In 2024, Alzheimer Europe:
- Provided a voice to people with dementia and their carers and
- involved 19 people with dementia from 13 European countries in its European Working Group of People with Dementia (EWGPWD) and organised three in-person and six online meetings of the group
- involved 18 carers of people with dementia from 16 European countries in its European Dementia Carers Working Group of People with Dementia (EWGPWD) and organised three in-person and five online meetings of the group
- changed the nomination process for both groups and replaced a system of elections every two years of the full group by the annual replacement of one third of the members for a mandate of three years involved members of both groups in its European Parliament election campaign with ten people with dementia and nine carers recording video messages on their priorities for European policy makers
- co-developed the content of a conference session with both groups and dedicated the first plenary of its Annual Conference to the topic “Two voices, one story – navigating dementia together” with presentations from three carers and two people with dementia
- included testimonials and articles from people with dementia and carers in its 2024 Yearbook on independent living, its monthly e-mail newsletters and Dementia in Europe magazine
- participated with an EWGPWD delegation in the European Day of Persons with Disabilities
- collaborated with Info-Zenter Demenz, Luxembourg and the European Federation of Pharmaceutical Industries and Associations (EFPIA) on the production of patient videos
- involved members of both groups through public Involvement activities in its European dementia and brain health research projects
- Made dementia a European priority and
- campaigned during the 2024 European Parliament elections for the recognition of dementia as a priority in European research, health, disability and social policies and programmes and ended its campaign with 83 organisations endorsing its Helsinki Manifesto, 303 candidates signing its European Dementia Pledge and 7,532 individuals supporting its public call for action
- relaunched the European Alzheimer’s Alliance after the European Parliament elections with 75 Members of the European Parliament from 21 countries and finished the year with 82 members with MEPs Nina Carberry (Ireland), Tilly Metz (Luxembourg), Romana Jerković (Croatia), Sirpa Pietikäinen (Finland), Hilde Vautmans (Belgium) and Dainius Žalimas (Lithuania) acting as Co-Chairs
- monitored EU and national policy developments of interest to people with dementia and their carers and identified 42 European and 22 national policy news to include in its newsletters
- contributed to European Commission consultations by submitting position papers and by co-developing policy statements with other European disability and health NGOs
- organised one in-person and one online meeting of the European Group of Governmental Experts on Dementia, bringing together representatives from 26 national health ministries, as well as the European Commission, Organisation for Economic Co-operation and Development (OECD) and the World Health Organization (WHO)
- dedicated its 2024 Yearbook to independent living and carried out a survey in which 28 members participated and which resulted in a detailed report of national legislation independent living
- participated as an active member in the meetings of the Patients’ and Consumers’ Working Party of the European Medicines Agency
- followed the regulatory process for anti-amyloid treatments, adopted a call for action which it shared with the European Medicines Agency, regretted the initial negative opinion of the Committee for Medicinal Products for Human Use (CHMP) on lecanemab, provided its position and recommendations to address the benefit-risk balance of these medicines and welcomed the revised positive CHMP opinion
- Changed perceptions and combatted stigma and
- launched the call for its third Anti-Stigma Award for journalists successfully addressing the stigma attached to dementia and providing a positive image of dementia and people living with dementia in collaboration with the Alzheimer Europe Foundation, C2N Diagnostics, Lilly and Roche
- organised an award ceremony hosted by Nina Carberry, MEP (Ireland) during the European Parliament Dementia Day on 10 December and awarded Magnus Renggli (Switzerland) for his documentary film “Alzheimer mit 56 – Das Familienleben nach der Diagnose” with the first prize, Ofelya Kamavosyan (Armenia) for her radio show “Second Start Armenia” with the second prize and Andreas Kreimaier (Austria) for his TV show “Willkommen Alzheim” with the third prize
- had its guide on ethical and inclusive communication translated into German and its practical guide on sex, gender and sexuality translated into Czech
- Raised awareness of brain health and prevention and
- included information on three phase II trials, two phase III trials and one non-drug trial on prevention conducted in Europe, in its Clinical Trials Watch
- participated in a growing number of European research projects focused on brain health, risk reduction and prevention
- contributed to a scientific publication on brain health and dementia risk estimation with researchers from the AI-MIND project
- Strengthened the European dementia movement and
- organised three in-person and six online Alzheimer’s Association Academy meetings with the participation of members from 34 European countries
- involved the AE Board in the monitoring of the association’s activities and finances in relation to the agreed-upon Work Plan and budget and organised two online and three in-person meetings
- organised its Annual General Meeting in Luxembourg on 18 June with 32 of its 36 full members present or represented and elected a new Board for a two year mandate, adopted changes to the association’s statutes and rules and regulations, approved the 2023 Annual and Financial Reports and adopted the 2025 Work Plan and Budget
