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Annual Report 2020

Annual Reports

Annual Report 2020


Please find the .pdf version of our Annual Report 2020 available for download below.


In 2020, Alzheimer Europe:

  • Provided a voice to people with dementia and
    • Involved 14 people with dementia from 11 European countries in its European Working Group of People with Dementia (EWGPWD)
    • Organised over 20 virtual meetings of the EWGPWD and consulted the group on its activities and EU funded projects
    • Developed recommendations on dementia-inclusive meetings, venues and travel
    • Dedicated a symposium at its Annual Conference to the impact of the COVID-19 pandemic on people with dementia
  • Made dementia a European priority and
    • Highlighted the impact of the COVID-19 pandemic on dementia care and research dedicating a special section on its website and its newsletter to 246 COVID-19 related resources and information of relevance to people with dementia
    • Adopted policy positions on the issue of triage, the promotion of the wellbeing of people with dementia and the support of dementia research during the pandemic
    • Welcomed the adoption of national dementia strategies in Iceland, Germany and Spain and the decision of the Czech Republic, Netherlands and Norway to launch new strategies in 2021
    • Organised three meetings of the European Group of Governmental Experts on Dementia and involved representatives from 25 health ministries and observers from the European Commission, the Organisation for Economic Cooperation and Development (OECD) and the World Health Organization (WHO)
    • Included 92 Members of the European Parliament from 26 European Union countries in the European Alzheimer’s Alliance
    • Continued its collaboration as an accredited organisation of the European Medicines Agency
  • Promoted a rights-based approach to dementia and
    • Identified legal capacity and decision making as the priority of its 2020 focus
    • Brought together a group of legal and ethical experts with people with dementia, carried out a literature review, identified recommendations and published its report on “Legal capacity and decision making: The ethical implications of lack of legal capacity on the lives of people with dementia”
    • Developed and published reports on intercultural care for policy makers and health and social care workers thanks to the support of the Robert Bosch Stiftung
  • Supported dementia research and
    • Carried out a mapping exercise of 489 EU-funded dementia research project representing a funding total of EUR 1.2 billion
    • Continued covering research developments via its website and social media
    • Published 11 monthly e-mail newsletters with a total of 662 news articles covering research news, as well as policy developments and activities of Alzheimer Europe, its projects and its members
    • Saw an increase of visitors to its website to 712,383 compared to 614,633 in 2019
    • Built on its social media presence and had 8,502 Facebook likes and 11,723 Twitter followers by the end of 2020
    • Organised its first Virtual Annual Conference “Dementia in a changing world” from 20-22 October 2020 with 719 participants from 43 countries which featured 260 speakers and 72 poster presentations
  • Strengthened the European dementia movement and
    • Carried out an evaluation of its activities by its member organisation
    • Organised a series of capacity building workshops for its members as part of its Alzheimer’s Association Academy
    • Hosted five meetings of the Alzheimer Europe Board as well as a Virtual Annual General Meeting
    • Continued as a full member of the European Patients’ Forum and the European Disability Forum
    • Collaborated with INTERDEM, the European Alzheimer’s Disease Consortium (EADC) and the European Academy of Neurology (EAN)
    • Contributed to the EAN guidelines on management issues in dementia and the EAN/EADC position on the diagnosis and disclosure of mild cognitive impairment
  • Carried out the following project-related activities
    • 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)
      • AMYPAD (Amyloid imaging to prevent Alzheimer’s disease)
      • EPAD (European Prevention of Alzheimer’s Dementia)
      • Neuronet (Efficiently networking European neurodegeneration research)
      • PARADIGM (Patients active in research and development for an improved generation of medicines)
      • PRODEMOS (Prevention of Dementia using Mobile phone Applications)
      • RADAR-AD (Remote assessment of disease and relapse – Alzheimer’s disease)
      • RECOGNISED (Retinal and cognitive dysfunction in type 2 diabetes: unravelling the common pathways and identification of patients at risk of dementia)
      • VirtualBrainCloud (Personalised Recommendations for Neurodegenerative Disease)
    • started its collaboration with
      • EUROFINGERS (Multi-modal precision prevention toolbox for dementia in Alzheimer’s disease)
    • supported the following EU projects
      • DISTINCT (Dementia: Intersectorial strategy for training and innovation network for current technology)
      • MinD (Designing for People with Dementia)
      • MIRIADE (Multi-omics interdisciplinary research integration to address dementia diagnosis)
      • SPAN+ (Empowering people with dementia)
    • developed a number of projects funded thanks to the support of its corporate sponsors and other partners
      • organised a European Parliament lunch debate on “The Innovative Medicines Initiative (IMI): Advancing Alzheimer’s research through private-public partnerships”, hosted by Christophe Hansen, MEP (Luxembourg), in February and an online workshop on “Maintaining dementia as a public health and research priority during the COVID-19 pandemic”, hosted by Sirpa Pietikäinen, MEP (Finland) in December
      • convened three company round table meetings bringing together representatives of industry and national Alzheimer’s associations
      • published three editions of the Dementia in Europe magazine
      • developed a policy brief “Dementia, a European priority” highlighting the past EU activities in support of dementia and identifying recommendations for future action at European and national level
      • expanded its Clinical Trials Watch and made available on its website dementia-friendly information on 8 phase II and 6 phase III clinical trials conducted in Europe
      • continued the mapping exercise of data sharing practices in European research projects thanks to the support of Gates Ventures

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. 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 and other partners.


In 2020, Alzheimer Europe received an operating grant in the framework of the European Union’s Health Programme which provided the funding for the organisation’s following 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 12 different countries, Alzheimer Europe was in a position to provide input to several European projects and initiatives, as well as to Alzheimer Europe’s own projects and activities, thereby ensuring that the voices of people with dementia influence research, care and policy.

A key priority of the 2020 Work Plan was for the EWGPWD to explore the accessibility of meetings and travel for people with dementia. The group decided, in addition, to explore the use of and accessibility of virtual meetings. This coincided with the need for them to switch to virtual meetings as all travel and attendance at meetings were cancelled in Europe during the COVID-19 pandemic. The EWGPWD had 1 face-to-face meeting in February 2020 in Brussels but in March 2020, due to the 2020 COVID-19 pandemic, all planned face-to-face meetings of the EWGPWD had to be cancelled. The group has participated in over 20 virtual meetings and despite the difficulties and challenges outlined in their report, all members of the group will continue working online until it is safe and possible to resume face-to-face meetings. 

The Chair of the EWGPWD (2018-2020), Helen Rochford-Brennan, actively participated in the meetings of the Board of Alzheimer Europe in 2020. After the formation of the new group for the 2020 to 2022 term of office, she continued as a normal member of the working group and was replaced as Chair by Chris Roberts (previously Vice Chair). Two further Vice Chairs were appointed by the EWGPWD, namely Bernd Heise from Germany and Kevin Quaid from Ireland.

Between January 2020 and October 2020, the group had 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; Nina Baláčková, Czech Republic; Petri Lampinen, Finland; Thomas Maurer, Switzerland; Angela Pototschnigg, Austria; Geert Van Laer, Belgium.

Since October 2020, the group has had the following members

  • Chair: Chris Roberts, UK – England, Wales and Northern Ireland.
  • Vice-Chairs: Bernd Heise, Germany and Kevin Quaid, Ireland.
  • Members: Helen Rochford-Brennan, Ireland, Idalina Aguiar, Portugal; Stefan Eriksson, Sweden; Tomaž Grižinič, Slovenia; Nigel Hullah, UK – England, Wales and N. Ireland; Margaret McCallion, UK - Scotland; Danny McDonald, UK – Scotland; Petri Lampinen, Finland; Angela Pototschnigg, Austria; Geert Van Laer, Belgium; Erla Jόnsdόttir (Iceland).

Two additional women had expressed interest in joining the EWGPWD (one from Denmark, one from the Netherlands) and attended one virtual meeting of the group. However, they both decided not to join for different reasons.

