact of this controversial government decision. Finally, we take a look “behind the headlines”, with Prof. Craig Ritchie and Dr Samuel Danso, both from the University of Edinburgh, who comment on recent headlines about Artificial Intelligence (AI) and its ability to predict Alzheimer’s. Our “special section” takes a look back at the success of our 28th Alzheimer Europe Conference held in Barcelona. Key presentations at the opening ceremony and the plenary sessions are covered and we also showcase the contributions of people with dementia at the conference. Happy reading!

Dementia in Europe

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 of 2018 in the European Parliament on 4 December 2018, which focused on the topic of “Dementia as a priority of the EU health programme”. Hosted by European Alzheimer’s Alliance member Marian Harkin, MEP (Ireland), the debate was well attended with 92 delegates from across Europe, comprising representatives from the European Working Group of People with Dementia (EWGPWD), national Alzheimer’s Associations, national government representatives, research partners and pharmaceutical representatives. Welcoming delegates and opening the session, Marian Harkin MEP (Ireland) noted that a recent report from the Organisation of Economic Coordination and Development (OECD) had estimated that around 9 million people Marian Harkin opens the lunch debate

were living with dementia in EU Member States. Ms Harkin noted that with no cure currently available, better policies and interventions were key to improving the lives of people with dementia. However, she also noted some of the difficulties in achieving European action, noting that the Council was Geoff Huggins presents on the Joint Action very clear about health remaining a Member State competence. European Joint Action on Dementia

“

Europe is changing. Families are more international. By sharing good practices and knowledge, dementia could be a flagship area, positively influencing lives through collaboration.”

Geoff Huggins, Director of Health and Social Care Integration at the Scottish Government presented on the work of the second European Joint Action on dementia, “Act on Dementia”. Mr Huggins explained that the project was an example of an EU project funded from the health programme, building on ALCOVE, the previous Joint Action.

Iva Holmerová

He explained to delegates that unlike other projects, which often focus on generating new knowledge or information, the previous 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.”

4 Dementia in Europe

Geoff Huggins

ALZHEIMER EUROPE

Beginning in 2016 and due to run for three years, the programme has involved more than 10 countries, with additional collaborators 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 workstreams on coordination and dissemination are both being led by the Scottish Government, with the Agency for Health Quality and Assessment of Catalonia (AQuAS) in Catalonia leading the evaluation of the project. The project is due to conclude and report on its work in October 2019. European-level policies and Alzheimer Europe workstreams Jean Georges, Executive Director of Alzheimer Europe presented to delegates on some of Deirdre Clune talks about the social aspects of dementia

Jean Georges presents on the work of Alzheimer Europe

the relevant work taking place at a European level, taking the opportunity to reflect on the progress made to date, some outstanding challenges and concerns, and identifying what Alzheimer Europe would like to see take place next. Mr Georges set out the context around the work to establish dementia as a European priority, highlighting that the Paris Declaration in 2006 was a catalyst for the beginning of a political movement, calling for additional funding for research, as well as a more

coordinated and holistic approach to research. He further explained that activities beginning under the French Presidency in 2006 had been incredibly helpful in establishing dementia as a priority. In the following years, there was significant progress made in relation to increases in EU funded dementia research, through a number of different programmes, including the 7th and 8th Framework Programmes for Research and Technological Development (FP7 and Horizon 2020), the Joint Programme on Neurodegenerative Diseases (JPND) and the Innovative 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 Balance 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 European 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 Governmental 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 – a member of the EWGPWD – highlighted her According to Alzheimer experience on Madeira (Portugal), working to ensure carers received support and asked Europe, 8.7 million Euro- how we can ensure national governments peans live with dementia and make this support available for everyone. Jean these numbers are expected to Georges agreed that this was challenging and said that even in developed countries, it was at least double by 2050. Demen- an area which was often not given enough tia deserves to remain a priority attention.

“

of future EU health and research programmes!” Jean Georges Open floor discussion

Nessa Childers, MEP (Ireland) asked about continuing this work into the next parliament and Mr Georges highlighted that, in the run up to the elections, Alzheimer Europe, together with its members, would let candidates know how they can be involved and the key issues for the dementia agenda.

Following the presentations, there was an 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, variawhich 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

At the end of the meeting, Iva Holmerová, Chair of Alzheimer Europe, presented Helga Rohra with a plaque thanking her for six years of service in the EWGPWD, including four years served as the group’s first Chair. You can read our interview with Helga on page 28. Alzheimer Europe’s next European Parliament lunch debate is taking place on 26 February 2019, focusing on “Dementia as a European research priority”.

Nélida Aguiar shares her experience

ALZHEIMER EUROPE

Alzheimer Europe AGM elects new Board and welcomes two new member organisations On 29 October 2018, Alzheimer Europe held its Annual General Meeting (AGM) in Barcelona. Member associations elected a new Board which will serve until 2020 and accepted two new provisional member organisations. Alzheimer Europe’s Board of Directors is com- Charles Scerri (Malta) – Vice-Chairperson prised of the office bearers – Chairperson, Vice-Chairperson, Honorary Secretary and Charles is a graduate from Honorary Treasurer – and up to seven further the University of Dundee, members directly elected by a General MeetScotland. He lectures in ing. The Chairperson of the European Working dementia studies at the Group of People with Dementia (EWGPWD) is University of Malta and an ex officio member of the Board of Directors is the National Focal Point with full voting rights. All directors must on Dementia in Malta. He belong to full member organisations of is also the Chairperson of the Malta Dementia Alzheimer Europe. Society and has been Vice-Chair of Alzheimer Europe since October 2016. Prior to this, he was Iva Holmerová (Czech Republic) – Chairperson Alzheimer Europe’s Honorary Secretary: Iva is founder of the Czech Alzheimer Society, holds a PhD in Social Gerontology and is a practicing physician qualified in General and Geriatric Medicine. Iva is also the Director of the Czech Centre of Gerontology and joined the Board of Alzheimer Europe in 2008, serving as Vice-Chairperson from 2010 to 2016 until she became Chairperson in 2016: “I have been involved in the dementia movement for many years, during which my ‘purely’ professional view on dementia has changed, due to meetings with people with dementia and caregivers and to my close personal insights. As Chairperson, I would encourage all countries in the European region to join our membership and to be as active as possible. Some of the issues faced by people with dementia require international collaboration.”

“For years, Alzheimer Europe has been advocating to make dementia a health and social priority in European countries. As Vice-Chair, I have gained significant experience in the workings of dementia associations throughout Europe, which in turn was instrumental in finding ways in which we can come together for the benefit of individuals with dementia, their caregivers and family members.” Jim Pearson (UK – Scotland) – Honorary Secretary

and other legal rights at the heart of each commitment of Scotland’s first and second dementia strategies. Jim has an MBA from Glasgow Caledonian University and joined the Board of Alzheimer Europe in 2014: “Being part of an international movement which aims to transform the lives of people with dementia, their families and carers and which shares the same human rights based principles and values is very important to me. Being a member of the board of Alzheimer Europe provides the opportunity work as part of a European wide collective force for change.” Maria do Rosário Zincke dos Reis (Portugal) – Honorary Treasurer Rosário has been practicing law in Portugal since 1987, focussing on family law and the legal rights of people with incapacity. She joined the Alzheimer Europe Board in 2008, and became Honorary Treasurer in 2010. She is heavily involved in Alzheimer Portugal, as a current Board member and trainer on Legal and Fundamental Rights of elderly people and people with incapacity: “My experience as member of Alzheimer Europe’s Board has been very rewarding personally and as a representative of a national organisation, because it has allowed me to learn a lot from my colleagues and keep up with what is happening across Europe in the field of dementia. The opportunity to participate in decisions and in defining Alzheimer Europe’s strategy has been of great importance to me and to Alzheimer Portugal, where I can share initiatives and achievements.”

Jim is Alzheimer Scotland’s Director of Policy & Research and is respon- Helen Rochford-Brennan (Ireland) – Chair sible for Alzheimer of the EWGPWD Scotland’s public policy engagement. He has a Helen was the Vice-Chairbackground in welfare rights and a particuperson of the EWGPWD lar interest in promoting as well as protecting from 2014–2016 and the rights of people living with dementia. became the group’s 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 National Dementia Strategy and is a Global Dementia Ambassador.

Marco Blom (Netherlands) – New member

Marco graduated from the Radboud University A life-long Rights and Social Justice CamNijmegen in 1987 with paigner, Helen now advocates for the rights an MSc in Psychogeronof people with dementia and was recently tology. After working in awarded an Honorary Doctor of Laws degree a regional mental health from the National University of Ireland Galway. institute for elderly people and at the National Institute of Care and Welfare, he Helen was diagnosed with Early Onset joined Alzheimer Nederland in 1997. He Alzheimer’s at the age of 62 and has since worked in several positions and was interim written very personally about living with CEO from February 2017 until September 2018. Alzheimer’s dementia: Currently he is scientific director and also head of National Services. He is an expert in “I am not alone in realising the contributhe field of dementia and has a special intertion people with dementia can make. It is est in scientific research into dementia and great to be part of the ‘Normal Majority’ development of internet-based interventions and not just a person with Alzheimer’s for family carers of people with dementia. He or tokenistic. It gives me a sense of puris also a Board member of the national Delta pose and is an opportunity for me to Plan Dementia in the Netherlands and editor create awareness of the aspirations and of Denkbeeld - a Dutch journal on demenneeds of people with dementia to be fully tia care: integrated in society. In the words of Ed Roberts “when others speak for you, you “Since I started to work for Alzheimer Nedlose”. 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 needs and aspirations.” to strengthen the national organisations in the different countries. I am very motiStefanie Becker (Switzerland) vated to make a good contribution to the work of Alzheimer Europe, with my broad Stefanie is the Director of experience in the field of dementia and Alzheimer Switzerland. A especially the broad range of activities trained psychologist and I am involved in with Alzheimer Nedergerontologist, she holds land. As one of the founding members of a PhD in Psychology from Alzheimer Europe, Alzheimer Nederland Karl-Ruprechts Univerwill actively support the exchange of ideas sity of Heidelberg, Germany. For almost 20 and experiences (like the Alzheimer Cafés years, she has been working on the quesand our online platform for family cartion of stabilising and promoting quality egivers) between member organisations” of life for people with dementia. She is also founder and chief editor of the bilingual (Ger- Sabine Jansen (Germany) man-French) journal Applied Gerontology. Sabine is the Executive Stefanie joined the Board in 2016: Director of the German Alzheimer’s association, “Advocating for and supporting the needs Deutsche Alzheimer of people with dementia and their relaGesellschaft (DAlzG), the tives on the European level is a great umbrella organisation of opportunity to raise our voice. A voice more than 130 regional and local Alzheimer which only gets stronger and louder with associations. Before joining DAlzG in 1995, the member organisations. Additionally, Sabine completed her studies in social work the exchange of experience, successful and worked in various fields of the health projects or even failures of initiatives sector. She is a member of several advisory between countries is always of mutual boards, including the Ministry of Health and importance and inspiring.” various research projects. 8 Dementia in Europe

Sabine joined the Board in 2016: “The work we do at European level is important, not only where health policy issues are concerned, but also in the exchange of experience and knowledge.” Pat McLoughlin (Ireland) – New member Pat worked in consultancy prior to becoming CEO of the Alzheimer Society of Ireland in 2016. He was previously CEO of two Health Authorities, Deputy CEO of the Irish Health Service Executive and Director of public hospitals. He was also CEO of Ireland’s Payments Clearing System: “I hope to help the Alzheimer Europe Board develop strategies to ensure the lived experiences of those with dementia and their carers are central in lobbying the European Parliament.” Sirpa Pietikäinen (Finland) Sirpa Pietikäinen MEP, former Finnish Minister of the Environment (1991– 1995), has been a Member of the European Parliament since 2008. At the Parliament, she is currently a member of the Economic and Monetary Affairs Committee, and a substitute member of the Environment, Public Health and Food Safety Committee, as well as the Women’s Rights and Gender Equality Committee: With a keen interest in working on health issues with various organisations, Ms Pietikäinen joined the Alzheimer Europe Board in 2010. “Over 10 million people in Europe live with a memory disabling disease, and the number is still increasing. People with memory disabling diseases and their carers face stigma and discrimination, which makes their daily lives and health care difficult. I want to do all that I can to promote the rights of people with memory disabling diseases, help and facilitate good quality care for them, and try to support best practices in medical care for everybody.”

ALZHEIMER EUROPE

Jesús Rodrigo (Spain) Jesús has a Degree in Sciences of Education and has spent his entire professional career in non-profit organisations, in positions of increasing responsibility.

and comparing visions to what is being done in other countries to improve the quality of life of those living with Alzheimer’s. In addition, it is an important factor in reinforcing our lobby dimension with the Spanish public authorities. All this is made possible thanks to the serious and profound work that takes place within the Alzheimer Europe Board.”

He is currently the Executive Director of the Karin Westerlund (Sweden) – New member Spanish Confederation of Associations of Families of People with Alzheimer’s and other Karin holds an Executive Dementias (CEAFA), a position he has held MBA from Stockholm since 2005. Working directly with the Board, School of Economics he has contributed to developing the variand a Bachelor Degree in ous strategic plans of the organisation and financial economics from in positioning the entity as a reference to the Stockholm University. Central Government of Spain with regards the Karin’s work for Alzheimer Sweden started definition of a national dementia strategy. in 2015 with a 3-year inquiry about persons Jesús joined the Board of Alzheimer Europe with Alzheimer’s disease and Down Synin 2014: drome. Today, she works as a Consultant and Investigator for the organisation, focussing “Being part of the Alzheimer Europe Board on the dialogue with the concerned Swedish has allowed the expansion of knowledge Public authorities:

“In the work with my colleagues on the Alzheimer Europe Board, I will respond to ongoing inquiries that will arise about fundraising, strategic partner relationships and policy discussions concerning legal and economic issues concerning persons with cognitive decline.” Farewell to three former Board members Alzheimer Europe wishes to thank outgoing Board members Marie-Odile Desana (France), Sabine Henry (Belgium) and Štefanija Lukič Zlobec (Slovenia) for their service. Two new member organisations Also during the 2018 AGM, Alzheimer Europe was pleased to welcome two new provisional member organisations: Alzheimer Disease Association of Macedonia and NGO Living with Dementia, Estonia were formally voted in, bringing the number of Alzheimer Europe members to 42, hailing 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 Association Academy involved 9 experts from various European and national institutions/organisations. Participants included 31 representatives from Alzheimer Europe’s member organisations; 4 company representatives; 4 members of the European Working Group of People with Dementia (EWGPWD) and 7 Alzheimer Europe staff members.

was moderated by James Pearson, from Alzheimer Scotland. This session included presentations by Štefanija Lukič Zlobec (Spominčica, Slovenia), who spoke about the experience of Spominčica in involving and supporting carers of people with dementia; Bernard O’Hagan (National Dementia Carers Action Network – NDCAN, Scotland, UK), who told delegates about the experiences of carers of people with dementia advoInvolving carers cating for policy change at national level in Scotland; and Mario Possenti (FederaziThe first day began with a session on one Alzheimer Italia, Italy), who shared the “Involving carers of people with demen- experience of Federazione Alzheimer Italia in tia in Alzheimer’s associations” and surveying the views of carers of people with Participants and speakers at 4th edition of AE’s Alzheimer’s Association Academy

10 Dementia in Europe

Piers Kotting presents Join Dementia Research UK

dementia. During their presentations the speakers addressed key questions such as: How can Alzheimer’s associations effectively involve carers of people with dementia in their governance and activities? How should Alzheimer Europe effectively involve carers of people with dementia in its governance and activities? and how are the interests of people with dementia and of carers represented by Alzheimer’s associations?

ALZHEIMER EUROPE

Involving people with dementia

medicines; Andy Bolan (Biogen), who discussed “Health System Preparedness of Six The second session of the day was on “Giv- EU Countries for future Alzheimer’s Innovaing a voice to and involving people with tion”; and Krista Tromp (Erasmus Medical dementia in Alzheimer’s associations” and Centre, Netherlands), who spoke about how was moderated by Iva Holmerová, Chair- the introduction of preventative treatments person, Alzheimer Europe. This session impacts the ethical issues raised by genetic included presentations by Dianne Gove and biomarker risk disclosure. (Alzheimer Europe), who discussed the findings of Alzheimer Europe’s mapping exercise All three presentations helped to give the on the development and growth of working delegates at the Academy a clearer picture groups of people with dementia in the Euro- of how the introduction of disease-modpean region and Jesús Rodrigo (CEAFA, Spain), ifying treatments impacts on the role who spoke about PEPA, the Spanish Group of Alzheimer’s associations, how health of People with dementia, as an example of a care professionals need to respond to the recently-created working group. The speak- introduction of new treatments, whether ers looked at how national organisations can healthcare systems have the necessary infrabetter involve people with dementia in their structure and procedures in place for the governance and activities, and at some of the introduction of new medicines, and how barriers identified. society might respond to the introduction of these medicines as well as ethical issues Introduction of Alzheimer’s treatments/ that would need to be addressed. innovations – Some challenges Participation in dementia research Day two of the Academy began with a session on “Challenges for the introduction of The second morning session was on “ProAlzheimer’s innovation”, which was mod- moting the participation of people in erated by Jean Georges, Executive Director, dementia research”, with moderator Alzheimer Europe. This session included Charles Scerri of the Malta Dementia Socipresentations by Tim Shakespeare (Alzheim- ety. This session included presentations er’s Society, United Kingdom), who shared by Ana Belén Callado Gil (Fundació PasAlzheimer’s Society’s experience on prepar- qual Maragall, Spain), who gave examples ing for the introduction of new Alzheimer’s of the effective use of communication to Academy speakers Krista Tromp (left) and Tim Shakespeare (right) get involved in the lively discussions

increase research participation; Marissa Zwan (VUMC, Netherlands), who presented “Hersenonderzoek” – the Dutch registry for brain research and nationwide online platform for recruitment and pre-screening of participants for neuroscience studies and Piers Kotting (Join Dementia Research, UK), on increasing the participation of people in dementia research, using Join dementia research as an example. This session introduced some of the initiatives at national level to promote the involvement of people with dementia, carers and people at risk of developing dementia in dementia research, the role Alzheimer’s associations have in promoting opportunities for research participation, and whether or not it could be feasible to encourage common systems or databases for people interested in participating in dementia research. PRODEMOS project consultation The final session of the Academy was a consultation with the “Prevention of dementia using mobile phone applications project” (PRODEMOS) moderated by Krista Tromp. The PRODEMOS project aims to develop an evidence-based dementia prevention strategy using mobile health and making it accessible to those at increased risk of dementia who are usually not reached by preventive medicine. It is targeting socio-economically deprived populations in the EU and a population at risk of dementia in China. The final 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 Hoevenaar-Blom, Edme Eggink, both at Amsterdam Medical Centre, and Shanu Sadhwani (University 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 interactive event, with plenty of interesting and thought-provoking discussions. Given the success of its Alzheimer’s Association Academies to date, AE will host a fifth edition in December 2019. Dementia in Europe 11

ALZHEIMER EUROPE

Comparing dementia strategies across Europe Following the publication of Alzheimer Europe’s 2018 yearbook comparing dementia strategies in countries in Europe, Owen Miller, Policy Officer, gives an overview of the report and some of the key points within it. At the 24th Alzheimer Europe Conference in Glasgow in 2014, The Glasgow Declaration was launched, calling for the creation of a European Dementia Strategy and for the development of national strategies in every European country. The signatories also called upon world leaders to recognise dementia as a public health priority and to develop a global action plan on dementia.

These headings reflect the most frequently recurring themes across all of the strategies reviewed, regardless of differences in terms of population size, economic status or healthcare systems.

