Alzheimer Europe Annual Report 2018 by Alzheimer Europe

Annual and Financial Report 2018

This publication received funding under an operating grant from the European Unionâ&#x20AC;&#x2122;s Health Programme (2014â&#x20AC;&#x201C;2020). The content of this publication represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.

Alzheimer Europe Annual and Financial Report 2018

TABLE OF CONTENTS

Contents Annual report ��3 Preface �� 3 Executive summary �� 5 Introduction ��8 AE core activities ��9 Objective 1: Providing a voice to people with dementia and their carers ��9 Objective 2: Making dementia a European priority �� 11 Objective 3: Promoting a rights-based approach to dementia �� 13 Objective 4: Supporting dementia research �� 14 Objective 5: Strengthening the European dementia movement �� 17 Other activities and projects ��19 Involvement in EU projects ��19 Support of European research activities �� 23 Corporate affairs �� 25 Annex 1: Meetings attended by AE representatives �� 27 Meetings organised by Alzheimer Europe in the framework of the 2018 Operating Grant �� 27 Meetings attended by AE representatives in the framework of the 2018 Operating Grant �� 27 Other meetings organised by AE or attended by AE representatives in 2018 ��28 Alzheimer Europe Board and staff �� 31

Financial report �� 32 Report of the Réviseur d'entreprises agréé �� 32 Balance sheet as of December 31, 2018 ��36 Profit and loss account. Year ended December 31, 2018 �� 37 Breakdown of income �� 38 Our sponsors and supporters ��40

PREFACE

Preface As the Chairperson of Alzheimer Europe, I am delighted to welcome you to our Annual Report, highlighting the organisation’s activities during 2018. As in previous years, our core activities were funded by an operating grant accorded by the European Commission, in the framework of the European Union’s health programme. Alzheimer Europe would like to express its gratitude for this ongoing support, which allows the organisation, together with its 42 national member organisations, to continue to focus its efforts on making dementia a public health priority, ensuring important research can be carried out, and upholding the rights of people with dementia and their carers.

In 2018, Alzheimer Europe involved people living with dementia in all aspects of its work. The organisation’s European Working Group of People with Dementia (EWGPWD) held four meetings, at which the group members planned their active participation in the 28th Alzheimer Europe Conference (28AEC) in Barcelona, as well as consulting on several EU-funded research projects. The EWGPWD renewed its membership for the 2018–2020 mandate, in October 2018, prior to 28AEC. The new group consists of 13 members nominated by 13 different national member organisations. During the conference itself, the group help a Special Symposium – which was, as ever, one of the most popular sessions – and group members were also speakers at a number of the plenary and parallel sessions. In addition, the EWGPWD was involved in Alzheimer Europe’s mapping exercise on the development and growth of working groups of people with dementia in the European region and the group’s Chairperson participated in all four of Alzheimer Europe’s Board meetings during 2018, as an ex-officio member with full voting rights.

hosted by members of the EAA at the European Parliament in Brussels, on topics including Alzheimer’s prevention and dementia care. The organisation also reinstated the European group of governmental experts on dementia, which met in December 2018, with representation from 17 national health ministries, as well as the European Commission, the OECD and the WHO. Alzheimer Europe also continued its active involvement in the 2nd European Joint Action on Dementia (Act on Dementia). The 2018 priority for our European Dementia Ethics Network was to examine the development of intercultural care and support for people with dementia from minority ethnic groups. The findings were published in our 2018 Ethics report at the end of the year, and I was pleased to present the publication to delegates during our first European Parliament lunch debate of 2019, together with our 2018 Yearbook, which compared 21 national dementia strategies in European countries. In terms of Alzheimer Europe’s work to support dementia research, we expanded our Clinical Trials Watch (CTW) in 2018, to include information about actively-recruiting European trials in Phase II, in addition to the Phase III trials already included. Our annual conference was, as always, an opportunity to share and gather knowledge on all aspects of dementia and to support international collaboration and strengthen ties within the research community. Held from 29–31 October, under the theme “Making Dementia a European Priority”, the event attracted 816 delegates from 46 countries worldwide. Alzheimer Europe also continued its involvement in many EU research projects – actively participating in AD-Detect-Prevent, AETIONOMY, AMYPAD, EPAD, MOPEAD, PACE,

It is great to see that there is increased awareness of the importance of a coordinated response to dementia, both at national and international level, and that policies are being put in place, with dedicated funding and action plans for implementation. Alzheimer Europe welcomed the launch of Portugal’s dementia strategy in June 2018, as well as news of forthcoming strategies in both Sweden and Germany. We also continued our work with the European Alzheimer’s Alliance (EAA), which counted 126 Members of the European Parliament (MEPs), at the end of 2018, across 27 Member States, making it one of the Parliament’s largest interest groups. Three lunch debates were organised and 3

PREFACE

PARADIGM, PRODEMOS and ROADMAP and collaborating with INDUCT, MinD, SPAN+ and SyDAD. These projects provide an additional funding stream and allow Alzheimer Europe to stay at the forefront of European research.

Finally, Alzheimer Europe published the results of its survey of carers, carried out during 2017 thanks to an educational grant from Roche. The publication and the results were presented at the European Parliament lunch debate in June 2018.

To ensure our work and that of our collaborators is disseminated, and to help ensure news about all aspects of dementia in Europe is as widespread as possible, we published three editions of our Dementia in Europe magazine and eleven monthly e-newsletters, the latter containing a total of 661 news stories, all of which were also shared via the organisation’s website and many via its social media accounts (Facebook, Twitter and LinkedIn). The magazine has an audience of 3,500 (including all MEPs) and the e-mail newsletter reaches upward of 8,000 people across Europe.

All of these accomplishments were only possible thanks to the herculean efforts of Alzheimer Europe’s small, dedicated team, spearheaded by Executive Director Jean Georges. In 2018, the team included Christophe Bintener, Cindy Birck, Kate Boor Ellis, Ana Diaz, Dianne Gove, Gwladys Guillory, Stefanie Peulen and Grazia Tomasini. Vanessa Challinor left the team mid-year to take on new challenges, and Owen Miller joined us in August. Thanks also go to our national members and to all the external experts who collaborated in our activities and projects.

The European Dementia Movement grows stronger with every passing year, and 2018 was no exception. In February, the organisation signed a memorandum of understanding with the European Academy of Neurology, and throughout the year, we continued to work closely with the European Patients’ Forum and European Disability Forum, as well as other European organisations, campaigning on access to healthcare, accessibility for people with dementia and other disabilities, and a better work-life balance for carers. In October 2018, our Annual Meeting welcomed two new member organisations – from North Macedonia and Estonia – and the end of the year saw our 4th Alzheimer’s Association Academy, held in Brussels, at which we organised a number of capacity-building workshops. In attendance were 31 representatives from AE member organisations as well as company representatives and members of the EWGPWD.

We are also hugely appreciative of the generosity of the corporate sponsors that supported our 2018 activities: Abbvie, Alzheimer Europe Foundation, Amgen, Biogen, Danone (Nutricia), Essity, European Commission, Fondation Alzheimer, GE Healthcare, The Irish Ministry of Health, Janssen, Lilly, Lundbeck, MSD, Newsweaver, Novartis, Otsuka, Pfizer, Publishing Bureau, Robert Bosch Stiftung and Roche. Finally, I would like to gratefully acknowledge my fellow Board members for their collaboration, advice and recommendations on the work of Alzheimer Europe, which are informed by many years of experience working for and with Alzheimer associations across Europe. Iva Holmerová Chairperson of Alzheimer Europe

Iva Holmerová addresses delegates at our EP lunch debate in December 2018

EXECUTIVE SUMMARY

Executive summary In 2018, Alzheimer Europe: Made dementia a European priority and actively contributed to the work on diagnosis and post-diagnostic support, care coordination, residential care and dementia-friendly communities of the 2nd European Joint Action on Dementia and supported the action’s dissemination at its Annual Conference welcomed the launch of the Portuguese dementia strategy and the preparations towards the development of such a strategy in Germany and Sweden continued its work with the European Alzheimer’s Alliance with 126 Members of the European Parliament from 27 EU countries and involved these members in the organisation of three lunch debates in the European Parliament organised two face-to-face meetings with governmental affairs representatives from its national organisations for an exchange on EU and national policy developments and campaigns played an active role on the Patients’ and Consumers’ Working Party of the European Medicines Agency reinstituted the European group of governmental experts on dementia and organised a first meeting of the group in December with representation from 17 national ministries, the European Commission, OECD and the World Health Organization

Provided a voice to people with dementia and carried out a mapping exercise of national working groups of people with dementia and provided a report with the results and identified good practices organised four meetings of the European Working Group of People with Dementia (EWGPWD) with one meeting coinciding with AE’s Annual Conference and one with a lunch debate in the European Parliament involved the Chairperson of the European Working Group of People with Dementia as a full voting member at AE Board meetings ensured people with dementia and carers were represented in all AE projects and working groups and involved the group in various EU projects where AE is asked to provide the views of people with dementia renewed the membership of the EWGPWD in 2018 with 13 members being nominated by 13 different member organisations for the 2018–2020 mandate of the group involved the EWGPWD in the organisation of the Annual Conference had representatives of the group take part in a scientific advice procedure of the European Medicines Agency