In 2020, the EWGPWD and/or its members also contributed towards:

  • Alzheimer Europe activities (30th Alzheimer Europe conference, Alzheimer’s Association Academy, ethics report on legal capacity and decision making, Alzheimer Europe newsletter)
  • EU projects in which Alzheimer Europe is involved (PARADIGM, VIRTUAL BRAIN CLOUD, RADAR-AD, SPAN+, Miriade and DISTINCT)

Objective 2: Making dementia a European priority

Initially, Alzheimer Europe had planned on carrying out a mapping exercise and comparison of national training and education programmes for healthcare professionals involved in the diagnosis, treatment, management and care of people with dementia. Unfortunately, due to the COVID-19 pandemic, it became impossible for the national member organisations to respond to the survey. In addition, organisations highlighted the need to exchange information and identify good practices on national responses to the pandemic.

As a result, Alzheimer Europe responded to the pandemic and included regular news on the COVID-19 pandemic in its monthly newsletters and developed an online resource centre which provided references in the following 11 categories:

  1. Information for people with dementia
  2. Advice for caregivers and family members
  3. Information for minority ethnic groups
  4. COVID-19 and intellectual disabilities
  5. Mental health resources
  6. COVID-19 in numbers: epidemiology
  7. Global resources
  8. EU resources
  9. National country resources
  10. General, scientific and ethical resources
  11. Mental health resources

A total of 80 COVID-19 related news items were included in Alzheimer Europe’s newsletter and 246 resources were included on the Alzheimer Europe website: https://www.alzheimer-europe.org/Living-with-dementia/COVID-19.

In addition, Alzheimer Europe convened a number of meetings with its national member organisations (2 April and 10 June) and with the European Group of Governmental Experts on Dementia (24 March, 4 June and 8 December) where national representatives updated others on their respective strategies and initiatives to protect and support people with dementia and their caregivers during the pandemic.

Finally, Alzheimer Europe adopted the following policy positions or recommendations:

  • 3 April – Alzheimer Europe position regarding the allocation of scarce medical resources for intensive care services during the COVID-19 pandemic
  • 14 April – Alzheimer Europe recommendations on promoting the wellbeing of people with dementia and carers during the COVID-19 pandemic
  • 28 July – Alzheimer Europe position on supporting dementia research in unprecedented circumstances.

Alzheimer Europe organised three online meetings of the of the European Group of Governmental Experts on Dementia. These meetings were attended by national health ministry officials from 25 European countries (Austria, Belgium – Flanders, Bulgaria, Croatia, Czech Republic, Estonia, Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Israel, Latvia, Malta, Netherlands, Norway, Portugal, Poland, Slovenia, Sweden, Switzerland, UK – England and the UK– Scotland). In addition, non-country stakeholders were also represented in the meetings: Alzheimer Europe, European Commission (DGs SANTE and RTD), Organisation for Economic Cooperation and Development, and the World Health Organization (WHO). These meetings were primarily focused on the COVID-19 pandemic, how it affected people with dementia and their carers, and how governments were responding.

2020 also saw a number of key developments at national, European and global level, to which Alzheimer Europe was able to contribute. On a national level, Alzheimer Europe welcomed the launch of the national dementia strategies in Iceland, Germany and Spain, as well as the announcement from the Czech Republic, Netherlands and Norway, of their intention to launch new dementia strategies in 2021.

At a European level, in 2020, Alzheimer Europe wrote to both Health Commissioner, Stella Kyriakides, and Vice-President of Democracy and Demography, Dubravka Suica, emphasising the importance of dementia as a policy priority. Since a number of MEPs left the Parliament, the European Alzheimer’s Alliance (EAA) saw a slight reduction in its membership, with 93 MEPs at the end of 2020. Alzheimer Europe will therefore make increasing the members a focus of its work in 2021.

Alzheimer Europe also worked closely with its member associations and organised three meetings with public affairs representatives (February, April and June) to discuss EU policy developments, national lobbying and campaigning activities, as well as ongoing work of national associations to respond to the COVID-19 pandemic. As a result of the pandemic, only the February meetings were held in-person, with the others were organised virtually.

Alzheimer Europe continued its collaboration with the European Medicines Agency (EMA) in 2020 as an accredited patient organisation and as a full member of EMA’s Patients’ and Consumers’ Working Party (PCWP). A member of the European Working Group of People with Dementia also contributed to an EMA scientific advice procedure.

Alzheimer Europe continued its collaboration with the European Medicines Agency (EMA) in 2020 as an accredited patient organisation and as a full member of EMA’s Patients’ and Consumers’ Working Party (PCWP). Alzheimer Europe also continued to engage with the World Health Organization (WHO), sharing its work with our members and contributing to its ongoing work in relation to the Global Action Plan on Dementia.

Objective 3: Promoting a rights-based approach to dementia

As in previous operating grants, Alzheimer Europe continued to focus on ethical issues in 2020 and this led to the publication of a report entitled “Legal capacity and decision making: The ethical implications of lack of legal capacity on the lives of people with dementia”. This report addresses ethical issues surrounding legal capacity insofar as these relate to the lives and wellbeing of people with dementia.

Having legal capacity means being considered as a subject before the law. It also means having certain rights (including human rights) and having the opportunity to exercise those rights, albeit with appropriate support if needed, that is acceptable and freely chosen. The aims of this report were:

  • to raise awareness about situations and practices surrounding legal capacity,
  • to highlight grey zones and controversial issues linked to these and in relation to human rights and ethics, and
  • to make recommendations to ensure that the rights and wellbeing of people with dementia are respected and promoted.

The report provides a balanced and in-depth discussion of relevant issues and contains recommendations for relevant stakeholders and actors.

The report was drafted by the ethics working group, which was set up by Alzheimer Europe in 2020 to explore legal capacity and dementia, drawing on the expertise and experience of the different members of the group. The experts had backgrounds in dementia, law, ethics, restrictions of freedom, human rights, guardianship measures, psychology, policy, care and research. The working group included the Chair of the European Working Group of People with Dementia and a current supporter and former carer of a person with dementia. Because of the COVID-19 pandemic, the group had to operate virtually but still managed to address a broad range of issues and perspectives, and arrive at a consensus on the different positions reflected in the document.

The ethics group was chaired by Dianne Gove from Alzheimer Europe and the members of the group were Carmel Geoghegan (Ireland), Jean Georges (Luxembourg), Alistair Niemeijer (Netherlands), Jim Pearson (United Kingdom), Catherine Quinn (United Kingdom), Sebastian Ritzi (Germany), Helen Rochford Brennan (Ireland), Matthé Scholten (Germany) and Maria Do Rosário Zincke Dos Reis (Portugal) .

The report was mainly targeted at health and social care professionals, lawyers and legal representatives (i.e. all those who may at some point may play a role in decisions related to the exercise and/or loss of legal capacity of people with dementia). In addition, a shorter report, for a broader audience, was prepared by the expert working group and can be located via a link in the full report or directly on Alzheimer Europe’s website.

In addition, thanks to the support of the Robert Bosch Stiftung, Alzheimer Europe was able to develop a short guide entitled “Intercultural dementia care: a guide to raise awareness amongst health and social care workers”, which was published in English, German, French, Bulgarian and Italian, and a Policy Statement. Work also continued on the online database of intercultural dementia care initiatives, which will eventually be transformed into a more user-friendly, sophisticated system.

Objective 4: Supporting dementia research

An important priority of Alzheimer Europe’s actions in the field of supporting dementia research was a mapping exercise of EU-funded research projects. As part of this exercise, a total number of 489 projects were identified which were supported with a total amount of close to EUR 1.2 billion. The next table provides a breakdown of projects according to funding mechanism and total amount of funding:

 

Projects

Ongoing projects

Closed projects

Total Cost (€)

CORDIS – H2020

223

114

109

469 034 793,98

CORDIS – FP7

145

0

145

464 678 492,78

JPND database (2011-2016)

74

2

72

158 079 019,86

JPND website (2017-2019)

23

18

5

31 822 000

 

IMI

17

8

9

350 806 563

AAL

35

5

30

64 651 975

EU Health Programme

21

1

20

6 771 116,30

TOTAL

489

140

349

1 177 924 019,30

For the dissemination of research findings via its newsletter, website and conference, Alzheimer Europe ensured that it did not only focus on basic and clinical science, but also involved researchers and academics with a psychosocial, care, mental health, socio-economic or health systems background. Particular attention was also paid to covering research news and identifying interesting developments from countries whose gross national income is less than 90% of the Union average.