Specifically, considering the commitments and policies contained within the strategies, 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. governments have published national demen- This includes a focus on care coordination, tia strategies. Almost five years on from the diagnosis, treatment and the training of Glasgow Declaration, our 2018 yearbook has health and social care practitioners. Aside been published, comparing 21 dementia from these service-focused commitments, strategies (or national plans) and two neu- awareness raising amongst the public and rodegenerative strategies across European improved infrastructure and resources for countries, with a specific view to providing research were also areas of significant focus a comparative overview of the priorities and for many of the strategies. areas of focus. Doing so has allowed us to establish not only what areas of dementia One point we are keen to emphasise about policy and practice are being prioritised by the report is that its analysis of the polinational governments, but also the diver- cies and commitments within the national sity of approaches to these issues. The main dementia strategies is done at face value. body of the report is broken down into five With the exception of where strategies have main headings, which are then further sub- had mid-point reviews or evaluations, this divided into specific subject areas. The five report does not focus on the implementamain headings are: tion or progress of commitments or policies within the strategies. As such, where a y Development and implementation of country or strategy is not included under a strategies certain section or subsection of the report, y Human rights and legal matters it should not be inferred that the country is y Diagnosis, post diagnostic support, care not carrying out work in this area – it simand treatment ply reflects that there was a lack of reference y Informal carers to this area within the country’s strategy. y Research. Equally, the inclusion of commitments or

Dementia in Europe

Dementia in Europe Yearbook 2018 Comparison of national dementia strategies in Europe

This Dementia in Europe Yearbook received funding under an operating grant from the European Union’s Health Programme (2014-2020)

Alzheimer Europe’s 2018 yearbook

action points within the report are not a guarantee that they have been, or will be, implemented. On behalf of Alzheimer Europe, I would like to thank members who took the time to review drafts of the yearbook and suggested changes and amendments with this work – this was invaluable in ensuring the report was as accurate as possible. I would also like to extend our thanks to members of the European Working Group of People with Dementia (EWGPWD) who took time to share their personal views and experiences in relation to specific themes identified within the strategies. Their contributions within the report illustrate that without good implementation of the policies and commitments within the strategies, it will be impossible to meaningfully improve the lives and experiences of people with dementia, their families and carers. The report has now been published in English and copies can be ordered from: www. alzheimer-europe.org/Publications

ALZHEIMER EUROPE

● ● ● ● ● ● ● ●

● ● ● ●

●

● ●

●

● ● ● ● ● ● ●

● ●

● ● ● ● ● ● ● ● ●

●

● ● ● ● ● ● ● ● ●

● ● ● ●

● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●

●

● ● ● ●

● ● ●

● ●

●

● ● ● ● ●

● ● ● ● ● ● ●

● ●

● ● ● ● ● ●

● ● ● ● ● ● ● ● ●

●

● ● ● ● ● ●

●

● ● ● ● ● ● ● ●

● ● ● ●

● ● ● ● ● ● ● ●

● ● ●

● ● ● ● ● ● ● ● ● ● ● ● ● ● ●

● ● ● ●

● ● ● ● ● ● ●

● ● ●

●

● ● ● ● ● ● ● ● ● ●

● ● ● ● ●

● ●

Technology

● ●

●

● ●

Routine data

● ● ● ●

●

Research infrastructure

● ● ● ● ● ● ● ● ● ● ● ● ● ●

Public awareness

● ● ● ● ● ● ● ● ● ● ● ● ● ●

DFCs

● ● ● ● ● ● ● ● ● ● ● ● ●

Prevention

End-of-life

Acute & hospitals

Residential & Long-term care

Coordinated care

Post-diagnostic support

Diagnosis

Legal matters ● ● ● ●

● ● ● ● ● ● ● ● ● ● ● ● ● ●

Support for carers

● ● ● ● ● ● ●

● ●

Training & workforce

● ● ● ● ●

Treatment & medication

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)

Human rights

Implementation*

Table 1: National dementia strategies at a glance

● ●

● ● ● ● ● ● ● ● ● ● ● ● ●

● ● ● ● ●

●

● ● ●

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

TRANSFORMING THE LANGUAGE OF LIFE INTO VITAL MEDICINES At Amgen, we believe that the answers to medicine’s most pressing questions are written in the language of our DNA. As pioneers in biotechnology, we use our deep understanding of that language to create vital medicines that address the unmet needs of patients fighting serious illness – to dramatically improve their lives. For more information about Amgen, our pioneering science and our vital medicines, visit www.amgen.com

Amgen is proud to support Alzheimer Europe

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 from minority ethnic backgrounds with dementia, Dianne Gove, Director for Projects with Alzheimer Europe gives an overview of the background to the report and some of the key themes. An increasing number of people from minority ethnic groups are reaching an age at which the risk of developing dementia is higher and this trend is predicted to continue in the next few decades. At the same time, people from minority ethnic groups tend to use fewer services than their counterparts from the majority ethnic groups in different countries. This applies to most forms of support and care but is particularly noticeable in the context of residential care, even though many people from minority ethnic groups are employed in residential care homes.

professional carers from minority ethnic backgrounds through the identification and promotion of intercultural care and support. Members of the working group, with different expertise and experience in the field and from a range of ethnic groups, worked tirelessly throughout 2018 to produce the report. They also provided a brief overview of some of the key sections of the report at a special symposium during the 28th Alzheimer Europe Conference in Barcelona. Topics presented included: the prevalence, assessment and diagnosis of dementia in minority ethnic groups; interpreter-mediated dementia It is clear from the literature that there are assessments of people from minority ethseveral factors that may contribute towards nic groups; working with and involving local the low uptake of services and support such minority ethnic groups in the development as distrust, lack of awareness, how demen- of intercultural care and support; examples tia is understood, low levels of literacy, lack of activities and support for people from of fluency in the national language, fear specific minority ethnic groups provided that traditions and practices will not be by Alzheimer associations and issues sursupported and financial issues. Moreover, rounding live-in/migrant carers for people it is sometimes assumed that people from with dementia. minority ethnic groups don’t need support, based on the assumption that “they On behalf of Alzheimer Europe, I would look after their own”. This is a stereotype like to thank the members of the working which needs to be challenged and different 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 different ethnic expertise and personal experience in the groups, in order to develop support that is field and in so doing, made it possible for culturally appropriate and acceptable. All too Alzheimer Europe to accomplish this imporoften, care and support are provided within tant work. The members of the group were a framework which reflects the cultural tra- (in alphabetical order) Jean Georges (Luxditions, 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 of people with dementia, their carers and (Netherlands). 14

Dementia in Europe

The development of intercultural care and support for people with dementia from minority ethnic groups A discussion paper

The report entitled “The development of intercultural care and support for people with dementia 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

Alzheimer Europe’s 2018 ethics report

The report has now been published in English and will soon be available in French and German. Copies can be ordered from www. alzheimer-europe.org/Publications An online database is currently being developed containing information about culturally sensitive and appropriate initiatives and materials, which should hopefully provide ideas and a solid basis for the development or improvement of intercultural dementia care and support in Europe. This database will be regularly updated. We would therefore be pleased to hear from you about any relevant initiatives and materials you may know of in Europe.

First Meeting of Expert Working Group in Bradford, 18 May 2018

POLICY WATCH

Governmental Expert Group on Dementia meets for first time Following the decision of the European Commission to disband its own Governmental Expert Group on Dementia in 2018, Alzheimer Europe worked with the Dutch, Italian and Scottish Governments to re-establish a similar group bringing together nominated national experts to share information and expertise. A new Governmental Expert Group on Dementia met for the first time since the European Commission disbanded a similar group in summer 2018. The meetings took place on 3–4 December 2018 in Brussels, bringing together government-nominated representatives from across Europe to discuss progress and developments in relation to dementia policy, practice and research. Facilitated by Alzheimer Europe, the Dutch Ministry of Health, Welfare and Sport, the Italian Ministry of Health and the Scottish Government, the group was brought together after initial discussions between these members resulted in agreement that losing the European Commission Expert Group would be detrimental, as no other platform existed in which governments exchange knowledge and information on dementia. In total, 17 governments attended the group, with apologies received from a further 6 who expressed an interest in participating

Additionally, members heard from observer organisations who presented on relevant developments from their organisations, the Commission’s update on EU funding for dementia-specific research (primarily through the Horizon 2020 programme and through the future Horizon Europe programme), the OECD’s report into dementia policies across OECD nations and the WHO’s Global Action Plan on Dementia 2017–2025. Second Joint Action on Dementia

Members of the group also heard from work package leaders from the second Joint Action on Dementia who presented on the in future meetings. Also in attendance, progress of work underway as part of the as observers, were representatives from programme. The presentations were focused Alzheimer Europe, the European Commission, on their respective work packages: diagnosis the Organisation for Economic Cooperation and post-diagnostic support; crisis and care and Development (OECD) and the World coordination; residential care; and dementia Health Organization (WHO). friendly communities. Members agreed that this would be a useful forum in which to disCountries update on their dementia tribute the results and findings of the Joint strategies Action to as broad an audience as possible and to have a meaningful impact. To improve the understanding between members of the group, each country presented on Future meetings of the group the status of dementia policy and practice in their country. In a number of cases, countries The group agreed that it would be worthreferred to their national dementia strategy while to meet twice per year, with sessions and the specific provisions laid out therein. dedicated to exploring specific themes and It was notable that whilst there were signif- areas of work, such as care coordination or icant challenges and difficulties which were diagnosis. Alzheimer Europe will continue to 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. well as the rising demand for services and supports due to demographic changes, were 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 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 Glasgow Declaration in 2014.

Glasgow Declaration (2014) – The Glasgow Declaration called for the creation of a European Dementia Strategy and national strategies in every country in Europe. The declaration also called for world leaders to recognise dementia as a public health priority and to develop a global action plan on dementia. Over 11,600 individuals signed the declaration, with more than 200 organisations and in excess of 150 policy makers showing their support by signing the pledge.

both the European Council and the European Commission to prioritise greater collaboration in research, care and prevention. The 2016 declaration called for dementia to be recognised as a public health priority, as well as identifying the need for a strategy to meet challenges presented by dementia.

EPSCO Council adopts Luxembourg EU Presidency Conclusions (2015) – The Employment, Social Policy, Health and Consumer Affairs (EPSCO) Council of the Luxembourg EU Presidency, adopted conHorizon 2020 (2014–2020) – This pro- clusions on a number of health-related gramme is the biggest EU Research and items, including conclusions on “SupportInnovation programme, with approxi- ing people living with dementia”. One of mately EUR 80 Billion of funding available these included calling on all Member over 7 years, aiming to deliver more break- States to address dementia as a priority, throughs and discoveries in research. to develop national strategies or actions plans and to strengthen the collaboration Innovative Medicines Initiatives 1 & 2 between European countries. (2008–2013 & 2014–2020) – As part of Horizon 2020, the IMI2 is a continuation of Second European Join Action on Dementia the original IMI scheme, representing the (2016–2019) – Following ALCOVE (Alzheimer largest public-private medicines initiative Cooperative Valuation in Europe – the first in the world. It was officially launched in “Joint Action on Dementia”), the European July 2014 and has funded a number of key Commission supported the launch of a dementia research projects, including EPAD, second Joint Action through its Health AMYPAD, ROADMAP and PARADIGM, all of Programme. The Joint Action aims to prowhich involve Alzheimer Europe. mote collaborative actions among Member States to improve the lives of people livEuropean Parliament Written Declarations ing with dementia and their carers, and (2015 and 2016) – Two Written Declarations focuses on four key areas: Diagnosis and were made with the support of MEPs in post-diagnostic support; Crisis and care the European Alzheimer’s Alliance in 2015 coordination; Residential care; and Demenand 2016. The 2015 declaration encouraged tia-friendly communities.

Dementia in Europe

2014 2018 European Social Pillar (2017) – The European Social Pillar, proclaimed by EU Members in 2017, sets out 20 principles in three areas: Equal Opportunities and Access to the Labour Market; Fair Working Conditions and Social Protection and Inclusion. As part of this, the Commission is currently drafting a directive in relation to Principle Nine, “Work-Life Balance”, which would give carers the right to five days of paid leave each year. Alzheimer Europe Carers’ Survey (2018) In June 2018, at a lunch debate in the European Parliament, Alzheimer Europe presented the final findings from the European Carers’ Survey, which explored the experience of carers in the diagnostics and post-diagnostic processes in five countries across Europe. The results showed that the process of diagnosis is still taking too long and carers often do not receive adequate support after the diagnosis has been made. Governmental Expert Group on Dementia (2018) – Following the decision of the European Commission to disband condition specific Governmental Expert Groups in the summer of 2018, Alzheimer Europe worked with representatives from the Dutch, Italian and Scottish Governments, to reconvene a Governmental Expert Group. You can read about the inaugural meeting on the previous page.

POLICY WATCH

European Alzheimer’s Alliance members share their thoughts on making dementia a European priority As the current term of the European Commission comes to an end and with the European Parliament elections in May 2019, we asked members of the European Alzheimer’s Alliance to reflect on progress towards making dementia a European priority. As the timeline on page 16 shows, much Sirpa Pietikäinen (EPP, Finland) – Vice Chair progress has been made at a European level of EAA over the past 5 years to ensure that dementia remains a European priority. However, we Key achievements must continue to work to make sure that this include the European progress is not lost. Commission’s initiative on Alzheimer’s disease The current political and policy context and other dementias means there will be a lot of significant develand the pushing forward opments in a short space of time including of the creation of national Alzheimer’s prochanges to the Commissioners who lead each grammes at the Member States level. It has directorate, the ongoing negotiations on also been a key to have an inclusive and broad the Multiannual Financial Framework (MFF) roadmap with regards to how memory diswhich will determine the future budgets of abling diseases could be better treated and the EU (including the place of health), the the daily lives of people improved. future Horizon Europe (2021–2027) research programme and the European Parliament Further support can be shown by: elections in May 2019. This provides both opportunities and challenges for dementia yy Making dementia one of the health prias a European priority. orities in the Horizon Europe research programme As such, we asked members of the European yy Creating an informal carers programme Alzheimer’s Alliance (EAA) to reflect and share at the European level to address the foltheir thoughts on: lowing priorities: —— Recognition: personal and societal yy What they considered as the key achieverecognition of carers ments at an EU level in the recognition of —— Acknowledgement: recognition as dementia as a European priority. a carer leading to certain status for yy What they believed the European Union carers, which would determine rights could do to further support people with and obligations dementia and their carers in future health, —— Support: Based on certain criteria, research and social programmes. right to defined social support yy What they saw as the greatest achieve—— Work Life Balance: guaranteed right ment/contribution of the EAA over the to combine carer’s role with formal past five years. employment

Services: Support services including time-off for the carer —— Rehabilitation: Including health promotion and protection for the carer, on par with occupational health services. yy Pairing-up work on Alzheimer’s programmes with the development of user friendly e-health technologies that are accessible, developed with the full participation, from the beginning, of intended users. ——

The greatest contribution of the EAA has been building up the work of the European Dementia Ethics Network, as well as the close follow-up and monitoring of the development and implementation of national strategies to address memory disabling diseases in various Member States. Martina Anderson (GUE/NGL, UK) – Member of EAA Dementia has wide-ranging consequences for those living with the condition, for their families and carers and society as a whole. Much remains to be done, maintaining a consistent focus on support mechanisms for people diagnosed with dementia and their carers, full access to home-care where needed and addressing the stigma attached to the condition. I have met with representatives from national Non-Government Organisations (NGOs), alongside signing the 2016 parliamentary declaration and the pledge ran by Alzheimer Europe. European funding for local organisations is vital to their development and capability to support citizens living with dementia, their families, safe community schemes and carers. Funding streams for national organisations should be developed as oftentimes charities and NGOs are providing the dominant support system. Organisations caring for citizens with dementia in the north of Ireland should not suffer any diminution of such support in the context of Brexit. Europe should further focus funding and support in a research capacity, recognising that the Commission funds research projects on Alzheimer’s and

Dementia in Europe 17

POLICY WATCH

neurodegenerative diseases through the 7th Research Framework Programme.

therefore cooperation to encourage studies daunted by huge investment costs is vital.

It is a credit that the EAA has made this issue a priority. It assists in sharing developments in relation to research, support systems and developments in the treatment of Alzheimer’s. This body in association with local organisations such as The Alzheimer Society of Ireland and Dementia NI, provide consistent pressure for much-needed change. We need to develop understanding of the practical impact of dementia, alongside the psychological and emotional impact – and support carers to look after themselves when supporting someone with dementia.

Deirdre Clune (EPP, Ireland) – Member of EAA

Karin Kadenbach (S&D, Austria) – Member of EAA

Dementia has been a European priority for One of the major achievenearly ten years now. The ments at EU level in first step by the Parliarecognising that demenment was set by adopting tia is a priority is ensuring the written declaration that all countries develop 80/2008. Since then dementia has been on a dementia strategy. We the European agenda many times, such as the are not there yet but I am confident that all council communication in 2015, which welEU countries will develop such a strategy and comed the second Joint Action on Dementia. thus implement policies recognised at EU One project which I would like to highlight level that will improve the lives of those with is “Horizon 2020”. The research done during 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. Otherease 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 objecto 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) – Memwas 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. Addistrategy remains an issue. While the vast tionally, it can facilitate the involvement Getting dementia recmajority 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. Additionbeen 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 effects seri- which means it receives more attention ously, has been crucial. and funding. The EU must finance the programmes to find new treatments, medicines and innovative healthcare equipment. It must also finance programmes that support the wellbeing of carers as well as patients. The EAA has made an excellent co-operation with parliamentarians to share knowledge and existing information about dementia and its effects to citizens, as well as the latest advances in scientific research and what needs to be done in this important area. Paul Rübig (EPP, Austria) – Member of EAA

European project. Empowering citizens to participate in decision-making about their health and well-being must extend to people Despite the gathered research and growing with dementia and their carers. This means availability of data, several frontline actors addressing issues of education and poverty. such as the European Federation of Nurses The European Parliament has been very proAssociations are not sufficiently included in gressive in its approach to the Commission’s 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 real challenges of dementia. The EU could also require action from the Council to make this give more priority to dementia by establish- a reality and transform the lives of millions ing, for example, a dementia coordinator at EU of caregivers. level. Similarly, it could do more to spur collaboration between health and social ministries The greatest achievement of the European and set up a comprehensive research agenda Alzheimer’s Alliance during the current legislathat gathers all stakeholders for an informed ture has been the increased level of awareness debate on the real implications of the disease. amongst politicians about the importance of evidence-based policy-making and the role The real merit of the EAA is that it puts demen- of experts, including those with lived expetia in the spotlight, raising awareness on a rience of dementia. This is demonstrated by national and European level about the urgent the strong wording of the Written Question to need for a comprehensive approach. By gath- the Commission regarding the dismantling of ering potential stakeholders it managed to the Expert Working Group. Despite the Comtrigger a greater exchange of information and mission’s disappointing answer the Alliance is best practices. Similarly, it was effective in in a strong position to bring the fight to the lobbying dementia higher up the EU agenda, next legislature, building on the many excelwhich led to increased funding and research. lent joint initiatives and increased networking Therefore, the greatest achievement of the between Member State organisations. The EAA is to serve as the glue that connects all issues provoked by dementia and our ageing players in the field. society will not be going away soon!

The European Union is dedicated to fight diseases and to improve health and life of its citizens. The main key for that is Europe’s support for research and innovation in the health and medical sector. In STOA, the scientific committee within the European Parliament, we focused on that topic (for example with a Brain Awareness campaign) as improvement in technology for healthcare and medicine 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 achievecombined 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 affected perThrough the Act on son but the wider family, community and Dementia Joint Action, society as a whole. The Presidency’s stateand other initiatives ment that the human rights of people with the EU has put demendementia must be respected was an importia higher on the agenda tant reminder that we are dealing with people and encouraged Member who still have lives to lead, albeit in chalStates to develop national identification lenging circumstances. I was pleased to see and treatment strategies. Similarly, it set the Presidency’s call for a gender-sensitive up information-exchange and expert coop- approach to research. This mirrors my own eration mechanisms in which government work on disability, women and mental health officials can exchange best practices and and the promotion of intersectionality as a work toward a better treatment of this means of recognising multiple discrimination. disease. The key achievement really is its response to a public cry for increased action The adoption of the EU Social Pillar in Gothand effective measures. Since 2006 demen- enburg in 2017 was a crucial step towards tia has been moving up the EU agenda, putting people back at the heart of the

The European Alzheimer’s Alliance has been active in the European Parliament since 2007. The EAA is a non-exclusive, multinational and cross-party group that brings together Members of the European Parliament to support Alzheimer Europe and its members in making dementia a public health priority in Europe. The mission of the group is to send out the political message that concerted action is needed in the field of prevention, diagnosis and treatment of Alzheimer’s disease, as well as research and social policies. It also seeks to promote actions to give dementia priority at European and national level. The group currently has 126 members from 27 EU Members States.

Dementia in Europe

POLICY WATCH

Alzheimer Europe launches European Dementia Pledge for the European Parliament Elections – Get involved! Alzheimer Europe has launched its Election Campaign for the European Parliament Elections (23 May – 26 May), asking candidates to sign our pledge committing them to make dementia a European priority.

By encouraging candidates to sign up to the pledge, it gives us a strong basis on which to follow up with successful candidates after the election has taken place. For details on the election pledge, campaign resources and other relevant information, please visit the Alzheimer Europe website. Changes to number of elected MEPs

It is useful to note that as a result of the UK’s exit from the European Union, there has been a reallocation of some of the seats 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 numletter 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 first Romania 33 (32) media pack in order to target candidates, step in our work to ensure that elected deciNetherlands 29 (26) which has been shared with our mem- sion-makers at an EU level understand how 21 (21) bers, as have translated versions of the they can make a difference to the lives of peo- Greece 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) Sweden 21 (20) y Join the European Alzheimer’s Alliance Austria 19 (18) y Support the campaign of Alzheimer Europe and its member organisations to make Bulgaria 17 (17) dementia a European priority and call for: Denmark 14 (13) — Increased EU funding for and improved collaboration in all areas of dementia research Slovakia 14 (13) — The launch of a European research mission to prevent or cure Alzheimer’s disFinland 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 Slovenia 8 (8) dementia in EU disability policies Latvia 8 (8) — The recognition of the impact of caring for people with dementia and the incluEstonia 7 (6) sion of carers of people with dementia in EU Social Pillar policies. y Become a Dementia Friend and support dementia-inclusive initiatives in your Cyprus 6 (6) country. Luxembourg 6 (6) Malta 6 (6) 20

Dementia in Europe

POLICY WATCH

European Institutions reach agreement over European Accessibility Act The European Parliament and the Council have, after a number of years of negotiation, reached political agreement over the scope of a new directive aimed at improving the lives of people with disabilities. The European Accessibility Act aims to improve accessibility for a range of goods and services, whilst reducing divergent legislation across the EU. More than 80 million people in the EU are affected by a disability to some degree, with around 9 million estimated to have some form of dementia. The accessibility of goods, services and places is a precondition for equal participation in day-to-day life. As such, the European Accessibility Act was first proposed by the European Commission in December 2015, in order to bring benefits both for persons with disabilities and for businesses producing relevant products and services.

yy Audiovisual media services such as television broadcast and related consumer equipment yy Services related to air, bus, rail and waterborne passenger transport yy Banking services yy E-books yy E-commerce.

