Alzheimer Europe outlined five strategic priorities in its framework partnership (2018- 2021). For the 2021 Work Plan, the following specific objectives can be outlined for each of the five priorities:
1. Providing a voice to people with dementia
In 2021, AE will build on its successful involvement activities in the previous years thanks to its dynamic and impactful European Working Group of People with Dementia bringing together 12 people with dementia from 12 different organisations and:
• Continue to ensure that the voices of people with dementia are duly included in all operating grant activities by involving its European Working Group of People with Dementia
• Organise four meetings of the group and provide a forum for people with dementia at the organisation’s Annual Conference in Bucharest
• Carry out an analysis of public and patient involvement experiences of people with dementia in EU funded projects.
2. Making dementia a European priority, supporting the development of dementia strategies and promoting dementia-friendly initiatives
In 2021, AE will build on its close collaboration with national health ministry officials and, after focusing on national dementia strategies (2018), the prevalence of dementia in Europe (2019) and training and continuing education programmes for healthcare professionals (2020), AE will:
• Coordinate and provide the secretariat for the European Group of Governmental Experts on Dementia and organise two meetings of the group to share national experiences and good practices on topics identified by national health ministry officials
• Continue to monitor the impact of the COVID-19 pandemic on the situation of people with dementia and their carers and develop recommendations to promote and protect their needs in pandemic strategies and policies
• Collect information on existing dementia-friendly initiatives and identify how recommendations from the 2nd Joint Action on Dementia and the European Working Group of People with Dementia have been implemented
• Develop a comparative report on national dementia-friendly initiatives and publish the findings in the 2021 Dementia in Europe Yearbook.
3. Promoting a rights-based approach to gender, sex and sexuality in dementia
In 2021, after focusing on the situation of people with dementia and carers from minority ethnic groups (2018), the participation of people with dementia in research (2019) and the ethical implications of legal capacity and decision making (2020), AE will:
• Explore ethical issues related to sex, gender and sexuality and their impact on the experience of living with dementia and caring for someone with dementia and carry out a review of scientific publications and grey literature on these subjects
• Bring together a working group with experts on ethics, human rights, sex, gender and sexuality to discuss the findings of the review and develop recommendations
• Publish the recommendations with the findings of the literature review in a report.
4. Supporting dementia research and organising an Annual Conference
In 2021, AE will continue with the development of its European Dementia Observatory which provides an important platform for researchers to present the aims and outcomes of research projects via AE’s website, newsletter, social media and conferences. After focusing on developing an inventory of clinical trials (2018), treatment guidelines (2019) and EU-funded research projects (2020), as well as organising successful Annual Conferences in Barcelona (2018) with 814 participants and The Hague (2019) with 981 participants and a virtual conference in 2020 due to the COVID-19 pandemic, AE will:
• Closely follow and report on scientific and policy developments in the field of dementia in its monthly e-mail newsletter, its website and via social media
• Organise the postponed conference from 2020 in Bucharest, Romania under the motto “Building bridges” from 29 November to 1 December with at least 500 p