In 2020, Alzheimer Europe published 11 monthly editions of its e-newsletter, with the months of July and August being combined into one. These e-newsletters contained information on Alzheimer Europe’s activities, those of its member organisations and those of the European Alzheimer’s Alliance of MEPs and the European Group of Governmental Experts on Dementia (both formed by Alzheimer Europe).

Updates on European projects in which Alzheimer Europe is involved were also shared, as were relevant policy initiatives and developments at the national and European levels, scientific advances, human interest stories, new resources and publications, and job opportunities in the dementia field. Finally, Alzheimer Europe also made sure to include a number of accounts written by people living with dementia, with many members of the EWGPWD contributing to this section, as well as members of national dementia working groups in our member countries.

As a result of the global COVID-19 pandemic, Alzheimer Europe decided, from March onwards, to develop a repository of valuable online resources. Alzheimer Europe also closely monitored the situation and included relevant news developments for people with dementia and their carers in a special COVID-19 section of the newsletter and website.

A total of 628 articles were featured in Alzheimer Europe’s 2020 monthly e-newsletters (589 in 2019). They can be broken down into categories, as follows:

Subject

Number of articles (2020)

Number of articles (2019)

COVID-19 situation

80

n/a

Activities and projects of Alzheimer Europe

184

127

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

70

73

National policy developments

31

47

Activities and projects of Alzheimer Europe member organisations

70

135

Scientific developments

139

132

Dementia in Society and “Living with dementia” section

29

40

New resources and publications, education and job opportunities

49

35

TOTAL

652

589

There is a noticeable reduction in the number of articles on national policy developments and on members’ activities, but this is due to many articles covering policy developments and members’ activities being related to the COVID-19 pandemic, and therefore published in the dedicated COVID news section.

In 2020, Alzheimer Europe’s website saw a significant increase in visitors compared to 2019.

Month

Visitors (2020)

Visitors (2019)

January

60,650

54,058

February

67,339

57,031

March

62,647

60,311

April

64,467

50,521

May

63,726

44,778

June

50,315

40,898

July

41,138

37,000

August

44,691

42,622

September

64,686

60,146

October

67,309

67,423

November

58,122

67,416

December

67,303

52,597

Total:

712,393

614,633

The organisation also continued to develop its social media presence, on Facebook and Twitter, but also on LinkedIn and YouTube. Alzheimer Europe’s Facebook page registered 8,502 “likes” at the end of 2020, an increase from 8,191 likes at the end of 2019. As for Twitter, the association had reached 11,723 followers at the end of 2020 (10,600 at the end of 2019).

All Alzheimer Europe team members who are involved in projects and attend Alzheimer Europe events are active Twitter users, tweeting from events where they represent the organisation. The total number of Tweets by Alzheimer Europe and its team members in 2020 was 2,313 (2,700 in 2019) and tweet impressions reached 3.1 million (3.49 million in 2019).

Twitter is also used by Alzheimer Europe as a means to increase website traffic. The table below shows Alzheimer Europe’s own Twitter account activity in 2020:

Month

Tweets

Tweet impressions

New followers

January

83

162,000

120

February

62

140,000

158

March

65

137,000

60

April

68

121,000

79

May

61

129,000

72

June

104

144,000

111

July

52

90,700

76

August

49

96,200

49

September

90

132,000

117

October

186

236,000

162

November

88

167,000

96

December

101

163,000

46

Total:

1,009

1,717,900

1,146

Unlike more medical conferences organised in this field, the Alzheimer Europe Conference attracted a mix of health and social care professionals, researchers and academics, but also people with dementia, family carers and policy makers with an interest in dementia. Alzheimer Europe involved its European Working Group of People with Dementia and the INTERDEM network of psychosocial researchers in the organisation and planning of the conference.

The 30th Alzheimer Europe Conference (#30AEC) took place online, from 20-22 October 2020. The event was organised under the theme of “Dementia in a changing world” and was attended by 719 participants from 43 countries (in 2019 The Hague conference was attended by 981 participants from 46 countries), including 39 people with dementia. The programme featured 260 speakers and 72 poster presentations, sharing their research, projects and experiences in an atmosphere of collaboration. The five plenary sessions were dedicated to “Dementia in a changing world”, “Diagnosis and medical management”, “Building dementia-inclusive societies”, “Maintaining dementia as a European priority” and “From research and innovation to clinical and care practice”.

In addition to the 5 plenaries, delegates at #30AEC had a choice of 24 different parallel sessions, and 6 special symposia organised by the European Working Group of People with Dementia and the sponsors of the Alzheimer Europe Conference. The conference ended with an invitation to attend the 31st Alzheimer Europe Conference (#31AEC) in Bucharest, Romania in 2021.

In the evaluation of the Annual Conference, 99.04% of participants said that they would be happy to recommend the Alzheimer Europe Conference to a colleague.

Objective 5: Strengthening the European dementia movement

As the operating grant activities under the current framework programme are coming to an end, Alzheimer Europe surveyed its members to identify how useful the various activities and initiatives of the organisation were for its members. The responses provided by the Alzheimer Europe members will be discussed at a meeting of the organisation in February 2021 and will form the basis for the development of the new Strategic Plan of Alzheimer Europe for the years 2021-2026 which will be developed as part of the organisation’s 2021 operating grant.

As in previous years, this priority primarily targeted the volunteers and staff members of national Alzheimer’s associations. Alzheimer Europe therefore organised a number of capacity building workshops and meetings for organisations to exchange on activities, projects and initiatives at national level. Special attention was paid to prioritise the need of associations from countries whose gross national income is less than 90% of the Union average.

In 2020, Alzheimer Europe organised meetings and capacity building workshops on 19 February, 2 April, 10 June, 10 November, 24 November, 1 December and 7 December. Only the first of these meetings was a face-to-face meeting with all other meetings being organised virtually:

The following issues were included as topics for these capacity building workshops:

  • National campaigning activities
  • National training and education programmes for healthcare professionals involved in the diagnosis, treatment, management and care of people with dementia
  • National responses to the COVID-19 pandemic
  • Lockdown exit strategies and implications for people with dementia and carers
  • Involving people with dementia in the development of and in research linked to medicinal products
  • Health data governance and data sharing: dementia research, patient privacy and EU policy
  • Legal capacity and decision making
  • Developing and running national working groups of people with dementia.

The Alzheimer Europe Board met five times (February, May, June, September and December) during the year and monitored the activities and finances of the organisation in relation to the agreed upon Work Plan and Budget. With the exception of the first meeting, these took place in an online format.

The Annual General Meeting of Alzheimer Europe took place virtually on 5 October. At the meeting, the delegates adopted Alzheimer Europe's 2019 Annual and Financial reports and approved the 2021 Work Plan and Budget. The members also elected a new Board of the association for the period 2020-2022.

As in previous years, Alzheimer Europe was an active member of the European Patients’ Forum (EPF) and European Disability Forum (EDF) and contributed, alongside other European organisations, to the development of cross-disease positions on EU consultations and legislative proposals. In 2020, Alzheimer Europe was particularly involved in the work of the EU4Health Civil Society Alliance, which worked to ensure health remained a priority at an EU level, as well as pushing for an increased budget allocation in the Multiannual Financial Framework (MFF). Alzheimer Europe also continued to support the EDF in their work advocating for a European Disability Strategy.

Alzheimer Europe also continued its cooperation with INTERDEM, a pan-European research network for psychosocial interventions in dementia. The network organised its annual meeting prior to the Virtual Alzheimer Europe Conference and organised a number of parallel sessions during the event. Dianne Gove and Ana Diaz represented Alzheimer Europe at this INTERDEM meeting.

The Executive Director of Alzheimer Europe represented the organisation at the meetings of the European Alzheimer’s Disease Consortium, a network of memory clinics and centres involved in clinical research.

In 2020 Alzheimer Europe also continued its collaboration with the European Academy of Neurology (EAN) and the organisation’s Executive Director joined the Management Board of the EAN Dementia Panel as a member and contributed to the Task Force for the development of a guideline on medical management issues in dementia. He also contributed to the position statement on diagnostic disclosure for patients with mild cognitive impairment developed jointly by an EADC/EAN working group.


Involvement in EU projects

Alzheimer Europe was 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 ensured that the views of people with dementia, carers and Alzheimer’s associations were included, contributed to the discussion of the ethical issues raised by the projects and supported or lead the dissemination activities.

