On 6 September, a team of researchers published a study in Research Involvement and Engagement. The publication examines the involvement of family carers in dementia research through a Strategic Guiding Council (SGC) created for a Family Carer Decision Support (FCDS) study. The SGC, which comprises of family carers from Canada, Ireland, the UK, the Netherlands, and the Czechia, was established to inform the design and implementation of the FCDS intervention. This intervention focuses on supporting family carers in making end-of-life care decisions for individuals with advanced dementia.
The team explored the motivation of ten family carers to participate in the SGC as advisors. For this, they conducted semi-structured interviews and did a thematic analysis of the transcripts. Key findings highlight three main themes: reciprocal learning, using lived experience to support other carers, and advocating for change in dementia care. The study concludes that family carers were motivated to join the SGC to help others navigate the healthcare system, provide psychosocial support, and advocate for better access to end-of-life care. Their participation allowed them to share their experiences, engage in advocacy, and learn from health professionals as well as fellow carers. The article is open access and can be read here:
https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-024-00623-w
