Use, cost, and cost trajectories of paid care for people with dementia: longitudinal findings from six years of the IDEAL cohort

Abstract Background This study explores how the service use and paid care costs of people with mild-to-moderate dementia in Britain change over a 7-year period, and which demographic and health characteristics were associated with variations in costs. Methods We used data collected over six timepoints from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study and applied regression analysis to estimate costs for sub-groups. Mean marginal effects were estimated to explore paid care cost trajectories following diagnosis. Results Hospital and primary care service use remained stable or declined following diagnosis for most of the sample, while care home service use increased. Paid care cost trajectories increased gradually following a diagnosis. Costs varied by dementia sub-type, carer status, depressive symptoms, comorbidities, self-rated health, loneliness, falls, and health-related quality of life. Conclusion Dementia sub-type, poor health, loneliness, comorbidities and living alone or being cared for by a non-spousal carer were associated with higher costs. Findings suggest the COVID-19 pandemic strained access to and demand for services.