In 2020, Alzheimer Europe was a full partner in 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. If successful, this will offer personalised 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 was represented in this project by Dianne Gove and Ana Diaz. In 2020, they:

  • presented the past and planned contribution of the EWGPWD in the project at the 3rd Steering Committee Meeting and Partner Workday, which was eventually held virtually
  • helped organise a webinar and supported the Chair of the European Working Group of People with Dementia to prepare a presentation, which was eventually delivered by Carmel Geoghegan, who regularly supports her activities in the EWGPWD.
  • provided feedback on presentations and communications materials for conferences and dissemination materials targeted at the general public.
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 Alzheimer's disease in a pre-symptomatic stage, in order to better select patients for trials. In addition, they monitor changes in beta amyloid deposition in the brain in order to quantify the impact of novel therapies.

Alzheimer Europe was represented by Jean Georges, Cindy Birck and Dianne Gove in this project. In 2020, they:

  • represented Alzheimer Europe in the AMYPAD Executive Committee and its weekly telephone conference and presented regular updates on the projects’ communication and dissemination activities,
  • co-led the work package on ethics, communication and dissemination,
  • organised and chaired the monthly communication teleconference meetings,
  • coordinated the production and the regular maintenance of the communication tools (i.e. website, newsletter, Twitter, Research Gate, slide deck, YouTube),
  • provided social media support for AMYPAD presenters at selected international and European conferences,
  • contributed to the internal track of dissemination activities,
  • developed the AMYPAD contributor list and followed up the AMYPAD authorship policy and publication approval policy,
  • represented the AMYPAD comms team in the Neuronet communication expert community,
  • attended the online General Assembly meeting,
  • contributed to the efficient communication of the project via AE website, newsletter and events.

The AMYPAD project was also presented by Gill Farrar at the 30th Alzheimer Europe Conference as part of the Neuronet annual event and had a branded virtual booth during the conference. The project also had the opportunity to hold a Featured Research Session, consisted of four oral presentations, at the online 2020 Alzheimer’s Association International Conference (AAIC); Alzheimer Europe organised a live Q&A where delegates had the opportunity to interact with the AMYPAD chairs and speakers.

EPAD

The European Prevention of Alzheimer’s dementia (EPAD) initiative was a collaborative research effort 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 established a European-wide register of research participants.

Alzheimer Europe was represented by Jean Georges, Cindy Birck and Dianne Gove in this project. In 2020, they:

  • co-led the work package on dissemination and participated in the monthly work package teleconferences,
  • coordinated the production and the regular maintenance of the communication and dissemination tools (i.e. website, newsletter, social media channels, Research Gate, YouTube),
  • drafted and finalised the last EPAD comms deliverable D6.5 (Impact and evaluation report),
  • coordinated the development of a new section dedicated to the EPAD sample and data on the project’s website,
  • developed a final video showcasing the EPAD project with key pictures, photos from the various EPAD events and rolling credits that named everyone who was involved in the project,
  • represented Alzheimer Europe in the Publications Approval Committee and Clinical Development Executive (CDEx),
  • represented the EPAD comms team in the Neuronet communication expert community,
  • attended the online General Assembly meeting and presented the projects’ communication and dissemination activities,
  • participated and contributed to the EPAD Change Management Team tasked with preparing the sustainability of the programme after the IMI funding period,
  • contributed to the efficient communication of the project via AE website, newsletter and events,
  • contributed to telephone conferences of the ethics working group, reviewed the final ethics deliverable D8.5 (Final report on ethical, legal and social implications and recommendations) and co-authored an article on the Participant Panel.

The EPAD project was also presented by Rodrigo Barnes and Colin Veal at the 30th online Alzheimer Europe Conference, as part of the Neuronet annual event.

EURO-FINGERS

The JPND-funded project, EU-FINGERS (Multi-modal precision prevention toolbox for dementia in Alzheimer’s disease), kicked off in 2020 with the aim of advancing preventive strategies for risk reduction and prevention of cognitive decline and Alzheimer’s dementia. An important outcome of this project will be the “Multimodal Precision Prevention Toolbox”. This Toolbox will include different tools enabling the next generation of clinical trials, to identify precision prevention strategies for Alzheimer’s dementia. Precision Medicine considers individual characteristics, in terms of biology, lifestyle and environment, to optimise disease treatment and prevention.

Alzheimer Europe was involved in the Patient and Public Involvement (PPI) activities and co-led the communication activities of the project. Alzheimer Europe was represented by Jean Georges, Ana Diaz, Cindy Birck and Dianne Gove. In 2020, they:

  • participated in the online kick-off meeting in March and the online general assembly meeting in December,
  • identified all third parties interested in the activities and results of the project,
  • coordinated the production and regular maintenance of the project’s social media channels (i.e. Twitter, LinkedIn),
  • provided support in the development of the project’s website,
  • coordinated the production of an article highlighting the launch of the project which was published in the AE Dementia in Europe magazine in June,
  • contributed to the efficient communication of the project via AE website, newsletter and events,
  • started to plan the PPI activities including the development of the best strategy to involve people with AD across the disease continuum despite the COVID 19 pandemic,
  • developed the relevant materials for the Advisory Board members (i.e. terms of reference with information about the project and the Advisory Board, expression of Interest to take part in the Informative meetings, form to formally join the Advisory Board),
  • in collaboration with project partners identified several members from the countries involved in the project with an interest in joining the Advisory Board.
Neuronet

Neuronet is an IMI-funded coordination and support action (CSA), which received funding in 2019 and which aims to boost synergy and collaboration between IMI projects working on neurodegenerative diseases (NDD) such as Alzheimer’s disease and Parkinson’s disease. Neuronet aims collects and analyses information and assets from the various NDD initiatives in the IMI portfolio, aiming to identify gaps, enhance visibility and multiply the impact of the portfolio as a whole. To achieve this, Neuronet developed a Knowledge Base platform and an asset map of the portfolio, among other resources. The Neuronet consortium is led by SYNAPSE Research Management Partners and Janssen.

Alzheimer Europe was represented by Jean Georges, Christophe Bintener, Cindy Birck and Angela Bradshaw. In 2020, they:

  • co-led the work package on dissemination and outreach,
  • contributed to work packages on projects & impact analysis, programme integration), tools & services and CSA management and sustainability and co-authored a number of project deliverables,
  • authored the following deliverables: Interim report on dissemination activities, Public event proceedings and videos - Year 1, First version of guidance on standards and practices for protecting data privacy
  • coordinated the production and the regular maintenance of the communication tools and channels (i.e. website, newsletter, social media channels),
  • contributed to the design development of the Knowledge Base and updated modules on publications, deliverables, tools and events,
  • coordinated and chaired meetings of the Communications Expert Community,
  • organised and coordinated the Neuronet sessions at the virtual Annual Conference of Alzheimer Europe where they held a presentation and moderated a session,
  • Organised a European Parliament Lunch Debate on “The Innovative Medicines Initiative (IMI): Advancing Alzheimer’s research through private-public partnerships” at which the project was presented,
  • attended the fortnightly teleconference meetings of the Executive Committee and monthly work package teleconference meetings,
  • moderated the working group on patient privacy and ethics,
  • participated in the working groups on data sharing, HTA/regulatory affairs and sustainability,
  • contributed to the development of a research paper,
  • contributed to the efficient communication of the project via AE website, newsletter and events,
  • attended the consortium meetings and updated the consortium on the communication and dissemination activities.
PARADIGM

PARADIGM is a European IMI-funded project, which started in March 2018 and came to an end in November 2020. PARADIGM sought to improve the involvement of patients in the process of developing medicines. Alzheimer Europe was part of this project and its role was to ensure that the voices of people affected by dementia were taken into account in the project.

