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Annual Report 2017

Annual Reports


Preface

As the Chairperson of Alzheimer Europe, I am very pleased to introduce this year’s Annual Report highlighting Alzheimer Europe's activities in 2017.

As in previous years, our core activities were funded by the EU health programme, in the form of an operating grant from the European Commission. Alzheimer Europe and its member organisations are very grateful for this ongoing support to improve the lives of people with dementia along with their families and carers.

In 2017, people with dementia were involved in all aspects of AE's work. The European Working Group of People with Dementia (EWGPWD) met on a regular basis to develop and carry out activities such as participating in European research projects and speaking at international conferences. The group also organised a very popular symposium at the 27th Alzheimer Europe Conference and several members participated in the plenary sessions. In December the EWGPWD participated in the 4th European Parliament of Persons with Disabilities where co-chair Chris Roberts gave a speech. In addition, the Chairperson of the EWGPWD participated in all 2017 AE Board meetings as ex-facto members with full voting rights.

It is extremely encouraging to see the adoption of the WHO Global Action plan on the public Health Response to Dementia and on a national level, Alzheimer Europe welcomed the launch of the third national dementia strategy in Scotland (United Kingdom). During the year, there were also ongoing efforts to develop a national strategy for Wales and Sweden and Portugal both announced that work would begin on the development of a dementia strategy. This is a clear and welcome indicator of increased awareness of dementia in individual countries, but also on a Global and European level.

In 2017, Malta took over the six month EU Presidency from the Netherlands and maintained dementia as a priority, with an emphasis on the Promotion of the Rights of People with Dementia which was the theme of the meeting of the Government Group of Experts on Dementia Malta hosted during the Presidency. We are delighted that Helen Rochford Brennan, chair of the EWGPWD was invited and gave a speech on the rights of people with dementia.

In the European Parliament, the European Alzheimer's Alliance (EAA) now has 127 MEPs from 28 countries and it remains one of the Parliament's biggest interest groups. In 2017, members of the Alliance provided articles for the Dementia in Europe magazine and hosted or attended our two lunch debates in Brussels. On 27 June, MEP Deirdre Clune (Ireland) hosted the debate focusing on treatment of Alzheimer’s dementia On 5 December, the debate co-hosted by MEPs Heinz K. Becker and Olga Sehnalová focused on improving the diagnosis of Alzheimer’s disease thanks to European research collaboration.

In 2017, AE published the “European Dementia Monitor - Comparing and Benchmarking national dementia strategies and policies”. This report highlighted the existing inequalities in access to dementia care and treatment across Europe. The report assessed which countries provide the most dementia-friendly policies and guarantee the best support and treatment of people with dementia and their carers. During the year, AE also produced its Dementia in Europe Yearbook, which focuses on standards for residential care facilities in Europe and a discussion paper on Dementia as a disability - Implications for ethics policy and practice.

Thanks to an educational grant by Roche, Alzheimer Europe carried out a survey of 1,407 carers to assess their experiences of a diagnosis in the Czech Republic, Finland, Italy, the Netherlands and the United Kingdom (Scotland) and launched the top line results at its Annual Conference.

In 2017, our European Dementia Observatory continued to grow, both in terms of content and audience reach. Alzheimer Europe published two issues of the Dementia in Europe magazine, which featured a variety of articles on policy developments such as interviews with health ministers, the actions of the EU Presidencies and the global dementia initiatives of the WHO. The monthly AE newsletter, which now reaches close to 7,600 subscribers, published a total of 661 articles. In addition to policy issues, the newsletter reports on the activities of AE's members and the latest developments in dementia research.

All newsletter articles are posted on AE's website, which saw almost 650,000 unique visitors during the year. AE's 27th Annual Conference took place in Berlin, co-hosted by Deutsche Alzheimer Gesellschaft Selbsthilfe Demenz, the German Alzheimer’s Association. Our theme, “Care today, cure tomorrow”, attracted 742 delegates - including 38 people with dementia - with a programme featuring some 200 speakers and 212 poster presentations. Our Annual General Meeting took place just before the conference and we were pleased to accept NVO Futura, Montenegro as new provisional members of Alzheimer Europe.

We expanded our participation in EU research projects and is now an active partner in AETIONOMY, AMYPAD, EMIF, EPAD, INDUCT, MinD, MOPEAD, NILVAD, PACE, PredictND, ROADMAP, SMART4MD and SyDAD. These projects provide an additional funding stream and also allow us to stay at the forefront of European dementia research. AE is also participating in DEM 2, the 2nd European Joint Action on Dementia which brings together ministries of health and academics. We also continued our productive cooperation with INTERDEM, a pan-European research network for psychosocial interventions in dementia and signed a memorandum of agreement outlining our future collaboration.

As always, none of these accomplishments would have been possible without the efforts and commitment of our staff members. My heartfelt thanks go to our dedicated team which is headed by Executive Director Jean Georges and includes Kate Boor-Ellis, Vanessa Challinor, Ana Diaz, Dianne Gove, Gwladys Guillory, Stefanie Peulen and Grazia Tomasini. In 2017, we welcomed two new staff members Christopher Bintener and Cindy Birck who joined the project team.

I would also like to thank the corporate sponsors that provided support to our 2017 activities. We very much appreciate the generosity of AbbVie, Axovant, Eisai, Essity, GE Healthcare, GlaxoSmithKline, HammondCare, Hoffmann-LaRoche, Janssen, Lilly, Lundbeck,           Microsoft, MSD, Nestlé, Novartis, Nutricia,          Otsuka, Pfizer and Wi-Care.

Let me also thank my fellow Board members for all their helpful advice and support throughout the year, as well as all the representatives from our national member associations and the external experts who provided truly important contributions to our activities and projects. The quality of the Alzheimer Europe work and reports is in no small measure due to their fantastic help and input.

In 2018, I hope that we will be able to build on this collaboration with our national member organisations, external experts and corporate sponsors and look forward to another productive year.