The European Accessibility Act will facilitate the work of companies, and aims to bring benefits for persons with disabilities and elderly people in the EU. Businesses will benThe Accessibility Act efit from the elimination of barriers caused by a fragmented market, thanks to the creAfter many year of negotiations, on 8 Novem- ation of a single set of requirements, which ber 2018, the European Parliament and the will simplify cross-border trade. Council came to a provisional agreement on revisions to the Commission’s initial Exemptions proposal. The Act aims to improve the functioning of the internal market for accessible There is a feeling, amongst some, that the Act 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 Disestablishment of European-wide functional ability Forum (EDF) highlighted that the Act requirements. This will be achieved through omitted key areas, which are vital in allowing accessibility principles, rather than prescrip- people with disabilities to go about everytive detailed technical solutions, applicable day life, including transport or accessible to: buildings and infrastructure. Yannis Vardakastanis, MEP President of the EDF stated yy Computers and operating systems that “EU Member States need to go above yy ATMs, ticketing and check-in machines and beyond the scope of the Act if they want yy Smartphones it to make a difference. They need to ensure yy TV equipment related to digital television that persons with disabilities have the same services access to places, products and services as yy Telephony services and related equipment everybody else.”

“

EU Member States need to go above and beyond the scope of the Act if they want it to make a difference. They need to ensure that persons with disabilities have the same access to places, products and services as everybody else.” Yannis Vardakastanis

Accessibility requirements, for example with regard to ramps, doors, public toilets and staircases, currently vary across EU countries. In order to make the built environment “continuously and progressively more accessible” to persons with disabilities, Member States are encouraged to align their diverging requirements as much as possible. The co-legislators introduced a review clause requiring the Commission to assess the situation five years after the application of the Directive. Micro-enterprises (organisations with fewer than 10 employees) that provide services are exempted from the Directive and those providing products will be exempted from some obligations to avoid imposing a “disproportionate burden” on them. Member States will have to provide guidelines to micro-enterprises in order to facilitate the implementation of this legislation. The Act provides an important step forward towards the inclusion of persons with disabilities. However, it would undoubtedly benefit from accessibility criteria, incorporating the built environment and transport. The provisional agreement will be submitted to the Council’s Permanent Representatives Committee for approval. Once the Member States’ Permanent Representatives confirm the agreement, the European Parliament will vote in the plenary session and the Council will conclude by the final adoption.

Dementia in Europe 21

POLICY WATCH

Commissioner Marianne Thyssen speaks to Alzheimer Europe about the progress of key social reforms at an EU-level Commissioner for Employment, Skills, Social Affairs and Labour Mobility, Marianne Thyssen, has spoken to Alzheimer Europe to provide an update on areas of work such as the European Social Pillar and Work-Life Balance initiative, and how these aim to improve the experience for people with dementia, their families and carers. Over one year has passed since the adoption of the European Pillar of Social Rights, what progress has been made to realising its principles?

products and services, such as phones, banking services and the 112 emergency number, accessible to persons with disabilities and older people. To make the Pillar a reality on the ground, for tangible results and a The proclamation last year by the three politi- meaningful impact in the everyday lives of cal European institutions was not the end but Europeans, we have to continue our action at the beginning of a process, a commitment to all levels. European countries must continue work together to reach our goals. This is what their efforts, in close cooperation with social we have been doing – we are implementing partners and civil society. The European Comthe Pillar together at all levels: local, national mission is steering this process through the and European, together as public authori- European Semester, the annual cycle of social ties, social partners and Non-Governmental and economic policy coordination. FurtherOrganisations (NGOs). As Commission, we more, the Commission monitors performance 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 Parliament, to finalise them. One example is scoreboard. to ensure that everybody can have access to social protection that Member States provide As the Work-Life Balance initiative moves for adequate and effective coverage. Another into the negotiation stage between the example to enable men and women to rec- Commission, Parliament and Council, what oncile work with caring obligations. Our is your hope for the final version of the iniWork-Life Balance proposal is of particular tiative and what is the expected timeline importance to people living with dementia for implementation? and their carers. It includes provisions for 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 underfor a dependent relative. representation in the labour market by promoting the equal sharing of caring A milestone was reached in November, when responsibilities between women and men. the European Parliament and the Council With this initiative, we are offering more poscame 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. new legislation will make many everyday My ultimate goal is that women and men can 22 Dementia in Europe

“

Our Work-Life Balance proposal is of particular importance to people living with dementia and their carers. It includes provisions for carer’s leave and the right to request flexible working arrangements”

care for loved ones with dementia without having to give up or slow down their careers. Our proposal for a Directive is currently under negotiation by the European Parliament and the Council, who have the common ambition to find agreement in the next weeks. The precise timeline for implementation will depend on the final agreement between the co-legislators. What do you believe remains the single greatest challenge in ensuring that people with dementia and their carers, remain active citizens within their communities? As Europe’s population is ageing, the number of people with dementia is on the rise. Finding a suitable cure might stop this increase. In the meantime, people with dementia need quality care to help them manage their condition, avoid unnecessary hospitalisations and stay as independent as possible. Maintaining social ties is particularly important, as loneliness and isolation can accelerate the progression of the disease. Receiving a diagnosis of Alzheimer’s disease or being faced with symptoms of dementia can be a shock to patients and their families, who often have to manage on their own. Targeted support for people living with dementia and carers is therefore vital. It should be provided in a coordinated way to avoid that people living with dementia need to navigate the maze of different services in the already crumbling world they live in.

“

My ultimate goal is that women and men can care for loved ones with dementia without having to give up or slow down their careers.”

POLICY WATCH

“

Across Europe, there are a few demenEuropean funding for social innovation will hopefully pave the tia friendly initiatives, but more is needed. way for further bright ideas in providing care to people with European funding for social innovation will 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 regular practice. European Social Fund Plus will merge existing funds in the social and health field. CombinIn the context of the Multiannual Finan- ing different 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 field? test innovative solutions for the health sysProfile tems of tomorrow. As budgets remain under We want to strengthen the Union’s social pressure across Europe, the structural funds Marianne Thyssen was appointed as the European Commissioner for Employment, dimension in the next long-term EU budget for allow us to make wider investments, into peoSocial Affairs, Skills and Labour Mobility 2021–2027. The Commission proposed a Euro- ples’ health, supporting longer-term outcomes 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 @mariannethyssen the right skills needed to deal with challenges in future. Investments to promote healthier www.ec.europe.eu/social and changes on the labour market, in line work environments, or support for education with the European Pillar of Social Rights. The and training programmes do the same.

Our mission is clear. We are pioneers in neuroscience. We’re proud to partner with Alzheimer Europe

Caring Deeply. Working Fearlessly. Changing Lives.

Founded in 1978, Biogen is one of the world’s oldest independent biotechnology companies. www.biogen.com

Dementia in Europe 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) celebrated the 10th anniversary of its first call for proposals, showcasing the achievements of its projects through a communication campaign over several months. What is IMI? In 2007, the European Commission released a proposal for the creation of a public-private partnership between the European Community, represented by the European Commission and the European Federation of Pharmaceutical Industries and Associations (EFPIA). The initiative aims to improve health by speeding up the development of, and patient access to, innovative medicines, particularly in areas where there is an unmet medical or social need. IMI projects aim to provide Europeans, including the increasing number of older people, with more efficient and effective medicines and treatments. IMI does this by facilitating the collaboration between the key players involved in health research, including academia, industry, small and medium-sized enterprises, patient organisations and medicines regulators. IMI refers to two consecutive programmes: IMI1 (2008–2013) and IMI2 (2014–2020). During those 10 years, more than 100 projects have been carrying out ground-breaking work on a variety of topics, including severe asthma, Alzheimer’s disease, diabetes and cancer. These delivered numerous tools and resources as well as generating more than 4,000 publications to help researchers speed up the development of urgently needed treatments.

A highlight of the year was the IMI Scientific Symposium held on 22 and 23 October 2018 in Brussels, where young researchers from 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 outter, create jobs and boost our competitiveness. comes. The scientific programme covered four They deliver results that single companies or main areas (stratification towards personalcountries could not achieve alone”. ised medicines, patient centric approaches in drug development, enablers for discovery and development of new drugs, collaborating to fight infections), reflecting the particular advantages of conducting research in public-private-partnership consortia. It featured 72 poster and 28 oral presentations selected IMI: Celebrating 10 Years of Medical by a Programme Committee comprising Innovations top experts. As part of the celebration, IMI awarded a prize to the three best poster and On 27 June 2018, over 400 people joined IMI, oral presentations at the end of the event. the European Commission and EFPIA for a Prizes were also awarded for the best IMI procelebration of IMI’s 10th anniversary at the ject communication materials. These were European Commission in Brussels. The goal selected by a committee of staff from IMI, the of the event was to highlight the successes European Commission and EFPIA. of IMI projects, showcasing tangible results which have translated into concrete benefits for European citizens. During a plenary session, speakers from diverse backgrounds highlighted the way IMI has brought together people from universities, industry, small and medium-sized enterprises, patients, and regulators to tackle major research and healthcare challenges.

Project representatives described how IMI had contributed to specific results in their fields. Commissioner Moedas gave a talk and described the cultural shift this had brought about as one of the biggest achievements of IMI, and described IMI’s work as ‘radical collaboration’. In addition, the exhibition Following a detailed analysis of IMI’s first pro- gave attendees the opportunity to meet IMI jects by independent experts into their project participants and see first-hand IMI socio-economic impacts, Carlos Moedas, Euro- project results in areas such as cancer, antimipean Commissioner for Research, Science and crobial resistance, Alzheimer’s disease, digital Innovation, said: “…IMI is delivering on its health and Ebola. 24 Dementia in Europe

IMI 10th Anniversary Scientific Symposium

IMI Stakeholder Forum 2018 The subsequent IMI Stakeholder Forum 2018 took place on 24 October in Brussels under the banner “The value of cross-sectoral health research and innovation”. The event looked at IMI through the lens of cross-sector collaboration and discussed the added value of technology convergence to address complex health challenges, especially in those areas where there is a huge public health need.

POLICY WATCH

Involvement of Alzheimer Europe To mark this anniversary, IMI also prepared a series of videos with testimonials from its key partners and stakeholders. It launched several “Project Participant Testimonial” videos, for which Alzheimer Europe’s Executive Director, Jean Georges provided the perspective of a patient organisation. Alzheimer Europe is uniquely placed to share the views and lived experience of people with dementia, to ensure ethical issues are taken 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 dementia and Alzheimer’s disease focussed undertakings from the launch of the first dementia related project on. Mr Georges commented on Alzheimer Europe’s involvement in IMI projects, highlighting that IMI’s patient-centric approach deepens collaboration between scientists and researchers and those who stand to benefit. People with dementia have been at the forefront of this trend. IMI lets Alzheimer Europe involve people with dementia in advisory roles within projects. This participation is vitally important; people with dementia are increasingly eager to be part of every decision that concerns their welfare and care. On page 26, we have included an overview of IMI projects in which Alzheimer Europe has been and is participating in as an active partner.

Dr Mathieu Boudes, PARADIGM Project Coordinator, European Patients’ Forum “PARADIGM aims to participate in the co-creation of a framework to advance patient engagement in medicines development and therefore umbrella patient organisations such as Alzheimer Europe are key to bring in the perspectives of the members of those organisations in our work. It has a multiplying effect.”

Dr Laura Campo, MOPEAD Project Leader, Eli Lilly “The MOPEAD Project aims to encourage a cultural shift towards a timely diagnosis of Alzheimer’s disease during the very early symptomatic stages of the disease. Ethical implications of an early diagnosis and external engagement are key components of the project. Alzheimer Europe, in a true spirit of collaboration, gave an invaluable contribution by producing the project’s ethics guidance and fostering an effective communication. This was a great benefit for the project and underscored the importance of value partnerships with patient organisations, with the ultimate and common goal to improve the environment for people living with Alzheimer’s disease.”

Dr Pierre Meulien, Executive Director, Innovative Medicines Initiative (IMI) “Alzheimer’s disease represents a major challenge for public health, and we urgently need new strategies to prevent the onset of disease, slow its progression and, ultimately, cure it. However, the brain is extremely complex, and developing Alzheimer’s treatments is far from easy. We need to attack it at different levels, ranging from understanding the basic mechanisms of the disease, to stratifying patients, and defining strategies for early intervention. We also urgently need effective treatments for the psychiatric symptoms of Alzheimer’s disease.

A large-scale, multi-stakeholder, collaborative approach is essential if we want to make progress on these points, and patients and carers must be at the heart of these collaborations. As such, I am delighted that Alzheimer Europe is an active participant in so many of our projects. They do a fantastic job of bringing to the scientists the needs, opinions and knowledge of people with dementia. I know they also report back to their community as well as to the wider public on the results of our projects.”

Dementia in Europe

POLICY WATCH

Overview of IMI Projects

PharmaCog (2009–2011) Prediction of Cognitive Properties of New Drug Candidates for Neurodegenerative Diseases in Early Clinical Development. The project focussed on increasing the ability to predict new effective medicines from laboratory studies and clinical models. www.alzheimer-europe.org/Research/ PharmaCog PharmaCog – grant agreement 115009

AETIONOMY (2014–2019) Organising Knowledge about Neurodegenerative Disease Mechanisms for the Improvement of Drug Development and Therapy. AETIONOMY sought to identify subgroups of dementia and Parkinson’s disease – based on the underlying genetic or molecular causes of the variants – in order to allow tailored therapies. www.aetionomy.eu AETIONOMY – grant agreement 115568

EMIF (2013–2017) The European Medical Information Framework project has connected data on 52 million individuals, deciphering links between genetic background, biological abnormalities, brain imaging changes, mental symptoms and disease progression. www.emif.eu/ EMIF – grant agreement 115372

EPAD (2015–2020) European Prevention of Alzheimer’s Dementia. The goal of the initiative is the prevention of dementia in people with evidence of the disease (such as biomarker abnormalities) who still may have little or no complaints or clinical symptoms. www.ep-ad.org/ EPAD – grant agreement 115736

ROADMAP (2016–2018) The “Real World Outcomes across the Alzheimer’s Disease spectrum for better care: Multi-modal data Access Platform” project provided the foundation for an integrated data environment and framework for real-world evidence in Alzheimer’s disease. www.roadmap-alzheimer.org/ ROADMAP – grant agreement 116020

AMYPAD (2016–2021) The “Amyloid imaging to prevent Alzheimer’s disease” project aims to improve the diagnostic workup of patients suspected to have Alzheimer’s disease and their management. www.amypad.eu/ AMYPAD – grant agreement 115952

IMI acknowledgement These projects, in which Alzheimer Europe is a project partner, receive funding from the Innovative Medicines Initiative and Innovative Medicines Initiative 2 Joint Undertakings. The Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.

Dementia in Europe

PARADIGM (2018–2020) The Patients Active in Research and Dialogues for an Improved Generation of Medicines project’s mission is to provide a unique framework that enables structured, effective, meaningful, ethical, innovative, and sustainable patient engagement and demonstrates the “return on the engagement” for all players. www.imi-paradigm.eu/ PARADIGM – grant agreement 777450

MOPEAD (2016–2019) The Models of Patient Engagement for Alzheimer’s Disease project aims to deliver a step-change in Alzheimer’s disease patient engagement strategies and a paradigm shift from late-stage diagnosis to early-stage diagnosis. www.mopead.eu/ MOPEAD – grant agreement 115985

Contact

Innovative Medicines Initiative IMI2 JU, TO 56, B-1049 Brussels, Belgium @IMI_JU Infodesk@imi.europa.eu www.imi.europa.eu +32 (0)2 221 81 81

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– 2018” report. The German Federal Government has given its approval for the development of a German National Dementia Strategy. In September 2018, Federal Health Minister Jens Spahn of the Christian Democrats (CDU) and Federal Family Minister Franziska Giffey of the Socialists (SPD) announced the decision as part of the launch of the “Alliance for People with Dementia 2014–2018” report outlining some of the work on dementia, including around 450 projects, which have taken place across Germany over the past four years.

The “Alliance for People with Dementia” brings together federal, state and local umbrella organisations as well as more than 20 associations and institutions from the nursing and health sector, science and civil society, including the German Alzheimer’s association (Deutsche Alzheimer Gesellschaft – DAlzG). Monika Kaus, Chairperson of the DalzG commented: “It is necessary to go on working together to support people with dementia and their families. For this work, resources are needed.”

People with dementia and their families are at the heart of society, it’s no longer taboo to talk about dementia.”

1.7 million people currently live with dementia in Germany. Every year, the number of people with the condition is estimated to increase by about 40,000. Based on these projections, it is estimated that by the year 2050, the number of people diagnosed with Alzheimer’s disease or another form of other dementia will rise to over three million people.

“

Jens Spahn

Stakeholders come together for the launch of the report

Jens Spahn and Franziska Giffey launch the Alliance for Dementia report

Speaking at the launch of the new report Dr Giffey said: “Dementia can affect any one of us, and the diagnosis must not lead to people being excluded from society. The report shows that we have been able to address the lives of many people with illnesses and their loved ones through a host of concrete measures. We are also starting to develop a National Dementia Strategy, one of the main priorities for me is to be able to improve the conditions for the development of a National Dementia Strategy. For example, our goal is to create equal, good quality local contact points across the country”. In addition, Mr Spahn commented: “People with dementia and their families are at the heart of society, it’s no longer taboo to talk about dementia, we need a dementia-friendly society, and the Alliance has made important progress for people with dementia – but we need to continue as a society. Working to make life more liveable for people with dementia and their relatives, that is why, together with 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 completion and sign-off from the Federal Cabinet by the beginning of 2020. Dementia in Europe 27

DEMENTIA IN SOCIETY

Helga Rohra reflects on her time giving a voice to people with dementia in Europe

more in its activities (e.g. in working groups and at conferences) and we took the opportunity to share ideas on how to involve people with dementia more fully in the organisation, including on the Board. That was the point when the EWGPWD was born! A historic moment in the dementia movement!

On 4 December 2018, Helga Rohra said goodbye to her colleagues in the European Working Group of People with Dementia (EWGPWD) after six years in the group. She spoke to us about her time in the group and the achievements she deems most important.

In spring 2012, a group of people with dementia together with staff from their national Alzheimer organisations met in Glasgow to learn how a working group can function. Scotland, with its Scottish Working Group, had already some experience and were the first in Europe. What an honour to meet and learn from my friends there!

You were a founding member of the European Working Group of People with Dementia (EWGPWD), which was formed in October 2012 and met for the first time at the 22nd Alzheimer Europe Conference. What were your reasons for joining and what were your expectations? Were these expectations met?

speaker. Together with my colleagues from Scotland and Poland we were a kind of highlight: people with dementia at younger age (we were in our fifties at that time). The interaction with many other participants gave me confidence in our still existing abilities. At a previous Board meeting, I had already emphasised the need for people with dementia to be more involved, a point on which Jean Let me go back to the year 2011. I can remem- Georges, Executive Director of Alzheimer ber the Alzheimer Europe Conference in Europe was in agreement. Alzheimer Europe Warsaw (Poland), at which I was invited as a was keen to involve people with dementia

Later in 2012, the EWGPWD was founded as an Advisory Group of Alzheimer Europe. I strongly believe that the very beginning should never be forgotten as well as the first people with dementia involved. My personal motivation to join was the chance to work, to get involved at a European level, to learn from other Alzheimer organisations. The main reason was my wish to show the world that people with dementia are still valuable and to change the perception on dementia: “See us, not only our disease!” I was convinced 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 work in this respect.

projects like INDUCT or ROADMAP – to name just a few.

My expectations today – after 6 years work in the group – have been more than met and I feel very honoured and happy to have been a part of amazing projects.

Our contribution in writing papers, even books about ethical aspects or rights of peo- The political sector, especially the social and ple with dementia was also very important. health sector could be influenced in a very positive way by giving people with dementia What do you think has been the EWGPWD’s “power” to represent themselves. biggest achievement so far and what do you hope it can achieve in the future? Honestly, I tell you, I feel sad that my friends in the group are not honoured in all the counThe major achievement, in my mind, was our tries. We are all heroes – we are all working very active participation in the recognition of for a better dementia world! dementia as a disability. We helped write history in this field! Our pioneering work will be I am also confident that working groups of honoured by the coming generations! people with dementia will and have to exist in every country! I also have a dream: A person I strongly believe that the members of the with dementia as a Member of the European EWGPWD can achieve changes in their own Parliament! countries, can be active partners in dementia strategies. As such a passionate advocate for the rights of people living with dementia, what are I am very confident that the EWGPWD will join your plans for further work in this area? in global projects, since we are the experts! I will carry on my work for the rights of people The group was originally formed to ensure with dementia! My focus is on people with that the activities of Alzheimer Europe duly dementia at a younger age and their inclusion reflect the priorities and views of people in the workplace. I am involved in projects with dementia. In your view, has this been like; “Migrants and dementia” and “Lesbian, achieved? Gay, Transgender and Bisexual (LGBT) communities and dementia”. The activities of Alzheimer Europe definitely reflect our views and focus on our priorities. My current favourite is: “Care farms”, where I’d like to point out that the staff of Alzheimer people with dementia are both working and 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 The projects are discussed and evaluated. I of feelings in dementia. 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 each member feels highly valued in his or her Alzheimer Europe Conference in The Hague advisory function and there lies the unique- with an abstract. My passion for the EWGPWD ness of Alzheimer Europe and our EWGPWD. and Alzheimer Europe will go on.

