The European Working Group of People with Dementia (EWGPWD) convened its first meeting online on 12 September 2024, following membership renewals at the Alzheimer Europe (AE) Annual General Meeting on 18 June 2024. Ten returning members warmly welcomed four newcomers: Minna Kinnunen (Finland), Jan Runar Eliassen (Norway), Kjell Ehn (Sweden), and Gerda Van Tongerloo (The Netherlands). The new Chairperson, Kevin Quaid (Ireland) opened the meeting with a round of introductions.
The meeting focused on two key topics. First, the group provided feedback on the further development of the lay glossary for the European Platform for Neurodegenerative Diseases project (EPND). Some of the members of the EWGPWD had contributed towards the development of this extensive glossary which contains over 200 definitions of terms mainly related to data sharing/reuse, biomedical and psycho-social research methodology and neurodegenerative diseases and symptoms. The aim of the glossary is to help lay people under-stand information they receive or access when considering participating in research or consenting to the sharing/re-use of their data. Dianne Gove (Alzheimer Europe) asked the cur-rent members of the group for their views on the best way to involve them in the finalisation of the glossary, the future management and updating of the glossary and its possible translation into other languages.
Next, the group shared their perspectives on palliative care for dementia, contributing to the AI4HOPE project. This project focuses on improving palliative care delivery for people with dementia through digital health interventions for pain management, care planning, and education. Discussions covered various topics, including end-of-life care, emotional support and carer support.
Alzheimer Europe staff members Ana Diaz, Dianne Gove and Sébastien Libert facilitated the discussion, while Sarah Campill and Soraya Bachiller documented key points. These insights will inform an information sheet outlining recommendations, challenges and opportunities in palliative care interventions for dementia stakeholders. Ana Diaz also briefed the group on their participation in the upcoming Alzheimer Europe Annual Conference in Geneva, scheduled for 8-10 October 2024. This conference presents a valuable opportunity for members of the EWGPWD to contribute further to dementia research and policy discussions.
The new Vice-Chairperson, Lieselotte Klotz (Germany), concluded the meeting with closing remarks. Overall, the first meeting marked a successful start, welcoming new members, contributing to research initiatives, and promoting active participation for the benefit of all people with dementia. The EWGPWD looks forward to continuing their mission at the AE conference in Geneva.