Iva Holmerová
Chairperson of Alzheimer Europe


Executive Summary

In 2017, Alzheimer Europe:

  • Provided a voice to people with dementia and
    • 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 EWGPWD in the organisation of the Annual Conference by including representatives in the Programme Committee to help with the selection of abstracts, by inviting them to deliver one keynote presentation and by asking them to organise a special symposium on the experience of living with dementia
    • involved the EWGPWD in various EU projects where AE is asked to provide the views of people with dementia
    • 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
    • collaborated with the Alzheimer Europe Foundation which provided bursaries for people with dementia attending the AE Conference and awards for the best conference posters
    • Made dementia a European priority and
      • coordinated with the Maltese EU Presidency and attended a meeting of EU government experts on dementia in Malta
      • continued its work with the European Alzheimer’s Alliance and counted 125 Members of the European Parliament from 27 EU countries as members of the alliance by the end of the year
      • involved members of the European Alzheimer’s Alliance in the organisation of two lunch debates in the European Parliament
      • organised three company round tables bringing together the AE Board, representatives of corporate sponsors and AE member organisations to discuss the progress of the organisation’s different corporate projects,
      • published two editions of the Dementia in Europe magazine,
      • continued working with the new Joint Action on Dementia coordinated by the Scottish Government and contributed to the four priority actions of timely diagnosis and post-diagnostic support, crisis management and care coordination, quality of residential care and dementia-friendly communities
      • organised two face-to-face meetings of the public affairs committee for an exchange on EU and national policy developments and campaigns
      • played an active role as a member of the European Patients’ Forum and supported the development of positions and statements from the broader patient and carer community in response to EU policy developments
      • collaborated with Alzheimer’s Disease International on its campaign to make dementia a priority at WHO, OECD, G7 and G20 level and welcomed the adoption of the WHO Global Action Plan on Dementia as a result of this campaign,
      • played an active role on the Patients’ and Consumers’ Working Party of the European Medicines Agency
      • Promoted a rights-based approach to dementia and
        • identified the ethical implications of recognising dementia as a disability as the priority of the work of its European Dementia Ethics Network
        • set up a working group comprised of ethicists, clinicians, researchers and people with dementia and carers to meet twice in 2017 to discuss the ethical implications of recognising dementia as a disability
        • published a report with the results of the literature review and recommendations on the recognition of dementia as a disability
        • joined the European Disability Forum to collaborate with other European organisations on the development of a European disability strategy and the implementation of the UN Convention on the Rights of Persons with Disabilities (UNCRPD)
        • participated with the EWGPWD in the 4th European Parliament of Persons with Disabilities.
        • continued working with the Council of Europe and contribute to ongoing discussions on legal capacity, guardianship systems and bioethics
        • Supported dementia research and
          • continued with the development of its European Dementia Observatory by proactively identifying relevant policy and research developments and communicating them to its member organisations and wider community
          • involved its Expert Advisory Panel in commenting on and providing context to breaking research stories
          • published a Research Digest at the end of the year highlighting the key scientific developments in different scientific areas
          • organised the 27th AE Conference in Berlin, Germany from 2 to 4 October under the motto “Care today, cure tomorrow” in collaboration with Deutsche Alzheimer Gesellschaft, the German Alzheimer’s association
          • involved its Expert Advisory Panel in the selection of breaking research topics and the selection of abstracts
          • attracted 742 participants from 41 countries to the conference
          • improved the collaboration with the INTERDEM network and signed a memorandum of understanding outlining the areas for future collaboration
          • collaborated more closely with the European Alzheimer’s Disease Consortium (EADC) and participated in EADC meetings
          • issued a call for abstracts to be submitted under the following four key areas: research, policies and strategies, innovative care and dementia-friendly society
          • evaluated participants’ satisfaction with the conference programme and practical organisation and 96.43% of surveyed participants confirmed they would recommend the conference to their colleagues
          • identified care standards in residential care as the focus of its 2017 Yearbook, developed national reports describing the situation in different European countries, produced a comparative report with the findings and identified a number of best practices in this field
          • continued to partner with Newsweaver for the sending of its e-mail newsletter and expanded the list of people receiving the newsletter to 7,726
          • promoted its website and attracted 651,622 unique visitors to its website
          • ensured social media were a full part of the organisation’s communication activities and ended the year with 7,500 Twitter followers and 7,175 Facebook likes
          • continued to engage with the Innovative Medicines Initiative, the Joint Programme Neurodegenerative Diseases Research (JPND), Horizon2020 and the European Innovation Partnership on Active and Healthy Ageing to identify additional opportunities to participate in EU projects
          • continued its active 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:
            • AETIONOMY (development of an aetiology-based taxonomy of dementias)
            • AMYPAD (Amyloid imaging to prevent Alzheimer’s disease)
            • EMIF (European Medical Information Framework)
            • EPAD (European Prevention of Alzheimer’s Dementia)
            • MOPEAD (Models of Patient engagement in Alzheimer’s disease)
            • PACE (effectiveness of palliative care for elderly people in long term care facilities in Europe)
            • PredictND (objective and systematic ICT-based approach for the diagnosis of neurodegenerative diseases)
            • SMART4MD (Support, Monitoring And Reminder Technology for Mild Dementia)
            • 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)
    • SYDAD (Synaptic Dysfunction in Alzheimer's Disease)
  • ended its collaboration with the project
    • SMART4MD (Support, Monitoring And Reminder Technology for Mild Dementia)
  • developed a number of projects funded thanks to the support of its corporate sponsors and partners
  • made available on its website dementia-friendly information on phase III clinical trials conducted in Europe
  • carried out a survey of 1,409 carers’ experiences of a diagnosis in the Czech Republic, Finland, Italy, the Netherlands and the United Kingdom (Scotland) thanks to an educational grant by Roche and launched the top line results at its Annual Conference
  • Strenthened the European dementia movement and
    • updated its member organisations on relevant EU policy developments and involved them in the development of policy positions through AE’s public affairs working group
    • organised its Alzheimer’s Association Academy in December 2017 and develop a programme based on the subjects and issues identified by its members
    • financially supported the attendance of representatives from national organisations at the Alzheimer’s Association Academy and AE’s public affairs meetings
    • organised quarterly meetings of the AE Board to monitor the association’s financial situation and the implementation of its work plan
    • carried out the different activities financed under the framework agreement (2015-2017) and the 2017 operating grant provided by the health programme of the European Union

continued its collaboration with Commission services for the development of a new four-year framework agreement (2018-2021)


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 2017 Annual Work Plan, which was adopted at the Annual General Meeting in Copenhagen on 31 December 2016.

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.


AE Core Activities

In 2017, Alzheimer Europe received the support of the European Commission. The following core activities of the organisation were funded thanks to an operating grant to Alzheimer Europe in the framework of the Public Health Programme.

Objective 1: Providing a voice to people with dementia and their carers

The European Working Group of People with Dementia (EWGPWD) was originally set up by AE in 2012, following consultations with its member organisations in which involvement was identified as a key priority for Alzheimer Europe. Members of the working group are nominated by AE’s member organisations for two-year terms and AE supports the meeting attendance of one person with dementia from each nominating organisation as well as that of a carer or other supporter.

In 2017, the EWGPWD met four times fromn 14-15 May 14-15 and 3-5 September in Luxembourg (Luxembourg, on 1 October in Berlin (Germany) and 5-7 December in Brussels (Belgium).

