Factors Associated With Advance Care Planning and Informal Family Discussions About Future Care in a UK Cohort of People With Dementia and Their Carers From the Observational DETERMIND Study.

Authors

Josie Dixon, Derek King, Ben Hicks, Sube Banerjee

Published in

Dementia (London, England). Pages 14713012261463631. Jul 07, 2026. Epub Jul 07, 2026.

Abstract

Advance care planning is a crucial element of high-quality, person-centred end-of-life care for people with dementia; however, levels have remained persistently low. Recent debates have emphasised informal conversations within families. Understanding factors associated with advance care planning and informal conversations may help target support more effectively. Data were collected in face-to-face interviews with 420 dyads of people with dementia and their carers, within 18 months of diagnosis, as part of the observational DETERMIND cohort study. Cross-sectional multivariable logistic regression analyses of observational data were used to examine factors associated with five types of future care planning. Nearly a quarter (22.1%) had undertaken no future care planning at all, not even informally with their carer. Less than half (44.9%) reported having an informal conversation with their carer, with only 16.9% saying that they had 'definitely' had such a conversation and the remaining 28% saying they had done so only 'to some degree.' Lasting powers of attorney (LPA) for health and welfare (64.7%) were common but frequently not underpinned by informal discussions. Conversations with a GP (14.1%), advance statements (9.1%) and advance decisions (10%) appeared to occur late, when people were older, had more severe dementia symptoms and lower quality of life, and carers were experiencing greater burden. People with dementia with better-resourced carers were more likely to engage in future care planning, suggesting inequalities in access. This included carer use of support and information services, associated with conversations with a GP or other professional and LPAs for health and welfare, and higher carer educational attainment, associated with having informal conversations. Lower dementia severity was also associated with informal conversations, suggesting a more active role for people with mild dementia. Our findings suggest a need for more relational approaches, including support for informal conversations, high-quality carer support, timely and consistent professional involvement and additional support for those without close carers.

PMID:
42412760
Bibliographic data and abstract were imported from PubMed on 08 Jul 2026.

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