2020 Highlights

2020

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

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