What did it mean to you to be the group’s first Chairperson, and could you share some things that were/have been important to you, both in your role as Chair and as a member of the group? To become the group’s first Chairperson meant a lot to me. Like in ordinary life, this means responsibility, a need for a good command of the English language, good insights in dementia-related topics, a tough way to represent our voice at meetings. The very sensitive difference I always felt was the balance between feelings! The members still have abilities and are passionate to contribute in projects, BUT they are fragile and tears or sadness are a part of this as well as very personal issues. I had one aim: to make everyone feel valued and feel comfortable in the group! And I know I did a good job! I myself experienced an enormous uplift by being a Chair. I was grateful that I could carry on a part of my former life, before my diagnosis. Alzheimer Europe and the EWGPWD became a kind of family. Dementia remains a key part of my life, a positive topic – a start of a new, a different life. I started to write books to encourage people with dementia to LIVE, to get active in their own associations.

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 The EWGPWD and our achievements are sim- encountered in the important work the ply unique! In 2012 and even some years after, group does? very few patient organisations had patients who spoke for themselves. Some of the main obstacles are sadly our own national organisations that we repreWe were invited as keynote speakers or sent. I noticed in all these years that some partners in workshops with professionals. support their members, such as Wales, IreA highlight was our involvement as co-re- land and Scotland – to name some of them. searchers, and being partners in many By “support” I mean: showing interest in the

activities we carry out, giving us the opportunity to talk, to activate people in our own countries, to include us in projects.

Profile Helga Rohra is an author and a dementia activist. She was a founding member of the European Working Group of People with Dementia (EWGPWD) and was the group’s first Chairperson (2012–2014 and 2014–2016). She left the group in 2018 after 6 years.

@ContactHelga

Dementia in Europe

DEMENTIA IN SOCIETY

Flanders forms a working group of people with dementia Olivier Constant, Communications Officer at the Flanders Centre of Expertise on Dementia and Hilde Lamers, Director of the Alzheimer’s League Flanders tell us about the very first working group of people with dementia to be formed in the Flemish Region (Belgium).

involvement of people with dementia in project development, research and policy advice; valuing the expertise of people with dementia as the starting point to help reduce the stigma around dementia. So far, so good

Since the group is brand new, we are focusing on creating an open, strong partnership between the members, as a foundation to move forward with tangible actions in 2019. We have already involved some of our members in the creation of a brand new animation movie for our awareness-raising campaign. It was released during the kick-off of the camOn 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 tesThe 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 demendementia, 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

Contact

Geert Van Laer, a member of the European and Flemish working groups 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 software engineer and spent a lot of time in Norway, Germany, Israel and China with his job. Even when he was at the head office in Antwerp, Belgium, he was working with people from all over the world. In 2017, he received a diagnosis of early stage dementia and in 2018 he was nominated by Ligue Nationale Alzheimer Liga and became a member of the European Working Group of People with Dementia. He is also a member of the newly launched Flemish working group of people with dementia.

Hilde Lamers, Alzheimer’s League Flanders

“Involvement of people with dementia in creating inclusive communities is essential, but I’m convinced that we need more guidance to make it work. Everybody moves at his or her own pace. A kind of procedure that describes the steps people with dementia and their loved ones can take to reach out to local policy makers would be really useful for the future.”

hilde.lamers@ alzheimerligavlaanderen.be www.alzheimerliga.be Olivier Constant, Flanders Centre of Expertise on Dementia olivier.constant@dementie.be @EcdOlivier www.dementie.be Campaign website for ‘Forget dementia, remember the person’: www.onthoumens.be

GE Healthcare

Every diagnosis can improve patient outcomes We continue to provide new solutions for an early accurate dementia diagnosis

Moving forward together Every investment can provide greater opportunities We are committed to supporting clinical and research activities in dementia

15757 Dementia press ad 180x130.indd 1

gehealthcare.com 11/01/2019 15:03

Dementia in Europe

DEMENTIA IN SOCIETY

Fostering multidisciplinary exchange towards personcentred dementia care The EU project INDEED is developing an intervention to support occupational collaboration, to improve care for people with dementia in the Danube region. Project Coordinator Alexander Kurz and Project Manager Lea Pfäffel tell us more.

INDEED

As in other parts of Europe, dementia has become a major health and social challenge in the countries of the Danube region: Upstream, in countries like Germany or Austria and downstream in Bulgaria or Romania. It is estimated that at least 3 million older adults are currently living with dementia in the geographical area. Due to increasing longevity, the number of people with dementia is predicted to rise by 50% by 2030 in Eastern and Southern Europe. At the same time, the age dependency ratio (the ratio of people aged 65 years or above relative to the population of working age) is expected to increase. The health and social systems of many countries are not optimally prepared to tackle this societal challenge. An additional problem in the Danube region is the outward migration of skilled health workers (“care drain“) driven by economic reasons which is resulting in a lack of qualified personnel and reduced family support. A survey among experts from all 14 countries of the Danube region (9 EU Member States: Austria, Bulgaria, Czech Republic, Croatia, Germany, Hungary, Slovak Republic, Slovenia and Romania. 5 non-EU countries: Bosnia and Herzegovina, Moldova, Montenegro, Serbia and Ukraine) in 2018 identified major gaps in dementia care: 32

Dementia in Europe

professional boards and academies, public administrations, municipalities, charities, nursing home operators, business schools, commercial chambers, social enterprises and start-ups. Through capacity building at the institutional level the project adopts a topdown strategy that will lead to a broad and sustainable change of care practice for all relevant actors. INDEED currently develops a skill-building educational intervention based on multidisciplinary exchange, addressing institutions. This intervention consists of three modules:

y An interprofessional educational and skill-building module addressing all occuy Insufficient 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 interinstinurses, social workers, occupational theratutional cooperation (CONNECT); pists, physical therapists and pharmacists y Business counselling to stimulate entrey Poor collaboration of these professional preneurial activity in the field of dementia groups and insufficient coordination of care (COACH). services y Lack of dementia-specific services and CAMPUS will provide a comprehensive overfacilities, particularly day centres, respite view of information that all occupations care and special care units in institutions involved in dementia care should have access y Low level of public awareness of demen- to. It will encompass topics such as the magtia and high level of stigma. nitude of dementia, the importance of timely diagnosis and the need for multiprofessional Meeting the need for multiprofessional dementia management. This form of shared collaboration learning is not intended to replace but complement profession-specific education and The initiative “Innovation for dementia in training. Also the common knowledge base the Danube region” (INDEED) is a project will facilitate mutual understanding and supported by the European Union in the exchange. framework of the INTERREG-Danube Transnational Programme from 2018 to 2021 with CONNECT will portray different occupations funds from the European Regional Develop- involved in dementia care and showcase their ment Fund (ERDF) and the Instrument for respective services. Presenting the various Pre-Accession Assistance (IPA). Twenty part- contributions to dementia care and illustratners from 10 countries are working together, ing where they are offered, will be the first representing academia, business, public step towards multiprofessional person-cenauthorities and the civil sector. An interven- tred dementia care. tion is being developed, bridging the gaps mentioned above. The vision is to strengthen COACH will provide real-life examples of competences, cooperation and innovation good practices regarding business models of different institutions involved in demen- in dementia care. Also, it will introduce basic tia care through multidisciplinary exchange. knowledge about developing a business plan as well as about market analysis. The concept A triple pillar educational intervention of social entrepreneurship as an innovative model in dementia care will be highlighted. INDEED aims at enhancing competences and skills of key institutions involved in dementia By enhancing the collaboration among occucare, comprising medical and nursing schools, pations in dementia, the quality of care for

DEMENTIA IN SOCIETY

intervention’s content. In liaison with public authorities and policy makers the intervention will be adapted to concrete national needs. The final 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 Business, Vienna. Bosnia and Herzegovina: Association AiR, Sarajevo; Ministry of Health of the Federation of Bosnia and Herzegovina, Sarajevo. INDEED DTP kick-off meeting, 25–26 September 2018

people with dementia will be increased, accommodating the concept of person-centred care. Activities connected to the implementation of the INDEED intervention will also contribute to the development of national dementia plans.

in four countries (Bulgaria, Romania, Slovakia and Slovenia). Representatives of relevant institutions as well as policy makers from the region but also from neighbouring countries will be invited to these workshops to stimulate cross-border collaboration. During the workshops, presentations will be held, printed Blended-learning as a new format for materials will be provided and group work dementia-related skill-building in the Dan- using the online platform will be arranged. ube region Also, the workshops will incorporate specific region conditions. The moderation will be perThere are a multitude of online courses avail- formed by teams consisting of one facilitator able about dementia. Some are accessible who will be active in all four countries and by to the general public and to informal carers, another facilitator from the respective country. while others target professionals as part of The workshops will be held in English. their vocational or ongoing training. In contrast, 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 ed-learning concept combining a multimedia national dementia plans and to ensure its platform with traditional formats such as sustainability, key stakeholders are involved presentations, workshops, flyers and booklets. throughout the project. The principle of parThe INDEED consortium considers face-to- ticipative design has already been applied face workshops to be an essential tool to during the initial INDEED “policy assessenhance 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 representadelivery. The online platform has the advan- tives of different 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 particis difficult because of long distances. In addi- ipatory event will be in spring 2019 where tion, the internet-based parts of the modules three focus groups on dementia educawill include more detailed information and tion will be conducted in three Danubian profession-specific learning contents from countries. which users can select their preferences. Dissemination activities Testing the strategy The experience gathered from the particThe educational and skill-building intervention ipatory events and the pilot workshops will be field-tested in a series of workshops will be used to refine and complement the

Bulgaria: Medical University of Sofia; Bulgarian Society of Dementia, Sofia. Croatia: University of Zagreb; City of Zagreb; Ministry of Health Croatia. Czech Republic: National Institute of Mental Health, Prague; MediWare Medical Engineering, Prague. Germany: Klinikum rechts der Isar of Technical University Munich; Bavarian State Ministry of Health and Care, Munich; Bavarian Research Alliance, Munich; German Alzheimer’s Association, Berlin. Hungary: Social Cluster Association, Budapest. Romania: Romanian Alzheimer Society, Bucharest. Slovak Republic: Memory Center Bratislava; Slovak Medical Association, Bratislava; Slovenia: University of Ljubljana.

Contact Prof. Dr Alexander Kurz, Project Coordinator a.kurz@tum.de Lea Pfäffel, M.Sc., Project Manager lea.pfaeffel@tum.de www.interreg-danube.eu/approvedprojects/indeed

Dementia in Europe

DEMENTIA IN SOCIETY

Public opinion overwhelmingly against French decision to stop reimbursing Alzheimer’s drugs

can cause financial problems, particularly among retired people. This ministerial decision is very unfortunate and, to put it bluntly, incomprehensible.

“

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 Dubois spoke to us about the results of the survey and about the impact of this controversial government decision. According to the press release published on World Alzheimer’s Day 2018 by the Société Française de Neurologie (SFN), Recherche sur Alzheimer and France Alzheimer, there is a question mark, for some, over the very existence of Alzheimer’s disease (AD) and a belief, still, that what we talk about as AD is simply the brain ageing. Survey respondents are almost unanimous (90%) in agreeing that it is indeed a very real disease, going some way to allaying fears that such a groundless belief might be widespread. Was this the main reason for doing the survey and are you pleased with this result? There have long been schools of thought that seek to dismiss reality, even where AD is concerned. And in good faith, without doubt. Thus, some general practitioners (GPs) consider memory loss as more or less normal in later life. They do not see a reason for medicalising a condition they consider as an inevitable and more or less natural consequence of older age. One recent book, published in France, aims solely to regurgitate old arguments, declaring that AD is nothing more than a social construct. This negationist mindset leads to the risk that older people who are ill, some of a very advanced age, may be excluded from access to care and treatments. However, just as we don’t question the treatment of cataracts or hip osteoarthritis regardless of the age at which they occur, there is no reason to deprive older patients of the care and treatment available for AD. The disease is very real: the lesions are real and are now observable in 34 Dementia in Europe

There have been a number of groundless media claims that anti-dementia drugs do “more harm than good” (although, reassuringly, these survey results show that public opinion in France has not been swayed by such sensationalist reporting). Can you give vivo; symptoms are well identified and spe- us your assessment of the efficacy of these cific. Memory problems related to AD are drugs and the reality of the benefit-harm different from those related to ageing. Thanks ratio? to specific tests, we now know how to bring them to the fore. There is no room for confu- These drugs have shown real efficacy on the sion. It is extremely rewarding and pleasing to symptoms of patients. Moreover, drugs do see that the French people, in the overwhelm- not obtain market authorisation without ing majority of cases, are well aware of this. clear proof of their benefits. Their efficacy has been demonstrated in studies, initially The survey seems to show that French conducted over 6 months, and later conpeople have a good understanding of the firmed in longer-term studies. They have impact and reach of AD and dementia. This also shown the ability of these treatments to same, well-informed population disagrees delay institutionalisation and to reduce caroverwhelmingly (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 reimbursing anti-dementia drugs. Are higher among patients who had discontinyou surprised by this level of opposition? ued treatment than in those who continued. What do you think the reasons are for such Moreover, stopping treatment leads to the strength of feeling? brutal exacerbation of symptoms.

The Ministry of Health, following the recommendations of the Haute Autorité de Santé (HAS), made the decision to stop the reimbursement of anti-Alzheimer drugs, despite evidence of their modest but irrefutable efficacy, proven in double-blind studies. It is interesting to see that the French population, again in its very large majority, disagrees with the decision. This does not surprise me, because it is consistent with what we, specialised doctors, observe in our daily practice.

Pharmacovigilance has not shown any serious adverse effects since these drugs were put on the market, 20 years ago. All you have to do is respect the doses and contraindications, as for any medication. Overall, the benefit / risk ratio remains favourable. This is also the finding of the National Institute for Health and Care Excellence (NICE) in the United Kingdom, where there is little inclination to spend public money senselessly.

Aside from the emotional and financial There is a growing number of cases where impact on persons living with demenpatients notice worsening of their symptoms tia who are currently taking these drugs after they stop taking these medications. with positive results, are there any other Others, meanwhile, have taken the decision negative consequences of stopping reimto continue their course of treatment despite bursement? Will it have an impact on early having to pay out of their own pocket. This diagnosis rates, or on research, for example?

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 to the brutal exacerbation of symptoms.”

It cannot be ruled out that this decision may, unfortunately, have an impact on early diagnosis and research. On that subject, I would look to the thesis of JF Ballenger, a historian of science. In his article “Progress in the history of Alzheimer’s disease: the importance of context”, he points out that putting dementia and senility in the same box would have resulted in abandoning all research into the disease for half a century, between the 1920s and 1970s. We can only hope that this new resurgence of obscurantist theories will not have that effect…

Does the SFN have any plans for further action in this area? At a time when some are questioning the very existence of the disease and the effect of anti-Alzheimer drugs, the SFN, as a scholarly society, conducted this survey because it deemed it important to highlight its concerns and remind people that AD is indeed a disease of the nervous system. It corresponds to a specific and now well-established pathology; it results from very real lesions, which are now observable during patients’ lives; it causes well-identified symptoms.

with the best possible support and to further our understanding of the brain lesions, their causes and how to stop them.

Profile Prof. Bruno Dubois is a professor of Neurology at Sorbonne Université and President of the Société Française de Neurologie (SFN). www.sf-neuro.org

Finally, SFN felt that in the current context, it ought to reiterate that the only constructive response to this public health issue, going forward, is to provide people with dementia Dementia in Europe

DEMENTIA IN SOCIETY

A look behind the headlines: The promise and reality of AI predicting AD

“

There are numerous benefits of employing AI technology in dementia research. 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, Scotland), about recent headlines suggesting Artificial Intelligence (AI) could be used to “spot Alzheimer’s” years earlier than current diagnosis methods allow. For the purposes of this article, Prof. Ritchie and Dr Danso specifically referred to an article in the Telegraph newspaper, titled “Neck scans, gene tests and AI apps: the race to ‘catch’ dementia early”, published 18 November 2018.

compared to patients predicted to be in a ‘slow-decline’ category.

Study 3 (www.joingamechanger.org) sought to employ AI powered technology through a smartphone app called Mezurio to collect data from participants diverse populations Were the headlines right or were they mis- to help understand what healthy cognition leading in some way? is. The data collected from participants include activities that require them the This Telegraph article mentions three recent use of memory, thinking and learning skills studies that report the application of AI during interaction with the app. Based on technology in predicting the developments review of the above studies and other simof Alzheimer’s dementia by three separate ilar published initiatives that are looking at research groups. application of AI technologies within the dementia domain, the headline appropriStudy 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 genuAlzheimer’s dementia based on features inely may have impact not only for research obtained from positron emission tomogra- but also clinical practice. AI correctly applied phy (PET) scans. may one day play an important role to predict onset and progression of Alzheimer’s Study 2 looked at how AI technology could disease. be used to predict clinical trajectories of Alzheimer’s dementia and in people in ear- How important is this story/study for furlier stages of Alzheimer’s disease, who have thering dementia research? Should we be what is commonly referred to as prodromal excited? dementia. Their aim is to one day help clinicians make important decision on the There are numerous benefits of employing type and frequency of assessment, based AI technology in dementia research. This on features obtained from both clinical data includes early detection of brain disease and computerised tomography (CT) scans that may later lead to dementia for intervenof the brain. For example, patients that are tions due to the computational efficiencies predicted to be in a ‘fast-decline’ category – which may lead to reduction in cost; conmay be recommended for close monitoring sistency in diagnosis and prediction – this through frequent assessment and imple- may then result in less ‘human errors’ in mentation of preventive interventions decision-making.

36 Dementia in Europe

Early detection of brain disease leading to interventions such as lifestyle modification or drug treatment could further delay the progress of the disease, which may reduce the impact on an individual and broader society. Furthermore, there is a growing interest in the utilisation of AI technology to assist in the identification and then recruitment of individuals into clinical trials in Alzheimer’s disease to develop the very interventions referred to already. The ability to predict an individual’s likelihood of progression within a given timeframe provides researchers the ability to recruit participants into clinical trials accurately and effectively. The second study is a major contribution to the data driven approaches to this potentially effective recruitment process.

“

The ability to predict an individual’s likelihood of progression within a given timeframe provides researchers the ability to recruit participants into clinical trials accurately and effectively.” What might be the impact of this story/ study in the scientific community?

AI technology has two components: the algorithm and the data that serve as input. Study 1 and 2 propose novel algorithm frameworks that can be further developed and refined. It was interesting to see how the proposed algorithms performed against the already known algorithms such as Support Vector Machine and Random Forest when applied to the tasks described in particular and the dementia domain in general.

DEMENTIA IN SOCIETY

Study 3 also introduced a novel data acquisition approach, which is also a major contribution to the scientific community. This approach introduces robust and objective assessment of participants, which can feed into AI algorithms in real time at large scale to be deployed for identification in the community through screening with this technology for people at risk of dementia and monitoring progression of brain disease.

algorithms are inadequate (they may be small or not have the ‘right’ data variables measured accurately). For instance the studies reported in the newspaper article have relatively small sample sizes.

Study 1 used only 48 samples of PET scans to develop the deep learning algorithm and Study 2 used only 69 samples of CT and clinical data to develop the trajectory prediction model. One day we will need datasets of several thouWhat are the next steps? sands to develop really accurate models. The more individuals participate in a project of Even though the studies described in the arti- this nature, the more likely the results will be cle have the potential to be employed within applicable to a broad range of individuals. In the dementia research community, more work a small sample the results may not be robust needs to be done before they are ready for enough to produce similar performance on prime time in the clinic or on your smartphone. another dataset. Another reason for the need It is a well-known issue that AI algorithms tend to have further validation of these studies is to suffer from generalisation problems. the variable nature of how we define dementia as well as the different types of brain disease that lead to a range of different ‘dementias’.

“

Even though the studies described in the article have the potential to be employed within the dementia research community, more work needs to be done before they are ready.” Prediction accuracy of the algorithms does not perform as reported when applied to a different dataset. This is particularly true when the data used to develop the

This introduces another level of complexity from a computational modelling perspective and makes results less easily implemented into the clinical practice. For example, there is currently overreliance on cognitive decline as the outcome of interest on dementia, but this could also be due to depression and is also only one way to measure the consequences of brain disease. Would the models that predict decline in memory also predict advancement of brain disease and which is more relevant and at which stage of the illness? Furthermore, as it has been established that brain

Profile

Prof. Craig Ritchie is a Professor of the Psychiatry of Ageing, and director at Edinburgh Dementia Prevention, the University of Edinburgh. He is also a visiting Professor at Imperial College, London. Prof Ritchie leads and the Chief Investigator of numerous dementia research projects and these include the EPAD, PREVENT Dementia Programme, and the Scottish Dementia Informatics Partnership. He has authored several publications in the area of dementia research and currently chairs the Board of the United Kingdom Dementia Platform Programme.

