The creation of the European Dementia Carers Working Group (EDCWG) was proposed in Alzheimer Europe’s Strategic Plan (2021-2025) as part of the strategic objective of “providing a voice to people with dementia and their carers” and included in the organisation’s 2022 Work Plan.
The group was launched by Alzheimer Europe and its member associations in 2022. It is composed of current carers, relatives and supporters of people with dementia or carers with prior experience of caring in the 5 years prior to their nomination by their national Alzheimer associations.
They work to ensure that the activities, projects and meetings of Alzheimer Europe duly reflect the priorities and views of people caring for a person with dementia. The Chairperson is also an ex-officio member on the Board of Alzheimer Europe with full voting rights.
Members of the EDCWG advise Alzheimer Europe in all its work and ensure the organisation adequately represents the interests of carers of people with dementia. In particular, members of the group advise the organisation on how to involve carers and make recommendations for improvements when necessary. Members of the EDCWG will be involved in the development of all policy documents issued by the organisation and take an active part in consultations in the context of Public Involvement work for research projects in which Alzheimer Europe is a research partner.
In addition, individual members of the EDCWG may be invited to take part in working groups set up by Alzheimer Europe and to give presentations at various events on behalf of the EDCWG. Finally, members of the EDCWG are free to raise any issues that they consider Alzheimer Europe should take into account.
The mandate of the members of the EDCWG is limited to two years.