Alzheimer Europe was represented by Ana Diaz who contributed to all the work packages of the project. Dianne Gove contributed to the Public Involvement activities and Kate Boor-Ellis to the dissemination activities and engagement with the dementia community. In 2020, they:

  • Contributed to the development, testing and dissemination of the Monitoring and Evaluation Framework developed by the project.
  • Contributed to the development of all PARADIGM tools.
  • Co-led the development of two of the PARADIGM tools including their development, integration of feedback from internal and public consultations, collaboration with design team and dissemination activities.
  • Facilitated the involvement of members of the EWGPWD and their supporters in several online project meetings and webinars and in the PARADIGM-PREFER workshop.
  • Organised consultations with members of the EWGPWD and of Alzheimer associations in relation to the Monitoring and Evaluation Framework and PARADIGM tools
  • Participated and co-led sessions in several project workshops, including a workshop dedicated to Public Involvement in medicines development in the CEE region. 
  • Participated in all sessions of the 2020 virtual Patient Engagement Open Forum, providing presentations of the tools co-led by AE.
  • Participated in all PARADIGM Question and Answer sessions for patient communities.
  • Co-authored papers published in peer-reviewed journals.
  • Contributed to the dissemination of the project and its findings via AE’s electronic newsletter, Dementia in Europe Magazine and social media.
  • Provided support to the PARADIGM mini-campaigns and other project activities in Twitter.
  • Contributed to the engagement with Alzheimer associations and people affected by dementia (PARADIGM virtual booth at AE 30th Annual Conference, AE Alzheimer’s Associations Academy and several blogs for the project’s website).    
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. 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 the mHealth platform in a culturally appropriate form in a range of health care settings.

Alzheimer Europe supported the communication and dissemination activities and was represented by Jean Georges and Cindy Birck. In 2020, they:

  • attended the online general assembly meeting,
  • participated in the monthly telephone conferences of the PRODEMOS WP leads,
  • started the planning and development of the news items for the PRODEMOS mHealth platform,
  • contributed to the efficient communication of the project via AE website, newsletter and events.
RADAR-AD

The RADAR-AD (Remote Assessment of Disease and Release – Alzheimer’s disease) project funded by the Innovative Medicines Initiative started in 2019. The ultimate goal of the project is the development and validation of technology-enabled, quantitative and sensitive measures of functional decline in people with early-stage Alzheimer’s disease.

Alzheimer Europe’s role in the project was to lead and support the patient and public involvement activities of the project. The organisation was represented by Ana Diaz and Dianne Gove in this project. In 2020, they:

  • attended the General Assembly which was held virtually,
  • took part in regular online meetings with researchers from various work packages to ensure the mutually beneficial and ongoing meaningful involvement of the European Working Group of People with Dementia, their supporters and two people with MCI in the RADAR-AD Patient Advisory Board,
  • organised a series of online consultations with the full RADAR-AD Patient Advisory Group, as well as several activities (by email, zoom and telephone) with the Core Group of the RADAR-AD Patient Advisory Group on a range of topics, gave feedback on the participant manual and reviewed changes to the protocol of the trial, as well as to information sheets and consent forms for the sub-study.
  • supported other members of the WP team conducting qualitative research on ethical issues with members of the RADAR-AD Patient Advisory Board,
  • co-authored an article on functional domains.
RECOGNISED

The RECOGNISED project (Retinal and cognitive dysfunction in type 2 diabetes: unravelling the common pathways and identification of patients at risk of dementia) started in January 2020 and is funded by Horizon 2020 for a 4-year period. RECOGNISED will apply innovative approaches to identify the molecular mechanisms involved in the high prevalence of cognitive impairment and dementia in the T2D population. It will use this knowledge to characterise clinical phenotypes based on retinal functional and structural characteristics and serum biomarkers in order to stratify the risk and severity of cognitive decline.

Alzheimer Europe contributed to the dissemination and exploitation (WP8) and communication activities (WP9) work packages. Alzheimer Europe was represented by Jean Georges and Angela Bradshaw. In 2020, they:

  • Participated in General Assembly meetings and regular work package meetings
  • Attended meetings of the Dissemination and Exploitation Board (DEB)
  • Contributed to the development of the RECOGNISED communication plan
  • Contributed to the production and maintenance of the communication tools (website, leaflet, twitter)
  • Contributed to the efficient communication of the project via the Alzheimer Europe website, newsletter and events
VirtualBrainCloud

The VirtualBrainCloud project was launched in December 2018 and will conclude at the end of 2022. VirtualBrainCloud will develop and validate a decision support system that provides access to high quality multi-disciplinary data for clinical practice. The result will be a cloud-based brain simulation platform to support personalised diagnostics and treatments for neurodegenerative diseases (NDD). The software will be tailored to the individual, bridging multiple scales to identify key mechanisms that predict NDD progression. The interdisciplinary VirtualBrainCloud consortium will also develop robust solutions for legal and ethical matters.

Alzheimer Europe contributed to the ethical and legal (work package 2) and communication and dissemination (work package 9) activities of VirtualBrainCloud. Alzheimer Europe was represented by Jean Georges and Angela Bradshaw. In 2020, they:

  • Participated in quarterly General Assembly meetings and regular work package meetings
  • Supported the organisation of a 1-day GDPR workshop: “Bridging the gap between new technologies, health research and the protection of personal data: GDPR impact”
  • During this workshop, delivered a presentation on ethics and the patient perspective
  • Organised two parallel sessions at the 30th Alzheimer Europe annual conference
  • Co-developed and hosted a Virtual Booth at the 30th Alzheimer Europe annual conference
  • Coordinated an article on the VirtualBrainCloud conference sessions for the Dementia in Europe magazine
  • Co-hosted a Virtual Booth at the European Open Science Cloud EXPO
  • Drafted and finalised D2.6 - Stakeholder conference report: specific issues of neurodegenerative disease: the patient’s perspective
  • Contributed to the efficient communication of the project via the Alzheimer Europe website, newsletter and events

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.

DISTINCT

DISTINCT (Dementia: Intersectoral Strategy for Training and Innovation Network for Current Technology) is an EU funded Marie Skłodowska-Curie Innovative Training Network which received continued funding in 2020. Coordinated by the University of Nottingham, the network brings together 13 research organisations which host 15 early-stage researchers who are focusing on improving the usability of technology in dementia care.

Alzheimer Europe and its European Working Group of People with Dementia were involved in this project and the organisation was represented by Dianne Gove and Ana Diaz in this project. In 2020, they:

  • organised and participated, together with the Chair of the EWGPWD, in an online session at the DISTINCT Winter school on public involvement
  • organised and agreed on secondment plans for two early-stage researchers from DZNE (to start in 2021)
  • contributed towards a consultation on the topic of Advance Care Planning with the members of the EWGPWD and one of ESRs from the project
MIRIADE

MIRIADE (Multi-omics Interdisciplinary Research Integration to Address DEmentia diagnosis) is another EU funded Marie Skłodowska-Curie Innovative Training Network which received continued funding in 2020. The project aims to generate a novel generation of scientists able to accelerate fluid biomarker development for dementias.

Alzheimer Europe’s role in the project was to support the dissemination and communication activities and provide secondments to two early-stage researchers during the course of the project. The organisation was represented by Jean Georges, Ana Diaz and Dianne Gove in this project. In 2020, they:

  • attended online meetings
  • organised an interactive virtual session during one of the training workshops with the Chair and Vice Chairs of the European Working Group of People with Dementia together with the early-stage researchers.
PRIME

The PRIME (Prevention and Remediation of Insulin Multimorbidity in Europe) brings together a multidisciplinary team to (1) extend our understanding of insulin multimorbidity across the lifespan, (2) understand the causal mechanisms linking somatic and mental insulin-related illnesses, (3) develop tools for early diagnosis, improved clinical care, and prevention of insulin-related lifespan multimorbidity.  PRIME aims to bring this new knowledge to society, based on e.g. repurposing medication and lifestyle interventions (diet/exercise monitored by mHealth assessment), identifying and validating novel drug targets, developing and testing candidate biomarkers, and by improving existing medical guidelines and policy. Furthermore, educational approaches to inform clinicians, patients, and the general public will be developed.

Alzheimer Europe contributed to the policy outreach and dissemination activities of PRIME. Alzheimer Europe was represented by Jean Georges and Angela Bradshaw. In 2020, they:

  • Participated in the kick-off meeting, general assembly meeting, webinars and other PRIME events
  • Contributed to the work of the Scientific and Ethical Advisory Board (SEAB) and Internal Innovation Board (IIB)
  • Reviewed the PRIME communication plan
  • Contributed to the efficient communication of the project via the Alzheimer Europe website, magazine, newsletter and events.
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. Alzheimer Europe was represented by Dianne Gove and Ana Diaz in this project. In 2020, they continued to liaise with the SPAN+ researchers and to keep the EWGPWD updated on progress in the context of their ongoing involvement in this work.