Dr Samuel Danso is a Researcher & Data Scientist at Edinburgh Dementia Prevention, the University of Edinburgh, and a Fellow at EPAD Academy. He holds a PhD in Artificial Intelligence with special research interest in application of AI approaches and technologies to dementia research. Dr Danso plays a key role in several dementia research projects – EPAD, PREVENT Dementia Programme, and the Scottish Dementia Informatics Partnership.

diseases that lead ultimately to dementia start much earlier in life, it is important to validate these algorithms in much younger populations. In the listed studies, older populations (average ages >70 years) were used in developing the algorithms. Planned analysis in fantastic databases/studies where research participants are really well-characterised could be used to validate and improve upon these algorithms through their development in substantially larger numbers of people at a much earlier stage of brain disease. Some examples of such databases/studies would be the PREVENT Dementia (www.preventdementia.co.uk) and ALFA Project as well as the European Prevention of Alzheimer’s Dementia (EPAD) (www.ep-ad.org) programme. AI will yield amazing results and the headline does herald the coming together of a computational approach and better and larger datasets giving the individual and the clinician the most important factor in making the right decision for themselves and for their patients: knowledge.

“

AI will yield amazing results and the headline does herald the coming together of a computational approach and better and larger datasets.”

The University of Edinburgh’s Centre for Dementia Prevention combines research in science, medicine and social sciences to lead global efforts in preventing dementia. www.centrefordementiaprevention. com

Dementia in Europe

SPOTLIGHT ON 28AEC

Alzheimer Europe Conference held in Barcelona under the banner “Making dementia a European priority”

España (FAE), Santiago Marimón Suñol, who is living with dementia, and Gemma Tarafa, Commissioner for Health and Functional Diversity for the City of Barcelona, also addressed the delegates. Putting dementia in the spotlight in Spain

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 in Barcelona. She emphasised the importance European priority” was held under the Honorary Patronage of 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 which has been one of the focal points for her from 46 countries participated. organisation in recent years. She implored representatives of the Spanish authorities in The 28 th 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 posto 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” profeshighlighted that there is more participasional 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 notsonal 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

38 Dementia in Europe

SPOTLIGHT ON 28AEC

Europe with regards the length of time from diagnosis to end-of-life. In the immediate future, FAE will be focusing on improving early diagnosis rates, as well as helping patients and carers access new technologies and training, helping forge better links between professionals and families and putting more pressure on the relevant authorities to help implement everyday solutions.

art installation to create a dialogue around dementia – timed to coincide with the Alzheimer Europe Conference. Collaborating to overcome the challenges presented by dementia prevention

In his keynote presentation “Will we be able 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. egates about two initiatives he and his fellow AFAD members are currently involved in: The Dr Molinuevo commented: “Although the first involves giving input on and support- advent of biomarkers does allow us to idening the upcoming national dementia plan for tify AD in vivo through biomarkers that are Spain, and the second is a project trying to proxies of pathology, and improved trials establish a network of cognitive stimulation design is allowing us to test new pathways 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 President of the Generalitat de Catalunya, together to find a solution”. who is himself living with dementia. The Pasqual Maragall Foundation in Barcelona Following Dr Molinuevo’s lecture, delefunds research on Alzheimer’s disease and gates enjoyed a lively welcome reception in 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 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

José Luis Molinuevo delivers the keynote lecture

“

While the advent of biomarkers allows us to identify AD in vivo and improvements in trial designs mean we can test new pathways more efficiently, defeating AD remains a challenge that requires a huge collaborative effort.” José Luis Molinuevo

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 threepronged 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

Alzheimer Europe Conference plenaries focus on policy, human rights, care and research The 4 plenary sessions at the 28th Alzheimer Europe Conference “Making dementia a European priority” took place on 30–31 October 2018 and focused on dementia as a policy priority, the importance of a human rights-based approach to dementia and disability, dementia as a care priority and dementia as a research priority.

from 22–40. Its priorities are to facilitate professional careers in dementia by offering training and mentoring, to facilitate the uptake of new technologies to improve quality of life of persons with dementia and their families and to increase awareness and fight stigma around dementia.

Carmen Orte, Director General of IMSERSO (Instituto de Mayores y Servicios Sociales) presented “Dementia as a health and social priority in Spain”. Ms Orte highlighted the importance of putting our focus where it is most needed, where dementia and specifically Alzheimer’s disease is concerned: on 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 particrigo (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

40 Dementia in Europe

SPOTLIGHT ON 28AEC

stop to exclusion and stigmatising behaviour towards people with dementia. Awareness and consciousness-raising, integrated sociosanitary attention, valuing caregivers more highly and more research, innovation and knowledge-sharing will help achieve these goals.

2017–2025, adopted by 194 Member States in 2017 at the World Health Assembly. “The Global Action Plan represents a truly global commitment to improve the lives of people with dementia, their carers and families”, Mr Chisholm affirmed. It covers 7 action areas, each with identified targets and activities for Member States, Partners and the WHO SecreGeoff Huggins, Director of Health and Social tariat. For each of the action areas, the WHO Care Integration at the Scottish Government has developed specific tools and guidance took the floor next, delivering a presentation materials to enable countries to convert this on the EU Joint Action (JA) ‘Act on Dementia’, commitment into action, including a policy which began in March 2016. It aims to pro- guidance manual, a dementia-friendly toolkit, mote collaborative actions among Member iSupport (an e-health solution for caregivStates to improve the lives of people with ers of people with dementia), and the Global dementia and their carers. The first phase Dementia Observatory. Dementia risk-reducof work – to conduct evidence reviews and tion guidelines are also now being elaborated. reports on diagnosis and post diagnostic Equipped with these tools, the WHO is now support, crisis and care coordination, qual- working with a range of national and interity of residential care, and dementia friendly national partners to simultaneously address communities – is completed and practical several key dimensions of the public health testing is now taking place with frontline challenge of dementia in Europe and beyond. services, to gather evidence in order to learn about the implementation challenges in pilot We need to put a stop sites across Europe, including Bulgaria, France, to stigmatising behavGreece, Italy, the Netherlands, Norway, Poland, Romania and the United Kingdom. iour towards people with Examples of testing include tackling stigma around dementia diagnosis by bridging the gap between primary care practitioners and hospital specialists; testing a case management approach to post-diagnostic support in primary care innovation sites; testing the implementation of training programmes to support staff in identifying and managing the symptoms of stress and distress; trialling an e-learning programme in dementia palliative care for healthcare staff working in nursing homes in Norway and testing different approaches to building ‘dementia-friendly’ communities. The JA plans to hold its final conference in The Hague in October 2019, coinciding with next year’s Alzheimer Europe (AE) conference, where it plans to share the learning about challenges and opportunities in implementing best practices throughout Europe. Dr Dan Chisholm, Programme Manager for Mental Health at the World Health Organisation (WHO) Regional Office for Europe (Copenhagen, Denmark) spoke next, about prioritising dementia internationally and specifically about the WHO’s Global Action Plan on the public response to dementia

“

disease progression modelling and detailed health economic evaluation; and has made a strong case for the collection of new data that is intentionally designed to enable early detection and disease progression modelling. Dementia as a human rights priority The second plenary session focused on “Dementia as a human rights priority” and was chaired by Charles Scerri (Malta). The session opened with the second “Meet the researchers of tomorrow” session, delivered by Stina Saunders, a fellow at the IMI EPAD project (European Prevention of Alzheimer’s Dementia) and a doctoral candidate at the University of Edinburgh. Her talk focused on engaging research participants as collaborators working towards a common goal with the study team. The EPAD study has set up the EPAD Participant Panel in order to learn from the experience of research participants, provide participants an on-going active voice in the project and incorporate participants’ input.

Helen Rochford-Brennan, Chairperson of the European Working Group of People with dementia. Awareness and con- Dementia (EWGPWD), took the floor next, to sciousness-raising, valuing talk about promoting a human rights-based caregivers more highly, and approach to dementia through the active involvement of people with dementia. This more research, innovation and is a cause very close to her heart, as a person knowledge-sharing will help living with dementia who advocates for the rights of people with dementia, and having achieve this.” been a Rights and Social Justice Campaigner all her life. “Many people living with demenCarmen Orte tia are denied their human rights from the time of diagnosis. As they live with the disProf. John Gallacher, Project Co-ordinator ease they navigate systems and structures of the IMI ROADMAP project (Real world which are not person centred and rights Outcomes across the Alzheimer’s Disease based. As a result, either deliberately or by spectrum for better care: Multi-modal data omission their human rights are denied”, said Access Platform), closed this engaging first Ms Rochford-Brennan. Human rights violaplenary session. He shared the work done tions include the lack of statutory rights to by the project so far: The ROADMAP project homecare the inappropriate prescribing of has demonstrated the ability of academic, Psychotropic medicines and the inability of industry, patients and regulatory partners persons living with dementia to be active parto work together on a highly complex, widely ticipants in their community. People living distributed, and tightly time-constrained pro- with dementia must be actively involved in ject; established a broad-based and evidence all aspects of the disease. based consensus on the priority outcomes for dementia treatment pathways; developed a From research to healthcare, legislation to comprehensive database of available Euro- awareness, the lived experience must be valpean real world data; demonstrated that ued and have the power to influence. Good 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 tokenistic approach and a value placed on experts by experience. The members of the EWGPWD, are strong advocates of PPI (patient and public involvement) and believe co-creation and robust collaboration are the only way to ensure that the human rights of persons living with dementia are a research priority. “Human rights can be a theoretical, abstract concept that for some people living with dementia seems far removed from their daily reality. Quality engagement with just such people will lead to the human rights of many more people living with dementia being met”, she concluded.

whether the existence of specific legal instruments on the rights of older persons and their protection is necessary. Reasons for not having such instruments include the fact that people have rights because they are human beings regardless of age, gender, language, sexual orientation, capacity, abilities, etc. and instruments and specific norms for the protection of the older people already exist (e.g. International Human Rights Conventions of the UN, Charter of Fundamental Rights of the EU of 2010, Constitution of 1978, Civil Code, Penal Code). Nevertheless, the existence of sectoral legal norms at international, national and regional level (in the case of Spain) aimed at the protection of groups that are particuDr Fernando Vicente, advisor to the General larly vulnerable, is a reality of the political Directorate of the Institute of Older People action that is appropriate to the challenges and Social Services (IMSERSO) of the Ministry posed by the ageing of the population. This of Health, Social Services and Equality, was up constitutes a great challenge of governance next. Addressing the room in Spanish (simul- in Spain and hinders the adoption of meastaneously translated into English), Dr Vicente ures to mobilise action, he concluded. spoke about Human Rights in Spanish health and social legislation: In the discussion about Dr Dianne Gove, Director for Projects at ageing, there has been a heated debate at Alzheimer Europe, gave delegates an overnational and international level about view of the organisation’s work on dementia

and disability. In 2017, Alzheimer Europe set up a working group of experts on dementia, disability, ethics, mental health legislation, anthropology, policy and psychology, which worked closely with members of the EWGPWD. Together, they explored possible implications for ethics, policy and practice of recognising dementia as a disability. Thinking about how people with dementia might experience and feel about disability, it is important to emphasise that disability, like dementia, is not a person’s sole identity. People have multiple, intersecting and overlapping identities. Dianne stated that whilst overall, there may be ethical, practice and policy benefits of viewing dementia as a disability, none of these potential benefits should require a particular person with dementia to identify with disability against his/her wishes, and emphasised the need to recognise and respect difference and individual choice. Dr Karen Watchman, Senior Lecturer in the Faculty of Health Sciences and Sport at the University of Stirling, closed the second plenary 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 delegates that, whilst countries across Europe are at different stages in their support of people with an intellectual disability, longer life expectancy of people with Down syndrome means a rise in the incidence of early onset dementia, with at least 1 in 3 people with Down syndrome being diagnosed in their 50s or 60s. Older families are facing the multiple jeopardy of caring for their relative with an intellectual disability who is ageing, and has a diagnosis of dementia. This is often at a time when they are facing their own ill health, she pointed out. Increased knowledge and awareness among support staff in health and social care sectors/NGOs can lead to greater understanding of the impact of individualised non-drug supports for people with an intellectual disability and dementia, including the potential for a reduction in medication. Improvement is also needed in the area of diagnosis and post-diagnostic support, for residents with intellectual disability who are diagnosed with dementia. A longer-term approach is needed to support this ageing population, which takes into account the perspective of the person

with intellectual disabilities. “By valuing the perspectives of people with an intellectual disability and dementia, we reinforce the importance of ensuring that best-practice for people with dementia also applies to people with an intellectual disability. This includes a timely diagnosis which is shared appropriately, individualised post-diagnostic support, and the need to meaningfully include the perspective of persons with intellectual disability in decisions that affect them”, Dr Watchman concluded

“

We need to address traditional forms of outcome assessment, which are often based in a deficit model rather than one which promotes living well with dementia, i.e. what can no longer be achieved rather than what can.” Gail Mountain

Dementia as a care priority

parts of the ageing population, around thinking about decline and dementia. This cultural The third plenary session “Dementia as a care anxiety also influences the development of priority” was chaired by Myrra Vernooij-Das- assistive technologies promoting self-managesen (Netherlands) and opened with the third ment and activity in dementia, which results “Meet the researchers of tomorrow” session, in the potential cognitive decline associated with Sébastien Libert, a PhD student based with the progression of dementia not being at University College London, and part of the primarily addressed in the design of many of Interdisciplinary Network on Dementia Using these technologies. It is therefore important Current Technologies (INDUCT). He argued that, to consider how the progression of dementia with the increasing promotion of an active and affects people’s experiences with such techproductive later life in western societies, there nologies, often developed to help with early 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 Dementia Research and Director of the Centre for Applied Dementia Research at the University of Bradford used her presentation to urge delegates to work together to reconsider the appropriateness of commonly-used outcome measures in dementia practice and research. The issues she stated as needing to be addressed are: Traditional forms of outcome assessment can be based in a deficit model rather than one which promotes living well with dementia – what can no longer be achieved rather than what can; The constructs being measured can contribute towards the deficit model – what about ability to self-manage and retain resilience rather than ADL?; The majority of traditional forms of assessment require recall; a challenge for those with cognitive deficit. Prof. Mountain suggested a radical rethink regarding what should be asked and how, including the role of new technology in creating solutions to this problem.

are associated with an array of deleterious effects, including an increase in mortality. Various methods have been tried, to reduce the use of antipsychotics in nursing homes, the most successful of which, overall, seems to be the implementation of sustained training programmes, leading to a change in the culture in the facilities themselves.

“

Maintaining relationships and making connections are of paramount importance in ensuring quality-of-life for people with dementia, according to people living with the condition. This is why relationships are such a fundamental component in person-centred care.”

Expanding findings from other studies on clinical utility of amyloid PET imaging (ABIDE and IDEAS), the AMYPAD Diagnostic Study is looking to understand for whom and when this technique is valuable, and whether its optimal use is cost-effective in clinical routine. In combination with EPAD, the AMYPAD Prognostic Study is using amyloid PET imaging to improve the determination of an individual’s risk of developing dementia, and will provide crucial technical insights into how current and future secondary prevention trials can improve participant selection and measurement of treatment effect using amyloid PET.

Next, Maria Isabel Gonzalez Ingelmo, Managing Director of the National Reference Centre for Alzheimer’s and Dementia Care of the Institute for Older Persons and Social Services (IMSERSO), under the auspices of the Spanish Government, informed delegates that her organisation is committed to promoting research into non-pharmacoMartina Roes logical therapies, through networking and Marjolein de Vugt, professor of psychosotransferring 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 purner 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 emphamay 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 diagnothe 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 perThe 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. Euroof 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, stakepeople 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 healthof 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 people affected”, concluded Dr Boada.

Prof. Amouyel pointed out that almost half of the heritability of AD remains to be identified. Genetics, he concluded, will play a Next up to the podium was Philippe Amouyel, pivotal role in general prevention, identiProfessor of Epidemiology and Public Health fication of disruptive treatments and care. 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-sympdisease (AD): AD occurrence, as with many tomatic and early diagnoses of dementia. chronic diseases, results from the interac- This deserves careful discussion, particularly tion between environmental factors and an linked to ethical considerations. individual susceptibility. In less than 1% of AD cases, mostly early onset forms, genom- The final speaker at plenary 4 was Professor ics has been able to identify several causing Clive Ballard, who is part of a growing team of genes, and set the basis of the amyloid cas- dementia researchers at the University of Execade model. In the sporadic forms of AD, the ter Medical School. His presentation looked most common, genomics research, based on at pharmacological options for the treatment an agnostic screening of the genome, has of behavioural symptoms of dementia and allowed scientists to identify new pathophys- specifically at the recent international Delphi iological pathways, improving understanding consensus paper. The paper brings together of the molecular processes involved in AD. leaders in the field to update guidance based on latest evidence. It advises that drug treatOver the past 10 years, the exponential ments should only be used as a last resort for progress made in the deciphering of the the treatment of agitation, and highlights genome have meant that more than 30 the need for more work focusing on speregions of the genome, associated with an cific non-pharmacological interventions for increased or decreased risk of AD in these psychosis most universally experienced by late-onset forms, have been identified. Still, people with dementia. Non-drug approaches

include identifying underlying causes, training caregivers, making environmental adaptations, implementing person-centred care, and devising a programme of tailored activities. There is an emergence of promising research, focusing on new pharmacological treatments, including analgesics, citalopram, pimavanserin and dextromethorphan; and we are likely to see a significant advance in the treatment of Behavioural and Psychological Symptoms in people with Dementia over the next 5 years. Prof. Ballard summarised the study’s results, saying: “We know that antipsychotics and sleeping tablets can all be highly damaging to people with dementia. The headline here is that sedating elderly, frail people with dementia is likely to cause them harm and should be avoided if at all possible. Our paper brings together the latest evidence in this field and advises professionals to try non-drug approaches where possible and highlights emerging pharmacological therapies which may provide safer and more effective approaches to treatment in the future.” Dementia in Europe 45

SPOTLIGHT ON 28AEC

Snapshots of #28AEC

Cheles Cantabrana, CEAFA, addresses delegates during the Opening Ceremony

A sunny backdrop to another exciting and packed conference

Noemí Martínez speaks on behlaf of Fundación Alzheimer España, at the Opening Ceremony

Helen Rochford-Brennan stresses the importance of a rights-based approach to dementia

Sébastien Libert presents one of the meet the researchers of tomorrow sessions

José Luis Molinuevo delivers the keynote lecture

Chris Roberts shares his lived experience of dementia during the EWGPWD Special Symposium

Spanish sessions were simultaneously translated to English and vice-versa

Networking between sessions helps forge and reinforce vital international collaboration

EWGPWD member Idalina Aguiar (left) with her daughter and carer, Nélida (right)

John Gallacher shares the success of the ROADMAP project during its two years

Some of the 175 posters presented at 28AEC

46 Dementia in Europe

SPOTLIGHT ON 28AEC

European Working Group of People with Dementia begins fourth term of office The working group began its fourth two-year term of office at a meeting held on 28 October 2018 in Barcelona, prior to the 28th Alzheimer Europe Conference. Prior to the conference, members of the European Working Group of People with Dementia (EWGPWD) met to prepare for their involvement in the programme, including the Special Symposium “I have dementia and life goes on”, which took place on 30 October 2018. The members The EWGPWD for 2018–2020 is composed of the following 13 members, including four new members, welcomed by the group at this pre-conference meeting: y Helen Rochford-Brennan, Ireland (Chairperson) y Chris Roberts, UK – England; NI and Wales (Vice-Chairperson) y Idalina Aguiar, Portugal y Stefan Eriksson, Sweden (new) y Tomaž Grižnič, Slovenia y Amela Hajrič, Bosnia & Herzegovina y Carol Hargreaves, UK – Scotland y Bernd Heise, Germany (new) y Miha Kastelic, Czech Republic (new)

y y y y

Petri Lampinen, Finland Thomas Maurer, Switzerland Angela Pototschnigg, Austria (new) Geert Van Laer, Belgium.

Carers and supporters of the group’s members joined them on the stage and at the end of the symposium, they made the statement: “Many voices together make our voice stronger”. Departing members Former EWGPWD members Nina Baláčková (Czech Republic) and Helga Rohra (Germany) also attended the pre-conference meeting and participated in the symposium but have now left the group. Both were founding members of the EWGPWD, having joined in October 2012. Ms Baláčková was also Vice-Chairperson in 2013–2014 and Ms Rohra was the group’s first Chairperson (2012–2014, 2014–2016).

Alzheimer Europe and the EWGPWD wish to thank both of them for their important and Symposium “I have dementia and life goes on” positive contributions, as well as thanking their friends and family members, for their One of the highlights of the conference was support. a symposium organised by the group and, chaired by Helen Rochford-Brennan and moderated by Chris Roberts.

The entire group participated and each member shared a few words about themselves and their lived experience. Finnish member Petri Lampinen then gave a speech about his experience of receiving a diagnosis of frontotemporal dementia, the impact it had on him and his family and his approach to living life to the fullest. Chris Roberts translated his words to English, for the audience. As every year, the EWGPWD Symposium was incredibly popular and there was lively audience participation, during the closing Q&A session.