The Chairperson Helen Rochford Brennan participated in all AE Board meetings as a full Board member. The Group was consulted and asked to ensure user representation and involvement in all AE activities.

For the 2016-2018 term, Alzheimer Europe was able to involve twelve different people with dementia who were nominated by their national organisations in Bosnia and Herzegovina, the Czech Republic, Finland, Germany, Ireland, Norway, Portugal, Slovenia, Sweden and the United Kingdom (Wales and Scotland). The person nominated by Finland, had to leave the group in May and a new member from Finland joined the working group in October 2017.

In 2017, the EWGPWD and/or its members contributed towards:

  • AE activities (27th AE Conference, Alzheimer’s Association Academy, 2017 Yearbook on standards for residential care facilities, report on dementia as a disability, AE Newsletter, clinical trials watch etc.)
  • 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)
  • Research activities carried out by other organisations (ActifCare, European Medicines Agency, INDUCT, MinD)
  • Two peer-reviewed papers on public and patient Involvement and on palliative care, both of which have been published in a scientific peer-reviewed journal
  • The following meetings:
    • Chris Roberts and Alv Orheim and Ana Diaz participated in the INDUCT Winter School in Maastricht (Netherlands) on 12 January 2017 and Chris Roberts presented on the experience of dementia.
    • Helga Rohra made a speech at a conference organised by Fondation Médéric Alzheimer on 8 March 2017 in Paris (France), aimed at promoting social research and innovation on dementia and cognitive disabilities in France.
    • Helen Rochford-Brennan made a presentation to the European Commission group of governmental experts on dementia on 16 May 2017 in Malta. 
    • Idalina Aguiar, Nina Baláčková and Chris Roberts participated in the INDUCT Summer School in Salamanca (Spain) on 25-29 September 2017.
    • Helen Rochford-Brennan addressed delegates participating in the “what if” roundtable on “The right to dignity: Overcoming the stigma, discrimination and inequalities faced by people with Alzheimer’s” held in the European Parliament on 28 September 2017.
    • Helen Rochford-Brennan took part in the Expert Advisory Group (EXAG) meeting of the ROADMAP project on 18 October in Barcelona (Spain).
    • All members of the group participated in the Special Symposium “Living well with dementia. We are still here and I am still … Amela, Helga, Carol and Idalina” at the AE Conference in Berlin (Germany) on 3 October 2017. 
    • Chris Roberts participated in a PPI event organised by the MinD project on 18 October.
    • Helen Rochford-Brennan addressed delegates attending Alzheimer Finland’s Memory Conference on 15-16 November 2017.
    • All members of the EWGPWD participated in the 4th European Parliament of Persons with Disabilities (EPPD) on 6 December in Brussels (Belgium). Chris, Robert, the Vice Chair of the EWGPWD, was one of the representatives from different disability-related organisations to give a speech at this event.
    • Helen Rochford-Brennan was invited to attend and provide a speech at the launch of the WHO Global Dementia Observatory in Geneva (Switzerland) on 11 and 12 December.

Objective 2: Making dementia a European priority

2017 saw a number of key developments at national, European and global level, which Alzheimer Europe was able to contribute to:

During the Maltese Presidency of the European Union, the Presidency and the European Commission coordinated a meeting of the government experts on dementia where Helen Rochford-Brennan was invited to share her experience of receiving a diagnosis of dementia and of living with and advocating on behalf of dementia. The Executive Director of Alzheimer Europe shared the organisation’s work on legal capacity and decision making and shared some identified good practices with the attending experts. During the meeting, the troika of Presidencies (Malta, Slovakia and the Netherlands) also signed a declaration calling for continued European action on dementia.

In 2017, Alzheimer Europe was also actively involved in the 2nd Joint Action on Dementia coordinated by the Scottish Government and participated in the Programme Board and the Evaluation and Dissemination Groups. Alzheimer Europe and its European Working Group of People with Dementia also contributed to three of the four policy priority areas on timely diagnosis and post-diagnostic support, care coordination and crisis management and quality of residential care. The Joint Action’s work on timely diagnosis and on dementia-friendly communities was presented at the organisation’s Annual Conference in Berlin.

On a global level, the World Health Organisation (WHO) further developed its activities on dementia. After a successful campaign coordinated by Alzheimer’s Disease International, the WHO adopted the Global action plan on the public health response to dementia 2017-2025 on 29 May 2017. This plan aims to improve the lives of people with dementia, their carers and families, while decreasing the impact of dementia on communities and countries. It provides a set of actions to realise the vision of a world in which dementia is prevented and people with dementia and their carers receive the care and support they need to live a life with meaning and dignity. On 7 December, the WHO followed up with the official launch of the Global Dementia Observatory, a knowledge hub for dementia, which will provide epidemiological trends and a comparison of national data sources and policies on dementia. Alzheimer Europe was consulted during the development phase of the Global Dementia Observatory and participated as an expert at the launch event.

On a national level, Alzheimer Europe welcomed the launch of the third national dementia strategy in Scotland (United Kingdom). During the year, there were also ongoing efforts to develop a national strategy for Wales and Sweden and Portugal both announced that work would begin on the development of a dementia strategy.

During 2017, the membership of the European Alzheimer’s Alliance grew to 128 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).

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.

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. Alzheimer Europe contributed to EPF’s Access to Healthcare campaign.

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.

Finally, Alzheimer Europe continued its collaboration with the European Medicines Agency (EMA) in 2017 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. A member of the EWGPWD, supported by AE staff, was invited to participate in the evaluation of a procedure for Alzheimer’s disease.

Objective 3: Promoting a rights-based approach to dementia

As in previous operating grants, AE continued to focus on ethical issues in 2017 and this led to the publication a discussion paper entitled “Dementia as a disability? Implications for ethics, policy and practice”.

In this report, we focus on the possible implications for ethics, policy and practice of raising awareness about the potential of framing dementia as a disability. More specifically, we reflect on what the impact might be in terms of how society is or should be organised and what this means for people’s everyday lives. The paper covers the following issues:

  • Disability-related terms and definitions
  • The disability movement
  • Different models (or ways of making sense) of disability
  • Personhood and dementia
  • Human rights and opportunities
  • Policy and practice
  • Care, support, disability and dementia
  • Working towards an inclusive society

The discussion paper also includes a set of statements which were developed by the two working groups (the expert ethics working group and the European Working Group of People with Dementia) and adopted by the Board of Alzheimer Europe. These statements are aimed at the general public, governments and policy makers, Alzheimer associations, organisations of or for people with disabilities, and regulatory bodies.

