Healthcare use by people with dementia from diagnosis to the end of life: latent class and longitudinal analysis of linked healthcare data
BACKGROUND: The first year after diagnosis and the last year of life are critical periods for people with dementia. AIMS: To (a) identify subgroups within a large sample of people with dementia, characterised by healthcare use in the year after diagnosis and the last year of life; (b) describe the biopsychosocial characteristics associated with these subgroups; and (c) explore moves between subgroups over time. METHOD: A retrospective cohort of people diagnosed with dementia in London, UK, was assembled using linked clinical and administrative data-sets. We used latent class analysis to identify subgroups based on hospital and specialist mental healthcare service use in the year following diagnosis and the year before death. We used multinomial logistic regression to describe biopsychosocial characteristics and class membership, and latent transition analysis to explore moves between subgroups. RESULTS: Among 8623 people with dementia, we identified 3 subgroups of healthcare use in the year after diagnosis: 'low use' (49%), 'hospital use' (34%) and 'mental healthcare use' (17%). In the last year of life, four subgroups were identified: 'low use' (32%), 'moderate hospital use' (43%), 'high hospital use' (9%) and 'community healthcare use' (17%). Biopsychosocial factors, including age, ethnicity, and cognitive and physical problems, associated with subgroups differed for the time periods. Male gender, mixed dementia and vascular dementia diagnoses were associated with a higher risk of unplanned hospital use. Transition probabilities indicated unstable patterns of healthcare use after diagnosis and before death. CONCLUSIONS: Distinct subgroups and healthcare patterns in two care periods can facilitate proactive, needs-based service provision while potentially reducing emergency hospital use.
Authors
- Elizabeth Lesley Sampson (ORCID: https://orcid.org/0000-0001-8929-7362)
- Ewan Carr (ORCID: https://orcid.org/0000-0002-1146-4922)
- Katherine E Sleeman (ORCID: https://orcid.org/0000-0002-9777-4373)
- Robert J. Stewart (ORCID: https://orcid.org/0000-0002-4435-6397)
- Emel Yorganci (ORCID: https://orcid.org/0000-0003-2057-1428)
Institutions
- Queen Mary University of London (GB)
- King's College London (GB)
- East London NHS Foundation Trust (GB)
- Royal London Hospital (GB)
Publication Details
- Journal
- BJPsych Open
- Published
- 2026-10-26
- DOI
- https://doi.org/10.1192/bjo.2026.12117
- Primary Topic
- Dementia and Cognitive Impairment Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- King's College Hospital NHS Foundation Trust
- UK Research and Innovation
- National Institute for Health and Care Research
- Department of Health and Social Care
- King's College London
- NIHR Maudsley Biomedical Research Centre
- Medical Research Council
- Economic and Social Research Council
- National Institute for Health Research Applied Research Collaboration South London