The European Working Group of People with Dementia was set up by Alzheimer Europe in 2012. It is composed entirely of people with dementia, nominated by their national Alzheimer associations. They work to ensure that the activities of Alzheimer Europe reflect the priorities and views of people with dementia.

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

Dementia in Europe

SPOTLIGHT ON 28AEC

Congratulations to the winners of the poster awards! The Alzheimer Europe Foundation is pleased to present the winners of the poster competition, as voted by delegates at 28AEC.

of intervention. The team responsible for this poster argues, however, that the impact of motivational support and emotion requires more investigation in the context of serious games and dementia. Their poster presents the first results of the European project PLAYTIME and looks at future trajectories in the field:

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 balto 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 imaga newly developed serious game compoination 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 innovapositive approach for people with dementia” creativity and abilities in the here and now. tive components. RUNNER-UP: Nélida Aguiar (Portugal), “Per- Sharing the winnings petuating memories” The winners have all made the generous deciNélida Aguiar’s mother, Idalina Aguiar has sion to donate their prize money or use it for Alzheimer’s dementia. Her poster looks at charitable actions: the importance of living well with dementia, which she says can be done by “maintaining yy Luisa Bartorelli has donated hers to the bonds that unite us with the past, while Alzheimer Uniti Roma where it will be providing the best comfort in the present and used to help people with dementia and accepting the uncertainty of the future.” their families in Italy. yy Bie Hinnekint will use hers to organise furFor Ms Aguiar, living well with dementia is: ther CasAperta music salons. 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 perdementia. 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 evaluatia 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), “PLAYCasAperta 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 conMains 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 This poster introduces Villaggio Emanuele (named after its founder), a new “Alzheimer village” in Rome. It aims to offer residents with dementia an environment that is as close to “normal life” as possible, whilst ensuring their safety and wellbeing. The Village, with its streets and piazzas, is a structure where residents can move around independently in “spazi di liberta”. It is open to the outside world and the poster authors emphasise the importance of involving neighbours and the local community, to contribute to the concept of a dementia friendly community.

48 Dementia in Europe

SPOTLIGHT ON 28AEC

P04.16

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

VEERLE BAERT, PHD, elena de ru, MSc & bie hinnekint, msc 1

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 jeanine, participant from start In CASAPERTA duo’s of people with dementia and their carers meet monthly for an artistic Joy, attention, afternoon in appreciation is a communitywhat we feel center cafe, where other visitors are At home, I make welcome to join art with my and have a drink. curlers

         

  Cosmopolitan

Traditional

Urban

Every time my grandchildren are very curious what granddad and I did at casAperta

The present is the place to be for me and my sister

People with dementia are a wonderful audience for a musician

I love to see the joy of the elderly. You never guess what I’m thinking

living well with dementia



   

we are one of the 25 duo’s enjoying casaperta.

can i come next time???

     

Thanks to enthusiastic volunteering from the beginning, CASAPERTA attracted many duo’s!



Me and my wife are so proud hosting the Music and arts café in our community center



My music companion is 92 and has dementia, here he can improvise with his sax

this, i will never forget

I live in a new way with my wife now.

  

       



  



    

CASAPERTA gave me an understanding of my granny, living in our home since she’s having dementia

wOw!

As an art-student, people with dementia inspire me fully!

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 is a whole new experience 1st price World Alzheimer’s day 2018 Deinze/Belgium

WINNER: Luisa Bartorelli

a-la

la-l

Our hearts felt connected by the music and made us move in synchrony, it was such a wonderful feeling again...

casapertagent.blogspot.com

 

since Casaperta i make art at home

end the

Arts in Society Award CERA-Foundation

Casaperta PRODUCTIONS

WINNER: Bie Hinnekint

Living with dementia is INTEGRATION!!!

Perpetuating Memories

AGUIAR, Nélida and AGUIAR, Idalina

Retrocede

Alzheimer Portugal and EWGPWD

Living with dementia and / or caring for someone with dementia requires an enormous capacity for adaptation, and it is fundamental to unite and strengthen family ties. Maintaining all the bonds that can unite it to its Past, providing the best comfort in the Present by the uncertainty of its Future.

PLAYTIME: Motivation, Emotion andAssessment Assessment in PLAYTIME: Motivation, Emotion and PLAYTIME: Motivation, Emotion and Assessment PLAYTIME: Motivation, Emotion and Assessment in Serious Gamesfor for Dementia Intervention Serious Games Dementia Intervention in Serious Games for Dementia Intervention 1

We have been able to demonstrate, that is possible to live with dementia. How? Respecting the essence of the individual with dementia, stimulating and integration it in society, with this new condition.

Evolution of sucess/ integration

Living and /or/caring for a person with dementia is fundamental that the balance that allows us to slow the progression of the disease is to integrate the person with dementia.

Ca Fe Gr empowered pacient envolvement of family beeig active in society

Fundamental Rule: respect the person with limitation!

Why limit the people with dementia? The diagnosis must be accurate and early.

CONTACT

6 4, 4,

RESEARCH Forschungsgesellschaft CONTACTmbH

CONTACT Communication Technologies Forschungsgesellschaft mbH JOANNEUM RESEARCH DrRESEARCH Lucas Paletta JOANNEUM DIGITAL Forschungsgesellschaft mbH Forschungsgesellschaft mbH 17 Steyrergasse Institute8010 for Graz CONTACT Information andDIGITAL Phone +43 316 876-17 69 DIGITAL Communication office@aal-playtime.eu Technologies Institute Institute for for JOANNEUM RESEARCH Information lucas.paletta@joanneum.at Information and and Forschungsgesellschaft mbH /digital Dr. www.joanneum.at Lucas Paletta Communication Technologies Communication Technologies DIGITAL Dr. Lucas Paletta Institute for

Steyrergasse 2 Mental Dr. Lucas Paletta Health Care 17 Center 8010 Graz Eindhoven, The Netherlands

Information and 17 Steyrergasse Steyrergasse 17 Communication Technologies Phone +43 316 876-17 69 8010 3 Tilburg 8010University Graz Graz The Netherlands

Dr. Lucas Paletta office@aal-playtime.eu

+43876-17 316 876-17 4 Sozialverein PhonePhone +43 Deutschlandsberg 316 69

Austria

Steyrergasse 17 lucas.paletta@joanneum.at office@aal-playtime.eu office@aal-playtime.eu 8010 Graz www.joanneum.at/digital 5 FameL GmbH lucas.paletta@joanneum.at lucas.paletta@joanneum.at Seiersberg, 1JOANNEUM Phone +43 316 876-17 Austria 69 RESEARCH www.joanneum.at/digital www.joanneum.at/digital Forschungsgesellschaft mbH, 6 MindBytes office@aal-playtime.eu 1JOANNEUM Graz, Austria RESEARCH 1JOANNEUM RESEARCH Ghent, Belgium Forschungsgesellschaft mbH, 2Mental Health Care Center Forschungsgesellschaft mbH, lucas.paletta@joanneum.at Graz, Austria 7Graz, Eindhoven, The Netherlands Ghent Austria University www.joanneum.at/digital 2Mental Health Care Belgium Center 2Mental Health Care Center 3Tilburg 1JOANNEUM University, Eindhoven, The Netherlands RESEARCH Eindhoven,The TheNetherlands Netherlands 8 McRoberts Forschungsgesellschaft mbH,BV 3Tilburg The Hague, The Austria Netherlands University, Graz, 3Tilburg 4Sozialverein University, The Netherlands 2 The Netherlands Deutschlandsberg, Austria Mental Health Care Center 4Sozialverein Eindhoven, The4 Netherlands Sozialverein 5FameL GmbH, Austria Deutschlandsberg, Deutschlandsberg, Austria 3Tilburg University, Seiersberg, Austria

5FameL GmbH, The Netherlands 5FameL GmbH, , Ghent, Belgium Seiersberg, Austria 4Sozialverein Seiersberg, Austria

5FameL GmbH, 7Ghent University Belgium 7Ghent University Belgium

Seiersberg, Austria

6MindBytes 7Ghent

Emotion, Motivation and Dementia

PLAYTIME suite of suite serious games games for multimodal intervention PLAYTIME of serious for multimodal intervention PLAYTIME suite serious gamesforformultimodal multimodalintervention intervention PLAYTIME suite of of serious games PLAYTIME suite of serious games for multimodal intervention

 Multimodal training model following (Reisberg et al., 2002). Explicit memory  training Executive functions Alzheimer functional impairment associated with PLAYTIME  amicasa l  in social setting. Executive functions playful training serious game modules.SERES  Functional and impairment amicasa MIRA MOVE Comportment  Comportment  Attention Activities of daily living (ADL)   Activities of daily living (ADL) amicasa training Mood affect  associated withPLAYTIME Alzheimer functional impairment amicasa in training social setting. AlzheimerLanguage functional impairment with PLAYTIME playful training and serious game modules.  associated Alzheimer functional impairment associated with PLAYTIME playful training and amicasa training in in social setting. playfulVisual training and serious game modules. perception serious game social setting.  modules.  Explicit memory  Executive functions   Comportment  Activities of daily living (ADL)  amicasa training Alzheimer functional impairment associated with PLAYTIME in social setting. playful training and serious game modules.

, Ghent, Belgium

Psychosocial scenario (top) and evaluation (bottom).

Web camera based eye tracking

MIRA: narrative for executive function assessment

• Mobile

Instrumental

Review

Use of A-B-C (Antecendent-Behaviour-Consequence) model to assist in problem solving.

Wearable sensor for movement monitoring

• MOVE:

sensorimotor Wearable analytics of daily sensor for movement monitoring

Framework of’ concepts, Attention (MIRA): serious games, gaze activities using a wearable movement sensor aanalysis Mobile Instrumental Review oftracking Atten- (accelerometer, Web camera based eye Wearablesensorimotor sensor for movement monitoringof domains and subjective & control. a MOVE: analytics daily activigyroscope, magnetometer, MIRA: narrative for executive function assessment measures of McRoberts. Webgoal: camera based eye tracking of Wearable sensor for movement monitoring • Long-term assessment bluetooth). tion (MIRA): serious games, gaze ana- of temperature, MIRA: narrative for executive function assessment • Mobile Instrumental Review • MOVE: analytics of daily tiessensorimotor using a wearable movement sensor (accecognitive control & daily mental state.games, affective attention affective • The short physical performance batterymovement (SPPB) Framework of’ concepts, • Mobile Instrumental Review of gaze calibration menu (MIRA): serious • MOVE: sensorimotor analytics of dailysensor activities using a wearable slider games slider & Attention control. mean SPPB (sub) scores • Eyelysis tracking enables classification 8 lerometer, gyroscope, magnetometer, tempedomains and subjective is aactivities group(accelerometer, ofusing measures that combines the Framework of’ concepts, Attention (MIRA): serious games, gaze analysis & control. a wearable movement sensor 6 gyroscope, magnetometer, of Alzheimer status (Crawford 2012; of McRoberts. domainsmeasures and subjective of temperature, the rature, gait speed, chair magnetometer, stand and • Long-term goal: assessment analysis & control. aEizenman Long-term goal: assessment of cogni- of results bluetooth). (accelerometer, gyroscope, bluetooth). Framework of’ concepts, 4 et al., 2016) via anti-saccade measures of McRoberts. domains and cognitive control & daily mentalofstate. balance tests (Guralnik et al., 2000). goal: assessment affective attention affective• Long-term calibration menuassessment MIRA: narrative for executive function slider games affective attention affective menu slider games slider

University Belgium

calibration

MIRA: narrative for executive function assessment

• The short physical performance battery (SPPB) temperature, bluetooth). 2

tive control & daily mental state. visual comparison task. mean SPPB (sub) scores • Long-term predictive tool for battery dementia, measures of • Eye tracking classification aaphysical The short physical performance (SPPB) subjective cognitive control & enables daily mental state. isgoal: group of measures that combines the • The short performance (SPPB) battery • WebEye camera tracking: accuracy ca. McRoberts. mean SPPB (sub) scores of risk of for mortality, nursing homestand Web camera based status eye tracking Wearable for movement monitoring of eye Alzheimer (Crawford 2012; gradient tracking enables classification results of the gait speed, chair and the is a group combines a1,3•Eye tracking enables classification issensor ameasures group of that measures thatthe combines cm (vs. 1 cm with Tobii EyeX) Results of SPPB test in first field trial (AT, NE) admission,balance Eizenman et al.,(Crawford 2016) via anti-saccade of Alzheimer status 2012; al., 2000). results and of disability. thetests gait(Guralnik speed, et chair stand and • of Mobile Instrumental Review 2012; of • MOVE: sensorimotor analytics of daily stand and Alzheimer status (Crawford of et the speed, test,etvisual comparison task. Eizenman al., 2016) via anti-saccade • Long-term goal: predictive tool forchair dementia,Framework of’ concepts, balance testsresults (Guralnik al.,gait 2000). Attention (MIRA): serious games, gaze using a wearable movement sensor • Webet camera eyetask. tracking: accuracy ca. •activities test, visual comparison gradient ofpredictive risktests for mortality, nursing homedomains and subjective Long-term goal: tool for dementia, Eizenman al., 2016) via anti-sacbalance (Guralnik et al., 2000). analysis & control. (accelerometer, gyroscope, magnetometer, 1,3 cmeye (vs. tracking: 1 cm withaccuracy Tobii EyeX) of SPPB test in first field trial (AT, NE) • Web camera ca. admission, measures ofResults McRoberts. gradient of risk and for disability. mortality, nursing home • cade Long-term goal: comparison assessmenttask. of temperature, bluetooth). test, 1,3 cm (vs. visual 1 cm with Tobii EyeX) Results of SPPB test in first field trial (AT, NE) admission, disability. goal: predictive tool for dementia, a and Long-term

slidertest,

Sway 1/3 8

Sway6 2/3

4 2

Acknowledgements

ESQUERDA, Bloco de. Criação do estatuto do Cuidadore Informail e reforça asmedidas de apoio a pessoa dependente: documento enquadrador. Pr0jecto de lei nº 801/XIII/3ª. Lisboa. Março 2018 FORBES Blake. Exercise programs for people with dementia: The Cochrane database of systematic reviews. Abril 2015 LOPES, Manuel. Medidas de Intervenção Junto dos Cuidadores Informais: documento enquadrador. Prespectiva nacional e internacional. Lisboa. Setembro 2017 SATOW, Roberta. Doing the Right Thibg.New York. Junho 2007

The research leading to these results has received funding from the project Acknowledgements PLAYTIME of the AAL Programme of the European Union, by the Austrian BMVIT/ The research leading toFFG these (No.results 857334). Acknowledgements has received funding from the project Acknowledgements PLAYTIME of the AAL Programme of The research to these results the European Union, byleading the Austrian The research leadingfunding to these results has received from the project BMVIT/FFG (No. 857334). has received funding the Programme project PLAYTIME of from the AAL of the of European by theofAustrian PLAYTIME the AAL Union, Programme BMVIT/FFG (No. 857334). the European Union, by the Austrian Acknowledgements BMVIT/FFG (No. 857334). The research leading to these results has received funding from the project PLAYTIME of the AAL Programme of the European Union, by the Austrian BMVIT/FFG (No. 857334).

Sway 3/3

Sway

Gait

Chair Stand SPPB Total

2 0

mean SPPB (sub) scores

Social Innovation Strategy SocialInnovation InnovationStrategy Strategy Social 0

Sway 1/3

Sway8 2/3

Sway 2/3

Sway 3/3

6 4

Sway 3/3

Sway

Gait

Chair Stand SPPB Total

2 cognitive control & daily mental state. • The short physical performance battery (SPPB) calibration menu 0 (sub) scores Eye tracking enables classification 8 a • Web camera eye tracking: accuracy Sway 1/3 Sway 2/3 Sway 3/3 Sway Gait Chair Stand SPPB Total is a group ofgradient measures that for combines thenursing of risk mortality, home mean SPPB 6 of Alzheimer status (Crawford 2012; results of the gait speed, chair stand and Results of SPPB test in first field trial (AT, NE) ca. 1,3 cm (vs.•2016) 1 User-centered cmviawith Tobiidesign EyeX)is an iterative admission, and disability. 4 where et the is Eizenman et al., anti-saccade balanceprocess, tests (Guralnik al.,goal 2000). 2 the task. development of usable products, goal: services or systems, test, visual comparison • Long-term predictive tool for dementia, 0 achieved throughca.involvementgradient of potential users a product, • Web camera eye tracking: accuracy Sway 1/3 Sway 2/3 Sway 3/3 Sway Gait Chair Stand SPPB Total of risk for of mortality, nursing home or system in system design (Karat, 1996). 1,3 cm (vs. 1 cm withservice Tobii EyeX) Results of SPPB test in first field trial (AT, NE) admission, and disability. • User-centered design is an iterative process, where the goal is • Social innovation can be defined as “innovative activities and the development usable products,where services or systems, • User-centered design is anofiterative process, the goal is services that are motivated by the goal of meeting a social need achieved through involvement of potential of a product, the development of usable products, services users or systems, and that service are predominantly diffused through organizations or system in system (Karat, 1996). achieved through involvement ofdesign potential users of a product, whose primary purposes are social” etasal.,“innovative 2007). • Social innovation candesign be(Mulgan defined activities and service or system in system (Karat, 1996). • MentalaHealth Carethat Eindhoven & Sozialverein Deutschlandsberg. User-centered is anbyasiterative process, where the need goal is the development of usable products, services or systems, aredesign motivated the goal of meeting a social • Social services innovation can be defined “innovative activities and • First field and trial with N=18 participants (N=9 AT, N=9 NE). Early are predominantly diffused through organizations servicesachieved thatthat aretested motivated by the(2goal of potential meeting ausers social through of ofneed a product, Mental service or system in Eindhoven: system design (Karat, 1996). Health Care Center focus group meeting PLAYTIME version at involvement home weeks) and in group. whose purposes are social” (Mulgan et al., 2007). and that areprimary predominantly diffused through •Evaluation User-centered design is an iterative process, where organizations the goal is at home; usability, feasibility, and a Social innovation can be defined as et “innovative activities and services that are motivated by the goal of meeting a social • Mental Health Careare Eindhoven & appropriateness Sozialverein Deutschlandsberg. whose primary purposes social” (Mulgan al., or 2007). the development of usable products, services systems, acceptability. Second field trial planned for 2019 (N=40). • First field trial with N=18 participants (N=9 through AT, N=9 organizations NE). Early • achieved Mental Health Care Eindhoven & potential Sozialverein Deutschlandsberg. need and that are predominantly diffused whose primary purposes are social” (Mulgan et al., 2007). through involvement of users of a product, Mental Health Care Center Eindhoven: focus group meeting PLAYTIME version tested at home and Early in group. • service First field trial with N=18design participants (N=9(2AT,weeks) N=9 NE). or system in system (Karat, 1996). Evaluation at home; usability, feasibility, appropriateness and a innovation Mental Health CareatEindhoven &weeks) Sozialverein Mental Health Care Center Eindhoven: focus group meeting PLAYTIME version home (2 and inDeutschlandsberg. group. • Social cantested be defined as “innovative activities and Social innovation strategy implemented by Mental Sozialverein Deutschlandsberg: acceptability. Second field feasibility, trial planned for 2019 (N=40).and Evaluation home; usability, appropriateness Health Care Center Eindhoven and Tilburg University Alzheimer trainer session services that at are motivated by the goal of meeting a social needNE). Early PLAYTIME version tested at home (2 weeks) and in group. a First field trial with N=18 participants (N=9 AT, N=9 (Bongers, Snaphaan et al., 2018). acceptability. field trial planned 2019 (N=40). and that are Second predominantly diffused for through organizations 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). • Mental Health Care Eindhoven & Sozialverein Deutschlandsberg. • First field trial with N=18 participants (N=9 AT, N=9 NE). Early prm pos 18 235 Social innovation strategy implemented by Mental Health Care Center Mental Health Care Center Eindhoven: meeting PLAYTIME version tested at system homedevelopment. (2 weeks) and in group. Sozialverein Deutschlandsberg: Alzheimer focus trainergroup session User-centered design and 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).