The ethics group was chaired by Dianne Gove from Alzheimer Europe and the members were June Andrews (University of Stirling, United Kingdom), Andrea Capstick (University of Bradford, United Kingdom), Carmel Geoghegan (Alzheimer Society of Ireland, Ireland), Jean Georges (Alzheimer Europe, Luxembourg), Sébastien Libert (INDUCT, Belgium), Grainne McGettrick (Acquired Brain Injury Ireland, Ireland), Helen Rochford-Brennan (European Working Group of People with Dementia, Ireland), Helga Rohra (European Working Group of People with Dementia,Germany), Simo Vehmas (Stockholm University, Sweden) and Toby Williamson (Mental Health Foundation, United Kingdom).

Objective 4: Supporting dementia research

Over the past years, Alzheimer Europe has continuously improved the information it provides to its members and external stakeholders on key developments in the field of dementia.

In 2017, AE published 11 editions of its monthly e-mail newsletter, with July and August being combined. These e-newsletters contained information on AE’s activities and those of its member organisations, updates on projects in which AE is involved, interesting policy initiatives both at national and European level, scientific developments, human interest stories, new resources and publications and, job opportunities, as well as accounts written by people living with dementia. The AE newsletter had 7,726 subscribers at the end of 2017. A total of 661 articles were featured in AE’s 2017 monthly e-newsletter (730 in 2016). They can be broken down into categories, as follows:

Subject

Number of articles (2017)

Number of articles (2016)

Activities and projects of Alzheimer Europe

185

141

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

72

127

National policy developments

50

69

Activities and projects of AE member organisations

140

179

Scientific developments

143

141

Dementia in Society and “Living with dementia” section

36

32

New resources and publications, education and job opportunities

35

41

AE’s Expert Advisory Panel, set up in 2015, supported the communication on medical and scientific breakthroughs by providing background comments to some research news. The group consists of 35 experts in various areas of dementia from 18 European countries. In 2017, AE published a research digest consisting of all the scientific articles published in the year’s newsletters. The Expert Advisory Panel contributed to this publication, provided a number of commentaries on breaking scientific stories and also evaluated conference abstracts for the 27th Alzheimer Europe Conference in Berlin, Germany.

In 2017, AE’s website saw a significant reduction in visitors which declined from a high of 769,489 in 2016 to 651,122 in 2017.

Month

Visitors (2017)

Visitors (2016)

January

63,321

59,706

February

61,254

67,865

March

68,384

75,282

April

60,743

73,122

May

61,643

64,540

June

56,524

66,793

July

46,846

51,959

August

47,625

53,626

September

54,156

65,064

October

59,982

70,425

November

56,683

86,242

December

36,122

58,383

Total:

651,122

769,489

The organisation also continued to develop its social media presence, particularly on Facebook and Twitter. AE’s Facebook page registered 7,175 “likes” at the end of 2017, an increase from 6,593 likes at the end of 2016. As for Twitter, the association had reached over 7,500 followers at the end of 2017 (5,942 at the end of 2016).

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 2016 was 2,730 (3,605 in 2016) and tweet impressions reached 2.19 million (2.57 million in 2016). The table below shows AE’s own Twitter account activity in 2017:

Month

Tweets

Tweet impressions

New followers

January

40

42,300

129

February

47

43,600

135

March

56

46,900

132

April

46

45,100

110

May

84

69,800

207

June

159

112,000

130

July

42

65,400

133

August

47

62,000

101

September

64

89,700

186

October

134

133,000

176

November

42

52,800

118

December

64

95,800

72

Total:

825

858,400

1,629

The 27th Alzheimer Europe Conference (#27AEC) took place from 2-4 October 2017 in Berlin, Germany and was organised together with Deutsche Alzheimer Gesellschaft, the German Alzheimer’s association.

The event was organised under the theme of “Care today, cure tomorrow” and was attended by 742 participants from 41 countries, including 38 people with dementia. The programme featured 181 speakers delivering oral presentations and 216 poster presentations.

The opening ceremony had participation from representatives of the German Ministries of Health and for Family Affairs, Senior Citizens, Women and Youth. The four plenary sessions were dedicated to “Living with dementia”, “ Dementia care in the 21st century”, “Improving the diagnosis and management of dementia” and a round table discussion on “Current and future research priorities”.

In addition to the four plenaries, delegates at #27AEC had the choice of 24 different parallel sessions in English, 4 parallel sessions in German and four special symposia organised by the European Working Group of People with Dementia and the sponsors of the AE Conference. The conference ended with an invitation to attend the 28th Alzheimer Europe Conference (#28AEC) in Barcelona in 2018.

Objective 5: Strengthening the European dementia movement

The organisation and provision of residential care in Europe is heterogeneous, with relevant differences in the type of facilities providing care, the funding mechanisms and the regulatory systems for the implementation and overseeing of the quality of the care and support provided in these care settings. The work carried out by AE in 2017 has provided detailed information about standards for residential care facilities with a particular focus on regulatory requirements and standards that have been developed for or with people with cognitive problems or dementia in mind. More specifically, it provides an overview of the requirements that residential care facilities in Europe must comply with when providing care, for the following areas:

  • Physical environment,
  • Workforce,
  • Provision of care and rights,
  • Palliative care,
  • Abuse and restraint.

The Yearbook which results from the work in that area includes information from 29 European countries. For Belgium and the United Kingdom (UK) separate information is provided for the different parts of the countries (i.e. Wallonia and Flanders in Belgium, and England, Northern Ireland, Wales and Scotland for the UK). The information was provided by AE members. Other national experts were contacted in countries where AE has no members or if AE member was not able to provide the relevant information. In total, 73 experts from 29 European countries contributed to the report. In addition, members of the European Working Group of People with Dementia (EWGPWD) and their supporters were invited to share their experiences with and views on each of the topics addressed in the report by providing a short written testimonial.

The 2017 Yearbook shows examples of good practices in these five areas across Europe. However, it also highlights some important oversights on how dementia is currently addressed or neglected in frameworks and standards in Europe. Some of the key issues that still need to be considered at policy level are the formulation of clear and legally binding standards with specific considerations of the needs of residents with dementia, appropriate training for staff, awareness raising and the provision of high-quality accessible information to residents, families and staff about their rights and what they should be able to expect from care.

As in previous years, Alzheimer Europe fully involved its member organisations in its meetings, projects and activities. In 2017, Alzheimer Europe organised three capacity building events on 1 March in Luxembourg (dedicated to campaigning and care standards), on 28 June in Brussels (dedicated to the Joint Action and Palliative care) and on 5 and 6 December in Brussels (dedicated to dementia research and EU programmes i.e. European Social Fund, European Solidarity Corps and European Social Pillar).

