• The use and costs of paid and unpaid care for people with dementia longitudinal findings from the IDEAL cohort programme

      Henderson, C.; Knapp, M.; Martyr, A.; Gamble, L.D.; Nelis, S.M.; Quinn, Catherine; Pentecost, C.; Collins, R.; Wu, Y.-T.; Jones, I.R.; et al. (2022-03-08)
      The drivers of costs of care for people with dementia are not well understood and little is known on the costs of care for those with rarer dementias. Objective: To characterise use and costs of paid and unpaid care over time in a cohort of people with dementia living in Britain. To explore the relationship between cohort members’ demographic and clinical characteristics and service costs. Methods: We calculated costs of health and social services, unpaid care, and out-of-pocket expenditure for people with mild-to-moderate dementia participating in three waves of the IDEAL cohort (2014-2018). Latent growth curve modelling investigated associations between participants’ baseline sociodemographic and diagnostic characteristics and mean weekly service costs. Results: Data were available on use of paid and unpaid care by 1537 community-dwelling participants with dementia at Wave 1, 1199 at Wave 2, and 910 at Wave 3. In models of paid service costs, being female was associated with lower baseline costs and living alone was associated with higher baseline costs. Dementia subtype and caregiver status were associated with variations in baseline costs and the rate of change in costs, which was additionally influenced by age. Conclusion: Lewy body and Parkinson's disease dementias were associated with higher service costs at the outset, and Lewy body and frontotemporal dementias with more steeply increasing costs overall, than Alzheimer’s disease. Planners of dementia services should consider the needs of people with these relatively rare dementia subtypes as they may require more resources than people with more prevalent subtypes.
    • Use and costs of services and unpaid care for people with mild-to-moderate dementia: Baseline results from the IDEAL cohort study

      Henderson, C.; Knapp, M.; Nelis, S.M.; Quinn, Catherine; Martyr, A.; Wu, Y.T.; Jones, I.R.; Victor, C.R.; Pickett, J.A.; Hindle, J.V.; et al. (2019)
      Introduction We examined 3-month service use and costs of care for people with mild-to-moderate dementia in Great Britain. Methods We analyzed Improving the experience of Dementia and Enhancing Active Life cohort study baseline data on paid care, out-of-pocket expenditure, and unpaid care from participants with dementia (N = 1547) and their carers (N = 1283). In regression analyses, we estimated per-group mean costs of diagnostic and sociodemographic subgroups. Results Use of services apart from primary and outpatient hospital care was low. Unpaid care accounted for three-quarters of total costs (mean, £4008 [standard error, £130] per participant). Most participants (87%) received unpaid care equating to 36 hours weekly. Estimated costs for people with Parkinson's dementia were £8609, £4359 for participants with mixed dementia, and £3484 for those with Alzheimer's disease. Total costs were lower for participants with dementia living alone than living with others (£2484 vs. £4360); costs were lower for female than for male participants (£3607 vs. £4272). Discussion Costs varied by dementia subtype, carer status, and living arrangement. Policy makers should recognize the high costs of unpaid care for people with dementia, who do not always get the support that they need or would like to receive.