2018 Highlights

2018

In 2018, Alzheimer Europe:

  • Provided a voice to people with dementia and
    • carried out a mapping exercise of national working groups of people with dementia and provided a report with the results and identified good practices
    • organised four meetings of the European Working Group of People with Dementia (EWGPWD) with one meeting coinciding with AE’s Annual Conference and one with a lunch debate in the European Parliament
    • involved the Chairperson of the European Working Group of People with Dementia as a full voting member at AE Board meetings
    • ensured people with dementia and carers were represented in all AE projects and working groups and involved the group in various EU projects where AE is asked to provide the views of people with dementia
    • renewed the membership of the EWGPWD in 2018 with 13 members being nominated by 13 different member organisations for the 2018–2020 mandate of the group
    • involved the EWGPWD in the organisation of the Annual Conference
    • had representatives of the group take part in a scientific advice procedure of the European Medicines Agency
  • Made dementia a European priority and
    • actively contributed to the work on diagnosis and post-diagnostic support, care coordination, residential care and dementia-friendly communities of the 2nd European Joint Action on Dementia and supported the action’s dissemination at its Annual Conference
    • welcomed the launch of the Portuguese dementia strategy and the preparations towards the development of such a strategy in Germany and Sweden
    • continued its work with the European Alzheimer’s Alliance with 126 Members of the European Parliament from 27 EU countries and involved these members in the organisation of three lunch debates in the European Parliament
    • organised two face-to-face meetings with governmental affairs representatives from its national organisations for an exchange on EU and national policy developments and campaigns
    • played an active role on the Patients’ and Consumers’
      Working Party of the European Medicines
      Agency
    • reinstituted the European group of governmental experts on dementia and organised a first meeting of the group in December with representation from 17 national ministries, the European Commission, OECD and the World Health Organization
    • published its 2018 Dementia in Europe Yearbook with a comparison of 21 national dementia strategies in European countries
  • Promoted a rights-based approach to dementia and
    • identified the development of intercultural care and support for people with dementia from minority ethnic groups as the priority of the work of its European Dementia Ethics Network
    • set up a working group comprised of experts in the field and published a report with the results of the literature review and recommendations on the recognition of dementia as a disability
  • Supported dementia research and
    • expanded its Clinical Trials Watch and made dementia-friendly information on 7 phase II and 11 phase III clinical trials conducted in Europe available on its website
    • continued with the development of its European Dementia Observatory by proactively identifying relevant policy and research developments and publishing 661 news stories via its monthly e-mail newsletter, its website and social media
    • attracted 537,292 unique visitors to its website and ensured social media were a full part of the organisation’s communication activities and ended the year with 9,046 Twitter followers and 7,633 Facebook likes
    • organised the 28th AE Conference in Barcelona, Spain from 29 to 31 October under the motto “Making dementia a European priority” in collaboration with CEAFA and Fundación Alzheimer España with 816 participants from 46 countries
  • Strengthened the European dementia movement and
    • organised a number of capacity building workshops for its member organisations as part of its Alzheimer’s Association Academy
    • held quarterly meetings of the AE Board to monitor the association’s financial situation and the implementation of its work plan
    • organised its Annual Meeting in the framework of the Annual Conference in Barcelona where members adopted the organisation’s report on past activities, future work plan and budget, elected a new Board and welcomed Estonia and North Macedonia as new members
    • continued as an active member of the European Patients’ Forum and European Disability Forum and campaigned with other organisations for Access to healthcare, for the adoption of the European Accessibility Act and the Work-Life Balance Initiative and for a greater role of the European Union in the health field via the #EU4Health campaign
    • improved the collaboration with the INTERDEM network and signed a memorandum of understanding with the European Academy for Neurology
  • Participated and carried out a number of projects and
    • continued its involvement in a number of EU funded projects by representing the views of people with dementia and their carers in the research consortium, by contributing to the ethical discussions and by supporting the communication and dissemination activities towards a non-scientific audience:
      • AD-Detect-Prevent (Presymptomatic AD detection and prevention)
      • AETIONOMY (Development of an aetiology- based taxonomy of dementias)
      • AMYPAD (Amyloid imaging to prevent Alzheimer’s disease)
      • EPAD (European Prevention of Alzheimer’s Dementia)
      • MOPEAD (Models of Patient engagement for Alzheimer’s disease)
      • PACE (effectiveness of palliative care for elderly people in long term care facilities in Europe)
      • PARADIGM (Patients active in research and development for an improved generation of medicines)
      • PRODEMOS (Prevention of Dementia using Mobile phone Applications)
      • ROADMAP (Real world outcomes across the AD spectrum for better care)
    • collaborated with the following EU projects
      • INDUCT (Interdisciplinary Network for Dementia Utilising Current Technology)
      • MinD (Designing for People with Dementia)
      • SPAN+ (Empowering people with dementia)
      • SYDAD (Synaptic Dysfunction in Alzheimer’s Disease)
    • developed a number of projects funded thanks to the support of its corporate sponsors and partners
      • organised three lunch debates in the European Parliament
      • published three editions of the Dementia in Europe magazine
    • published the results of its a survey of 1,409 carers’ experiences of a diagnosis in the Czech Republic, Finland, Italy, the Netherlands and the United Kingdom (Scotland) in a report and published a scientific article in the International Journal of Geriatric Psychiatry thanks to an educational grant by Roche.