The following issues were identified as potential subjects for Alzheimer Europe’s capacity building programme:

  • National campaigning activities
  • Care standards for care services
  • The European Joint Action on Dementia and its work on:
    • Timely diagnosis and post-diagnostic support
    • Care coordination and crisis management
    • Residential care
    • Dementia-friendly communities
    • Palliative care in the framework of the PACE project
    • The role of biomarkers in the diagnosis of Alzheimer’s disease/dementia
    • EU research collaborations on timely diagnosis: MOPEAD and AMYPAD projects
    • Patient and public involvement in dementia research
    • Real-world evidence in dementia research
    • The European Regional Development and Social Funds
    • The European Solidarity Corps
    • The European Social Pillar

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 Annual General Meeting of Alzheimer Europe took place on 2 October in the framework of the AE Conference in Berlin. At the meeting, the delegates adopted AE's 2016 Annual and Financial reports and approved the 2018 Work Plan and Budget.

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. During the AE Conference in Berlin, Germany, a memorandum of understanding between the two organisations outlining their collaboration.

In 2017, Alzheimer Europe also continued its collaboration with other EU organisations, such as AGE Platform Europe, Eurocarers, the Interest Group on Carers of the European Parliament and the European Parliament Interest Group on Patient Access to Healthcare and participated in the think tank meetings of EFPIA - the European Federation of Pharmaceutical Industries and Associations.

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 2017, AE contributed to the EDF campaign on the European Accessibility Act and participated with a delegation of the European Working Group of People with Dementia in the 4th European Parliament of Persons with Disabilities.


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 reflected, contributes to the discussion of the ethical issues raised by the projects and supports or leads the dissemination activities. In 2017, AE supported the following projects.

AETIONOMY

AETIONOMY is a five-year project that began in February 2014. It 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. Alzheimer Europe is a partner in work package 4: Ethical and Legal Governance.

The organisation was represented by Dianne Gove, Cindy Birck and Christophe Bintener at a meeting in April in Berlin (Germany), by Dianne at a meeting in Stockholm (Sweden) in October and by Dianne and Cindy at the project meetings in November in Basel (Switzerland). Dianne and Ana Diaz contributed towards the ethics guidance documents developed in work package 4.

AMYPAD

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.

Alzheimer Europe is co-leading Work Package 6: Ethics, communication and dissemination. AE was represented by Cindy Birck and Jean Georges, who organised and chaired the bi-weekly teleconference meetings. They also attended the General Assembly meeting in October in Amsterdam. They coordinated the production and the regular maintenance of the communication tools (i.e. website, newsletter, Twitter account, press release, general flyer) and were responsible authors of the initial communication plan and the initial report on dissemination tools. Jean also regularly attended the weekly telephone conferences of the AMYPAD Executive Committee. The AMYPAD project was also presented in more detail by Isadora Lopes-Alves to AE members during the organisation’s Alzheimer’s Association Academy in December.

In addition, Dianne Gove was active in the ethics subgroup and contributed to the submission of the Ethics Policy and Guidance Document. She represented AE at the ethics meeting organised in January in Cambridge to discuss ongoing work to provide ethics guidance for both the AMYPAD and EPAD projects.

EMIF

The five year European Medical Information Framework project began in 2013 with the aim of developing a framework for evaluating, enhancing and providing access to human health data across Europe.

Alzheimer Europe is a full partner, representing the interests of people with dementia and their carers and is directly involved in the work packages "Sustainability and Outreach" and "Programme Management and Dissemination". IN 2017, Alzheimer Europe supported the general communication activities of the project.

EPAD

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 1,500 will be invited to participate in a trial to test new treatments for the prevention of Alzheimer’s dementia.

Alzheimer Europe is co-leading Work Package 6: Dissemination with the participation of Kate Boor-Ellis, Jean Georges and Cindy Birck in several WP6 meetings throughout the year, including the General Assembly meeting in May. They also regularly disseminated project information via social media on Twitter and Facebook, articleson the EPAD project website and contributed to the quarterly external newsletters and the EPAD press releases. Jean also attended the monthly telephone meetings of the Clinical Development Executive (CDEx).

In addition, Dianne Gove was active in Work Package 8: Ethics and was involved in working group discussions and deliverables. She contributed to setting up the participant panel and co-authored the article “Perspectives on communicating biomarker-based assessments of Alzheimer’s disease to cognitively healthy individuals.” She also gave a presentation at a symposium during the General Assembly in Stockholm in May 2017. The EPAD participant portal was presented at the Alzheimer’s Association Academy in December by Stina Saunders.

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.

Alzheimer Europe was represented by Jean Georges, Dianne Gove, and Christophe Bintener at several meetings throughout the year, including consortium meetings in March and October. Jean and Christophe regularly contribute to the discussions of the Dissemination work package in by-weekly telephone conferences. Christophe Bintener also regularly contributed to raising the profile of the project via social media activity on the MOPEAD Twitter account and contributed articles to the MOPEAD project website.

The project also held a special session during Alzheimer Europe’s 27th Annual Conference in October, was presented at Alzheimer Europe’s Alzheimer Association Academy in December as well as during a Lunch Debate at the European Parliament in December.

Dianne Gove was responsible for producing the ethical guidance document (deliverable D1.3) in collaboration with Richard Milne (as external advisor) from the University of Cambridge, the MOPEAD advisory board and with input from Ana Diaz and Jean Georges from Alzheimer Europe. Dianne also contributed towards discussions and the development of materials linked to the disclosure of test results to participants.

NILVAD

In 2017, Alzheimer Europe continued its collaboration with the NILVAD project, a phase III clinical trial of the drug nilvadipine. Alzheimer Europe is a partner in work package 7 (Dissemination and Communication) and is also involved in a substudy on the experiences of trial participants and their caregivers.

In 2017, Jean Georges attended the final project meeting where the final results of the phase III trial were presented and discussed.

PACE

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.

In 2017, Ana Diaz and Dianne Gove attended project meetings in May. Dianne and Ana regularly contributed to the discussions of the Impact/Dissemination work package and the user-led forums, which are organised in collaboration with AGE Platform. In 2017, they organised and facilitated a consultation with AE member associations and a focus group discussion with members of the European Working Group of People with Dementia in collaboration with researchers from the PACE project and representatives from AGE Platform.

In May, Dianne and Ana attended a PACE consortium meeting in Treviso (Italy) where Dianne also recorded a video clip about Alzheimer Europe’s involvement in the project.

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.

PredictND

The PredictND project is coordinated by VTT Technical Research (Finland) and aims to provide an objective and systematic ICT-based approach for the diagnosis of neurodegenerative diseases.

