2022 Highlights

2022

In 2022, Alzheimer Europe:

  • Provided a voice to people with dementia and their carers.
    • Included the European Working Group of People with Dementia (EWGPWD) in all its activities, meetings, and projects, and organised three in-person and four online meetings of the group.
    • Organised new nominations of the EWGPWD resulting in a new group comprised of eight women and seven men from ten European countries for the period 2022-2024.
    • Marked the 10th anniversary of the EWGPWD by launching a report with highlights of the group’s work.
    • Co-developed a guide for the media, researchers, journalists, and policymakers on ethical and inclusive communication about dementia.
    • Involved the group in the 32nd Alzheimer Europe Conference in Bucharest and organised a special symposium entitled “Building bridges, our voices, our lives”.
    • Modified the Alzheimer Europe Statutes and Rules and Regulations to allow the setting up of the European Dementia Carers Working Group, set up the group with 14 members from 13 European countries, and organised a first informal online meeting of the group.
  • Made dementia a European priority:
    • Monitored EU policy developments and contributed to European Commission consultations on the European care strategy and EU disability card.
    • Collaborated with other European disability and health NGOs to develop joint policy statements and contributions to EU policy discussions.
    • Provided the secretariat of the European Group of Governmental Experts on Dementia and organised two online meetings of the group where health ministry officials from 19 European countries participated, as well as observers from the European Commission, the OECD, and the World Health Organization (WHO).
    • Included 89 Members of the European Parliament from 26 of the 27 Member States of the European Union and all political groups in the European Alzheimer’s Alliance and involved individual members in its European Parliament lunch debates as well as asking them for contributions to the Dementia in Europe magazine.
    • Focused on employment and social protection for its 2022 Yearbook and received responses from 21 member organisations which allowed the organisation to develop and publish a comparative report with the key findings, identify good practices from nine European countries, include 11 experiences of people with dementia and carers, and develop recommendations aimed at national and European policymakers.
    • Continued its interaction with the European Medicines Agency as an accredited patient organisation and an active member of the agency’s Patients and Consumers Working Party.
    • Had its right renewed to lodge complaints under the collective complaints procedure of the European Social Charter as an NGO with participatory status with the Council of Europe.
    • Collaborated closely with the WHO and WHO Europe, contributing to its dementia research blueprint, the position paper on brain health and joining the European Mental Health Coalition.
  • Changed perceptions and combatted stigma
    • Developed a set of guidelines for the ethical and inclusive communication about and portrayal of dementia and people with dementia together with the EWGPWD.
    • Published a guide for health and social care workers on “Sex, Gender and Sexuality in the Context of Dementia.”
    • Collaborated with the Alzheimer Europe Foundation, Biogen, Lilly, and Roche to launch the 2022 Anti-Stigma Award, reviewed 52 applications, and presented awards to the three best initiatives during the closing ceremony of the Alzheimer Europe Conference in Bucharest.
    • Collaborated with Roche on the “What Makes You, You?” initiative and involved three EWGPWD members in short videos about their life after a diagnosis of dementia, which were launched on the occasion of World Alzheimer’s Day.
  • Raised awareness of brain health and prevention
    • Expanded its Clinical Trial Watch to include five Phase II and two Phase III trials investigating medicines for the prevention of Alzheimer’s dementia.
    • Collaborated on a range of EU projects investigating ways of better identifying people at risk of developing dementia and developing prevention or brain health strategies.
    • Contributed to scientific publications on global estimates of people across the Alzheimer’s disease continuum and on communication and risk disclosure.
  • Strengthened the European dementia movement
    • Developed a web resource with information and support for people with dementia and carers/supporters affected by the war in Ukraine and collaborated with Nezabutni, the Ukrainian Alzheimer’s association, to network with Alzheimer’s associations and policymakers from neighbouring countries.
    • Organised two in-person and six online Alzheimer’s Association Academy meetings, attended by representatives of Alzheimer’s associations from 31 European countries.
    • Involved the Alzheimer Europe Board in monitoring the association’s activities and finances and organised four online meetings and one in-person meeting of the Board.
    • Organised the first in-person Annual General Meeting since the start of the COVID-19 pandemic, with 33 out of 34 full member organisations in attendance or represented.
