On 30 October, the ENSURED (Empowering Needs-based Social Health and inclUsive care for RarEr Dementias in moderate to
advanced stages) consortium assembled for a second in-person meeting following the Alzheimer Europe Conference in Dublin, Ireland. During the meeting, work package leads gave an update on progress, and final agreements on data harmonization and management were discussed.
The meeting opened with a warm welcome from Marjolein de Vugt (Maastricht University) who introduced new members and congratulated the consortium on an encouraging and productive start. Faye Forsyth (Alzheimer Europe) then presented an update on work package 1 (public Involvement), outlining developments of a bespoke public involvement framework for rarer dementias at moderate to advanced stage, and implications from consultations held thus far. Sara Bartels and Gorgi Bekkers (Maastricht University) described the outline and initial progress in work package 2 (monitoring symptoms and experiences in Fronto-temporal dementia); and Martina Roes (Deutsches Zentrum für Neurodegenerative Erkrankungen) and Seda Guney (Koç University) provided an update on scoping and policy reviews that will illuminate social health opportunities and challenges in rarer dementias (work package 3). Doroto Szcześniak (Wroclaw Medical University) followed up with an overview of turning points and key adaptations identified in rarer dementias that can lead to delays, stress, and fragmented support (work package 4). Lastly Louise Hopper, Qiuxia Lie and Jessica Tasquier (Dublin City University) described steps taken to translate and adapt content from the INTENSE self-experience simulation toolkit (https://www.intenseprojectdementia.eu/) to rarer dementia and different cultural contexts (work package 5). Bringing the meeting to a close, Marjolein de Vugt and Sara Bartels (Maastricht University) outlined the external advisory board who will provide expert advice and input, and a reminder of timelines for deliverables and dissemination pathways (work package 6).
The consortium plans to meet again in December (online) to maintain the momentum and build on milestones already realised.
This project is supported by the Luxembourg National Research Fund (INTER/JPND25/19533865/ENSURED), under the aegis of the EU Joint Programme - Neurodegenerative Disease Research (JPND) - www.jpnd.eu