Jean Georges and Dianne Gove represented Alzheimer Europe at several project meetings throughout the year, including the Management Board and consortium meeting in March

Kate Boor Ellis regularly contributed to raising the profuile of the project via social media activity on the PredictND Twitter account. Kate also worked together with project leaders to produce a PredictND supplement for the conference (October 2017) edition of the Dementia in Europe magazine, and contributed articles to the PredictND project website. The PredictND cobnsortium also organised a special symposium entitled “Diagnosis of dementia: an interactive and educational session” during the 27th AE Conference.

ROADMAP

The "Real world outcomes across the Alzheimer’s disease spectrum for better care: multi-modal data access platform" project will provide the foundation for an integrated data environment and framework for real-world evidence (RWE) in Alzheimer's disease. This will include 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. They contributed to the development of systematic literature reviews on meaningful outcomes and meaningful delay in disease progression of AD.

In September, Dianne Gove, Christopher Bintener and Ana Diaz organised and co-facilitated (together with Mia Nelson and Amanda Ly from the University of Edinburgh) a consultation with the EWGPWD on outcome definitions). In addition to this, AE has been co-leading the work package on Communication and Patient/Healthcare Provider Engagement. This included the development and update of the project website, social media, information materials and articles on the projects’ aims, progress and results as well as a quarterly disseminated external newsletter. Jean Georges and Christophe Bintener in collaboration with co-lead Laura Campo from Lilly were responsible for producing:

  • the report on the project website (D7.1 Project website)
  • the report on the initial communication plan, including project branding and policies (D7.2)
  • the report on the initial set of communication tools (D7.3)
  • the interim report on dissemination activities and communication strategy update (D7.4)

Further, Christophe presented the projects’ communication activities at the General Assembly meetings and liaised with the communication team of the overarching initiative Big Data for Better Outcomes (BD4BO) on behalf of ROADMAP’s communication team. This included face to face meetings and monthly telephone conferences where communication plans, tools, activities and materials were discussed.

Jean and Christophe were also involved in drafting a general introduction to the ROADMAP project for a peer-reviewed journal in collaboration with the projects’ principal investigators and work package leaders.

Dianne Gove is a member of the ROADMAP ethics working group and the Ethics Advisory Board and contributed towards several telephone conferences and the drafting of deliverables for the ethics work package. In December, Dianne Gove and Ana Diaz organised and co-facilitated (together with Andrew Turner from the University of Oxford and Sébastien Libert, a PhD student carrying out a secondment with Alzheimer Europe) a consultation with the EWGPWD on the ethical issues linked to data sharing.

The project also held a special session during Alzheimer Europe’s 27th Annual Conference in October and was presented in three presentations at Alzheimer Europe’s Alzheimer Association Academy in December.

SMART4MD

The four year SMART4MD project coordinated by Anglia Ruskin University in the UK.aims at developing an app called Support, Monitoring and Reminder Technology for Mild Dementia (SMART4MD). The app will be designed to help people with mild dementia adhere to treatment regimens as well as allowing them to share health-related data with their carers and doctors.

Alzheimer Europe was represented by Kate Boor-Ellis at a consortium meeting in September, and by Dianne Gove and Ana Diaz, who participated in regular telephone conferences for the project throughout the year. AE also wrote a press release about the project, disseminated by project partners across six European countries in June 2017. Kate Boor Ellis worked with the project leaders to produce a two.page article about the project, which was published in the October edition (issue 25) of the Dementia in Europe magazine.

Due to time and staff constraints, Alzheimer Europe decided to discontinue its involvement in the project in tehs econd half of 2017.

Support of European research activities

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

INDUCT

INDUCT (Interdisciplinary Network for Dementia Utilising Current Technology) is a four year project under the Marie Sklodowska-Curie Actions Programme. The main aim of INDUCT is to develop a premier quality multi-disciplinary, multi-professional and intersectorial education and training research framework for Europe aimed at improving technology and care for people with dementia, and to use the coherent themes and interrelated Early Stage Researchers ESRs within INDUCT to provide the evidence to show how technology can improve the lives of people with dementia.

In 2017, several members of the EWGPWD, supported by AE staff, contributed to the INDUCT Winter School (Maasrtricht, the Netherlands) and the INDUCT Summer School (Salamanca, Spain).Sébastien Libert, one of the INDUCT PhD researchers based at the University College London, did a secondment with Alzheimer Europe during which he contributed towards the ethics work on disability and dementia, and provided support during the quarterly meetings of the EWGPWD.

MinD

MinD (Designing for People with Dementia) is a four-year project under the Marie Sklodowska-Curie Actions Programme. IThe project partners aim to use the concept of mindful design to investigate innovative design solutions, in order to enable self-empowerment and confidence building of people living with dementia.

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 in June. During this visit, a consultation with the EWGPWD was held in Luxembourg

SyDAD

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 Bonn on behalf of Alzheimer Europe where she gave a presentation of AE.

 

Corporate affairs

European Parliament lunch debates

In 2017, Alzheimer Europe organised two successful lunch debates in the European Parliament in Brussels:

  • On 27 June 2017, MEP Deirdre Clune hosted an Alzheimer Europe lunch debate in the European Parliament on the "Current and future treatment for Alzheimer’s disease and other dementias”. Prof. Alexander Kurz, (Technical University of Munich, Germany) highlighted the current pharmacological treatment and non-pharmacological management options. Prof. Simon Lovestone, (University of Oxford, United Kingdom) gave an update on researchers’ latest understanding of Alzheimer’s disease and Alzheimer’s dementia. Prof. Bengt Winblad (Karolinska Institutet, Sweden) gave an overview of ongoing clinical trials including preventative strategies. Dr Elisabetta Vaudano from the Innovative Medicines Initiative (IMI), presented the public private partnership of the Innovative Medicines Initiative (IMI).
  • On 5 December 2017, Alzheimer Europe held a successful lunch debate in the European Parliament co-chaired by MEPs Heinz K. Becker (Austria) and Olga Sehnalová (Czech Republic) which focused on improving the diagnosis of Alzheimer’s disease thanks to European research collaboration. Prof. Philip Scheltens, presented “Diagnosing Alzheimer’s disease and Alzheimer’s dementia: A paradigm shift thanks to biomarkers”. Prof. Pierre Krolak-Salmon presented how the 2nd European Joint Action on Dementia has developed a diagnostic framework which could promote and enhance a timely diagnosis of Alzheimer’s disease and other neurocognitive disorders. Dr Jyrki Lötjönen presented the decision support tool developed within the PredictND project and Dr Elisabetta Vaudano showcased the support provided by the Innovative Medicines Initiative on diagnosis with a focus on the MOPEAD and AMYPAD projects.”.

Both lunch debates were well-attended, with delegates from the European Parliament and Commission, the pharmaceutical industry and AE member associations.

