In 2019, Alzheimer Europe:
- Provided a voice to people with dementia and
- organised four meetings of the European Working Group of People with Dementia (EWGPWD) which involved 13 members nominated by 13 member organisations
- 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
- involved the EWGPWD in the organisation of the Annual Conference and organised a lunch time symposium entitled “Inspired by connections”
- explored the concept of dementia-friendly communities, reviewed the recommendations developed by the 2nd European Joint Action on Dementia and developed recommendations reflecting the priorities and perspectives of people with dementia
- had representatives of the group take part in a scientific advice procedure of the European Medicines Agency
- Made dementia a European priority and
- carried out a collaborative analysis of epidemiological studies in European countries published since the end of its EuroCoDe (European Collaboration on Dementia) project
- published its 2019 Dementia in Europe Yearbook with updated prevalence rates for dementia in Europe and estimated the number of people with dementia in the EU28 in 2018 to 8,885,101 increasing to 10,283,905 in 2025 and 16,276,070 in 2050
- used the 2019 European Parliament elections to launch its European Dementia Pledge calling for dementia to be made a European priority and received the signatures of 230 candidates from 23 EU countries
- counted 161 members of the European Alzheimer’s Alliance at the end of the European Parliament mandate and reconvened the Alliance after the European Parliament elections with 98 members from 27 Member States at the end of 2019
- facilitated two meetings of the European group of governmental experts on dementia in June and December with representation from 22 national health ministries and the World Health Organization
- 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 launch of the Joint Action’s results at its Annual Conference
- welcomed the launch of the Spanish Alzheimer’s Plan and the Swiss National Platform on Dementia and the preparations towards the development of a dementia strategy in Germany and Sweden
- attended a meeting of the WHO European and Eastern Mediterranean Regions in Malta
- 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
- Promoted a rights-based approach to dementia and
- identified the involvement of people with dementia in research 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 “Overcoming ethical challenges affecting the involvement of people with dementia in research: recognising diversity and promoting inclusive research” with the results of the literature review and recommendations
- translated and published its report on intercultural care and support for people with dementia from minority ethnic groups in German and French and launched an online database of intercultural dementia care initiatives thanks to the support of the Robert Bosch Stiftung
- Supported dementia research and
- organised the 29th AE Conference in The Hague, Netherlands from 23 to 25 October under the motto “Making valuable connections” in collaboration with Alzheimer Nederland with 981 participants from 46 countries
- identified 71 guidelines from 25 European countries on the diagnosis, treatment and management of dementia and developed a report comparing
- continued with the development of its European Dementia Observatory by proactively identifying relevant policy and research developments and publishing 589 news stories via its monthly e-mail newsletter, its website and social media
- attracted 614,633 unique visitors to its website and ensured social media were a full part of the organisation’s communication activities and ended the year with 10,600 Twitter followers and 8,191 Facebook likes
- published 11 e-mail newsletters which were sent to 8,737 subscribers.
- Strengthened the European dementia movement and
- carried out a mapping exercise of its national member organisations to understand their membership. Staffing, funding, activities ad services
- 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 The Hague 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 the adoption of the European Accessibility Act and for a greater role of the European Union in the health field via the #EU4Health campaign
- further improved the relationship with INTERDEM, collaborated with the European Alzheimer’s Disease Consortium and the European Academy of Neurology and signed a memorandum of understanding with the European Ageing Network
- 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)
- 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)
- started its collaboration with the following EU projects
- Neuronet (Efficiently networking European neurodegeneration research)
- RADAR-AD (Remote assessment of disease and relapse – Alzheimer’s disease)
- supported the following EU projects
- DISTINCT (Dementia: Intersectorial strategy for training and innovation network for current technology)
- INDUCT (Interdisciplinary Network for Dementia Utilising Current Technology)
- MinD (Designing for People with Dementia)
- MIRIADE (Multi-omics interdisciplinary research integration to address dementia diagnosis)
- SPAN+ (Empowering people with dementia)
- SYDAD (Synaptic Dysfunction in Alzheimer Disease)
- developed a number of projects funded thanks to the support of its corporate sponsors and other partners
- organised European Parliament lunch debates on “Dementia as a research priority” in June and on “Improving the diagnosis of dementia – Findings from European research collaborations” 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
- started a mapping exercise of data sharing practices in European research projects thanks to the support of Gates Ventures
- expanded its Clinical Trials Watch and made available on its website dementia-friendly information on 16 phase II and 12 phase III clinical trials conducted in Europe
- produced a special supplement to its Dementia in Europe Magazine dedicated to “Clinical trials on Alzheimer’s disease in Europe”
- 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:
Download our annual report below
Document
ALZHEIMER EUROPE - Report 2019.pdf
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