On 3 and 4 June, members of the European Dementia Carers Working Group (EDCWG) travelled to Brussels (Belgium) for two full days of in-person meetings. The meeting provided an opportunity to reflect on the group’s ongoing contributions and to mark a moment of transition within the group. The Public Involvement team was represented by Dianne Gove, Ana Diaz, Soraya Moradi-Bachiller, Sarah Campill and Sébastien Libert during the meeting. Dianne, Ana, Sarah and Sébastien facilitated the discussions. On the first day, the EDCWG members explored a range of topics including their understanding and views on technology, their views on culture, leisure and transport for people with dementia and their carers and discussed their contributions to the plenary session during the 2025 Alzheimer Europe Conference in Bologna (Italy). During the session dedicated to culture, leisure and transport, Owen Miller (Alzheimer Europe Policy Officer) joined the group to gather input for the organisation’s 2025 Yearbook. At midday, the group attended Alzheimer Europe’s lunch debate at the European Parliament, where they had the opportunity to meet with Members of the European Parliament (MEPs) and raise their demands and priorities.
The event brought together leading scientists in the dementia field, national member organisations, industry partners and policymakers. Later that afternoon, the EDCWG members bid a warm farewell to two departing members: Sonata Mačiulskytė (Lithuania), former Chairperson and Vice-Chairperson of the EDCWG, and (online) Barry Northedge (UK – Scotland). In recognition of their invaluable contributions, both were presented with commemorative trophies by the Public Involvement team. The group expressed heartfelt thanks to Sonata for her pioneering leadership as the group’s first Chairperson and to both departing members for their positive and lasting impact on the group’s work and dynamic.
On 4 June, the second day began with an update on the AI4HOPE project, where Sébastien presented the final version of the palliative care information sheet and highlighted the group’s contributions to its development. This was followed by a session on the PREDICTOM project, focusing on the development of a decision-making tool to support participants in early detection studies. Next, Angela Bradshaw (AE Director for Research) joined the group to share an update on the European Platform for Neurodegenerative Diseases (EPND) project, particularly the design of the online lay glossary and the EPND website. These discussions were followed by a presentation of the Alzheimer Clinical Trial Watch webpage by Cindy Birk (AE Project Officer), where the group was invited to provide feedback on how to help improve its accessibility and usefulness.
The final session of the day was dedicated to the Triple IHI Initiative, which brings together the PREDICTOM, AD-RIDDLE and PROMINENT projects to foster collaboration and avoid duplication of efforts in dementia research. Here the group was joined Ruth Stephen (AD-RIDDLE) for a discussion about the terminology surrounding Alzheimer's disease. All the discussions were very dynamic and fruitful, leaving the visiting researchers as well as the Alzheimer Europe staff members grateful for the valuable feedback, views and insights that were shared with them.