Dementia in Europe magazine

In 2017, Alzheimer Europe published two 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:

  • Justyne Caruana MP, Maltese Parliamentary Secretary for Rights of Persons with Disability
  • Maureen Watt, Scottish Minister for Mental Health
  • Marianne Thyssen, European Commissioner for Employment, Skills, Social Affairs, Labour Mobility

The 2017 issues include articles about the Maltese and Slovak EU Presidencies, reports of the World Health Organisation’s dementia activities including the launch of WHO’s Global Action Plan on the Public Health Response to Dementia and the launch of the Global Dementia Observatory and news on national dementia strategies in Scotland and Wales.

Issue 25 also included a supplement on the PredictND Project.

Clinical Trial Watch

Alzheimer Europe’s Clinical Trial Watch aims to gather information on phase III clinical trials being conducted in at least one European country. In 2017, Alzheimer Europe continued to develop and improve its innovative online resource providing up-to-date information on clinical trials investigating drugs for the treatment and prevention of Alzheimer’s and other dementias. Information is provided in an easy-to-understand language and trials are presented by country and by condition. A dementia-friendly version of each study is available for download as a pdf file on the AE website and all information has been checked by a representative of the European Working Group of People with Dementia for understanding and a company representative for accuracy.

The CTW was officially launched in September 2016 and 16 trials have already been reported via this service. Although some trials were removed in 2017 since they were no longer recruiting participants, 7 new trials were added, resulting in 11 clinical trials reported in the database at the end of the year. From April 2017, AE included a new section on “ongoing studies but not recruiting participants”.

European Dementia Monitor

In 2017, AE published the “European Dementia Monitor - Comparing and Benchmarking national dementia strategies and policies”.This report highlighted the existing inequalities in access to dementia care and treatment across Europe. The report assessed which countries provide the most dementia-friendly policies and guarantee the best support and treatment of people with dementia and their carers.

According to the findings of the European Dementia Monitor, no country excelled in all ten categories surveyed. The report also revealed that there were significant differences between European countries with most of the Western and Northern European countries scoring significantly higher than Eastern and Southern European countries.

Carers’ Survey

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.

A total of 1,409 carers, from these five countries, have participated in the study. A press release was disseminated in October and the top line results of the study were launched at the AE Annual Conference in Berlin. The findings of the study will be further disseminated in peer-reviewed journals and through a publication for the general public.

The top line findings of the survey were:

  • On average, 47% of carers felt that the diagnosis would have been better earlier (ranging from 36.5% in the Netherlands to 52.1% in Italy)
  • Amongst the key identified barriers to earlier diagnosis, carers reported the first professional seen not considering that anything was wrong (33%) or believing it was not worth pursuing a diagnosis (6.6%) and the refusal of the person with dementia to seek help (37.9%)
  • Significant differences exist across European countries as to the percentage of people with dementia being informed about their diagnosis with 59.3% of Italian carers reporting that the person had not been informed about their diagnosis and this percentage falling to 23.2% in the Czech Republic, 8.2% in the Netherlands, 4.4.% in Scotland and 1.1% in Finland.

Meetings attended by AE representatives

Meetings organised by Alzheimer Europe in the framework of the 2017 Operating Grant

Date

Meeting

Venue

27-28 February

AE Board

Luxembourg, Luxembourg

1 March

AE Public Affairs Meeting

Luxembourg, Luxembourg

14-15 March

European Working Group of People with Dementia

Luxembourg, Luxembourg

26 April

Ethics expert meeting on dementia and disability

Amsterdam, Netherlands

26-27 June

AE Board

Brussels, Belgium

28 June

AE Public Affairs Meeting

Brussels, Belgium

3-4 September

European Working Group of People with Dementia

Munsbach, Luxembourg

6 September

Ethics expert meeting on dementia and disability

Luxembourg, Luxembourg

1 October

European Working Group of People with Dementia

Berlin, Germany

2 October

AE Board

Berlin, Germany

2-4 October

AE Conference “Care today, cure tomorrow”

Berlin, Germany

4-5 December

AE Board

Brussels, Belgium

5-7 December

European Working Group of People with Dementia

Brussels, Belgium

6-7 December

Alzheimer’s Association Academy

Brussels, Belgium

Meetings attended by AE representatives in the framework of the 2017 Operating Grant

Date

Meeting

Venue

16-17 March

Joint Action on Dementia – Residental care

Sofia, Bulgaria

24 March

European Commission meeting on European Solidarity Coprs

Brussels, Belgium

3-4 April

Conference venue study visit

The Hague, Netherlands

4-5 April

Conference venue study visit

Rotterdam, Netherlands

6 April

Eurodiaconia Meeting

Brussels, Belgium

6 April

Meeting with Lufthansa

Luxembourg, Luxembourg

11 April

Meeting with DG SANTE

Luxembourg, Luxembourg

26 April

Meeting with HC&L Solutions

Luxembourg, Luxembourg

27-28 April

European Alzheimer’s Disease Consortium

Bucharest, Romania

2 May

CHAFEA Infoday

Brussels, Belgium

3 May

Meeting with Info-Zenter Demenz

Luxembourg, Luxembourg

15-16 May

European Commission Government expert group on dementia

St. Julian’s, Malta

19 May

PRIME Workshop of the European Medicines Agency

London, United Kingdom

2 June

Alzheimer Scotland Annual Meeting

Edinburgh, United Kingdom

21 June

Workshop on Public health of Joint Programme for neurodegenerative diseases research (JPND)

Paris, France

3-4 July

Conference field visit

Berlin, Germany

14 July

Alzheimer’s Society Workshop “Involving the public and patients in research”

London, United Kingdom

7 September

Programme Board of EU Joint Action on Dementia

Lyon, France

10-14 September

67th session of the WHO Regional Committee for Europe

Budapest, Hungary

19-20 September

Patients’ and Consumers’ Working Party of European Medicines Agency

London, United Kingdom

21 September

EU4Health meeting

Brussels, Belgium

27 September

Research & Innovation for Europe workshop “What after 2020?”