Governmental Expert Group on Dementia meets in Brussels, December 2018

EXECUTIVE SUMMARY

published its 2018 Dementia in Europe Yearbook with a comparison of 21 national dementia strategies in European countries Promoted a rights-based approach to dementia and identified the development of intercultural care and support for people with dementia from minority ethnic groups as the priority of the work of its European Dementia Ethics Network set up a working group comprised of experts in the field and published a report with the results of the literature review and recommendations on the recognition of dementia as a disability Supported dementia research and expanded its Clinical Trials Watch and made dementia-friendly information on 7 phase II and 11 phase III clinical trials conducted in Europe available on its website continued with the development of its European Dementia Observatory by proactively identifying relevant policy and research developments and publishing 661 news stories via its monthly e-mail newsletter, its website and social media attracted 537,292 unique visitors to its website and ensured social media were a full part of the organisation’s communication activities and ended the year with 9,046 Twitter followers and 7,633 Facebook likes

organised the 28th AE Conference in Barcelona, Spain from 29 to 31 October under the motto “Making dementia a European priority” in collaboration with CEAFA and Fundación Alzheimer España with 816 participants from 46 countries Strengthened the European dementia movement and organised a number of capacity building workshops for its member organisations as part of its Alzheimer’s Association Academy held quarterly meetings of the AE Board to monitor the association’s financial situation and the implementation of its work plan organised its Annual Meeting in the framework of the Annual Conference in Barcelona where members adopted the organisation’s report on past activities, future work plan and budget, elected a new Board and welcomed Estonia and North Macedonia as new members continued as an active member of the European Patients’ Forum and European Disability Forum and campaigned with other organisations for Access to healthcare, for the adoption of the European Accessibility Act and the WorkLife Balance Initiative and for a greater role of the European Union in the health field via the #EU4Health campaign

The 2018–2020 EWGPWD and care partners at 28AEC in Barcelona, October 2018

EXECUTIVE SUMMARY

improved the collaboration with the INTERDEM network and signed a memorandum of understanding with the European Academy for Neurology Participated and carried out a number of projects and continued its involvement in a number of EU funded projects by representing the views of people with dementia and their carers in the research consortium, by contributing to the ethical discussions and by supporting the communication and dissemination activities towards a non-scientific audience: • AD-Detect-Prevent (Presymptomatic AD detection and prevention) • AETIONOMY (Development of an aetiology-based taxonomy of dementias) • AMYPAD (Amyloid imaging to prevent Alzheimer’s disease) • EPAD (European Prevention of Alzheimer’s Dementia) • MOPEAD (Models of Patient engagement for Alzheimer’s disease) • PACE (effectiveness of palliative care for elderly people in long term care facilities in Europe) • PARADIGM (Patients active in research and development for an improved generation of medicines)

• PRODEMOS (Prevention of Dementia using Mobile phone Applications) • ROADMAP (Real world outcomes across the AD spectrum for better care) collaborated with the following EU projects • INDUCT (Interdisciplinary Network for Dementia Utilising Current Technology) • MinD (Designing for People with Dementia) • SPAN+ (Empowering people with dementia) • SYDAD (Synaptic Dysfunction in Alzheimer’s Disease) developed a number of projects funded thanks to the support of its corporate sponsors and partners • organised three lunch debates in the European Parliament • published three editions of the Dementia in Europe magazine published the results of its a survey of 1,409 carers’ experiences of a diagnosis in the Czech Republic, Finland, Italy, the Netherlands and the United Kingdom (Scotland) in a report and published a scientific article in the International Journal of Geriatric Psychiatry thanks to an educational grant by Roche.

Dan Chisholm, WHO Europe, addressing delegates during 28AEC

INTRODUCTION

Introduction The Strategic Plan of Alzheimer Europe sets out the five main objectives of the organisation and highlights key aims and actions to be undertaken under each objective for the period covered by the plan (2016–2020). This year’s Annual Report breaks down the organisation’s core activities into these five key strategic objectives and follows the structure of the 2018 Annual Work Plan, which was adopted at the Annual General Meeting in Berlin on 2 October 2017.

In addition, the report highlights the activities undertaken by Alzheimer Europe in support of EU projects it partnered with and presents those activities it carried out thanks to the support of its corporate sponsors.

The 2018–2020 Alzheimer Europe Board, Barcelona, October 2018

ALZHEIMER EUROPE CORE ACTIVITIES

AE core activities In 2018, Alzheimer Europe received an operating grant in the framework of the Public Health Programme which provided the funding for the organisation’s core activities.

Objective 1: Providing a voice to people with dementia and their carers The representation of people with dementia in policy discussions, service development and research is still underdeveloped in many countries. Thanks to its European Working Group of People with Dementia (EWGPWD) from 13 different countries, AE was in a position to showcase the important contributions people with dementia can make. The EWGPWD was also in a position to provide input to the 2nd European Joint Action on Dementia, as well as EU projects and initiatives where the views of people with dementia were sought.

The EWGPWD had 4 face-to-face meetings in 2018:

18–20 March, Münsbach (Luxembourg) 27–28 June, Brussels (Belgium) 28 October, Barcelona (Spain) 4–5 December, Brussels (Belgium)

The Chair of the EWGPWD, Helen Rochford-Brennan actively participated in the meetings of the Board of AE in 2018. She was replaced on one occasion by Chris Roberts, the Vice Chair. Helen also participated in the AE General Assembly in Barcelona 2018.

A key priority of the 2018 Work Plan was to identify which working groups or other involvement methods exist at national level. AE therefore liaised primarily with its national organisations, but also involved other organisations, projects and initiatives aiming at promoting the active involvement of people with dementia to ensure that the identified good practices get shared widely amongst the wider dementia community.

Members of the group have all been nominated by their national Alzheimer Association. In 2018, the group initially had 13 members from the following countries: Austria, Belgium, Bosnia and Herzegovina, the Czech Republic, Finland, Germany, Ireland, Slovenia, Sweden, Switzerland, Portugal, UK England, Wales and Northern Ireland and

EWGPWD Special Symposium, 28AEC, Barcelona, October 2018

ALZHEIMER EUROPE CORE ACTIVITIES

UK Scotland� The 2018–2020 group is comprised of the following members: Chair: Helen Rochford-Brennan, Ireland� Vice-Chair: Chris Roberts, UK – England, Wales and Northern Ireland� Members: Idalina Aguiar, Portugal; Stefan Eriksson, Sweden; Tomaž Grižinič, Slovenia; Amela Hajrič, Bosnia & Herzegovina; Carol Hargreaves, UK – Scotland; Bernd Heise, Germany; Miha Kastelic, Czech Republic; Petri Lampinen, Finland; Thomas Maurer, Switzerland; Angela Pototschnigg, Austria; Geert Van Laer, Belgium� Carer Nélida Aguiar and her mother EWGPWD member Idalina, December 2018 lunch debate

Joint Action: the working group provided feedback on the work carried out by the work packages on dementia-friendly communities, timely diagnosis and residential care EU projects in which AE is involved (ROADMAP, PACE, PARADIGM, EPAD and INDUCT) Scientific procedure at the European Medicines Agency The following meetings: In February 2018, Tomaž Gržinič participated in an interview, with a famous Slovenian neurologist, Prof� Dr Zvezdan Pirtošek, which was broadcasted on national TV� On 16 August, Alv Orheim (former vice-chair of the EWGPWD) and his wife Berit Orheim attended the Nordic Dementia Conference in Copenhagen and spoke about their experience of being part of the EWGPWD� In August 2018, the Chair of the EWGPWD, Helen Rochford-Brennan, was invited by the World

EWGPWD Chair Helen Rochford-Brennan, December 2018 lunch debate

In 2018, the EWGPWD and/or its members contributed towards: AE activities (28th AE conference, Alzheimer’s Association Academy, 2018 Yearbook on national dementia strategies, discussion paper on “The development of intercultural care and support for people with dementia from minority ethnic groups”, AE Newsletter, clinical trials watch etc�)

Jayne Goodrick, wife of EWGPWD Vice-chair Chris Roberts, February 2018 lunch debate

ALZHEIMER EUROPE CORE ACTIVITIES

Health Organization (WHO) to be a member of the External Review Group for their evidence-based standard guidelines for the risk reduction of cognitive decline and dementia. On 21 September, Petri Lampinen spoke at the Alzheimer Society of Finland’s 30th anniversary gala. On 22 and 23 November, Helen Rochford-Brennan made a speech about her experience as a person with dementia, her work as a Human Rights activist and finally her work as Chair of the EWGPWD at the Gulbenkian Foundation in Lisbon. In December 2018, three members of the working group (Carol Hargreaves, Helen Rochford-Brennan and Tomaž Gržinič) contributed a personal testimonial to a campaign called #AgeingEqual which was organised by the European Disability Forum. The consultation aimed to raise awareness about ageism and its negative consequences on people’s capacity to fully enjoy their human rights (with a specific focus on the intersection between ageism and disability). The campaign ran from 3 to 9 December and the personal testimonials were posted online.