Corporate affairs

European Parliament lunch debates/workshops

As a result of the COVID-19 pandemic, Alzheimer Europe only held one in-person European Parliament lunch debate in 2020:

  • On 18 February 2020, Christophe Hansen, MEP (Luxembourg) chaired a European Parliament lunch debate on “The Innovative Medicines Initiative (IMI): Advancing Alzheimer’s research through private-public partnerships”. The meeting was co-hosted with the Neuronet Coordinated Support Action, with presentations from Carlos Diaz, Project Coordinator for the Neuronet project, Bart Vannieuwenhuyse, Co-Lead of the European Medical Information Framework (EMIF) project (2013 – 2017) and Pierre Meulien, Executive Director of IMI.
  • On 9 December 2020, Sirpa Pietikäinen, MEP (Finland) chaired an online European Parliament Workshop on “Maintaining dementia as a public health and research priority during the COVID-19 pandemic”. The meeting heard presentations from Dianne Gove, Angela Bradshaw and Owen Miller, from Alzheimer Europe, as well as Isidro Laso Ballesteros, from the Cabinet of Mariya Gabriel, Commissioner for Innovation, Research, Culture, Education and Youth, and Stefan Schreck, Adviser to the European Commission Health & Food Safety Directorate General.

Both evens were well-attended, with representatives from the European Parliament and Commission, AE member associations, national government, people with dementia and their carers, and the organisation’s sponsors, all in attendance.

Dementia in Europe magazine

In 2020, Alzheimer Europe published three issues of the Dementia in Europe magazine, which included Alzheimer Europe’s activities, such as the lunch debates and workshop, as well as covering relevant developments at a European and national level which had relevance for dementia policy. As a result of the COVID-19 pandemic, we took the decision to move the Dementia in Europe magazine to a digital-only format. As such, only the February 2020 edition was available as a printed copy.

Over the three editions of the magazine, we were pleased to have interviews and contributions from a number of European and national policy-makers, including:

  • Deirdre Clune, MEP (Ireland)
  • Franziska Giffey, Federal Minister for Family Affairs, Senior Citizens, Women and Youth (Germany)
  • Christophe Hansen, MEP (Luxembourg)
  • Sirpa Pietikäinen, MEP (Finland)
  • Dubravka Suica, EU Vice-President for Democracy and Demography
  • Svandís Svavarsdóttir, Minister for Health (Iceland)
  • Hilde Vautmans, MEP (Belgium)
  • Adam Vojtech, Minister of Health (Czech Republic)

The 2020 issues included articles on a range of other relevant policy matters:

  • New national dementia strategies in Germany, Iceland and Spain
  • EU-funded research programmes into dementia (in which Alzheimer Europe was involved)
  • EU developments in relation to the EU4Health programme, the Horizon Europe programme and the Multiannual Financial Framework (MFF)
  • Meetings of the European Group of Governmental Experts on Dementia
  • The impact of the COVID-19 pandemic on people with dementia and carers (including contributions from our EWGPWD)
  • Activities of our national member organisations in campaigning and awareness raising
Clinical Trial Watch

In 2020, Alzheimer Europe continued with the development of its Clinical Trials Watch which provides accessible and up-to-date information on clinical trials that are investigating drugs for Alzheimer’s disease and other types of dementia. In 2020, Alzheimer Europe focused on clinical trials that were:

  • Recruiting participants
  • Conducted in at least one European country
  • In phase II or phase III.

At the end of 2020, 8 phase II and 6 phase III clinical trials recruiting participants in Europe were included on the AE website.

Policy report “Dementia as a European Priority”

On 9 December 2020 Alzheimer Europe launched a new report, "Dementia as a European Priority - A Policy Overview", examining past EU policies and initiatives on dementia and setting out recommendations for future priorities across Europe. The report was developed in the context of the negotiations which were taking place within the European Union in relation to the Multiannual Financial Framework (MFF), the EU4Health programme and the Horizon Europe research programme.

The report aimed to provide an overarching and high-level overview of the current policy context in relation to dementia, examining the most relevant and high-profile actions of recent years, reflecting:

  • The work of Alzheimer Europe and the European Dementia Movement
  • Different actions and initiatives of the EU
  • Progress and ongoing challenges made at a national level
  • The outstanding challenges that must be addressed

In the report, Alzheimer Europe sets out the position of dementia as a political priority in Europe in recent years, looking at political support for raising the profile of dementia, including different levels of support within the European Commission, Council and Parliament. Within the report, questions asked by Members of the European Parliament, conclusions and events hosted as part of the activities of the rotating Presidency of the EU, as well as an overview of key areas of work funded by the EU, are all set out to illustrate the progress which has been made over the past decade.

At a national level, the progress in the number of national countries developing and implementing national dementia strategies is also included, showing a considerable increase in the number of countries with such policies in place. Additionally, the document provides a brief overview of some of the work in which Alzheimer Europe has been engaged in recent years, such as the key activities in campaigning for change (including the Paris and Glasgow Declarations from 20006 and 2014), supporting and facilitating networks for sharing information and good practice (e.g. European Group of Governmental Experts on Dementia), as well as the generation of knowledge through our reports and publications.

Despite the demonstrable the progress in recent years, the report highlights that people living with dementia continue to face a number of challenges, particularly in relation to the diagnosis and management of the condition, alongside the continued stigma associated with the disease.   Wider societal challenges are also identified, including the increasing prevalence of dementia (which is estimated to double by 2050) and the economic cost of dementia to countries.

As a result, the report sets out a number of recommendations for the EU, outlining specific areas in which dementia should be prioritised across international, health, research and social policy. These include:

  • Prioritising dementia research in EU Research Programmes (including Horizon Europe), providing a fair allocation of resources and funding for existing programmes and better coordination between programmes
  • Prioritising dementia within policies relating to chronic diseases, mental health and ageing, both at an EU and national level
  • Supporting Member States to work towards the implementation of the World Health Organization's Global Action Plan on Dementia 2017-2025
  • Recognising dementia as a disability and including dementia in disability policies.
Data sharing initiative

Thanks to an educational grant from Gates Ventures, Alzheimer Europe started a mapping exercise of European research projects (with a focus on their data sharing practices) in May 2019. The aim of the project is to understand the legal framework, the facilitators and barriers to data sharing, as well as the perceptions of scientists, research participants and the general public towards data sharing and develop recommendations for policy makers.

This project is coordinated by Angela Bradshaw and Owen Miller. In 2020, they:

  • Organised and moderated an Alzheimer’s Association Academy workshop on data sharing
  • Performed a mapping exercise of Horizon 2020-funded dementia research projects
  • Attended regular meetings and workshops of the “DataSavesLives” initiative (a multi-stakeholder initiative aimed at raising wider patient and public awareness of health data)
  • Updated Gates Ventures on the progress of the exercise in teleconference meetings with Gates Ventures team members
  • Disseminated updates on the project and relevant news via the Alzheimer Europe website and newsletter

Meetings organised by Alzheimer Europe in the framework of the 2020 Operating Grant

Date

Meeting

Venue

17-18 February

AE Board

Brussels, Belgium

18-20 February

European Working Group of People with Dementia

Brussels, Belgium

19 February

AE Public Affairs meeting

Brussels, Belgium

24 March

Meeting of the European Governmental Expert Group on Dementia

Online

27 March

AE intercultural care and support expert working group

Online

2 April

COVID-19 coping meeting with Alzheimer Europe members

Online

15 April

European Working Group of People with Dementia

Online

7 May

AE Ethics working group meeting

Online

19 May

AE Board

Online

4 June

Meeting of the European Governmental Expert Group on Dementia

Online

8 June

AE Board

Online

10 June

AE Public Affairs meeting

Online

11 June

European Working Group of People with Dementia

Online

7-10 July

European Working Group of People with Dementia

Online

11 August

Meeting with the Executive of the European Working Group of People with Dementia

Online

8 September

Meeting with Alzheimer Switzerland to say farewell to the Swiss representative of the European Working Group of People with Dementia