Brussels, Belgium

18 October

European Partients’ Forum working group on access

Brussels, Belgium

19 October

Eurocarers meeting

Brussels, Belgium

24-25 October

Council of Europe Conference on Oviedo Convention

Strasbourg, France

9 November

HRG event

Luxembourg, Luxembourg

11-15 November

ICCA Conference

Prague, Czech Republic

16 November

Memory Conference

Helsinki, Finland

20-21 November

EU Joint Action on Dementia meeting on diagnosis and post-diagnostic support

Paris, France

21 November

Training session of European Medicines Agency

London, United Kingdom

22 November

Patients’ and Consumers’ Working Party of European Medicines Agency

London, United Kingdom

27 November

EU Health Policy Platform

Brussels, Belgium

28 November

European Commission meeting with stakeholder organisations receiving operating grants

Brussels, Belgium

28 November

MEP Interest Group on Access to Healthcare

Brussels, Belgium

6 December

4th European Parliament of Persons with Disabilities

Brussels, Belgium

11 December

EU4Health meeting

Brussels, Belgium

Other meetings organised by AE or attended by AE representatives in 2017

Date

Meeting

Venue

6 January

Meeting with Roche

Luxembourg, Luxembourg

9-10 January

EPAD/AMYPAD meeting on ethics

Cambridge, United Kingdom

10 January

ROADMAP communications meeting

Brussels, Belgium

12 January

INDUCT School

Maastricht, Netherlands

17 January

ROADMAP outcome measures meeting

Edinburgh, United Kingdom

18 January

Value of Treatment meeting of European Brain Council

Brussels, Belgium

24 January

ROADMAP Steeing Committee

Amsterdam, Netherlands

26 January

Meeting with MSD

Brussels, Belgium

27 January

Meeting with European Patients’ Forum

Brussels, Belgium

1 February

NILVAD Steering Committee

London, United Kingdom

7-11 February

CONVENE Forum

Vilnius, Lithuania

13-14 February

EPAD communications meeting

Basel, Switzerland

21-22 February

EFGCP Conference

Brussels, Belgium

22-24 February

EMIF-AD General Assembly

Manchester, United Kingdom

28 February

AE Company Round Table

Luxembourg, Luxembourg

1-2 March

AETIONOMY Steering Committee

Esch/Belval, Luxembourg

3 March

EFPIA Think Tank

Brussels, Belgium

6-7 March

PredictND Management and Project Team

Copenhagen, Denmark

13 March

Meeting with European health NGOs

Brussels, Belgium

14 March

PredictND Interim Review

Brussels, Belgium

15-16 March

IMI Meeting “Collaboration in Alzheimer’s disease

Brussels, Belgium

16-17 March

MOPEAD Consortium

Brussels, Belgium

20-21 March

AETIONOMY Interim review

Brussels, Belgium

23-24 March

ROADMAP General Assembly

Barcelona, Spain

29 March

Meeting with Robert Bosch Stiftung

Munich, Germany

30 March – 1 April

M&I Spring Forum

Paris. France

31 March

ActifCare

Brescia, Italy

20 April

Meeting with Biogen

Luxembourg, Luxembourg

24-25 April

AETIONOMY/PREDISEADS Joint Ethics Meeting

Berlin, Germany

26-26 April

Alzheimer’s Disease International Elected Board and Council

Kyoto, Japan

3-4 May

Dementia Platform UK Conference

London, United Kingdom

8-9 May

PACE Consortium

Treviso, Italy

8-19 May

MinD project meetings

Esch/Belval, Luxembourg

9-10 May

SydAD Annual Meeting

Bonn, Germany

9-10 May

Alzheimer’s Prevention European Registries workshop

London, United Kingdom

12 May

ROADMAP Research Questions workshop

Amsterdam, Netherlands

15-17 May

EPAD General Assembly

Stockholm, Sweden

22 May

CEO Intitiave lunch during 70th WHO General Assembly

Geneva, Switzerland

25 May

Swiss Federal Office of Health event on Global Action Plan on Dementia

Geneva, Switzerland

10 June

XV Alzheimer’s Meeting of Galician Federation

Santiago de Compostela, Spain

11-13 June

ROADMAP General Assembly

Barcelona, Spain

13 June

Meeting witH European Patients’ Forum

Brussels, Belgium

17 June

Generonotoly panel at University of Vechta

Vechta, Germany

19-20 June

HTAi Conference

Rome, Italy

27 June

European Parliament lunch debate “The current and future treatment of Alzheimer’s disease”

Brussels, Belgium

27 June

AE Company round table

Brussels, Belgium

10 July

EPAD TDC Certification visit

Glasgow, United Kingdom

15 July

MOPEAD Consortium

London, United Kingdom

15 July

GAP/EPAD workshop

London, United Kingdom

16-20 July

Alzheimer’s Association International Conference

London, United Kingdom

4–5 September

ROADMAP consultation of European Working Group of People with Dementia

Munsbach, Luxembourg

4-6 September

SMART4MD project consortium meeting

Malmö, Sweden

8 September

Care survey meeting

Amsterdam, Netherlands

11 September

Continence care meeting

Florence, Italy

14-15 September

EPAD Interim Review

Brussels, Belgium

20 September

Meeting with Europan Patients’ Forum

Brussels, Belgium

26 September

Kick-off meeting of Centre of Excellence in Digital Health and Personalised Medicine

Esch/Belval, Luxembourg

28 September

MSD “What If” Roundtable “The right to dignity”

Brussels, Belgium

28 September

European Health Data Network meeting

Amsterdam, Netherlands

2 October

INTERDEM meeting

Berlin, Germany

4-5 October

MOPEAD Consortium meeting

Berlin, Germany

5 October

PredictND Consortium meeting

Berlin, Germany

9 October

AETIONOMY Project meeting

Stockholm, Sweden

10-11 October

AMYPAD General Assembly

Amsterdam, Netherlands

16-17 October

ROADMAP General Assembly

Barcelona, Spain

18-19 October

IMI Stakeholder Forum

Brussels, Belgium

18 October

ROADMAP EXAG

Barcelona, Spain

19-20 October

AAIC Symposium: “Aging and Alzheimer’s disease: Opportunities for therapeutic interventions”

Varna, Bulgaria

27 October

EFPIA think tank

Brussels, Belgium

30 October

MOPEAD Ethics working group

Cambridge, United Kingdom

1-4 November

Clinial Trials on Alzheimer’s disease (CTAD) Conference

Boston, USA

6 November

ISPOR Annual European Congress

Glasgow, United Kingdom

8 November

EPAD communications meeting

Beerse, Belgium

15 November

BD4BO communications meeting

London, United Kingdom

20 November

EPAD communications meeting

Amsterdam, Netherlands

28 November

GSK Health Advisory Board

London, United Kingdom

29 November

AETIONOMY Steering Committee

Basel, Switzerland

30 November – 1 December

AETIONOMY General Assembly

Basel, Switzerland

5 December

European Parliament lunch debate “Diagnosis of Alzheimer’s disease”

Brussels, Belgium

6 December

Company round table

Brussels, Belgium

11-12 December

Human Brain Project seminar

Paris, France

11-12 December

WHO launch of Global Dementia Observatory

Geneva, Switzerland

13-14 December

Workshop “The road to 2025 – Building the ecosystem for Alzheimer’s innovation”

Lausanne, Switzerland

 

 

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Last Updated: Thursday 28 June 2018

 

 
 

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