Iva Holmerová gives plaque to former EWGPWD Chair Helga Rohra during December 2018 lunch debate

Objective 2: Making dementia a European priority 2018 saw a number of key developments at national, European and global level, which Alzheimer Europe was able to contribute to.

On a national level, Alzheimer Europe welcomed the launch of a national dementia strategy in Portugal with announcements from Germany and Sweden that work would commence on the development of national dementia strategies in those countries.

In 2018, Alzheimer Europe was actively involved in the 2nd Joint Action on Dementia coordinated by the Scottish Government, contributing to the priority areas of diagnosis and post-diagnostic support, crisis and care coordination, residential care and dementia friendly communities and hosted the Programme Board of the Joint Action during its Annual Conference in Barcelona.

During 2018, the membership of the European Alzheimer’s Alliance grew to 126 MEPs from 27 Member States. Françoise Grossetête (France, EPP) continued as Chair of the Alliance. The Vice-Chairs are Nessa Childers (Ireland, S&D), Marisa Matias (Portugal, GUE/NGL), Sirpa Pietikäinen (Finland, EPP), Frédérique Ries (Belgium, ALDE) and Keith Taylor (United Kingdom, Green/EFA).

Nessa Childers, MEP (Ireland), June 2018 lunch debate

Good attendance at lunch debate on dementia care in the European Union, June 2018

ALZHEIMER EUROPE CORE ACTIVITIES

Alzheimer Europe gratefully acknowledges the support of all the Members of the European Parliament who were present or represented at the Alzheimer Europe lunch debates, contributed to Alzheimer Europe’s Dementia in Europe magazine or supported national member organisations in their campaigns to make dementia a national and European priority.

Sirpa Pietikäinen, MEP (Finland), host of June 2018 lunch debate

Alzheimer Europe continued its collaboration with the European Medicines Agency (EMA) in 2018 as an accredited patient organisation and as a full member of EMA’s Patients’ and Consumers’ Working Party (PCWP). AE staff participated in PCWP meetings organised during the course of the year and the annual training session for representatives of patients’ associations.

Deirdre Clune, MEP (Ireland), December 2018 lunch debate

Finally, in response to the EU Commission’s decision to disband the Governmental Expert Group on Dementia, Alzheimer Europe worked with the health ministries of Italy, the Netherlands and Scotland, to re-establish a similar group to ensure continuity of such a platform. In December 2018, a new group of national Government Experts on Dementia met in Brussels, involving 17 governments from across the European Union, with the European Commission, OECD and WHO also in attendance as observer members.

Alzheimer Europe also met with Irene Oldfather of the European Economic and Social Committee (EESC) to explore how the two organisations could better work together. Alzheimer Europe is now looking at potential options to engage with this body, to ensure that its opinions and reports consider the needs of people with dementia, their families and carers. AE worked closely with its member associations and organised two meetings with public affairs representatives to discuss EU policy developments and to have an active exchange on national lobbying and campaigning activities.

The Yearbook published in 2018 examines dementia strategies (or national plans) across European countries, with a specific view to providing a comparative overview of the priorities and areas of focus in relation to dementia. The information contained within this report was taken directly from the national strategies of each country, with a primary focus on the explicit commitments and actions contained within the documents. The report analysed information from 21 national dementia strategies, as well as two national neurodegenerative strategies. For Belgium and the United Kingdom (UK), the sub-state level strategies are provided (i.e. Flanders in Belgium, and England, Northern Ireland, Scotland and Wales for the UK).

2nd Joint Action on Dementia (Act on Dementia) meets in Barcelona, October 2018

ALZHEIMER EUROPE CORE ACTIVITIES

Keith Taylor, MEP (United Kingdom), February 2018 lunch debate

Marian Harkin, MEP (Ireland), host of December 2018 lunch debate

Objective 3: Promoting a rights-based approach to dementia As in previous operating grants, AE continued to focus on ethical issues in 2018 and this led to the publication of a report entitled “The development of intercultural care and support for people with dementia from Iva Holmerová presents our 2018 publications at EP lunch debate, minority ethnic groups”. The goal of this work was February 2019 to explore issues related to the need for and provision of intercultural care and support for people with dementia from minority ethnic groups in Europe. The report is targeted mainly at service developers and providers, health and social care professionals, policy makers and researchers. This is a topic of utmost importance in today’s society in the light of the ageing population, the increase in the number of older people from minority ethnic groups with dementia and low levels of uptake of services and support by people from these groups. The paper covers the following issues:

and care, stigma, pride and shame, the importance of religion and the importance of trust. At the end of each section, there is a summary box and recommendations/ points for reflection. The ethics group was chaired by Dianne Gove from Alzheimer Europe and the members of the group were Jean Georges (Luxembourg), Mohammed Akhlak Rauf (United Kingdom), Siiri Jaakson (Finland), Michal Herz (Israel), Daphna Golan-Shemesh (Israel), Debi Lahav (Israel), Rune (Thomas) Nielsen (Denmark), Sahdia Parveen (United Kingdom), Charlotta Plejert (Sweden), Ripaljeet Kaur (United Kingdom) and Carolien Smits (the Netherlands). This work was funded by the European Commission and the Robert Bosch Stiftung.

Background information about intercultural care and support Explanation of key terms and concepts Understanding dementia and attitudes towards help seeking Diagnosis, assessment and treatment Support and care Challenges encountered by professional and informal carers There are several themes which cut across the different sections of the report, namely language difficulties, issues related to interpretation, the role of the family in relation to care and support, cultural perceptions of dementia

Expert group meeting, August 2018, Amsterdam

ALZHEIMER EUROPE CORE ACTIVITIES

Objective 4: Supporting dementia research In 2018, Alzheimer Europe developed its Clinical Trials Watch which aims to provide accessible and up-to-date information on clinical trials that are investigating drugs for Alzheimer’s disease and/or dementia. This resource contains information on clinical trials that are: Currently recruiting participants Conducted in at least one European country In phase II or phase III. At the end of 2018, 7 ongoing Phase II and 11 ongoing Phase III clinical trials recruiting participants in Europe were included on the AE website. These trials are listened in the table below:

28AEC opening ceremony speaker panel, Barcelona, October 2018

Table 1: Clinical Trials Watch Phase Study

Study sponsor

Name of the drug

Condition

Abvac40

Araclon Biotech

Abvac40

Amnestic mild cognitive impairment or very mild Alzheimer’s disease

ACI-24-1801

AC Immune

ACI-24

Mild Alzheimer’s disease

ETHERAL

Oryzon

ORY-2001

Mild-moderate Alzheimer’s Disease

MAPT-CS1

Ionis Pharmaceuticals

IONIS MAPTRx

Mild Alzheimer’s disease

RO7105705

Genentech

RO7105705

Prodromal to Mild Alzheimer’s Disease

TANGO

Biogen

BIIB092

Early Alzheimer’s Disease

VALZ-PILOT

Hugo Lovheim

Valaciclovir

Early Alzheimer’s Disease

III

COGNITE

AZTherapies

ALZT-OP1

Evidence of early Alzheimer’s disease

III

GENERATION S1 Novartis

CAD106 and CNP520

Risk of developing Alzheimer’s dementia

III

GENERATION S2

Novartis

CNP520

Risk of developing Alzheimer’s dementia

III

GRADUATE 1 & GRADUATE 2

Hoffmann-La Roche

Gantenerumab

Prodromal to mild Alzheimer’s disease

III

HARMONY

ACADIA Pharmaceuticals Inc. Pimavanserin

People with dementiarelated psychosis

III

LUCIDITY

TauRx Therapeutics Ltd

TRx0237

Mild Alzheimer’s disease

III

MissionAD1 & MissionAD2

Eisai

Elenbecestat

Early Alzheimer’s disease

III

SYMBAD

University of Sussex

Mirtazapine and Carbamazepine

Alzheimer’s disease and agitated behaviours

III

17-AVP-786-305

Avanir Pharmaceuticals

AVP-786

Agitation in people with dementia of the Alzheimer’s type

ALZHEIMER EUROPE CORE ACTIVITIES

Alzheimer Europe also continued to report on scientific developments via its dissemination channels which are its website, newsletters, social media activities and its Annual Conference.

well as publishing accounts written by people living with dementia. A total of 661 articles were featured in AE’s 2018 monthly e-newsletter (661 in 2017). They can be broken down into categories, as seen in graph 1.

In 2018, AE published 11 editions of its monthly newsletter, except for July and August which were combined. These e-newsletters contained information on AE’s activities and those of its member organisations, as well as updates on projects in which AE is involved. AE also reported on interesting policy initiatives both at national and European level, including news about the European Alzheimer’s Alliance and its members’ activities related to action on dementia. It also reported on scientific developments, human interest stories, new resources and publications and job opportunities, as

The AE newsletter had 7,967 subscribers at the end of 2018 (7,726 in 2017). In 2018, AE’s website saw a reduction in visitors which declined from a high of 651,122 in 2017 to only 537,292 in 2018. However, the statistics are only partly representative as the website stopped being indexed on Google, which partly explains the apparently significant drop in visitors from June onwards.