Online

30 September

AE Board

Online

5 October

AE Annual General Meeting

Online

7 October

European Working Group of People with Dementia

Online

12 October

European Working Group of People with Dementia

Online

16, 19 & 20 October

Networking event for 30AEC delegates with dementia

Online

20-22 October

AE Conference “Dementia in a changing world”

Online

23 October

European Working Group of People with Dementia

Online

10 November

Alzheimer's Association Academy meeting

Online

24 November

Alzheimer's Association Academy meeting

Online

1 December

Alzheimer's Association Academy meeting

Online

7 December

AE Board

Online

7 December

Alzheimer's Association Academy meeting

Online

8 December

Meeting of the European Group of Governmental Experts on Dementia

Online

10 December

Executive meeting of the European Working Group of People with Dementia

Online

11 December

Second Alzheimer Europe Ethics working group meeting

Online

14 December

European Working Group of People with Dementia

Online

17 December

European Working Group of People with Dementia Christmas gathering

Online

Meetings attended by Alzheimer Europe representatives in the framework of the 2020 Operating Grant

Date

Meeting

Venue

21 January

Meeting with Alzheimer Belgique

Brussels, Belgium

27 January

Meeting with France Alzheimer

Paris, France

12 February

Ethics Committee meeting of the Luxembourg Alzheimer’s Association

Luxembourg, Luxembourg

3-4 March

Meeting of the Patients’ and Consumers’ Working Party of the European Medicines Agency (EMA)

Amsterdam, Netherlands

6 April

WHO webinar

Online

10 April

European Disability Forum’s (EDF) meeting on COVID-19

Online

25 April

General Assembly of the European Patients’ Forum (EPF)

Online

4-5 May

European Patients’ Forum (EPF) consultation webinars

Online

7 May

Meeting of the Core Group of the EU4Health campaign

Online

8 May

European Disability Forum’s (EDF) webinar

Online

20 May

European Disability Forum’s (EDF) meeting

Online

27 May

Mental Health Europe (MHE) webinar

Online

29 May

Meeting of the Core Group of the EU4Health campaign

Online

2 June

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

Online

11 June

Online engagement session for EU4Health campaign

Online

25 June

Patient Access Partnership and DG SANTE meeting

Online

26 June

WHO briefing

Online

1 July

COVID-19 and mental health platform meeting

Online

7 July

Core Group of the EU4Health coalition meeting

Online

13 July

Scientific Panel for Health webinar

Online

15 July

Meeting to relaunch the MEP Alliance on Mental Health

Online

28 July

European Patients’ Forum (EPF) webinar

Online

6 August

Meeting with WHO

Online

16 September

Meeting with members of Alzheimer Portugal

Online

17 September

Incisive Health meeting

Online

17 September

European Disability Forum’s (EDF) Group of European Non-Government Organisations

Online

23 September

European Medicines’ Agency (EMA) workshop

Online

15 October

Hearing Health Forum EU workshop

Online

23 October

EMA virtual training session

Online

26 October

EU Health Coalition summit

Online

26 October

Meeting with WHO

Online

26 October

EU Health Coalition summit

Online

26 October

France Alzheimer and the French Table Tennis Federation meeting

Online

3 November

EU4Health Civil Society Alliance meeting

Online

16 November

Patients and Consumers Working Party (PCWP) of the European Medicines Agency (EMA) meeting

Online

3 December

WHO meeting

Online

15 December

European Medicines’ Agency (EMA) EU Big Data Stakeholder Forum

Online

Other meetings organised by Alzheimer Europe or attended by Alzheimer Europe representatives in 2020

Date

Meeting

Venue

10 February

PARADIGM project meeting

Brussels, Belgium

13-15 January

PRIME project meeting

Frankfurt, Germany

15-16 January

ADAIR project meeting

Prague, Czech Republic

20 January

DataSavesLives meeting

Brussels, Belgium

21 January

EFPIA task force meeting

Brussels, Belgium

27 January

RECOGNISED project launch

Barcelona, Spain

28 January

Neuronet project, Scientific Coordination Board meeting

Madrid, Spain

4 February

EPAD project Change Management Team meeting

Barcelona, Spain

10 February

PARADIGM project meeting

Brussels, Belgium

18 February

Neuronet project consortium meeting

Brussels, Belgium

18 February

Alzheimer Europe Lunch Debate

Brussels, Belgium

18 February

Alzheimer Europe Company Round table

Brussels, Belgium

18 February

Biogen information meeting

Brussels, Belgium

20 February

EPAD project investigators meeting

Amsterdam, Netherlands

26 February

Neuronet project meeting

Diegem, Belgium

4 March

RADAR-AD project annual meeting

Online

11 March

EURO-FINGERS project kick-off meeting

Online

16 March

PREFER-PARADIGM project webinar

Online

16 March

AD Detect & Prevent project steering committee meeting

Online

17 March

RECOGNISED project Dissemination and Exploitation Board meeting

Online

24 March

Judging Panel for the AAL Smart Ageing Prize

Online

31 March

PREFER-PARADIGM project workshop

Online

31 March

Meeting of the dementia panel of the European Academy of Neurology

Online

1-2 April

PARADIGM project workshop

Online

6 April

Exchange with Sodexo Europe

Online

15-16 April

International Congress and Convention Association (ICCA) webinar

Online

21-22 April

PARADIGM project workshop

Online

28 April

International Congress and Convention Association (ICCA) webinar

Online

29-30 April

General assembly meeting VirtualBrainCloud project

Online

5 May

Health First Europe webinar

Online

11 May

European Academy of Neurology and the European Alzheimer’s Disease Consortium meeting

Online

12 May

Health Advisory Board of GSK meeting

Online

12 May

PARADIGM project workshop

Online

13 May

DataSavesLives meeting

Online

14 May

VirtualBrainCloud project webinar

Online

14 May

EPAD project meeting

Online

14 May

AD/ADRD Funder Consortium meeting convened by the US Alzheimer’s Association

Online

15 May

Biogen AD Advocacy Steering Committee meeting

Online

18 May

Roche scientific Advisory Board meeting

Online

18 May

Neuronet project meeting

Online

19 May

EFPIA webinar

Online

23 May

Dementia Panel of the European Academy of Neurology (EAN)

Online

23 May

IPA and INTERDEM webinar

Online

23-26 May

European Academy of Neurology (EAN) Conference

Online

25 May

Roche Scientific Advisory Board meeting

Online

25 May

SoCaTel Advisory Board meeting

Online

26 May

PRODEMOS project meeting

Online

28 May

EURO-FINGERS project meeting

Online

3 June

Neuronet project meeting

Online

4 June

DataSavesLives tweet chat

Online

5 June

Neuronet project meeting

Online

9 June

AE Company Round table

Online

9 June

ADAIR project general assembly

Online

11 June

Roche workshop

Online

12 June

Neuronet project meeting

Online

15-16 June

Workshop by University Hospital of Geneva

Online

17 June

European Alzheimer’s Disease Consortium and the European Academy of Neurology meeting

Online

18 June

Biogen webinar

Online

19 June

RECOGNISED project webinar

Online

23 June

AD-Detect-Prevent project webinar

Online

25-26 June

PARADIGM project Open Forum

Online

29-30 June

PRODEMOS project general assembly meeting

Online

30 June

Science|Business webconference

Online

30 June

European Federation of Neurological Associations (EFNA) webinar

Online

1 July

DataSavesLives meeting

Online

9 July

ADAIR project leadership meeting

Online

9 July

PARADIGM project online Patient Engagement Open Forum

Online

10 July

Meeting with Roche

Online

14 July

EFPIA webinar

Online

16 July

VirtualBrainCloud project interim review

Online

22-24 July

Biogen Advocacy Steering Committee

Online

23 July

WW-FINGERS Network meeting

Online

27-31 July

Alzheimer’s Association International Conference (AAIC)

Online

29 July

Meeting with company “Brainstorm”