affective slider

attention games

affective slider

Social Innovation Strategy

THE INNOVATION COMPANY THE INNOVATION COMPANY THE INNOVATION COMPANY THE INNOVATION COMPANY

RUNNER-UP: Nélida Aguiar

7 7

Lack of motivation is highly frequent in Morbus Alzheimer and mild a Emotion and motivation have& an amplifying inhibiting effect cognitive impairment (Forstmeier Maercker, 2015; or Nobis & Husain, 2018).on the perfor• mance Emotionofand motivation have an amplifying or inhibiting effect on the human behavior. performance of human behavior. is highly frequent in Morbus Alzheimer and mild of motivation • Lack• ofLack motivation is highlystrategies frequent inshould Morbuscomplement Alzheimer and mild and a• Motivation supporting training cognitive Motivation cognitive supporting training strategies& should complement cognitive impairment (Forstmeier Maercker, 2015;&Nobis & Husain, cognitive impairment (Forstmeier & Maercker, 2015; Nobis Husain, 2018). 2018). and physical training. and motivation have an amplifying or inhibiting effect on the physical • training. Emotion • Emotion and motivation have an amplifying or inhibiting effect on the • The EU project PLAYTIME develops an integrated theratainment solution for performance of human behavior. performance of human behavior. a The EU project PLAYTIME develops an integrated solution for the growing market of care, rehab andtraining decision support. theratainment • Motivation supporting strategies should complement cognitive • Motivation supporting training strategies shouldsupport. complement cognitive growing market of care, rehab and decision • the Training executive functions can have important effects on emotion and physical and physical training.training. regulation and well (Hoorelbeke, Koster et al., 2017). The EUbeing project PLAYTIME develops an2015; integrated for a Training executive functions can have effectstheratainment on emotion regula• The•EU project PLAYTIME develops animportant integrated theratainment solutionsolution for • •Monitoring affect during training is an important step:Alzheimer Affect (i.e.,and uponmild growing market ofrehab care, rehab andMorbus decision support. Lack of the motivation highly frequent in the growing market(Hoorelbeke, ofiscare, and decision support. tion and well being Koster et al., 2015; 2017). errors) signal need forexecutive control implementation (Inzlicht, 2015). Awareness ofon emotion • Training functions can haveNobis important effects impairment (Forstmeier & Maercker, 2015; &effects Husain, • cognitive Training executive functions can and have important on2018). emotion cognitive impairments maywell influence contribute to al., elevated rates regulation and being (Hoorelbeke, Kosterinhibiting et 2015; 2017). Emotion and motivation have affect anis amplifying effect onofthe a •Monitoring affect during training anKoster important step: Affect (i.e., upon regulation and well being et or al., 2015; 2017). negative inofpersons with(Hoorelbeke, dementia. • affect Monitoring affect during training is an important step: Affect (i.e., upon performance human behavior. • Monitoring affect during training is an important step: Affect (i.e., upon errors) signal need for control implementation (Inzlicht, 2015). Awareness Playfulofof training scenario in the frame of emotion oriented care Multimodal component training (cognitive, physical, ; Paletta et al., 2016, 2017 ) errors) signal need for control implementation (Inzlicht, 2015). Awareness © Sozialverein Deutschlandsberg • Motivation supporting training strategies should complement cognitive Multimodal suite component traininggames. (cognitive, physical, ; errors) impairments signal need for may control implementation (Inzlicht, 2015). Awareness of(Finnema, et al., 2005, Paletta et Playful al., 2018). training scenario in the frame of emotion oriented care represented in the PLAYTIME of serious cognitive affect and toelevated elevated rates cognitive impairmentsinfluence may influence affect andcontribute contribute to rates of and physical training. Paletta et al., 2016, 2017 ) represented in the PLAYTIME suite of serious games. (Finnema, et al., 2005, Paletta et al., 2018). cognitive impairments may influence affect and contribute to elevated rates of © JOANNEUM RESEARCH DIGITAL negative affect in persons with affectinPLAYTIME inpersons persons with dementia. •of negative The EU project develops andementia. integrated theratainment solution for negative affect with dementia. Playful training scenario in the frame of emotion oriented care Multimodal component training (cognitive, physical, ; Paletta et al., 2016, 2017 the ) growing market of care, rehab and decision support. © Sozialverein Deutschlandsberg Playful training scenario in the frame of emotion oriented care Multimodal component training (cognitive, physical, ; Paletta et al., 2016, 2017 ) © Sozialverein Deutschlandsberg (Finnema, et al., 2005, Paletta et al., 2018). represented in the PLAYTIME suite of serious games. (Finnema, et al., 2005, Paletta et al., 2018). • Training executive functions can have important effects on emotion represented in the PLAYTIME suite of serious games. © JOANNEUM RESEARCH DIGITAL regulation and well being (Hoorelbeke, Koster et al., 2015; 2017). © JOANNEUM RESEARCH DIGITAL • Monitoring affect during training is an important step: Affect (i.e., upon errors) signal need for control implementation (Inzlicht, 2015). Awareness of cognitive impairments may influence affect and contribute to elevated rates of negative affect in persons with dementia. a Playful valorisation of perception Support informal caregivers and loved onesinmodule through the SERES module Playful valorisation of perception and and • Support a informal caregivers and loved ones through SERES Playful training the scenario the frame of emotion oriented care Multimodal component training (cognitive, physical, ; Paletta et• al., 2016, 2017 ) © Sozialverein Deutschlandsberg logicallogical thinkingthinking • Scenarios for awareness about psychosocial decision making and (Finnema, et al., 2005, Paletta et assessment al., 2018). represented in the PLAYTIME suite of serious games. a Scenarios for awareness about psychosocial decision making and assessment Odor • Multimodal training at home and in • Better quality of life for caregiver & person with dementia © JOANNEUM RESEARCH DIGITAL Motor groups at• care centers in the family caregivers a Multimodal training at home and in and • More harmony Social Playful valorisation of perception a Better quality of life forand caregiver & person dementia • Support informal loved ones through with the SERES module Control • Playful logical perception • Support informalfor caregivers andabout lovedpsychosocial ones through the SERES module • Evaluated invalorisation several field of trials (Paletta et and • People with dementia feel respected thinking • Scenarios awareness decision making and assessment groups at care centers Perception logical thinking • Scenarios for awareness about psychosocial decision making assessment al., 2016, 2017, 2018) gain new insights and better to deal with and challenges Odor a More harmony in the familyequipped • Multimodal training at home and in • Caregivers • Better quality of life forare caregiver & person with dementia Odor • Multimodal training at sessions home and in • Better quality of life for • More thangroups 75 theme training a Evaluated in care several field trials Motor Cognition at centers • More harmony in caregiver the family& person with dementia Social Control a People with dementia feel respected Motor groups at care centers • Personalisation by different degrees of • More harmony in the family Social • Evaluated in several field trials (Paletta et • People with dementia feel respected Control (Paletta al., 2016, 2017,(Paletta 2018)et difficulty • Evaluated inetseveral trials • People with dementia feel insights respected Perception al., 2016, 2017,field 2018) • Caregivers gain gain new and are better equipped to deal withto challenges Multimodal training modelPerception following (Reisberg et al., 2002). a Caregivers new are better deal with challenges al., 2016, 2017, 2018)theme training sessions • Caregivers gain new insights and insights are betterand equipped to dealequipped with challenges • More than l a More than 7575 theme training sessions Cognition • More 75 theme training sessions •than Personalisation by different degrees of Cognition Functional impairment amicasa SERES MIRA MOVE •• Playful valorisation different of perception andof • Support informal caregivers and loved ones through the SERES module Personalisation degrees difficulty by by alogical Personalisation different degrees Attention Multimodal training model following  thinking • Scenarios for awareness about psychosocial decision making and assessment Multimodal training difficulty (Reisberg et al.,model 2002). following (Reisberg et al., 2002). Use of A-B-C (Antecendent-Behaviour-Consequence) Mood affecttraining model following(Reisberg Odor Multimodal et al., 2002). • Multimodal l training at home and in • Better quality lifeand forevaluation caregiver & person with dementia of difficulty Psychosocial scenarioof (top) (bottom). model to assist in problem solving. l Language Functional impairment amicasa SERES MIRA MOVE  Motor groups at care centers • More harmony in the family Social Functional impairment amicasa ControlSERES MIRA MOVE Visual perception Attention  • Evaluated in several field trials (Paletta et • People with dementia feel respected   Attention Perception  A-B-Cchallenges (Antecendent-Behaviour-Consequence) Explicit memory al., 2016, 2017, 2018) • Caregivers gain new insights and are better equipped to Use dealofwith Mood affect   Psychosocial scenario (top) and evaluation (bottom). Use of A-B-C Useassist of A-B-C model to assist in Mood affect model (Antecendent-Behaviour-Consequence) to in (Antecendent-Behaviour-Consequence) problem solving.   • More than 75 theme training sessions Executive functions Psychosocial (top) and evaluation  Psychosocial scenario (top) scenario and evaluation (bottom).(bottom). model to assist in problem solving. problem solving.  CognitionLanguage Language • Personalisation by different degrees of  Comportment   Visual perception  perception difficulty    Activities ofVisual daily living (ADL) Explicit memory

7Ghent Deutschlandsberg, Austria 6MindBytes University, Ghent, Belgium Belgium 6MindBytes , Ghent, Belgium

We specially thanks, to all the team of “Garouta do Calhau” Center

4 4

a Lack of motivation is highly frequent in Morbus Alzheimer and mild cognitive 2 impairment (Forstmeier & Maercker, 2015; Nobis & Husain,32018). •

6MindBytes

We have to reinvent daily, small common acts, so that the memory is preserved as long as possible. Important to continue to make oneself heard and perceived by the will expressed by the person living with dementia, how important their integration and opinion should be valued.

Emotion, Motivation and Dementia Lucas Paletta1, Maria Fellner1, Liselore Snaphaan , Emotion, Inge Bongers Motivation , Josef Steiner4, and Mariella Panagl4, DIGITAL Dementia Emotion, Motivation and Dementia Institute forRESEARCH Information and JOANNEUM Alexander Lerch5, Geert Vander Stichele6, Ernst Koster7 CONTACT 1 JOANNEUM

It is of extreme importance to realize that a diagnosis of dementia is not only the illness of that person, but a disease that will affect the whole family.

in Serious Games for Dementia Intervention PLAYTIME: Motivation,Alexander Emotion and Assessment Lerch , Bongers Geert Vander Stichele , Ernst Koster Lucas Paletta , Maria Fellner , Liselore Snaphaan , Inge , Josef SteinerMariella Mariella Panagl Lucas Paletta , Maria Fellner , Liselore Snaphaan , Inge Bongers , Josef Steiner Panagl , , Alexander Lerch , Geert Vander Stichele , Ernst Koster in Serious Games Alexander for Dementia Intervention Emotion, Motivation Dementia Lerch , Geert Vander Stichele , and Ernst Koster

1, Maria 2, Inge 3,5,Josef 4, Mariella 4, Niessen 8 1, Liselore 2, IngeFellner 4, Mariella Panagl 4, Alexander 6, Ernst Koster 7, Martijn Lucas Paletta Liselore Bongers Steiner Panagl Lucas Paletta 1, Maria Fellner Snaphaan Bongers13,, Josef SteinerSnaphaan Lerch Geert Vander Stichele

Social innovation strategy implemented by Mental Health Care Center Eindhoven and Tilburg University (Bongers, Snaphaan et al., 2018). Social innovation strategy implemented by Mental Health Care Center Eindhoven and Tilburg University (Bongers, Snaphaan et al., 2018).

RUNNER-UP: Lucas Paletta THE INNOVATION COMPANY

Social innovation strategy implemented by Mental Health Care Center Eindhoven and Tilburg University (Bongers, Snaphaan et al., 2018).

User-centered design and system development.

Sozialverein Deutschlandsberg: Alzheimer trainer session

Dementia in Europe

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

Croatia

United Kingdom

143

Greece

Hong Kong

Netherlands

Portugal

Korea

Italy

Czech Republic

Romania

Germany

USA

Brazil

Iceland

Australia

Singapore

Denmark

Hungary

Mexico

Switzerland

Israel

Taiwan

Ireland

Canada

Albania

Norway

Estonia

Argentina

Finland

Cyprus

Chile

France

Malta

Ghana

Belgium

Jersey

Montenegro

Sweden

Poland

Thailand

Luxembourg

Japan

TOTAL

Slovenia

Bosnia and Herzegovina

Academics/Researchers

1 814

227

Alzheimer association staff and volunteers 209

50 Dementia in Europe

Health or social care professionals

194

Students

Industry representatives

People with dementia

Carers

Civil servants

Policy makers

Total:

814

BULGARIA – SOFIA Alzheimer Bulgaria BULGARIA AUSTRIA – SOFIA– VIENNA Alzheimer Austria Alzheimer Bulgaria AUSTRIA – VIENNA BULGARIA Alzheimer - VARNAAustria FoundationBELGIUM Compassion Alzheimer – BRUSSELS BULGARIA Ligue - VARNA Nationale Alzheimer Liga – BRUSSELS FoundationBELGIUM Compassion Alzheimer Nationale Alzheimer Liga CROATIA –Ligue ZAGREB BOSNIA & HERZEGOVINA - SARAJEVO Alzheimer Croatia Udruženje AiR CROATIA –BOSNIA ZAGREB & HERZEGOVINA - SARAJEVO Alzheimer Croatia Udruženje AiR BULGARIA – SOFIA CYPRUS – LARNACA Bulgaria PancyprianAlzheimer Alzheimer Association BULGARIA – SOFIA CYPRUS – LARNACA Alzheimer Bulgaria PancyprianBULGARIA Alzheimer Association - VARNA CZECH REPUBLIC – PRAGUE Foundation Compassion Alzheimer BULGARIASociety - VARNA Czech Alzheimer’s Foundation Compassion Alzheimer CZECH REPUBLIC – PRAGUE CROATIA Society – ZAGREB Czech Alzheimer’s Alzheimer Croatia DENMARKCROATIA – HELLERUP – ZAGREB Alzheimerforeningen Alzheimer Croatia DENMARKCYPRUS – HELLERUP – LARNACA Pancyprian Alzheimer Association Alzheimerforeningen CYPRUS – LARNACA FINLAND – HELSINKI Pancyprian Alzheimer Association MuistiliittoCZECH REPUBLIC – PRAGUE FINLAND –Czech HELSINKI Alzheimer’s Society MuistiliittoCZECH REPUBLIC – PRAGUE Europe Members Czech Alzheimer’s Society FRANCE –Alzheimer PARIS – HELLERUP AssociationDENMARK France Alzheimer Alzheimerforeningen FRANCE – PARIS DENMARK – HELLERUP Alzheimer Europe Members AssociationAlzheimerforeningen France Alzheimer GERMANY FINLAND – BERLIN– HELSINKI Muistiliitto Gesellschaft e.V. Deutsche Alzheimer Alzheimer Europe Members FINLAND GERMANY – BERLIN– HELSINKI Muistiliitto Deutsche Alzheimer Gesellschaft e.V. FRANCE – PARIS GREECE THESSALONIKI HUNGARY GREECE –– THESSALONIKI Association France Alzheimer Panhellenic Federation of FRANCE – PARIS Hungarian Alzheimer Society Panhellenic Federation of Alzheimer’s Alzheimer’s Alzheimer Europe Members Alzheimer Europe Members GREECE –and THESSALONIKI Association France Alzheimer Disease and Related DiseaseAlzheimer Related Disorders Disorders Europe Members – BERLIN PanhellenicGERMANY Federation of Alzheimer’s GREECE – THESSALONIKI Alzheimer Gesellschaft e.V. ICELANDand -Deutsche REYKJAVIK Disease Related Disorders Alzheimer GERMANY – BERLIN Europe Members Panhellenic of Alzheimer’s HUNGARY BUDAPEST The Alzheimer’s Association of Iceland HUNGARY ––Federation BUDAPEST Deutsche Alzheimer Gesellschaft e.V. Social Cluster Cluster Association Disease andGREECE Related Disorders Social Association – THESSALONIKI

Israel ITALY – MILAN ICELAND - REYKJAVIK Federazione Alzheimer Italia The Alzheimer’s ITALY – MILANAssociation of Iceland ICELAND - REYKJAVIK Federazione Alzheimer Italia The Alzheimer’s Association of Iceland ITALY – ROME IRELAND – DUBLIN Alzheimer Uniti Onlus The Alzheimer Society of Ireland IRELAND – DUBLIN ITALY – ROME The Alzheimer Society of Ireland Alzheimer Uniti Onlus ISRAEL – RAMAT GAN JERSEY – ST HELIER EMDA – The Alzheimer’s Association of Jersey ISRAELAlzheimer’s – RAMAT GANAssociation Israel JERSEY – STAlzheimer’s HELIER Association of EMDA – The Israel Alzheimer’s Association Jersey ITALY – MILAN – LUXEMBOURG LUXEMBOURG Federazione Alzheimer Italia Association ITALY – MILANLuxembourg Alzheimer LUXEMBOURG – LUXEMBOURG Federazione Alzheimer Italia Association ITALY – ROMELuxembourg Alzheimer Alzheimer Onlus MALTA – Uniti MSIDA ITALY –Dementia ROME Malta Society Alzheimer Onlus MALTA – Uniti MSIDA JERSEY – ST HELIER Malta Dementia Society Jersey Alzheimer’s Association MONACO MONTE-CARLO JERSEY – ST–HELIER Jersey Alzheimer’s Association AMPA - Association Monégasque pour LUXEMBOURG – LUXEMBOURG MONACO – MONTE-CARLO la recherche sur la maladie d’Alzheimer Association Luxembourg Alzheimer pour AMPA - Association Monégasque LUXEMBOURG – LUXEMBOURG la recherche sur la maladie d’Alzheimer Association Luxembourg Alzheimer NETHERLANDS MALTA – MSIDA – AMERSFOORT Alzheimer Nederland Malta Dementia Society MALTA – MSIDA – AMERSFOORT NETHERLANDS Malta Dementia Society Alzheimer Nederland MONACO – MONTE-CARLO NORWAY – OSLO AMPA - Association Monégasque pour Nasjonalforeningen Demensforbundet MONACO – MONTE-CARLO la recherche sur la maladie d’Alzheimer NORWAY – OSLOMonégasque pour AMPA - Association la recherche sur la maladie d’Alzheimer Nasjonalforeningen Demensforbundet NETHERLANDS – AMERSFOORT POLAND – WARSAW Alzheimer Nederland Polish Alzheimer’s Association NETHERLANDS – AMERSFOORT POLAND –Nederland WARSAW NORWAY – OSLO Alzheimer Polish Alzheimer’s Association NORWAY – OSLO Nasjonalforeningen Demensforbundet Nasjonalforeningen Demensforbundet PORTUGAL – LISBON NORWAY – OSLO Alzheimer Portugal Nasjonalforeningen Demensforbundet ROMANIA BUCHAREST PORTUGAL LISBON POLAND –––WARSAW POLAND – WARSAW Societatea AlzheimerAssociation Alzheimer Portugal Polish Alzheimer’s Polish Alzheimer’s Association

BELGIUM – BRUSSELS BELGIUM –AiR BRUSSELS BELGIUM BRUSSELS Udruženje AiR Udruženje AUSTRIA VIENNA Ligue Nationale Nationale Alzheimer Liga AUSTRIA ––– VIENNA Ligue Alzheimer Liga AUSTRIA –Austria VIENNA Ligue Nationale Alzheimer Liga Alzheimer Ligue Nationale Alzheimer Liga Alzheimer Austria

ISRAEL – RAMAT GAN IRELAND – DUBLIN DUBLIN IRELAND IRELAND –––DUBLIN IRELAND DUBLIN IRELAND –- REYKJAVIK DUBLIN ICELAND REYKJAVIK IRELAND –ICELAND DUBLIN EMDA – The Alzheimer’s of The Alzheimer Society ofAssociation Ireland ICELAND The Alzheimer Society of Ireland ---REYKJAVIK The Alzheimer Society of Ireland ICELAND REYKJAVIK The Alzheimer’s Alzheimer Society of Ireland Alzheimer’s Association of Iceland Iceland The Alzheimer Society of Ireland The Alzheimer Society of Ireland The Association of Israel The Alzheimer’s Association of Iceland

ROMANIA––––LJUBLJANA BUCHAREST SLOVENIA SLOVAKIA BRATISLAVA SLOVAKIA BRATISLAVA SLOVAKIA –BUCHAREST BRATISLAVA SLOVAKIA BRATISLAVA Societatea Alzheimer ROMANIA Association “Forget-me-not” Slovak Alzheimer’s Society ROMANIA –– BUCHAREST Slovak Alzheimer’s Society ROMANIA – BUCHAREST Slovak Alzheimer’s Society Societatea Alzheimer Slovak Alzheimer’s Society Societatea Alzheimer

BULGARIA BULGARIA –SOFIA SOFIA BOSNIA BOSNIA & &–HERZEGOVINA HERZEGOVINA SARAJEVO BOSNIA -- SARAJEVO & - SARAJEVO BELGIUM BRUSSELS BELGIUM ––HERZEGOVINA BRUSSELS Alzheimer BOSNIA &Bulgaria HERZEGOVINA - SARAJEVO Alzheimer Bulgaria BELGIUM –AiR BRUSSELS Udruženje AiR Udruženje Ligue Nationale Nationale Alzheimer Liga Liga Udruženje AiR Ligue Alzheimer Ligue Nationale Alzheimer Liga Udruženje AiR

ISRAEL –– RAMAT RAMAT GAN ISRAEL ISRAEL –GAN RAMAT GAN IRELAND – DUBLIN DUBLIN IRELAND ISRAEL – RAMAT GAN IRELAND –––DUBLIN ISRAEL GAN RAMAT IRELAND DUBLIN ITALY EMDA –––MILAN The Alzheimer’s Association of of EMDA –GAN The Alzheimer’s The Alzheimer Society ofAssociation Irelandof EMDA The Alzheimer’s Association The Alzheimer Society of Ireland EMDA ––The Alzheimer’s Association of The Alzheimer Society of Ireland EMDA The Alzheimer’s Association The Alzheimer Society Israel Federazione Alzheimer Italia of Irelandof Israel Israel Israel of Israel Israel

