Carer resourcing, not clinical need, shapes advance care planning gaps in dementia

A UK cohort study (DETERMIND, 420 dyads of people with dementia and their carers, followed within 18 months of diagnosis) found that 22.1% of carers had undertaken no future care planning at all [Primary Study]. Where informal conversations or GP-led planning did take place, they occurred later, and were associated with better-resourced and more educated carers rather than with the clinical severity of the person’s dementia.

The interim Modern Service Framework for Palliative and End-of-Life Care, in force in England since June 2026, sets a 2029 target of a higher proportion of people being identified as approaching the end of life, among other commitments [Guidance]. This UK national cohort study gives one of the more direct empirical readings yet of who is, and isn’t, currently reached by advance care planning practice — a question the framework’s targets depend on answering. The DETERMIND findings are UK-based; the source material contains no international comparator for advance care planning uptake, and none is asserted here.

For services designing advance care planning pathways, this evidence suggests that outreach depending on carer-initiated conversation risks systematically under-reaching less-resourced and less-educated carers. Proactive, equity-targeted outreach — rather than reliance on carers to raise planning themselves — would address the specific inequality this study identifies.