In 2023, Alzheimer Europe:
- Provided a voice to people with dementia and their carers and
- involved 15 people with dementia from 11 European countries in its European Working Group of People with Dementia (EWGPWD) and organised three in-person and eight online meetings
- co-developed guidelines on dementia-inclusive travel and meetings with the group
- dedicated the first plenary of its Annual Conference to a session entitled “Transforming personal experiences into political advocacy and public involvement in dementia research”. This was planned, organised, moderated presented by members of the EWGPWD
- participated with an EWGPWD delegation in the 5th European Parliament of Persons with Disabilities and in the European Day of Persons with Disabilities
- had the first meeting of its European Dementia Carers Working Group (EDCWG) comprised of 14 members from 13 European countries and organised two in-person and four online meetings
- co-organised a session entitled “When care homes stop caring” with EDCWG members at the Annual Conference
- involved members of both groups in publications, meetings as well as through Public Involvement activities in its European dementia and brain health research projects
- involved 15 people with dementia from 11 European countries in its European Working Group of People with Dementia (EWGPWD) and organised three in-person and eight online meetings
- Made dementia a European priority and
- adopted the Helsinki Manifesto with the political priorities of the European dementia movement to campaign for the recognition of dementia as a public health and research priority at the 2024 European Parliament elections
- monitored EU and national policy developments of interest to people with dementia and their carers
- contributed to European Commission consultations by submitting position papers and by co-developing policy statements with other European disability and health NGOs
- developed a position and issued a call for action on anti-amyloid therapies for Alzheimer’s disease (AD)
- organised a meeting of the European Group of Governmental Experts on Dementia, bringing together representatives from 16 national health ministries, as well as the European Commission, Organisation for Economic Co-operation and Development (OECD) and the World Health Organization (WHO)
- ended the year with 87 Members of the European Parliament as members of the European Alzheimer’s Alliance
- dedicated its 2023 Yearbook to legal capacity and supported decision-making and carried out a survey in which 27 members participated and which resulted in a detailed report of national legislation on legal capacity, civil and criminal responsibility, consent to treatment and research and proxy decision-making systems,
- participated as an active member in the meetings of the Patients’ and Consumers’ Working Party of the European Medicines Agency
- contributed to WHO activities on dementia, long-term care and mental health
- adopted the Helsinki Manifesto with the political priorities of the European dementia movement to campaign for the recognition of dementia as a public health and research priority at the 2024 European Parliament elections
- Changed perceptions and combatted stigma and
- wrote a report on how national Alzheimer’s associations can contribute to the review of national disability policies by the United Nations Committee on the Rights of Persons with Disabilities to ensure that dementia is duly recognised as a disability
- launched the call for its second Anti-stigma award for initiatives and projects set up for people from minority ethnic groups, the LGBTQ+ community, people with intellectual disabilities and people from socio-economically disadvantaged groups
- presented the awards at a networking dinner during the Annual Conference in Helsinki and awarded Touchstone’s BME (Black and Minority Ethnic) Dementia service with the first prize, the Brighton and Hove LGBT Switchboard’s initiative “Rainbow Neighbours” with second prize and the Windesheim University of Applied Sciences campaign “Assess your assumptions” with third prize
- had its guide on ethical and inclusive communication translated into French and Italian, its practical guide on sex, gender and sexuality translated into Italian, and collaborated with NHS England to adapt its guide on intercultural care for use within the National Health Service
- wrote a report on how national Alzheimer’s associations can contribute to the review of national disability policies by the United Nations Committee on the Rights of Persons with Disabilities to ensure that dementia is duly recognised as a disability
- Raised awareness of brain health and prevention and
- included information on five phase II trials, four 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
- developed a position on how to disclose the risk for cognitive impairment to cognitively healthy people and the risk of developing AD dementia to people with mild cognitive impairment
- contributed to scientific publications on brain health, including guidelines on physical activity and exercise and recommendations on dementia prevention in memory clinics
- included information on five phase II trials, four phase III trials and one non-drug trial on prevention conducted in Europe, in its Clinical Trials Watch
- Strengthened the European dementia movement and
- organised three in-person and six online Alzheimer’s Association Academy meetings with the participation of members from 30 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
- organised its Annual General Meeting in Helsinki on 16 October with 33 of its 37 full member organisations present or represented
- continued its collaboration with the INTERDEM network of European researchers involved in psychosocial research and the European Academy of Neurology
- signed a memorandum of understanding with the International Psychogeriatric Association and endorsed the association’s Older Adults Mental Health Awareness Week
- collaborated with the European Patients’ Forum and the European Disability Forum, as a full member association of both
- organised three in-person and six online Alzheimer’s Association Academy meetings with the participation of members from 30 European countries
- Supported dementia research and
- involved the EWGPWD and the EDCWG in the Public Involvement activities of European research projects
- organised the first of its kind Public Involvement meeting in Luxembourg from 14 to 16 November, bringing advisory boards from six European projects together
- launched its new online Public Involvement Pool
- contributed to a research paper developing recommendations on actively involving people with dementia in systematic reviews
- contributed to the communication and dissemination of research results via its established communication tools: newsletter, website and social media
- involved the EWGPWD and the EDCWG in the Public Involvement activities of European research projects
- covered 488 news stories in its 11 monthly e-mail newsletters which were sent to between 7,200 and 7,500 subscribers
- saw a 16% increase in unique website visitors to 58,107
- organised its 33rd Annual Conference “New opportunities in dementia care, research and policy” in Helsinki from 16 to 18 October with 1,130 participants from 48 countries of which 997 participated in-person and 133 online
- organised its 33rd Annual Conference “New opportunities in dementia care, research and policy” in Helsinki from 16 to 18 October with 1,130 participants from 48 countries of which 997 participated in-person and 133 online
- 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)
- EU-FINGERS (Multi-modal precision prevention toolbox for dementia in Alzheimer’s disease)
- 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)
- Pattern-Cog (Personalized aging pattern for early risk detection and prevention of cognitive impairment and dementia in cognitively healthy individuals)
- PRODEMOS (Prevention of Dementia using Mobile phone Applications)
- RADAR-AD (Development and validation of technology enabled, quantitative and sensitive measures of functional decline in people with early stage 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 (Personalized Recommendations for Neurodegenerative Disease)
- ADIS (Early Diagnosis of Alzheimer's Disease by Immune Profiling of Cytotoxic Lymphocytes and Recording of Sleep Disturbances)
- Started its collaboration with
- Multi-MeMo (Shorter- and longer-term mechanisms of multimodal interventions to prevent dementia)
- PREDICTOM (Prediction of Alzheimer’s disease using an AI driven screening platform)
- PROMINENT (Precision medicine platform in neurodegenerative disease)
- Multi-MeMo (Shorter- and longer-term mechanisms of multimodal interventions to prevent dementia)
- 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: Intersectoral 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)
- ReCAGE (Respectful Caring for AGitated Elderly)
- ABOARD (A personalised medicine approach for Alzheimer’s disease)
- carried out a number of activities thanks to the support of its corporate sponsors and other partners
- updated the findings of its European Dementia Monitor and compared and benchmarked the dementia responses of 37 European countries in 10 different categories
- organised three European Parliament lunch debates on behavioural and psychological symptoms in dementia, modifiable risk factors and inequalities in access to care and treatment in Europe
- published three editions of the Dementia in Europe magazine with interviews and contributions of EU and national policy makers
- included 20 phase II trials, 17 phase III trials and seven non-drug trials in the Clinical Trials Watch section of the association’s website
- received funding from Gates Ventures for a project monitoring the data sharing policies of European research projects and exploring the attitudes of the general public towards and the experiences of research participants in dementia and brain health research
- updated the findings of its European Dementia Monitor and compared and benchmarked the dementia responses of 37 European countries in 10 different categories
- 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