Graph 1: Number of articles

200

185

2018

169 160

150 Number of articles

100

150

2017 143

140 120

100 68

72 57

50 41

Activities and projects of Alzheimer Europe

European policy developments in the field of dementia and European Alzheimer’s Alliance

National policy developments

Activities and projects of AE member organisations

Scientific developments

Dementia in Society and “Living with dementia” section

New resources and publications, education and job opportunities

Graph 2: Number of visitors

Number of visitors

80,000 60,000

2018 63,321

60,743 51,084

40,000

40,272

2017

68,384 61,254

64,236

67,789 48,139

54,156

61,643

59,982 56,524 46,846

50,572

47,625

56,683 44,728

41,552 46,569

36,122

37,056 25,598

20,000

19,702

0 Jan

Feb

Mar

Apr May

Jun 15

Jul

Aug

Sep Oct

Nov

Dec

ALZHEIMER EUROPE CORE ACTIVITIES

The organisation also continued to develop its social media presence, particularly on Facebook and Twitter.

All AE team members who are involved in projects and attend AE events are active Twitter users, tweeting from events where they represent the organisation. The total number of Tweets by AE and its team members in 2018 was 2,504 (2,730 in 2017) and tweet impressions reached 2.94 million (2.19 million in 2017). The table below shows AE’s own Twitter account activity in 2018:

AE’s Facebook page registered 7,633 “likes” at the end of 2018, an increase from 7,175 likes at the end of 2017. As for Twitter, the association had reached over 9,000 followers at the end of 2018 (7,500 at the end of 2017).

Table 2: Twitter statistics Month

Tweets

Tweet impressions

New followers

January

115,000

105

February

155

201,000

114

March

112

208,000

125

April

127,000

114

May

126,000

104

June

162,000

121

July

90,300

112

August

77,400

September

107,000

203

October

182

186,000

261

November

148,000

December

106

129,000

Total:

1,142

1,676,700

1,483

The 28th Alzheimer Europe Conference (#28AEC) took place in Barcelona, Spain from 29–31 October 2018, under the Honorary Patronage of Her Majesty Queen Sofía of Spain and was organised together with CEAFA and Fundación Alzheimer España, the two Spanish Alzheimer’s associations.

with Dementia and the sponsors of the AE Conference. The conference ended with an invitation to attend the 29th Alzheimer Europe Conference (#29AEC) in The Hague in 2019.

The event was organised under the theme of “Making dementia a European priority” and was attended by 816 participants from 46 countries (in 2017 the Berlin conference was attended by 742 participants from 41 countries), including 34 people with dementia. The programme featured 289 speakers delivering oral presentations and 175 poster presentations. The opening ceremony had participation from representatives of the Spanish Ministry of Health and the City of Barcelona. The four plenary sessions were dedicated to “Dementia as a policy priority”, “Dementia as a human rights priority”, “Dementia as a care priority” and “Dementia as a research priority”. In addition to the four plenaries, delegates at #28AEC had the choice of 28 different parallel sessions in English, 4 parallel sessions in Spanish and four special symposia organised by the European Working Group of People

Dr José Luis Molinuevo from BarcelonaBeta Brain Research Center giving keynote lecture at 28AEC

ALZHEIMER EUROPE CORE ACTIVITIES

Objective 5: Strengthening the European dementia movement Challenges for the introduction of Alzheimer’s innovation and new Alzheimer’s treatments for Alzheimer’s associations, healthcare systems and society Promoting the participation of people with dementia in research Prevention of dementia using mobile phone applications in the framework of the PRODEMOS project.

The target groups for the activities undertaken under the 2018 work programme were primarily the volunteers and staff members of national Alzheimer’s associations who could benefit from the series of capacity building activities carried out by Alzheimer Europe as part of its Alzheimer’s Association Academy. In 2018, Alzheimer Europe organised three of these capacity building events on 28 March, 27 June and on 4 and 5 December in Brussels.

The Alzheimer Europe Board met four times (February, June, October and December) during the year and monitored the activities and finances of the organisation in relation to the agreed upon Work Plan and Budget.

The following issues were covered during these workshops: National campaigning activities National dementia strategies World Health Organisation activities on dementia Global Dementia Observatory iSupport programme for carers of people with dementia Involvement of patients in the medicines lifecycle in the framework of the PARADIGM project Involving carers of people with dementia in Alzheimer’s associations Involving people with dementia in Alzheimer’s associations

The Annual General Meeting of Alzheimer Europe took place on 29 October in the framework of the AE Conference in Barcelona. At the meeting, the delegates adopted AE’s 2017 Annual and Financial reports and approved the 2019 Work Plan and Budget. The Annual General Meeting also welcomed the Alzheimer’s associations of Estonia and North Macedonia as new provisional members and elected a new Board with Iva Holmerová (Czech Republic) as Chairperson, Charles Scerri Malta) as Vice-Chairperson (Malta), Jim Pearson (Scotland, United Kingdom) as Honorary Secretary,

INTERDEM meeting, Barcelona, October 2018

ALZHEIMER EUROPE CORE ACTIVITIES

Maria do Rosário Zincke dos Reis (Portugal) as Honorary Treasurer (Portugal), Helen Rochford-Brennan (Ireland) as the ex-officio member of the Board as the Chairperson of the European Working Group of People with Dementia and the following representatives as members:

the European Accessibility Act, as well as engaging with COFACE around their work on the Work-Life Balance Initiative of the European Commission. Alzheimer Europe also engaged with a number of policy forums to ensure the perspectives of people with dementia were included, as well as to support the horizon scanning and lobbying activities of Alzheimer Europe. This included engaging with EFPIA Patient Think Tank, the EDF’s European NGOs and the Core Group of the EU4Health campaign group.

Stefanie Becker (Switzerland) Marco Blom (Netherlands) Sabine Jansen (Germany) Pat McLoughlin (Ireland) Sirpa Pietikäinen (Finland) Jesús Rodrigo (Spain) Karin Westerlund (Sweden)

Alzheimer Europe also continued its cooperation with INTERDEM, a pan-European research network for psychosocial interventions in dementia. Several of them were speakers at the conference and also participated in the selection of topics to be addressed.

As in previous years, Alzheimer Europe was an active member of the European Patients’ Forum (EPF) and contributed, alongside other European organisations, to the development of cross-disease positions on EU consultations and legislative proposals, as well as contributing to EPF’s Access to Healthcare campaign.

In 2018, Alzheimer Europe also signed a Memorandum of Understanding outlining its collaboration with the European Academy of Neurology (EAN) and the organisation’s Executive Director was asked to join the EAN Dementia Panel and the Task Force for the development of a guideline on medical management issues in dementia.

AE also further developed its ties with the European Disability Forum which the organisation had joined as an ordinary member at the end of 2016. In 2018, AE continued to support and contribute to the EDF campaign on

Participants and speakers at the 4th Alzheimer's Association Academy, December 2018

OTHER ACTIVITIES AND PROJECTS

Other activities and projects Involvement in EU projects Alzheimer Europe has been a full partner in a number of projects funded by the European research programmes Horizon2020, FP7 and the Innovative Medicines Initiative. In these projects, the organisation typically ensures the views of people with dementia, carers and Alzheimer’s associations are included, contributes to the discussion of the ethical issues raised by the projects and supports or leads the dissemination activities. In 2018, AE supported the following projects.

AETIONOMY

AD-Detect-Prevent

The AETIONOMY Steering Committee held its final meeting in July at Alzheimer Europe’s office in Luxembourg, and was represented by Jean Georges and Dianne Gove at the final meeting of the Legal and Ethics Advisory Board meeting for the AETIONOMY project in Vienna (Austria).

The AETIONOMY project which aims 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, ended in 2018. It involved the collection of clinical data, imaging and genetic data and the creation of a new way to combine all of these together to look for patterns which could identify sub-groups of patients with similar causes of their disease.

The two-year AD-Detect-Prevent project, which officially started on 1 November, aims to develop an easily accessible, user-friendly and motivating digital medical device called AD Detect & Prevent. This will be delivered on tablets, smartphones and computers. If successful, this will offer pre-symptomatic detection of AD and personalised AD prevention programmes in the form of computerised cognitive training and behavioural/lifestyle interventions in one seamless product. Whilst predominantly targeted at people at risk of developing Alzheimer’s dementia, it may eventually be valuable for people with mild cognitive impairment or mild dementia. Alzheimer Europe will contribute towards Public and Patient Involvement, ethical issues and dissemination.