- continued its collaboration with the INTERDEM network of European researchers involved in psychosocial research, the European Alzheimer’s Disease Consortium and the European Academy of Neurology
- collaborated as a full member with the European Patients’ Forum and the European Disability Forum
- Supported dementia research and
- involved the EWGPWD and the EDCWG, as well as its online Public Involvement Pool in the Public Involvement activities of European research projects
- contributed to the communication and dissemination of research results via its established communication tools: newsletter, website and social media, covered 519 news stories in its 11 monthly e-mail newsletters which were sent to an expanding number of over 10,000 subscribers and saw an 11% increase in unique website visitors to 64,400
- organised its 34th Annual Conference “New horizons – Innovating for dementia” in Geneva, Switzerland from 8 to 10 October with 973 participants from 42 countries
- collaborated with the Alzheimer Europe Foundation which provided bursaries for people with dementia and early stage researchers to participate in the conference and which funded the meeting costs, as well as the travel and accommodation costs of the member of the EWGPWD and EDCWG attending the conference
- 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 with the following projects
- ADIS (Early Diagnosis of Alzheimer’s Disease by Immune Profiling of Cytotoxic Lymphocytes and Recording of Sleep Disturbances)
- AI-MIND (Intelligent digital tools for screening of brain connectivity and dementia risk estimation in people affected by mild cognitive impairment)
- eBRAIN-Health (Actionable Multilevel Health Data)
- EPND (European Platform for Neurodegenerative Diseases) Alzheimer Europe and EWGPWD - EDCWG stands at 34th Alzheimer Europe Conference
- LETHE (A personalized prediction and intervention model for early detection and reduction of risk factors causing dementia, based on explainable AI and distributed Machine Learning)
- Multi-MeMo (Shorter- and longer-term mechanisms of multimodal interventions to prevent dementia)
- Pattern-Cog (Personalized aging pattern for early risk detection and prevention of cognitive impairment and dementia in cognitively healthy individuals)
- PREDICTOM (Prediction of Alzheimer’s disease using an AI driven screening platform)
- PROMINENT (Precision medicine platform in neurodegenerative disease)
- RECOGNISED (Retinal and cognitive dysfunction in type 2 diabetes: unravelling the common pathways and identification of patients at risk of dementia)
- Started its collaboration with
- AD-RIDDLE (Real-world implementation, deployment and validation of early detection tools and lifestyle enhancement)
- AI4Hope (Artificial intelligence based health, optimism, purpose and endurance in palliative care for dementia)
- FluiDx-AD (A novel test trio to detect peptide biomarkers in saliva and blood for enhanced diagnosis and management of AD)
- PREDICTFTD (Accelerating the Validation of Predictive Liquid Biomarkers for Frontotemporal Dementia Diagnosis and Subclassification)
- Supported the following EU projects
- ABOARD (A personalised medicine approach for Alzheimer’s disease)
- EPAD (European Prevention of Alzheimer’s dementia
- HOMEDEM (Co-designing a home with dementia)
- INTEREST (Innovations in diversity and equity in social research in dementia)
- PANEUCARE (Multidirectional knowledge transfer of dementia research and care between European and international regions – focus on underrepresented central and eastern European regions)
- PRIME (Prevention and Remediation of Insulin Multimorbidity in Europe)
- REBALANCE (Mechanisms of focused ultrasound-mediated brain cleaning coupled with enhanced mechanosensation)
- 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 with the following projects
- Carried out a number of activities thanks to the support of its corporate sponsors and other partners
- launched its European Parliament election campaign on 19 March at a well-attended reception in the European Parliament hosted by MEPs Milan Brglez (Slovenia), Deirdre Clune (Ireland), Tilly Metz (Luxembourg) and Sirpa Pietikäinen (Finland)
- organised its first European Parliament Dementia Day during which 13 MEPs met with representatives of Alzheimer Europe and its national member organisations
- collaborated with Tilly Metz, MEP (Luxembourg) who hosted a lunch debate on dementia research as a European priority attended by over 100 participants
- published three issues of the Dementia in Europe magazine with interviews and contributions of EU and national policy makers and two special supplements with one dedicated to the 2023 Annual Conference and another one to clinical trials in Europe
- ended the year with 22 phase II trials, 11 phase III trials and five non-drug trials currently recruiting participants in European countries included in the Clinical Trials Watch section of the association’s website
- organised regular company round table meetings with its sponsors, contributed to the EFPIA think tank and co-developed a patient video featuring Chris Roberts from the EWGPWD
- continued its project funded by Gates Ventures exploring the attitudes and barriers of the general public towards participation in dementia and brain health research
- contributed to a scientific article highlighting recommendations from the collaboration between Alzheimer associations and the “Finding Alzheimer’s Solutions Together” (F.A.S.T.) Council set up by Roche.
- introduced a number of organisational changes
- welcomed Lukas Duffner as a new project officer and Sarah Campill and Sébastien Libert as new Public Involvement Officers
- created staff teams dedicated to Public Involvement and Ethics, Communications and Policy, Research, as well as an Executive and Operations Team
- relocated the head office of Alzheimer Europe to new premises at 5B, Heienhaff, L-1736 Senningerberg near the Luxembourg airport.