journal articles
ESTIMATING THE PREVALENCE OF ADVANCED DEMENTIA IN SCOTLAND’S CARE HOMES: A NATIONAL SURVEY
J.K.Burton, M. Drummond, D. Henderson, T.J. Quin
Jour Nursing Home Res 2026;12:24-32
BACKGROUND: Most people who die from dementia in Scotland die in care homes. However, we do not have good national data on the population while they are alive.
OBJECTIVES: To estimate the prevalence of advanced dementia among adults living in care homes.
DESIGN: A short cross-sectional online survey of care home services was undertaken, linking to national registration data.
SETTING: All registered adult care home services in Scotland were eligible.
PARTICIPANTS: Any care home staff member could respond, most (83.0%) came from managers.
MEASUREMENTS: Responses required numerical answers (e.g. number of residents), with additional free-text data collected to explore views on advanced dementia, the acceptability of the definition and access to a diagnosis.
RESULTS: We received a response rate of 21.9% across all adult care home services (n=218), most (96.3%) were older adult services. We achieved coverage in all NHS health board areas. The number of residents living with advanced dementia ranged from 0 to 96, with an average of 17.6 people per service. The calculated average prevalence of advanced dementia was 40.6%. Extrapolating our estimate across the whole older adult care home population we estimate 14,826 people living in older peoples’ care homes in Scotland are living with advanced dementia (95% confidence interval of proportion of between 14,442 to 15,209 people).
CONCLUSIONS: The definition of advanced dementia was acceptable and usable by staff. The prevalence estimate provides a quantification of the scale of the population, enabling advocacy. The survey demonstrates inequitable access to formal dementia diagnosis in this population.
CITATION:
J.K.Burton ; M. Drummond ; D. Henderson ; T.J. Quinn (2026): Estimating the prevalence of advanced dementia in Scotland’s care homes: A national survey. The Journal of Nursing Home Research Science (JNHRS). http://dx.doi.org/10.14283/jnhrs.2026.4