SLOVAKIA –LJUBLJANA BRATISLAVA SPAIN – MADRID SLOVENIA –LJUBLJANA LJUBLJANA SLOVENIA SLOVENIA –––– SLOVAKIA BRATISLAVA SLOVAKIA BRATISLAVA Slovak Alzheimer’s Society SLOVENIA –Alzheimer LJUBLJANA SLOVAKIA –“Forget-me-not” BRATISLAVA Fundación España Association “Forget-me-not” Association Slovak Alzheimer’s Alzheimer’s Society Association “Forget-me-not” Slovak Society Slovak Alzheimer’s Society Association “Forget-me-not”

Our Our members members are are helping helping people with dementia and their people with dementia and their Our members are helping carers 37 carers in in 34 countries countries people with dementia and their Our members are helping helping Our members are carers in 32 countries Our members are helping people with dementia and their their people people with dementia and with dementia and Our32members are helping their carers in countries carers in 32 countries carers in 34 countries people with dementia and their

Our members are helping helping Our members are carers in 32 countries people with with dementia dementia and and their their people carers in in 32 32 countries countries carers

ALBANIA ALBANIA– –TIRANA TIRANA ALBANIA ALBANIA AlzheimerAlbania Albania Alzheimer Albania Alzheimer Alzheimer Albania

AUSTRIA––VIENNA VIENNA AUSTRIA AlzheimerAustria Austria Alzheimer

HUNGARY ALBANIA ALBANIA – TIRANA Hungarian Alzheimer Society ALBANIA AlzheimerAlbania Albania Alzheimer Albania Alzheimer

BELGIUM BRUSSELS BELGIUM AUSTRIA––––BRUSSELS VIENNA AUSTRIA VIENNA AUSTRIA –Austria VIENNA Ligue Nationale AlzheimerLiga Liga Ligue Nationale Alzheimer Alzheimer Alzheimer Austria Alzheimer Austria AUSTRIA – VIENNA Alzheimer Austria

HUNGARY Hungarian Alzheimer Society BOSNIA &&HERZEGOVINA – -SARAJEVO BOSNIA SARAJEVO BELGIUM –HERZEGOVINA BRUSSELS

Alzheimer Austria

BULGARIA – SOFIA BULGARIA – VARNA BOSNIA & & HERZEGOVINA HERZEGOVINA SARAJEVO BOSNIA -- SARAJEVO BULGARIA SOFIA BOSNIA BULGARIA -Compassion –– VARNA SOFIA & Bulgaria HERZEGOVINA - SARAJEVO Alzheimer Udruženje AiR Foundation Alzheimer Udruženje AiR BULGARIA – SOFIA Foundation Compassion Alzheimer Alzheimer Bulgaria Bulgaria Udruženje AiR Alzheimer Alzheimer Bulgaria BULGARIA -– VARNA SOFIA

BULGARIA – SOFIA CROATIA – ZAGREB BULGARIA –Compassion SOFIA Alzheimer Alzheimer Bulgaria Bulgaria CROATIA – --ZAGREB Alzheimer BULGARIACroatia VARNA Foundation BULGARIA VARNA Alzheimer Alzheimer Bulgaria BULGARIA - Compassion VARNA Alzheimer Croatia Foundation Alzheimer Foundation Compassion Alzheimer Foundation Compassion Alzheimer

CROATIA BULGARIA– --ZAGREB VARNA BULGARIA VARNA - Compassion VARNA Alzheimer FoundationCroatia Alzheimer CYPRUS – LARNACA BULGARIA Foundation Compassion Alzheimer CYPRUS CROATIA–––LARNACA ZAGREB Foundation Compassion Alzheimer CROATIA ZAGREB

Pancyprian Alzheimer Association CROATIA ZAGREB Association Pancyprian Alzheimer Alzheimer–Croatia Croatia Alzheimer CROATIA–––LARNACA ZAGREB Alzheimer Croatia CYPRUS CROATIA ZAGREB

CROATIA ZAGREB Association Pancyprian Alzheimer Alzheimer–Croatia Croatia Alzheimer

CZECH REPUBLIC – PRAGUE Alzheimer Croatia CZECH REPUBLIC – PRAGUE CYPRUS LARNACA Czech Alzheimer’s Society CYPRUS –– LARNACA CYPRUS – LARNACA Czech Alzheimer’s Society CZECH REPUBLIC – PRAGUE Pancyprian Alzheimer Association CYPRUS LARNACA Pancyprian Alzheimer Association CYPRUS –– LARNACA – LARNACA Pancyprian AlzheimerCYPRUS Association Czech Alzheimer’s Society Pancyprian Alzheimer Association Pancyprian Alzheimer Association Pancyprian Alzheimer Association DENMARK – HELLERUP DENMARK – HELLERUP Alzheimerforeningen CZECH REPUBLIC REPUBLIC PRAGUE CZECH –– PRAGUE DENMARK – HELLERUP CZECH REPUBLIC REPUBLIC PRAGUE CZECH –– PRAGUE CZECH REPUBLIC –Society PRAGUE Alzheimerforeningen Czech Alzheimer’s Alzheimer’s CZECH REPUBLIC –Society PRAGUE Czech Society Alzheimerforeningen Czech Alzheimer’s Alzheimer’s Czech Society Czech Alzheimer’s Society Czech Alzheimer’s Society ESTONIA – TALLINN FINLAND DENMARK– ––HELSINKI HELLERUP NGO Living–with Dementia FINLAND DENMARK HELLERUP DENMARK HELLERUP DENMARK ––HELSINKI HELLERUP DENMARK – HELLERUP Muistiliitto Alzheimerforeningen DENMARK – HELLERUP Alzheimerforeningen Muistiliitto Alzheimerforeningen AlzheimerforeningenAlzheimerforeningen Alzheimerforeningen FINLAND – HELSINKI FRANCE – PARIS FINLAND –– HELSINKI HELSINKI FINLAND Muistiliitto – HELSINKI FRANCE Association France Alzheimer FINLAND–––PARIS HELSINKIFINLAND Muistiliitto Muistiliitto FINLAND HELSINKI Muistiliitto FINLAND – HELSINKI Association France Alzheimer Muistiliitto Muistiliitto Muistiliitto GERMANY – BERLIN FRANCE –– PARIS PARIS FRANCE – PARIS FRANCE FRANCE – Alzheimer PARIS Deutsche Gesellschaft e.V. Association France Alzheimer Alzheimer Association France Alzheimer Association France GERMANY – BERLIN FRANCE –– PARIS PARIS Association France Alzheimer FRANCE FRANCE – PARIS Deutsche Alzheimer Gesellschaft e.V. Association France Alzheimer Alzheimer Association France Association France Alzheimer GREECE – THESSALONIKI GERMANY BERLIN GERMANY –– BERLIN GERMANY – BERLIN GERMANY –Federation BERLIN Gesellschaft Panhellenic of Alzheimer’s Deutsche Alzheimer Alzheimer e.V. Deutsche Gesellschaft e.V. Deutsche Alzheimer Gesellschaft e.V Gesellschaft Deutsche Alzheimer Disease and Related Disorders e.V. GREECE – THESSALONIKI GERMANY BERLIN GERMANY –– BERLIN GERMANY –Federation BERLIN Gesellschaft Panhellenic of Alzheimer’s Deutsche Alzheimer Alzheimer e.V. Deutsche Gesellschaft e.V. GREECE THESSALONIKI GREECE –– THESSALONIKI Deutsche Alzheimer e.V. of Alzheimer’s GREECE – THESSALONIKI Disease and Related Gesellschaft Disorders Panhellenic Federation Panhellenic Federation of Alzheimer’s Panhellenic of Alzheimer’s Disease and andFederation Related Disorders Disorders Disease Related Disease and Related Disorders

GREECE –– THESSALONIKI THESSALONIKI GREECE GREECE – THESSALONIKI Panhellenic Federation of of Alzheimer’s Alzheimer’s Panhellenic Federation Panhellenic of Alzheimer’s Disease and andFederation Related Disorders Disorders Disease Related Disease and Related Disorders

HUNGARY PanhellenicAlzheimer Federation of Alzheimer’s Hungarian Society Alzheimer Europe Members GREECE – THESSALONIKI IRELAND DUBLIN ICELAND –--Disease REYKJAVIK and Related Disorders ICELAND REYKJAVIK Alzheimer Europe Members ICELAND REYKJAVIK Federation ofIceland Alzheimer’s ICELAND -–Panhellenic REYKJAVIK The Alzheimer Society of Ireland Alzheimer’s Association of ICELAND REYKJAVIK GREECEAssociation – THESSALONIKI TheAlzheimer’s Alzheimer’s of Iceland The Association of ICELAND - REYKJAVIK Disease and Related Disorders The Alzheimer’s Association ofIceland Iceland Alzheimer Iceland Panhellenic of Alzheimer’s HUNGARY –Federation BUDAPEST The Alzheimer’s Association of Iceland Social Cluster Association Disease and Related Disorders

The Alzheimer’s Association of Iceland

ISRAEL –– RAMAT RAMAT GAN GAN ISRAEL ISRAEL – RAMAT GAN ISRAEL RAMAT GAN Association of ITALY EMDA ––MILAN The Alzheimer’s

EMDA––The TheAlzheimer’s Alzheimer’sAssociation Association of EMDA ITALY –– MILAN ROME MILAN EMDA Associationof of ITALY Federazione Alzheimer Italia Israel – The Alzheimer’s Israel ITALY ITALY –––MILAN MILAN Israel ITALY MILAN Israel Alzheimer Uniti Onlus Italia Federazione Alzheimer Italia Federazione Alzheimer Federazione Alzheimer Italia Federazione Alzheimer Italia Federazione Alzheimer Italia ITALY –– MILAN ROME MILAN ITALY ITALY ––MILAN ITALY MILAN Alzheimer Onlus Italia Federazione Alzheimer Italia Federazione Alzheimer JERSEY ST HELIER Uniti ITALY –––ROME ROME Federazione ITALY FederazioneAlzheimer AlzheimerItalia Italia ITALY – ROME

ITALY ––ROME ITALY ROME Jersey Alzheimer’s Association Alzheimer Uniti Onlus Onlus Alzheimer Uniti Onlus Alzheimer Uniti Alzheimer Onlus AlzheimerUniti Uniti Onlus JERSEY ST HELIER ITALY ––ROME

ITALY––ROME ROME ITALY ITALY –Alzheimer’s ROME Jersey Association Alzheimer Uniti Onlus Onlus Alzheimer Uniti Alzheimer AlzheimerUniti UnitiOnlus Onlus

LUXEMBOURG – LUXEMBOURG JERSEY ––– ST ST HELIER HELIER JERSEY ST HELIER JERSEY JERSEY ––ST JERSEY STHELIER HELIERAssociation Association Luxembourg Alzheimer Jersey Alzheimer’s Alzheimer’s Jersey Association Jersey Alzheimer’s LUXEMBOURG – LUXEMBOURG JERSEY ––Association ST HELIER HELIER JERSEY ST Jersey Alzheimer’s Association JERSEY JERSEY––ST STHELIER HELIER

Association Luxembourg Alzheimer Jersey Alzheimer’s Alzheimer’s Association Jersey Association Jersey JerseyAlzheimer’s Alzheimer’sAssociation Association

MALTA – MSIDA LUXEMBOURG – LUXEMBOURG LUXEMBOURG LUXEMBOURG LUXEMBOURG LUXEMBOURG LUXEMBOURG ––––LUXEMBOURG LUXEMBOURG LUXEMBOURG MALTA – MSIDA–– Alzheimer LUXEMBOURG LUXEMBOURG Malta Dementia Society LUXEMBOURG LUXEMBOURG Association Luxembourg LUXEMBOURG ––Alzheimer LUXEMBOURG Association Luxembourg LUXEMBOURG LUXEMBOURG Malta Dementia Society Association Luxembourg Alzheimer AssociationAssociation Luxembourg Alzheimer Luxembourg Alzheimer Association AssociationLuxembourg LuxembourgAlzheimer Alzheimer

MONACO –MONACO MONTE-CARLO FORMER–– YUGOSLAV REPUBLIC OF MALTA MSIDA MALTA MSIDA – MONTE-CARLO MALTA – MSIDA MSIDA MALTA MALTA ––MSIDA MALTA –––MSIDA MALTA MSIDA MALTA MSIDA MACEDONIA – SKOPJE AMPA -Dementia Association Monégasque pour pour Malta Dementia Society AMPA -Dementia Association Monégasque Malta Society Malta Society Malta Dementia Society Malta Dementia Society Malta Dementia Society Malta Dementia Society Malta Dementia Society Alzheimer Disease Association of d’Alzheimer la sur recherche sur la maladie la recherche la maladie d’Alzheimer Macedonia MONACO –– MONTE-CARLO MONTE-CARLO MONACO MONACO –MONACO MONTE-CARLO ––MONTE-CARLO MONACO MONTE-CARLO MONTE-CARLO NETHERLANDS – AMERSFOORT MONACO –––MONACO MONTE-CARLO AMPA - Association Association Monégasque pour pour AMPA Monégasque MONACO MONTE-CARLO AMPA -–--Association Monégasque pour NETHERLANDS AMERSFOORT AMPA -- Association Association Monégasque pour AMPA Association Monégasque pour AMPA Monégasque pour Alzheimer Nederland la recherche sur la la maladie maladie d’Alzheimer larecherche recherche sur d’Alzheimer AMPA --Association Monégasque pour la sur la maladie d’Alzheimer MALTA – MSIDA AMPA Association Monégasque pour la recherche sur la maladie d’Alzheimer Alzheimer Nederland la recherche recherche sur la la maladie maladie d’Alzheimer la sur d’Alzheimer lala recherche sur maladie Malta Dementia recherche surlalaSociety maladied’Alzheimer d’Alzheimer NORWAY – OSLO NETHERLANDS AMERSFOORT NETHERLANDS –– AMERSFOORT NETHERLANDS NETHERLANDS––AMERSFOORT AMERSFOORT

Nasjonalforeningen Alzheimer NederlandDemensforbundet Alzheimer Nederland NORWAY –Alzheimer OSLO NETHERLANDS – AMERSFOORT AMERSFOORT Nederland NETHERLANDS Nederland NETHERLANDS –––AMERSFOORT MONACO –Alzheimer MONTE-CARLO NETHERLANDS AMERSFOORT Nasjonalforeningen Demensforbundet Alzheimer Nederland Nederland Alzheimer Alzheimer Nederland AMPA – Association Monégasque pour la Alzheimer Nederland POLAND –––WARSAW NORWAY OSLO NORWAY OSLO recherche NORWAY sur la maladie – OSLO NORWAY – OSLOd’Alzheimer

Polish Alzheimer’s Association Nasjonalforeningen Demensforbundet Nasjonalforeningen Demensforbundet Nasjonalforeningen Demensforbundet

Demensforbundet POLAND WARSAW NORWAY–––Nasjonalforeningen OSLO NORWAY OSLO NORWAY ––OSLO NORWAY OSLO Association Polish Alzheimer’s Nasjonalforeningen Demensforbundet Nasjonalforeningen Demensforbundet MONTENEGRO – PODGORICA Nasjonalforeningen PORTUGAL – LISBON POLAND WARSAW POLAND ––Demensforbundet WARSAW Nasjonalforeningen Demensforbundet – Portugal WARSAW NVO FuturaPOLAND Alzheimer Polish Alzheimer’s Alzheimer’s Association Polish Association Polish Alzheimer’s Association

PORTUGAL – LISBON POLAND –– WARSAW WARSAW POLAND POLAND – Portugal WARSAW PORTUGAL LISBON Alzheimer Polish Alzheimer’s Association PORTUGAL –– LISBON Polish Alzheimer’s Association NETHERLANDS – AMERSFOORT PORTUGAL – LISBON AlzheimerAssociation Portugal Polish Alzheimer’s Alzheimer Portugal Alzheimer Nederland Alzheimer Portugal PORTUGAL –– LISBON LISBON PORTUGAL PORTUGAL – LISBON Alzheimer Portugal Portugal Alzheimer Alzheimer Portugal

POLAND – WARSAW Polish Alzheimer’s Association SLOVAKIA BRATISLAVA ROMANIA –LISBON BUCHAREST PORTUGAL –– PORTUGAL – LISBON ROMANIA BUCHAREST ROMANIA –Alzheimer BUCHAREST Alzheimer Portugal Slovak Alzheimer’s Society Societatea Alzheimer Portugal Societatea Alzheimer ROMANIA – BUCHAREST PORTUGAL –Alzheimer LISBON Societatea Societatea Alzheimer Alzheimer Portugal

Societatea Alzheimer

SPAIN – MADRID SLOVENIA LJUBLJANA SLOVENIA – LJUBLJANA SLOVENIA –– LJUBLJANA SPAIN –– PAMPLONA MADRID SPAIN MADRID SLOVENIA –Alzheimer LJUBLJANA Fundación España Association “Forget-me-not” Association “Forget-me-not” Association “Forget-me-not” SPAIN – MADRID C.E.A.F.A. Fundación Alzheimer España España Association “Forget-me-not” Fundación Alzheimer Fundación Alzheimer España SPAIN – PAMPLONA MADRID

SPAIN – MADRID SPAIN – Alzheimer MADRID España SPAIN – MADRID C.E.A.F.A. Fundación SWEDEN –Alzheimer LUND España Fundación SPAIN PAMPLONA SPAIN –– PAMPLONA Fundación Alzheimer España Fundación Alzheimer España SPAIN – PAMPLONA Alzheimerföreningen i Sverige C.E.A.F.A. C.E.A.F.A. C.E.A.F.A. SWEDEN – LUND SPAIN –– PAMPLONA PAMPLONA SPAIN SPAIN – PAMPLONA i Sverige Alzheimerföreningen C.E.A.F.A. SPAIN – PAMPLONA C.E.A.F.A. C.E.A.F.A. – SWEDEN – LUND STOCKHOLM LUND SWEDEN

C.E.A.F.A SWEDEN – LUND Demensförbundet Alzheimerföreningen Sverige Alzheimerföreningen ii Sverige SWEDEN –– LUND STOCKHOLM LUND Alzheimerföreningen i Sverige SWEDEN SWEDEN – LUND Demensförbundet Alzheimerföreningen Sverige Alzheimerföreningen ii Sverige SWEDEN – LUND i Sverige Alzheimerföreningen

SWITZERLAND – YVERDON-LES-BAINS SWEDEN STOCKHOLM SWEDEN –– STOCKHOLM Alzheimer Sverige SWEDEN STOCKHOLM Association Alzheimer Suisse Demensförbundet SWITZERLAND – YVERDON-LES-BAINS SWEDEN –––STOCKHOLM STOCKHOLM Demensförbundet SWEDEN SWEDEN – STOCKHOLM Demensförbundet Association Alzheimer Suisse Demensförbundet Demensförbundet Demensförbundet

SWEDEN – STOCKHOLM TURKEY – ISTANBUL SWITZERLAND YVERDON-LES-BAINS Demensförbundet SWITZERLAND –– YVERDON-LES-BAINS TURKEY – ISTANBUL SWITZERLAND YVERDON-LES-BAINS SWITZERLAND –– YVERDON-LES-BAINS SWITZERLAND – YVERDON-LES-BAINS Alzheimer Vakfı Association Alzheimer Suisse SWITZERLAND – YVERDON-LES-BAINS Association Alzheimer Suisse Alzheimer Vakfı Association Alzheimer Suisse Association Alzheimer Suisse Association Alzheimer Suisse Association Alzheimer Suisse SWITZERLAND – BERN UNITED KINGDOM – EDINBURGH TURKEY ISTANBUL Association Alzheimer Suisse TURKEY ––KINGDOM ISTANBUL UNITED – EDINBURGH TURKEY ISTANBUL TURKEY ––ISTANBUL ISTANBUL TURKEY –– Alzheimer Scotland Vakfı TURKEY ISTANBUL Alzheimer Vakfı Alzheimer Scotland Vakfı Alzheimer Vakfı Alzheimer Vakfı Alzheimer Vakfı TURKEY – ISTANBUL UNITED KINGDOM KINGDOM –– EDINBURGH LONDON EDINBURGH UNITED Alzheimer Vakfi– EDINBURGH UNITED KINGDOM UNITED KINGDOM LONDON Alzheimer’s Society EDINBURGH Alzheimer Scotland Alzheimer Scotland UNITED KINGDOM –– EDINBURGH Alzheimer Scotland UNITED KINGDOM Alzheimer’s Society – EDINBURGH Alzheimer Scotland Alzheimer Scotland Alzheimer Scotland UNITED KINGDOM LONDON UNITED KINGDOM – EDINBURGH UNITED KINGDOM –– LONDON UNITED KINGDOM – LONDON Alzheimer’s Society Alzheimer’s AlzheimerSociety Scotland UNITED KINGDOM – LONDON LONDON Alzheimer’s Society – UNITED KINGDOM UNITED KINGDOM Alzheimer’s Society – LONDON Alzheimer’s Society Alzheimer’s Society UNITED KINGDOM – LONDON Alzheimer’s Society

RO Soc RO Soc SLO Slo SLO Slo SLO Ass SLO Ass SPA Fun SPA Fun SPA C.E SPA C.E SW Alz SW Alz SW De SW De SW Ass SW Ass TU Alz TU Alz UN Alz UN Alz UN Alz UN Alz

29th Alzheimer Europe Conference Making valuable connections The Hague, Netherlands 23â&#x20AC;&#x201C;25 October 2019 www.alzheimer-europe.org/conferences #29AEC

Dementia in Europe magazine issue 29, February 2019

Articles inside

Flanders forms a working group of people with dementia