    • Welcomed new full member organisations from Austria, Estonia, and Poland, as well as new provisional members from Armenia, Lithuania, North Macedonia, Serbia, and Ukraine.
    • Elected a new Alzheimer Europe Board with Maria do Rosário Zincke dos Reis (Portugal) taking over as Chairperson of the association from Iva Holmerová (Czech Republic).
    • Continued its close collaboration with INTERDEM and hosted the network’s Annual General Meeting on the first day of its Annual Conference in Bucharest.
    • Collaborated with the European Academy of Neurology and strengthened ties with the European Association of Service Providers for Persons with Disabilities.
    • Co-organised a webinar on patient involvement in brain health with the European Federation of Neurological Associations (EFNA) and the Global Alliance of Mental Illness Advocacy Networks – Europe (GAMIAN-Europe).
    • Partnered on the Older Adults Mental Health Week of the International Psychogeriatric Association (IPA).
    • Continued as a full and active member of both the European Patients’ Forum and European Disability Forum.
  • Supported dementia research
    • Actively contributed to a range of EU-funded projects by representing the views of people with dementia and their carers in the research consortia, contributing to the ethical discussions, and supporting the communication and dissemination activities towards a non-scientific audience.
    • Authored and contributed to scientific publications on the value of public involvement in dementia research.
    • Published its monthly e-mail newsletters, delivered to over 7,300 subscribers and covering 524 news stories, of which 116 were on scientific developments.
    • Reached an average of 4,175 monthly visitors via its website, as well as 9,783 followers on Facebook and 13,600 followers on Twitter.
    • Organised its Annual Conference “Building bridges” in Bucharest, Romania, attended by 543 participants and featuring 187 oral presentations, 38 quick oral presentations, and 63 poster presentations.
  • Carried out the following project-related activities
    • Continued its involvement in the following EU-funded projects:
      • AI-MIND (Artificial Intelligence for Dementia Prevention)
      • AMYPAD (Amyloid imaging to prevent Alzheimer’s disease)
      • EPAD (European Prevention of Alzheimer’s Dementia)
      • EPND (European Platform for Neurodegenerative Diseases)
      • EU-FINGERS (Multi-modal precision prevention toolbox for dementia in Alzheimer’s disease)
      • LETHE (A personalised prediction and intervention model for early detection and reduction of risk factors causing dementia, based on AI and distributed Machine Learning)
      • Neuronet (Efficiently networking European neurodegeneration research)
      • 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:
      • ADIS (Early diagnosis of Alzheimer’s disease by immune profiling of cytotoxic lymphocytes and recording of sleep disturbances), a three-year project funded by the Luxembourg National Research Fund in the framework of the Joint Programme for Neurodegenerative Disease Research (JPND)
      • eBRAIN-Health, a four-year project funded by Horizon Europe
      • PatternCog (Personalised ageing pattern for early risk detection and prevention of cognitive impairment and dementia in cognitively healthy individuals), a three-year project funded by the Luxembourg National Research Fund in the framework of the ERA PerMed programme
    • Supported the following EU projects:
      • ABOARD (A personalised medicine approach for Alzheimer’s disease)
      • ADAIR (From air pollution to brain pollution – novel biomarkers to unravel the link of air pollution and Alzheimer’s disease)
      • DISTINCT (Dementia: Intersectorial strategy for training and innovation network for current technology)
      • MIRIADE (Multi-omics interdisciplinary research integration to address dementia diagnosis)
      • PRIME (Prevention and Remediation of Insulin Multimorbidity in Europe)
      • SPAN+ (Empowering people with dementia)
    • Carried out a number of activities and projects thanks to the support of its corporate sponsors and other partners:
      • Organised three European Parliament lunch debates and workshops on “Prioritising dementia in European policies on care, disabilities and equalities” (online), “Neurological conditions and mental health in EU and World Health Organization programmes”, and “The role of artificial intelligence and big data in dementia research”
      • Convened four company round table meetings bringing together representatives of industry and national Alzheimer’s associations
      • Published three editions of the Dementia in Europe magazine
      • Expanded its Clinical Trials Watch and included on its website dementia-friendly information on 19 Phase II and 11 Phase III clinical trials conducted in Europe
      • Actively contributed to the FAST (Finding Alzheimer’s Solutions Together) Council set up by Roche, the patient think tank of the European Federation of Pharmaceutical Industries and Associations (EFPIA), and the GSK Health Advisory Board.