AD Detect-Prevent coordinator Kim Baden-Kristensen on the discussion panel at an Innovative Medicines Initiative meeting

AETIONOMY meeting, December 2018

OTHER ACTIVITIES AND PROJECTS

AMYPAD

EPAD

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� The consortium is led by Stichting VUmc and GE Healthcare Life Sciences� The partners aim to improve knowledge of the natural history of AD in a pre-symptomatic stage, in order to better select patients for trials� In addition, they will monitor changes in beta amyloid deposition in the brain, in order to quantify the impact of novel therapies�

EPAD, the European Prevention of Alzheimer’s dementia initiative is a collaborative research project funded by the Innovative Medicines Initiative to improve the chance of successfully preventing Alzheimer’s dementia and to better understand early aspects of Alzheimer’s disease before dementia develops� Led by the University of Edinburgh, the project will establish a European-wide register of research participants, of which a number will be invited to participate in a proof-of-concept trial to test new treatments for the prevention of Alzheimer’s dementia�

Alzheimer Europe is co-leading Work Package 6: Ethics, communication and dissemination� Alzheimer Europe was represented by Cindy Birck and Jean Georges, who organised and chaired the bi-weekly teleconference meetings� They coordinated the production and the regular maintenance of the communication tools (i�e� website, newsletter, Twitter account, ResearchGate, slide deck, YouTube)� Cindy Birck also attended the General Assembly meeting in Berlin (Germany) where she presented the projects’ communication and dissemination activities� Jean Georges also regularly attended the weekly telephone conferences of the AMYPAD Executive Committee� The AMYPAD project was also presented in more details by Isadora Lopes Alves at the 28th Alzheimer Europe Conference held in Barcelona in October�

Alzheimer Europe is co-leading the Work Package 6: Dissemination with the participation of Jean Georges and Cindy Birck in several WP6 meetings throughout the year including monthly WP6 teleconferences, the WP6 faceto-face meeting in October in Amsterdam (Netherlands) and the General Assembly meeting in May in Amsterdam� They also regularly disseminated project information via social media on Twitter and Facebook, articles on the EPAD project website and contributed to the quarterly external newsletters and the EPAD press release� They contributed to the development of the new EPAD website launched in July 2018, the EPAD ResearchGate page and the EPAD YouTube channel� They were responsible authors of the deliverable D6�4 (Updated communication plan, tools and materials) and supported the activities related to the Longitudinal Cohort Study� Jean Georges also attended the monthly telephone meetings of the Clinical Development Executive (CDEx) and had an active involvement in the Publications Approval Committee� Cindy Birck also supported the EPAD Academy to ensure good dovetailing with the communication policy and tools�

In addition, Dianne Gove was active in the ethics subgroup and contributed to several telephone conferences of the ethics work package�

The EPAD project was also presented by Stina Saunders at the 28th Alzheimer Europe Conference held in Barcelona (Spain) in October� Her talk focused on engaging research participants as collaborators working towards a common goal with the study team� The 28th issue of the Dementia in Europe magazine launched at the 28th Alzheimer Europe Conference featured an article on the significant progress made by the EPAD project in 2018�

AMYPAD General Assembly, Berlin, October 2018

OTHER ACTIVITIES AND PROJECTS

Alzheimer Europe was represented by Jean Georges and Christophe Bintener at several meetings throughout the year, including a consortium meeting in September where Christophe gave a presentation on best practice in communication activities and lessons learned from AEs involvement in the ROADMAP project� Jean and Christophe regularly contribute to the discussions of the Communication and Dissemination work package in bi-weekly telephone conferences� Christophe Bintener also regularly contributed to raising the profile of the project via social media and contributed articles to the MOPEAD project website as well as to the development of the project newsletter�

Dianne Gove also contributed towards discussions within the ethics work package, including a face-to-face meeting during the EPAD general assembly meeting in Amsterdam (the Netherlands) in May 2018� The ethics working group discussed the format and role of the central participant panel and reflected on the learning process as well as the role and impact of the ethical, legal and social implications of the EPAD project� In September, Dianne Gove and Ana Diaz, together with the Chair of the EWGPWD, Helen Rochford-Brennan, hosted a webinar on the work led by AE in Public and Patient Involvement (PPI) in dementia research� The webinar was part of a series of webinars organised by the EPAD academy� It was attended by 20 members of EPAD, including some EPAD fellows� The presentation provided information about the understandings and definition of PPI in research and addressed some of the challenges and opportunities of conducting PPI in the field of dementia� Presenters also provided concrete examples of involving people living with dementia in different European projects and research through PPI� The Chair of the EWGPWD referred to the relevance of PPI from the perspective of a person living with dementia and to her own personal experience of being involved in PPI activities�

Alzheimer Europe also led the development of a 12-page MOPEAD special supplement for the October edition of the Dementia in Europe Magazine with a print of 3,200 copies which were distributed during Alzheimer Europe’s 28th Annual Conference in October where the project held a special symposium� Jean Georges, Dianne Gove and Christophe Bintener also contributed to a project overview article, which they co-authored along with other project contributors, that has been submitted for peer review in a scientific journal�

MOPEAD consortium meeting

PACE EPAD General Assembly, Amsterdam, May 2018

The aim of PACE is to compare the effectiveness of palliative care at the end of life for elderly people with and without dementia in long-term care facilities in Europe� This project is coordinated by the Vrije Universiteit Brussel in Belgium�

MOPEAD MOPEAD or “Models of Patient Engagement for Alzheimer’s Disease” will provide an effective interface between existing efforts in the field (e�g� EMIF and EPAD), in order to identify and test models of efficient earlier identification of mild AD dementia and prodromal AD�

In 2018, Ana Diaz and Dianne Gove regularly contributed to the discussions of the Impact/Dissemination work package and took part in the PACE General Assembly in Antwerp (Belgium) in April�

OTHER ACTIVITIES AND PROJECTS

PRODEMOS

They developed policy recommendations based on consultations with relevant stakeholders, including members of the EWGPWD and AE’s member associations, together with AGE Platform and the other research partners, and incorporating some of the key issues addressed in the study. Kate Boor Ellis also regularly contributed to raising the profile of the project via social media activity on the PACE Twitter account and contributed articles to the PACE project website.

The PRODEMOS (Prevention of Dementia using Mobile phone Applications) project kicked off in January 2018. This project aims to make an evidence-based dementia prevention strategy using mobile Health accessible to those at increased risk of dementia who are usually not reached by preventive medicine. From a global perspective, the project will target socio-economically deprived populations in the EU and a population at risk of dementia in China. The final aim is to implement this flexible, fully adaptable mHealth platform in a culturally appropriate form in a range of health care settings across the globe. Cindy Birck and Jean Georges attended the kick-off meeting in 2018 in Amsterdam (Netherlands) and the General Assembly Meeting held in September in Toulouse (France). They also regularly attended the monthly telephone conferences of the PRODEMOS WP leads. The 27th issue of the Dementia in Europe magazine published in June 2018 included a two-page article on this new collaborative initiative aiming to develop a mobile health application to prevent dementia. The project also held a special workshop during the organisation’s Alzheimer’s Association Academy in December.

PACE User Forum, Brussels, March 2018

PARADIGM PARADIGM is a European IMI-funded project, which started in March 2018. PARADIGM seeks to improve patient engagement in the medicines lifecycle. Alzheimer Europe is part of this project and its role is to ensure that the voices of people affected by dementia are taken into account in the project. AE is involved in all work packages of the project and has participated in several meetings and activities related to the different work streams. In June, Ana Diaz and Dianne Gove, with support from members of the PARADIGM consortium, organised a consultation with the EWGPWD about the expectations and specific needs of people with dementia.

PRODEMOS kick-off, Amsterdam, January 2018

The members of the EWGPWD and their supporters also participated in the online survey about patient engagement, and two members of the EWGPWD and a supporter have been actively involved in the PARADIGM Delphi study to develop a set of criteria to assess patient engagement practices. Chris Roberts, Vice Chair of the EWGPWD, wrote a blog about the relevance of patient engagement in dementia.

ROADMAP The “Real world outcomes across the Alzheimer’s disease spectrum for better care: multi-modal data access platform” project, which concluded at the end of October 2018, provided the foundation for an integrated data environment and framework for real-world evidence (RWE) in Alzheimer’s disease. This included the development of consensual key outcome measures and data integration tools for dataset characterisation and outcome classification, as well as guidelines on the handling and interpretation of RWE data. Alzheimer Europe was represented by Jean Georges, Dianne Gove and Christophe Bintener at several project meetings throughout the year.

PARADIGM consultation with EWGPWD, June 2018

OTHER ACTIVITIES AND PROJECTS

Alzheimer Europe co-led the work package on Communication and Patient/Healthcare Provider Engagement. This involved the further development and maintenance of the project website, social media, information materials (such as a conference brochure) and articles on the project aims, progress and results as well as a quarterly circulated external newsletter, amongst other activities.

with the EWGPWD on ethical issues linked to the sharing of data. Dianne Gove was part of the ethics work package and contributed to a systematic literature review on the ethics of predictive modelling for AD secondary prevention. Jean Georges and Christophe Bintener contributed to a project overview article, which they co-authored along with the project’s principal investigators. The article has been successfully published in the peer-reviewed Journal of Alzheimer’s Disease.

Christophe led the production of the final report on dissemination activities (including impact measures) and project tools developed (Deliverable 7.5). He also liaised with the communication teams of the overarching Big Data for Better Outcomes (BD4BO) programme on behalf of ROADMAPs communication team.

Christophe also co-authored an article on a systematic review about outcomes that are important to patients with mild cognitive impairment or Alzheimer’s disease, their caregivers, and health-care professionals, which has been published in the peer-reviewed journal Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring.