Online

29 July

World Dementia Council meeting

Online

30 July

Biogen webinar

Online

4 August

JPI stakeholder workshop

Online

5 August

Call with TauRx

Online

12 August

Meeting with Pfizer

Online

13 August

Centre for Dementia Prevention and Alzheimer Scotland webinar

Online

26 August

DISTINCT project meeting

Online

2 September

Meeting with Gates Ventures

Online

7 September

Neuronet project meeting

Online

9 September

RADAR-AD project PAB meeting

Online

10 September

Information meeting with TauRx

Online

15 September

Meeting with Brain Health Scotland

Online

18 September

VirtualBrainCloud project meeting

Online

21 September

PAVE project meeting

Online

23 September

EEPO Global Webinar

Online

24 September

Biogen Expert Panel

Online

28 September

EFID webinar

Online

28 September

European Foundation Initiative on Dementia meeting

Online

29 September

Neuronet project meeting

Online

30 September-1 October

EPAD project meeting

Online

1 October

Neuronet project meeting

Online

2 October

Judging panel for the AAL Smart Ageing Prize

Online

2 October

Mental Health Europe webinar

Online

6 October

Neuronet project meeting

Online

6 October

VirtualBrainCloud project meeting

Online

8-9 October

AMYPAD project meeting

Online

13 October

Patients BioForum hosted by EuropaBio

Online

15 October

PARADIGM PEOF session

Online

16 October

INTERDEM taskforce meeting

Online

26 October

PARADIGM project meeting

Online

27 October

PRODEMOS project meeting

Online

29 October

Language and communication in multilingual speakers with dementia project closing meeting

Online

2-3 November

International Congress and Convention Association (ICCA) Congress

Online

4 November

International Congress and Convention Association (ICCA) BeNeLux Chapter meeting

Online

5 November

Meeting with the Deutsches Zentrum für Neurodegenerative Erkrankungen e. V. (DZNE)

Online

5 November

PARADIGM Patient Engagement Open Forum (PEOF)

Online

5 November

DISTINCT project meeting

Online

9 November

PRIME project meeting

Online

9,16 & 20 November

PARADIGM project Q&A sessions

Online

12 November

Neuronet project Task Force meeting

Online

12 November

MIRIADE project training days

Online

13 November

Biogen Europe meeting

Online

16 November

Meeting with Global Alzheimer’s Platform

Online

17 November

European Open Science Cloud forum

Online

17 November

Information meeting by Nutricia

Online

18 November

IEEPO2020 Virtual World Café

Online

18 November

Patients BioForum Patient Think Tank

Online

18 November

DISTINCT project consultation with EWGPWD

Online

18-19 November

BestCities Global Forum 2020

Online

19 November

EuroHealthNet workshop

Online

19 November

VirtualBrainCloud meeting

Online

19 November

MIRIADE project meeting

Online

19 November

Meeting with Jonathan de Jong & Teun Toebes

Online

20 November

Neuronet project Task Force meeting

Online

20 November

Biogen Advisory Committee meeting

Online

23 November

PARADIGM project farewell ceremony

Online

23 November

Patient Engagement Open Forum (PEOF)

Online

24 November

Biogen Advisory Committee meeting

Online

25 November

Meeting with Roche

Online

27 November

RADAR-AD project meeting

Online

27 November

European Academy of Neurology (EAN) and the European Federation of Neurological Associations (EFNA) meeting

Online

30 November

Neuronet project meeting

Online

1 December

Management Team meeting of the Dementia Panel of the European Academy of Neurology

Online

2 December

RADAR-AD project Patient Advisory Board meeting

Online

2-4 December

Lausanne VII meeting

Online

3 December

EU Convention Bureaux Network

Online

7 December

Guest lecture at University of Vechta

Online

9 December

European Parliament Workshop

Online

9 December

AE Company Round table

Online

10 December

Meeting with EFPIA Alzheimer’s team

Online

10 December

International Congress and Convention Association (ICCA) Workshop

Online

11 December

Health Advisory Board meeting of GSK

Online

11 December

Neuronet project meeting

Online

14 December

Meeting with Essity

Online

14 December

EURO-FINGERS project meeting

Online

17 December

Neuronet project meeting

Online

18 December

ADDIA project meeting

Online


In 2020, Alzheimer Europe staff contributed to the following scientific publications:

Alzheimer Europe (2020).Dementia in Europe Data sharing in dementia research – the EU landscape. ISBN 978-2-919811-00-7, Luxembourg, Alzheimer Europe.

Alzheimer Europe (2020).Dementia as a European Priority – A Policy Overview. ISBN 978-2-9199578-5-9, Luxembourg, Alzheimer Europe.

Alzheimer Europe (2020).Legal capacity and decision making: The ethical implications of lack of legal capacity on the lives of people with dementia. ISBN 978-2-9199578-7-3, Luxembourg, Alzheimer Europe.

Angehrn Z, Sostar J, Nordon C, Turner A,Gove Det al. (2020). Ethical and Social Implications of Using Predictive Modeling for Alzheimer’s Disease Prevention: A Systematic Literature Review.Journal of Alzheimer's Disease, 76(3): 923 – 940. DOI: 10.3233/JAD-191159. https://doi.org/10.3233/jad-191159

Boada M (…/…) …Georges Jet al. (2020). Pre‐screening models for patient engagement: The MOPEAD project: Neuropsychology: Awareness of cognitive capacities and subjective cognitive decline.Alzheimer’s and Dementia, 16(S6). DOI: 10.1002/alz.044796. https://doi.org/10.1002/alz.044796

Clarke C (…/...)Diaz A, Gove D, Vernooij-Dassen M and Wolverson E (2020). Measuring the well-being of people with dementia: a conceptual scoping review.Health and Quality of Life Outcomes, 18(249). DOI: 10.1186/s12955-020-01440-x https://hqlo.biomedcentral.com/track/pdf/10.1186/s12955-020-01440-x.pdf

McKeown A, Turner A, Angehrn Z,Gove Det al. (2020). Health Outcome Prioritization in Alzheimer's Disease: Understanding the Ethical Landscape.Journal of Alzheimer's Disease, 77(2020): 339–353. DOI:10.3233/JAD-191300 https://content.iospress.com/download/journal-of-alzheimers-disease/jad191300?id=journal-of-alzheimers-disease%2Fjad191300

Owens AP, Hinds C, Manyakov NV, Stavropoulos TG, Lavelle G,Gove D, Diaz-Ponce Aand Aarsland D (2020). Selecting Remote Measurement Technologies to Optimize Assessment of Function in Early Alzheimer's Disease: A Case Study.Frontiers in Psychiatry, 11, 582207 eCollection 2020. DOI: 10.3389/fpsyt.2020.582207. https://www.frontiersin.org/articles/10.3389/fpsyt.2020.582207/full

Roberts C, Rochford-Brennan H, Goodrick J,Gove D, Diaz-Ponce A and Georges J(2020). Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia.Dementia, 19(1): 10-17. DOI: 10.1177/1471301219876402. https://doi.org/10.1177/1471301219876402

Sannemann L (…/…)Georges J(…/…) Jessen F (2020). General practitioners’ opinion on early and pre‐dementia diagnosis of AD: A MOPEAD project survey in five European countries: Neuropsychiatry and behavioral neurology/Mild cognitive impairment/Early symptomatic disease.Alzheimer’s and Dementia, 16(S6). DOI: 10.1002/alz.040357. https://doi.org/10.1002/alz.040357

Solomon A (…/…)Georges Jand Middleton L (2020). EURO‐FINGERS/UK FINGERS (Europe): World‐Wide FINGERS network: The first global network of multidomain dementia prevention trials.Alzheimer’s and Dementia, 16(S10). DOI: 10.1002/alz.046949. https://doi.org/10.1002/alz.046949

Steen Frederiksen K (…/…)Georges J(…/…) Waldemar G (2020). European Academy of Neurology/European Alzheimer’s Disease Consortium position statement on diagnostic disclosure, biomarker counseling, and management of patients with mild cognitive impairment.European Journal of Neurology, 001:1-9. DOI: 10.1111/ene.14668

Steen Frederiksen K (…/…)Georges J(…/…) Waldemar G (2020). A European Academy of Neurology guideline on medical management issues in dementia.European Journal of Neurology, 27(2 Suppl.). DOI: 10.1111/ene.14412. https://doi.org/10.1111/ene.14412

Vat LE, Finlay T, Schuitmaker-Warnaar TJ (…/…)Diaz Aet al. (2020). Evaluating the “return on patient engagement initiatives” in medicines research and development: a literature review.Health Expectations, 23(1): 5-18. DOI: 10.1111/hex.12951. https://doi.org/10.1111/hex.12951

 

 
 

Last Updated: Monday 11 October 2021

 

 
 

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