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Annual Report 2018

Annual Reports


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.

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 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. Theirs 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, 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.

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.

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. 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.

All of these accomplishments were only possible thanks to the herculean efforts of Alzheimer Europe’s small, dedicated team, spearheaded by Director Jean Georges. In 2018, the team included Christopher 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.

We are also hugely appreciative of the generosity of the corporate sponsors that supported our 2018 activities: Abbvie, Amgen, Anglia Ruskin University, Biogen, Danone (Nutricia), Fondation Alzheimer Luxembourg, GE Healthcare, Janssen, Lilly, Lundbeck, MSD, Newsweaver, Novartis, Otsuka, Pfizer, Robert Bosch Stiftung, Roche, and Université de Lille.

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


Executive Summary

In 2018, Alzheimer Europe:

  • 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 involed 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 and in various EU projects where AE is asked to provide the views of people with dementia
    • had representatives of the group take part in a scientific advice procedure of the European Medicines Agency
  • 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 with126 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
    • 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 available on its website dementia-friendly information on 7 phase II and 11 phase III clinical trials conducted in Europe
    • 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
  • Strenthened 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 adption of the European Accessibility Act and the Work-Life Balance Initiative and for a greater role of the European Union in the health field via the #EU4Health campaign
    • 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 a scientific article published in the International Journal of Geriatric Psychiatry thanks to an educational grant by Roche.

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.


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 10 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 will be sought.

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.

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.

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 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.

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.)
  • 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 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.

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.

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.

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.

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).

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.

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.

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.

Finally, in response to the EU Commission’s decision to disband the Governmentall 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 contiuity of such a platform. In December 2018, in Brussels, a new group of national Government Experts on Dementia met, involving 17 governments from across the European Union, with the European Commission, OECD and WHO also in attendance as observer members.

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).

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 minority ethnic groups”. The goal of this work was 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:

  • 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 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.

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 countains 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:

Phase

Study

Study sponsor

Name of the drug

Condition

II

Abvac40

Araclon Biotech

Abvac40

Amnestic mild cognitive impairment or very mild Alzheimer's disease

II

ACI-24-1801

AC Immune

ACI-24

Mild Alzheimer's disease

II

ETHERAL

Oryzon

ORY-2001

Mild-moderate Alzheimer's Disease

II

MAPT-CS1

Ionis Pharmaceuticals

IONIS MAPTRx

Mild Alzheimer's disease

II

RO7105705

Genentech

RO7105705

Prodromal to Mild Alzheimer's Disease

II

TANGO

Biogen

BIIB092

Early Alzheimer's Disease

II

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

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 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 follows:

Subject

Number of articles (2018)

Number of articles (2017)

Activities and projects of Alzheimer Europe

169

185

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

68

72

National policy developments

41

50

Activities and projects of AE member organisations

120

140

Scientific developments

160

143

Dementia in Society and “Living with dementia” section

46

36

New resources and publications, education and job opportunities

57

35

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.

Month

Visitors (2018)

Visitors (2017)

January

40,272

63,321

February

41,552

61,254

March

51,084

68,384

April

50,572

60,743

May

46,569

61,643

June

19,702

56,524

July

25,598

46,846

August

37,056

47,625

September

44,728

54,156

October

64,236

59,982

November

67,789

56,683

December

48,139

36,122

Total:

537,292

651,122

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

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).

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:

Month

Tweets

Tweet impressions

New followers

January

92

115,000

105

February

155

201,000

114

March

112

208,000

125

April

87

127,000

114

May

75

126,000

104

June

89

162,000

121

July

32

90,300

112

August

38

77,400

63

September

84

107,000

203

October

182

186,000

261

November

90

148,000

93

December

106

129,000

68

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.

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 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.

Objective 5: Strengthening the European dementia movement

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 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
  • 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 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 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, 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:

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

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.

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 the European Accessibility Act, as well as engaging with COFACE around their work on the Work-Life Balance Initiative of the European Commisison.

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 include engaging with EFPIA Patient Think Tank, the EDF’s European NGOs and the Core Group of the EU4Health campaign group.

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.

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.


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.

AD-Detect-Prevent

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.

AETIONOMY

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 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).

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. 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, Research Gate, 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.

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

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 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 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 face-to-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 Research Gate 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.

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.

Dianne Gove also contributed towards discussions within the ethics work package, including a face-to-face meetings 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.

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 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.

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 distribted 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.

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 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.

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.

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.

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 asses patient engagement practices. Chris Roberts, Vice Chair of the EWGPWD, wrote a blog about the relevance of patient engagement in dementia.

PRODEMOS

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.

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.

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.

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.

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 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 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.

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.

INDUCT

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 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.

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.

MinD

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.

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.

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.

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 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.

Corporate affairs

European Parliament lunch debates

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

  • On 27 February 2018, MEP Nessa Childers hosted an Alzheimer Europe lunch debates on 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 Holmerova (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 Shenalová 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 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.

Dementia in Europe magazine

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:

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

The 2018 issues include articles 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.

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 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.


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

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

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 5th 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

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 10th 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

6th 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

 

 

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Last Updated: Wednesday 09 October 2019

 

 
 

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