Alzheimer Europe is delighted to announce the launch of its new European Dementia Carers Working Group (EDCWG), on 15 December 2022. The group is composed both of current carers, relatives and supporters of people with dementia, and of people with prior experience in a carer’s role, within the five years prior to their nomination to the group. The members of the group are nominated by the member associations of Alzheimer Europe in their countries and the group’s mandate is for two years.
In tandem with the European Working Group of People with Dementia (EWGPWD) - a group composed entirely of people living with dementia themselves and set up by Alzheimer Europe and its members in 2012 – the new carers group will work to ensure that the activities, projects and meetings of Alzheimer Europe duly reflect the priorities and views of carers and supporters of people with dementia. In particular, members of the group will advise the organisation on how to involve carers and will make recommendations for improvements, when necessary. Members of the EDCWG will be involved in the development of policy documents issued by the organisation and take an active part in consultations in the context of EU-funded research projects. The Chairperson of the group, who will be chosen by the group’s membership, will be an ex-officio member of the Board of Alzheimer Europe, with full voting rights (as is the Chairperson of the EWGPWD).
Alzheimer Europe aims for gender balance in the group (each sex represented by at least 40% of the membership) and welcomes carers with a non-binary or trans identity. Nominations of young carers are also encouraged.
1. Peter Banda, son, Slovakia ♂
2. Paola Borghesi, daughter, Italy ♀
3. Paddy Crosbie, partner, Ireland ♂
4. Sylva Dneboská, wife, Czech Republic ♀
5. Chris Ellermaa, daughter, Estonia ♀
6. Zornitsa Karagyozova, daughter, Bulgaria ♀
7. Sonata Mačiulskytė, daughter, Lithuania
8. Magnús Karl Magnússon, partner, Iceland ♂
9. Filomena Mira Martins Cunha, daughter, Portugal ♀
11. Barry Northedge, partner, Scotland, United Kingdom ♂
12. Trevor Salomon, spouse, United Kingdom ♂
13. Liv Thorsen, partner, Norway ♀
14. Roslynn Vella, daughter, Malta. ♀
1. Eileen Deehan, daughter, Scotland, United Kingdom ♀
2. Jayne Goodrick, wife, United Kingdom ♀
3. Aisling Harmon, daughter, Ireland.♀
The creation of the EDCWG was proposed in Alzheimer Europe’s Strategic Plan (2021-2025) as part of the objective of “providing a voice to people with dementia and their carers”, and was included in the organisation’s 2022 Work Plan.
Jean Georges, Executive Director of Alzheimer Europe, said: “This is truly an exciting step for Alzheimer Europe, and will help us to ensure we can continue to give a voice to carers of people with dementia, and to improve and extend how we do this, throughout all our activities. For many years, we have championed the importance of listening to and amplifying the voice of people with dementia, through the European Working Group of People with Dementia, which does fantastic and important work. The accompanying carers and supporters are also vital to this work, by supporting the attending people with dementia (and not speaking on their behalf). It became apparent, however, that the views and experiences of carers are often quite different from those of the people they are supporting and in some EU projects, separate focus groups were organised, as researchers were looking for feedback from carers, as well as from people with dementia. We decided, therefore, to set up the European Dementia Carers Working Group and I personally look forward to the same successful partnership with this new group, and to welcoming its Chairperson to the Board of Alzheimer Europe.”
More information about the EDCWG and its members can be found at: