From 25 to 27 March, members of the European Working Group of People with Dementia (EWGPWD) and their supporters gathered in Senningerberg (Luxembourg) for three days of in-person meetings. The Public Involvement team was represented by Dianne Gove, Ana Diaz, Soraya Moradi-Bachiller, Sarah Campill and Sébastien Libert during the meeting. Dianne, Ana and Sébastien facilitated the discussions. On the first day, the Chairperson of the EWGPWD, Kevin Quaid, opened the meetings with a few welcoming words to the group members and their supporters. He then gave the floor to Chris Roberts and Jayne Goodrick who paid tribute to the late Nigel Hullah. Nigel, who was an active and cherished member of the EWGPWD, as well as a dear friend, left a big hole behind with his sudden and untimely passing.
The meeting resumed with Dianne and Ana sharing updates regarding administrative matters and addressing the upcoming nominations. They then proceeded to discuss Alzheimer Europe’s Annual Conference in Bologna in October. Members discussed the key messages they wanted to include during the plenary session, addressing the policy makers, researchers and other key stakeholders in the room. In the second half of the meeting, Policy Officer Owen Miller joined the group to explore the topics for Alzheimer Europe’s 2025 Yearbook on culture, leisure and transport. The feedback Owen received was insightful and will help guide the content of the publication. On the second day, the group was joined by Anna-Katherine (Katy) Brem (PREDICTOM) and Ruth Stephen (AD-RIDDLE) for a discussion about the terminology surrounding Alzheimer's disease (AD).
The discussions were fruitful, highlighting challenges to address around the terminology used as well as the risks connected to labelling a person as having Alzheimer’s disease as opposed to merely being at risk of developing AD dementia. After the break, the group provided feedback on the content and structure of a palliative care information sheet for healthcare professionals previously developed with the help of the EWGPWD and the European Dementia Carers Working Group (EDCWG), for the AI4Hope project. The last consultation session of the day was dedicated to the topic of technology used by/for people with dementia which is the topic of this year’s work for the EWGPWD and the EDCWG.
The meetings concluded with a consultation on the eBRAIN-Health project, a Horizon Europe-funded research project launched in July 2022. Three researchers working for Eodyne, a company that is part of the eBRAIN-Health project and is based in Spain, joined the meeting: Aarushi Sharma, Gözde Tüter and Héctor López Carral. Members and supporters of the EWGPWD, as well as three members of the eBRAIN-Health Public and Patient Advisory Group, shared their experiences, views and opinions on a rehabilitation gaming app and AI chatbot providing information about dementia. They also discussed their opinions on the potential use cases from their perspective as people with lived experience of dementia. The session was interactive and dynamic, with participants offering valuable feedback for further development of the work. Alzheimer Europe would like to thank all members for joining the EWGWPD meetings in Senningerberg and for actively participating over three highly productive and enlightening days.