Alzheimer Europe also jointly organised (in cooperation with the project management) presentations on project activities and results at the 28th Alzheimer Europe Conference. This included a plenary talk by Project Coordinator, John Gallacher, as well as four parallel sessions. In June, Mia Nelson (Edinburgh University) from ROADMAP came to the EWGPWD quarterly meeting to present the findings from an earlier consultation with the group on real world outcomes. Dianne Gove and Ana Diaz also provided feedback on another ROADMAP consultation

ROADMAP General Assembly, Madrid, October 2018

Support of European research activities In addition to the projects described above, Alzheimer Europe played a minor role and supported a number of other European research projects.

technologies they had been working on by means of a demo-market. Discussions were held on a wide range of topics including ethics, equal representation and communicating about research.

INDUCT

Sébastien Libert, one of the INDUCT ESRs, based at University College London, continued his secondment with Alzheimer Europe, part of which involved providing support during the quarterly meetings of the EWGPWD.

Alzheimer Europe’s main role in the Interdisciplinary Network for Dementia Using Current technology (INDUCT) project is to facilitate interaction between researchers and people with dementia in the context of research into technology use. In January, Helga Rohra, member of the EWGPWD, participated in the INDUCT winter school in Witten (Germany). In December, the European Working Group of People with Dementia (EWGPWD) was consulted by a group Early Stage Researchers (ESRs) from INDUCT in Brussels. The ESRs asked the members of the working group for feedback on their projects and demonstrated the

INDUCT school Witten January 2018

OTHER ACTIVITIES AND PROJECTS

MinD

SyDAD

Alzheimer Europe continued its involvement in the MinD (Designing for People with Dementia) project, which aims to help people with dementia engage in social contexts to improve psychosocial wellbeing� The concept of mindful design is used in the context of this project to investigate innovative design solutions, in order to enable self-empowerment and confidence building of people living with dementia� In June, Alzheimer Europe, which is represented by Ana Diaz and Dianne Gove in this project, co-hosted together with the University of Luxembourg, a two-week visit of the project partners in Luxembourg�

SyDAD (Synaptic Dysfunction in Alzheimer’s Disease) is a European Training Network sponsored by Horizon2020 Marie Sklodowska Curie Actions� The research programme supports 15 Early Stage Researchers (ESRs, PhD students) with an interest in the area of Alzheimer’s disease and synaptic dysfunction� The project is led by the Department of Neurobiology, Care Sciences and Society at Karolinska Institutet (Sweden)� Alzheimer Europe is a partner organisation in this project supporting the dissemination activities� Cindy Birck attended the SyDAD annual meeting in May in Milan (Italy) on behalf of Alzheimer Europe� The 26th issue of the Dementia in Europe magazine published in February 2018 included an article on the involvement of young researchers in a number of European research projects or networks in which Alzheimer Europe is partnering� There, several SyDAD early stage researchers reported their involvement in the SyDAD project and talked about their participation at the 27th Alzheimer Europe Conference�

MinD project team, September 2018

SPAN+ The SPAN+ project, which is led by Radboud University Medical Centre, aims to develop an effective empowerment intervention for people with dementia at home and in care homes� In 2018, members of the European Working Group of People with Dementia shared their perspectives on the concept of empowerment and Dianne Gove and Ana Diaz contributed towards the design and conduct of an online survey between May 2018 and July 2018 amongst Alzheimer Europe’s member associations� SyDAD meeting, Milan, May 2018

Alzheimer Europe and the EWGPWD will continue to be involved in this project over the next three years� This is a national project but the researchers will be considering the potential transferability of the end intervention within the European context�

OTHER ACTIVITIES AND PROJECTS

Corporate affairs European Parliament lunch debates

On 27 February 2018, MEP Nessa Childers hosted an Alzheimer Europe lunch debates in the European Parliament on the topic “Will we be able to prevent Alzheimer’s dementia?”. Prof. Kate Irving (Dublin City University, Ireland) presented the In-MINDD project on reducing dementia risk by targeting modifiable risk factors in mid-life. Edo Richard (Amsterdam and Radboud University Medical Center, Nijmegen, Netherlands) explained EDPI – the European Dementia Prevention Initiative. Craig Ritchie (Center for dementia prevention, Edinburgh, UK) updated on the EPAD project. Iva Holmerová (Alzheimer Europe Chairperson,

Czech Republic) launched the Alzheimer Europe Yearbook 2017 on standards for residential care facilities in Europe and Dementia as a disability? Implications for ethics policy and practice – A discussion paper. On 26 June 2018, MEP Olga Sehnalová hosted an Alzheimer Europe lunch debate in the European Parliament on “Dementia care in the European Union”. Mario Possenti (Federazione Alzheimer Italia, Italy) highlighted the impact of dementia on carers and families. Prof. Bob Woods (University of Bangor, United Kingdom) gave an update on the experience of carers of a diagnosis of dementia: results of a five-country survey. Sarah Schinazi (DG EMPL, European Commission) gave an overview of the role of the European Union in supporting carers: the European Pillar of Social Rights. On 4 December 2018, MEP, Marian Harkin hosted an Alzheimer Europe lunch debate in the European

Speakers Edo Richard and Craig Ritchie, February 2018 lunch debate

Prof. Bob Woods presents carers' survey results, June 2018 lunch debate

In 2018, Alzheimer Europe organised three successful lunch debates in the European Parliament in Brussels:

Speaker panel, December 2018 lunch debate

OTHER ACTIVITIES AND PROJECTS

Parliament which focused on dementia as a priority of the EU health programme� Geoff Huggins (Scottish Government and European Joint Action on Dementia, UK) presented “The European Joint Action on Dementia: Collaborating among European countries to improve the lives of people with dementia and their carers”� Jean Georges (Alzheimer Europe, Luxembourg) presented “Alzheimer Europe – making dementia a European priority”� which was followed by a discussion with EU officials and health ministry officials from EU countries All lunch debates were well-attended, with delegates from the European Parliament and Commission, the pharmaceutical industry and AE member associations� Speaker Geoff Huggins, December 2018 lunch debate

Dementia in Europe magazine

Carers’ Survey

In 2018, Alzheimer Europe published three issues of the Dementia in Europe magazine� The magazines featured a variety of articles on policy developments, including interviews with the following national and European policy makers:

Thanks to an educational grant from Roche, Alzheimer Europe and its member organisations from the Czech Republic, Finland, Italy, the Netherlands and the United Kingdom (Scotland) collaborated with the University of Bangor to develop and translate a questionnaire targeted at carers to better understand the diagnostic process, experiences of carers and existing barriers�

Adalberto Campos Fernandes, the Portuguese Minister of Health Vaughan Gething, Welsh Cabinet Secretary for Health and Social Services Carlos Moedas, EU Commissioner for Research, Science and Innovation

A total of 1,409 carers, from these five countries participated in the study� While the top line results of the study were launched at the AE Annual Conference in Berlin in 2017, the more detailed findings of the study were disseminated via a report authored by Alzheimer Europe and via a scientific article entitled “Timely diagnosis of dementia? Family carers’ experiences in 5 European countries”, which was published in the peer reviewed International Journal of Geriatric Psychiatry�

The 2018 issues include articles on the new dementia strategy in Portugal, the commitment to develop a strategy in Sweden, European level projects including the second EU Joint Action on Dementia, as well as a focus on research programmes such as EPAD� Issue 28 also included a supplement dedicated to the MOPEAD Project�

ANNEX 1 2018 MEETINGS

Annex 1: Meetings attended by AE representatives Meetings organised by Alzheimer Europe in the framework of the 2018 Operating Grant Date

Meeting

Venue

26–27 February

AE Board

Brussels, Belgium

28 February

AE Public Affairs Meeting

Brussels, Belgium

19–20 March

European Working Group of People With Dementia

Münsbach, Luxembourg

18 May

AE ethics meeting on intercultural care and support for minority ethnic groups

Bradford, UK

25–26 June

AE Board

Brussels, Belgium

26–28 June

European Working Group of People With Dementia

Brussels, Belgium

27 June

AE Public Affairs Meeting

Brussels, Belgium

22 August

Second Alzheimer Europe ethics working group

Amsterdam, Netherlands

28 October

European Working Group of People With Dementia

Barcelona, Spain

29 October

AE Board

Barcelona, Spain

29–31 October

AE Conference “Making dementia a European priority”

Barcelona, Spain

3–4 December

AE Board

Brussels, Belgium

4–5 December

Alzheimer’s Associations Academy

Brussels, Belgium

Meetings attended by AE representatives in the framework of the 2018 Operating Grant Date

Meeting

Venue

15 January

Site inspection of hotels

Brussels, Belgium

18 January

Meeting with Visual online

Luxembourg, Luxembourg

30 January

Meeting with Lufthansa & HRG

Luxembourg, Luxembourg

2 February

EPF – Workshop on Incentives

Brussels, Belgium

8–9 February

Joint Action – WP Residential Care

The Hague, Netherlands

12–13 February

Meeting with hotel, AV team & suppliers

Barcelona, Spain

21 February

Public Hearing on work/life balance initiative

Brussels, Belgium

21 February

Meeting on barriers to preventing frailty

Brussels, Belgium

21 February

Meeting on Brexit: prioritising patient safety and public health across Europe

Brussels, Belgium

13 March

COFACE Families Europe

Brussels, Belgium

13 March

European Disability Forum

Brussels, Belgium

ANNEX 1 2018 MEETINGS

Date

Meeting

Venue

15 March

Workshop on dementia and black and minority ethnic communities – Bristol Professionals

