On 18 and 19 of June, the European Dementia Carers Working Group (EDCWG) met in Luxembourg. Dianne Gove (Director for Public Involvement and Ethics), Ana Diaz (Public Involvement Lead) and Public Involvement Officers Soraya Moradi-Bachiller, Sarah Campill and Daphné Lamirel also attended the meetings. The first session on the 18th centred on the REBALANCE project. This EU-funded research initiative is investigating a non-invasive treatment for Alzheimer’s disease called ‘focused ultrasound’. Two researchers from the University of Latvia, who are looking into the social and ethical issues of the REBALANCE project, joined the discussion. They conducted focused group discussions, asking members their thoughts on 'preclinical research' and how people with dementia and their carers might be involved in this type of research. Members also reflected on their concerns and hopes regarding the translation of preclinical studies to clinical research.
The second session on 18 June was about the AI4Hope project, an EU project focused on developing and testing AI-based palliative care tools for dementia. In small groups, Dianne and Daphné asked members about their understanding of the term ‘palliative care’, whether it is a useful and relevant concept for dementia and their experiences with accessing palliative care for people with dementia at different stages of the condition. Daphné then presented information about a new tool developed by the project, a ‘video recording diary system’, and Dianne gathered the group’s opinions on using such a tool for people with dementia.
The meeting on 19 June started with a farewell to Filomena, Magnus and Paola, who are ending their terms of office with the group. Dianne, Ana and Soraya thanked them warmly for their valuable contributions over the past two years. Sonata (Chair of the EDCWG), Trevor (Vice-Chair of the EDCWG) and the other members expressed gratitude for the great times shared together and wished all the best for the future. The remaining part of the EDCWG meeting was dedicated to the INTEREST project. Martina Roes and Rene Thyrian from the German Centre for Neurodegenerative Diseases (DZNE) joined the discussion and members were invited to share their experiences and perspectives about social health, inequalities, intersectionality and unmet needs in dementia care. Overall, the meetings were a valuable opportunity for members of the EDCWG to share their opinions on a variety of EU research projects that Alzheimer Europe is currently involved in. A big thank you to all members for your enthusiasm and active participation during the two days!