Bristol, United Kingdom

28 May

Meeting with CHAFEA

Luxembourg, Luxembourg

29–30 May

Programme Board of EU Joint Action on Dementia

Utrecht, Netherlands

2 July

Conference venue study visit

Barcelona, Spain

11 July

European Medicines Agency Scientific Advice Meeting London, United Kingdom

18 July

Conference field visit

The Hague, Netherlands

3 September

28AEC preparations

Barcelona, Spain

9 September

European Public Health Alliance Core Group Meeting

Brussels, Belgium

19 September

Meeting with a member of the European Economic and Social Council

Brussels, Belgium

25 September

Meeting of the ‘Patients’ and Consumers’ Working Party of the European Medicines Agency

London, United Kingdom

27 September

Event in EP hosted by European health and patient organisations focussing on Brexit

Brussels, Belgium

27–29 September

ICCA Workshop

Valencia, Spain

8 October

EPF-Medicines for Europe Annual Dialogue

Brussels, Belgium

9 October

Universal Access to Health event – EPF/MfE

Brussels, Belgium

21–22 October

Patient Advocacy Seminar – EPF

Brussels, Belgium

Other meetings organised by AE or attended by AE representatives in 2018 Date

Meeting

Venue

15–16 January

PRODEMOS kick-off meeting

Amsterdam, Netherlands

16 January

BD4BO DO->IT WP3 face to face discussion

Brussels, Belgium

25–26 January

DISTALZ Scientific Advisory Board meeting

Lille, France

29–31 January

PredictND preparation for final audit

Saariselkä, Finland

30 January

MSD Roundtable

Brussels Belgium

8 February

INTERDEM meeting

Brussels, Belgium

20 February

Meeting with Alzheimer’s Disease International

London, UK

26 February

AE Foundation Board

Brussels, Belgium

27 February

EP Lunch debate “Will we be able to prevent Alzheimer’s dementia?”

Brussels, Belgium

27 February

AE Company round table meeting

Brussels, Belgium

8 March

2nd PACE User Forum

Brussels, Belgium

13–14 March

European Alzheimer’s Disease Consortium

Turin, Italy

15–16 March

AD/PD Conference

Turin, Italy

21 March

Forum Demenz

Esch/Belval, Luxembourg

22 March

EFPIA Think Tank

Brussels, Belgium

22 March

ROADMAP WP2 meeting

Edinburgh, Scotland

26 March

AMYPAD WP3 Meeting

Barcelona, Spain

10 April

Nordic Dementia Council

Stockholm, Sweden

16–18 April

EMIF final project meeting & public symposium

Brussels, Belgium

ANNEX 1 2018 MEETINGS

Date

Meeting

Venue

23 April

DPUK conference

London, UK

23 April

RADAR-AD meeting

Brussels, Belgium

23–24 April

PACE consortium meeting

Antwerp, Belgium

25–26 April

ROADMAP 5 General Assembly Meeting

Barcelona, Spain

3 May

Meeting with GSK

London, United Kingdom

7–8 May

Scientific Advisory Committee of Neighbourhoods and Dementia Study

Manchester, United Kingdom

7–8 May

SyDAD annual meeting

Milan, Italy

9–11 May

Workshop “Harmonising Neuropsychological Assessment for Dementia in Europe”

Geneva, Switzerland

12–14 May

ICCA AES Conference

Frankfurt, Germany

14–16 May

IMEX Conference

Frankfurt, Germany

23–25 May

EPAD General Assembly Meeting

Amsterdam, The Netherlands

28 May

Living with dementia in rural Ireland Conference

Connemara, Ireland

5 June

PARADIGM WP1 meeting

Brussels, Belgium

5–6 June

EAN Guideline meeting “Medical management issues in dementia”

Vienna, Austria

7–9 June

M&I Forum

Dubrovnik, Croatia

14 June

Clinnova Scientific Advisory Board meeting

Esch/Belval, Luxembourg

14 June

EFPIA Patient Think Tank Meeting

Brussels, Belgium

16–19 June

EAN Congress

Lisbon, Portugal

16–19 June

Meeting with EAN representatives

Lisbon, Portugal

21 June

Meeting with Essity

Luxembourg, Luxembourg

22 June

Meeting with Zitha-Senior

Luxembourg, Luxembourg

26 June

EP Lunch debate “Dementia care in the European Union”

Brussels, Belgium

26 June

AE Company round table meeting

Brussels, Belgium

26 June

AE & Essity meeting on continence care

Brussels, Belgium

5 July

AETIONOMY Meeting

Luxembourg, Luxembourg

13 July

ADDIA Project Meeting

Strasbourg, France

16 July

Meeting with LuxInnovation

Luxembourg, Luxembourg

18 July

PARADIGM WP3 meeting

Brussels, Belgium

21 July

Biogen Global Alzheimer’s Advocacy Board

Chicago, USA

22–26 July

Alzheimer’s Association International Conference

Chicago, USA

25 July

ADI meeting Elected Board

Chicago, USA

26 July

ADI Council meeting

Chicago, USA

27–29 July

ADI Conference

Chicago, USA

12–13 September

MOPEAD General Assembly meeting

Barcelona, Spain

13–14 September

EAHSA-Conference “Is here a future of long-term care in Europe?”

Prague, Czech Republic

26 September

EFPIA Think Tank

Brussels, Belgium

27–28 September

PRODEMOS General Assembly meeting

Toulouse, France

1 October

Common speaking experts 2018 conference

Budapest, Hungary

3–6 October

CROCAD 2018 conference

Novigrad, Croatia

ANNEX 1 2018 MEETINGS

Date

Meeting

Venue

4–5 October

EPAD WP6 Meeting

Amsterdam, Netherlands

8–9 October

ROADMAP General Assembly Meeting

Barcelona, Spain

8–9 October

AMYPAD General Assembly Meeting

Berlin, Germany

9–10 October

Transforming Health Systems to Change the Course of Alzheimer’s Disease Workshop

Lausanne, Switzerland

17 October

Meeting Fonds national de la recherche

Esch/Belval, Luxembourg

22–23 October

IMI 10 Anniversary Scientific Symposium

Brussels, Belgium

24–27 October

Clinical Trials in Alzheimer’s Disease (CTAD) Conference

Barcelona, Spain

29 October

Annual Interdem meeting

Barcelona, Spain

29 October

6 meeting of the Programme Board of the European Act on Dementia Programme

Barcelona, Spain

6 November

Meeting with University of Eastern Finland

Amsterdam, Netherlands

26 November

Meeting with Israel’s Alzheimer’s Association – EMDA

Tel Aviv, Israel

27 November

30th Anniversary Conference of Israel’s Alzheimer’s Association – EMDA

Tel Aviv, Israel

3–4 December

Meeting of government experts on dementia

Brussels, Belgium

4 December

EP Lunch debate “Dementia as a priority of the EU health programme”

Brussels, Belgium

4 December

AE Company round table meeting

Brussels, Belgium

10 December

GSK Health Advisory Board

London, United Kingdom

11 December

Legal and Ethics Advisory Board meeting for the AETIONOMY project

Vienna, Austria

14 December

IMI Networking event – Pharma meets Academia

Dudelange, Luxembourg

ALZHEIMER EUROPE BOARD AND STAFF

Alzheimer Europe Board and staff Members of the Alzheimer Europe Board (2018–2020)

Iva Holmerová Chairperson (Czech Republic)

Charles Scerri Vice-Chairperson (Malta)

Jim Pearson Honorary Secretary (UK-Scotland)

Marco Blom (Netherlands)

Sabine Jansen (Germany)

Pat McLoughlin (Ireland)

Sirpa Pietikäinen (Finland)

Jesús Rodrigo (Spain)

Karin Westerlund (Sweden)

Maria do Rosário Zincke dos Reis Honorary Treasurer (Portugal)

Helen Rochford-Brennan Chairperson of EWGPWD (Ireland)

Alzheimer Europe staff members in 2018

Jean Georges Executive Director

Christophe Bintener Project Officer

Cindy Birck Project Officer

Kate Boor Ellis Communications Officer

Vanessa Challinor Policy Officer (till June 2018)

Ana Diaz Project Officer

Gwladys Guillory Event and Conference Coordinator

Dianne Gove Director for Projects

Owen Miller Policy Officer (from August 2018)

Grazia Tomasini Administrative Assistant

FINANCIAL REPORT

Report of the Réviseur d'entreprises agréé

FINANCIAL REPORT

BALANCE SHEET

Balance sheet as of December 31, 2018

PROFIT AND LOSS ACCOUNT

Profit and loss account Year ended December 31, 2018

BREAKDOWN OF INCOME

Breakdown of income Funding source

Core funding received (2018)

As % of AE core income (2018)

Project funding received (2018)

As % of AE Project income (2018)

Total funding received (2018)

As % of AE total income (2018)

As % of AE total income (2017)

Hoffmann-LaRoche

20,000

1.18%

40,000

6.44%

60,000

3.54%

3.53%

Lilly

10,000

0.59%

40,000

6.44%

50,000

2.95%

3.29%

Janssen

0.00%

40,000

6.44%

40,000

2.36%

0.59%

Biogen

9,903

0.58%

20,000

3.22%

29,903

1.77%

0.29%

Novartis

0.00%

25,000

4.03%

25,000

1.48%

1.47%

Otsuka

5,000

0.30%

20,000

3.22%

25,000

1.48%

1.18%

Income received on account

0.00%

22,281

3.59%

22,281

1.32%

4.13%

Pfizer

0.00%

20,000

3.22%

20,000

1.18%

GE Healthcare

0.00%

10,000

1.61%

10,000

0.59%

1.18%

MSD

0.00%

10,000

1.61%

10,000

0.59%

Abbvie

10,000

0.59%

0.00%

10,000

0.59%

Various companies

0.00%

5,254

0.85%

5,254

0.31%

0.18%

Lundbeck

0.00%

5,000

0.81%

5,000

0.30%

0.15%

Amgen

5,000

0.30%

0.00%

5,000

0.30%

GlaxoSmithKline

0.00%

2.09%

Eisai

0.00%

Merck

0.00%

1.47% 1.47%

Axovant

0.00%

0.88%

Deferred income

0.00%

-30,000

-4.83%

-30,000

-1.77%

Sub-total: Pharmaceutical funding

59,903

3.54%

227,534

36.64%

287,437

16.97%

23.08%

Nutricia

0.00%

10,000

1.61%

10,000

0.59%

0.88%

Essity

0.00%

10,000

1.61%

10,000

0.59%

Newsweaver

4,188

0.25%

0.00%

4,188

0.25%

The Publishing Bureau

1,275

0.08%

0.00%

1,275

0.08%

Hammond Care

0.00%

0.15%

Nestlé

0.00%

0.15%

Microsoft

0.00%

0.11%

Wi-Care

0.00%

0.07%

Sub-total: Other corporate sources

5,463

0.32%

20,000

3.22%

25,463

1.50%

2.20%

Total: Corporate funding

65,366

3.86%

247,534

39.86%

312,900

18.48%

25.28%

BREAKDOWN OF INCOME

Funding source

Core funding received (2018)

As % of AE core income (2018)

Project funding received (2018)

As % of AE Project income (2018)

Total funding received (2018)

As % of AE total income (2018)

As % of AE total income (2017)

European Commission

472,785

27.92%

349,917

56.35%

822,702

48.58%

46.97%

Irish Ministry of Health

4,000

0.24%

0.00%

4,000

0.24%

Total: Public funding

476,785

28.15%

349,917

56.35%

826,702

48.82%

46.97%

Robert Bosch Stiftung

100,000

5.90%

0.00%

100,000

5.90%

Fondation Alzheimer, Luxembourg

87,000

5.14%

0.00%

87,000

5.14%

5.12%

Various organisations

0.00%

8,512

1.37%

8,512

0.50%

0.68%

Radboud University

0.00%

6,851

1.10%

6,851

0.40%

Alzheimer Europe Foundation

0.00%

2,933

0.47%

2,933

0.17%

0.12%

Anglia Ruskin University

1,250

0.07%

901

0.15%

2,151

0.13%

Université de Lille

0.00%

2,000

0.32%

2,000

0.12%

University of Nottingham

0.00%

0.33%

University of Wolverhampton

0.00%

1,851

0.30%

1,851

0.11%

0.19%

NUI Galway

0.00%

0.07%

Deferred income

-50,000

-2.95%

0.00%

-50,000

-2.95%

Total: Foundations and organisations

138,250

8.16%

23,047

3.71%

161,297

9.52%

6.50%

Individuals (Conference fees, donations, publications)

214,907

12.69%

512

0.08%

215,419

12.72%

10.75%

Total: Individuals

214,907

12.69%

512

0.08%

215,419

12.72%

10.75%

AE member organisations

177,142

10.46%

0.00%

177,142

10.46%

10.50%

Total: Member organisations

177,142

10.46%

0.00%

177,142

10.46%

10.50%

Bank interest and similar

0.00%

0.01%

Total: Bank interest and similar

0.00%

0.01%

Total Income

1,072,485

100.00%

621,011

100.00%

1,693,496

100.00%

SPONSORS AND SUPPORTERS

Our sponsors and supporters

Fondation Alzheimer

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 – PARIS Hungarian Alzheimer Society PanhellenicFRANCE 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

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 Alzheimer Society ofIreland Ireland EMDA Alzheimer’s Association of Israel Federazione Alzheimer Italia Israel – TheThe 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 Society Association “Forget-me-not” Slovak Alzheimer’s 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 members are helping people Our with dementia and their their people with dementia and people with dementia and their Our32members are helping 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

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

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

The Alzheimer’s Association of Iceland

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

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

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

CROATIA BULGARIA– --ZAGREB VARNA BULGARIA VARNA

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

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 LUXEMBOURG – LUXEMBOURG JERSEY ––Association ST HELIER HELIER JERSEY ST JerseyAlzheimer’s Alzheimer’s Association

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 Alzheimerforeningen Alzheimerforeningen 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

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

MONACO –MONACO MONTE-CARLO MALTA MALTA–––MSIDA MSIDA MALTA MSIDA – MONTE-CARLO MALTA MSIDA MALTA ––MSIDA MSIDA MALTA – MSIDA MALTA –Society MALTA MSIDA MALTA –Association MSIDA Malta Dementia Dementia AMPA - –Association Monégasque pour pour AMPA -Dementia Monégasque Malta Dementia Society Malta Society Malta Society Malta Dementia Society Malta Dementia Society Malta Dementia Society Malta Dementia Society la sur recherche sur la maladie d’Alzheimer la recherche la maladie d’Alzheimer MONACO – MONTE-CARLO MONTE-CARLO MONACO ––MONACO MONTE-CARLO MONACO MONACO MONTE-CARLO –––MONTE-CARLO MONACO MONTE-CARLO MONTE-CARLO NETHERLANDS – AMERSFOORT MONACO –––MONACO MONTE-CARLO AMPA - Association Association Monégasque pour AMPA Monégasque pour MONACO MONTE-CARLO AMPA Association Monégasque pourpour la AMPA -–--Association Monégasque 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 maladie d’Alzheimer recherche sur la maladie AMPA Association Monégasque pour la recherche surlalad’Alzheimer maladie d’Alzheimer Alzheimer Nederland la recherche recherche sur la maladie maladie d’Alzheimer la sur la d’Alzheimer lalarecherche recherchesur surlalamaladie maladied’Alzheimer d’Alzheimer NORWAY – OSLO NETHERLANDS – AMERSFOORT AMERSFOORT NETHERLANDS NETHERLANDS ––AMERSFOORT

NETHERLANDS – AMERSFOORT MONTENEGRO ––PODGORICA Nasjonalforeningen Demensforbundet Alzheimer Nederland Alzheimer Nederland NORWAY –Alzheimer OSLO NETHERLANDS AMERSFOORT Nederland NETHERLANDS AMERSFOORT Alzheimer Nederland NETHERLANDS –––AMERSFOORT NVO Futura NETHERLANDS AMERSFOORT Nasjonalforeningen Alzheimer Nederland NederlandDemensforbundet Alzheimer Alzheimer AlzheimerNederland Nederland POLAND NORWAY––WARSAW OSLO

NORWAY––OSLO OSLO NORWAY NORWAY – OSLO Association Polish Alzheimer’s Nasjonalforeningen Demensforbundet

Nasjonalforeningen Demensforbundet Nasjonalforeningen Demensforbundet NETHERLANDS – AMERSFOORT Demensforbundet POLAND WARSAW NORWAY–––Nasjonalforeningen OSLO NORWAY OSLO Alzheimer Nederland NORWAY – OSLO NORWAY – OSLO Association Polish Alzheimer’s Nasjonalforeningen Demensforbundet Nasjonalforeningen Demensforbundet Nasjonalforeningen PORTUGAL – LISBON POLAND ––Demensforbundet WARSAW POLAND WARSAW Nasjonalforeningen Demensforbundet POLAND – WARSAW Alzheimer PortugalAssociation Polish Alzheimer’s Alzheimer’s Association Polish

Polish Alzheimer’s Association NORTH MACEDONIA – SKOPJE PORTUGAL – LISBON POLAND ––Disease WARSAW POLAND WARSAW Alzheimer Association of POLAND – Portugal WARSAW PORTUGAL LISBON Alzheimer Polish Alzheimer’s Alzheimer’s Association PORTUGAL –– LISBON Polish Association Macedonia PORTUGAL – LISBON AlzheimerAssociation Portugal Polish Alzheimer’s Alzheimer Portugal

Panhellenic of Alzheimer’s Disease and andFederation Related Disorders Disorders Disease Related

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

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

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 ––Alzheimer BUCHAREST PORTUGAL 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

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