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Use and costs of services and unpaid care for people with mild-to-moderate dementia: Baseline results from the IDEAL cohort study

Henderson, Catherine; Knapp, Martin; Nelis, Sharon M.; Quinn, Catherine; Martyr, Anthony; Wu, Yu Tzu; Jones, Ian R.; Victor, Christina R.; Pickett, James A.; Hindle, John V.; Jones, Roy W.; Kopelman, Michael D.; Matthews, Fiona E.; Morris, Robin G.; Rusted, Jennifer M.; Thom, Jeanette M.; Clare, Linda

Authors

Catherine Henderson

Martin Knapp

Sharon M. Nelis

Catherine Quinn

Anthony Martyr

Yu Tzu Wu

Ian R. Jones

Christina R. Victor

James A. Pickett

John V. Hindle

Roy W. Jones

Michael D. Kopelman

Robin G. Morris

Jennifer M. Rusted

Jeanette M. Thom

Linda Clare



Abstract

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.

Citation

Henderson, C., Knapp, M., Nelis, S. M., Quinn, C., Martyr, A., Wu, Y. T., …Clare, L. (2019). Use and costs of services and unpaid care for people with mild-to-moderate dementia: Baseline results from the IDEAL cohort study. Alzheimer's and Dementia: Translational Research and Clinical Interventions, 5, 685-696. https://doi.org/10.1016/j.trci.2019.09.012

Journal Article Type Article
Publication Date Jan 1, 2019
Deposit Date Dec 8, 2023
Journal Alzheimer's and Dementia: Translational Research and Clinical Interventions
Electronic ISSN 2352-8737
Publisher Wiley Open Access
Volume 5
Pages 685-696
DOI https://doi.org/10.1016/j.trci.2019.09.012
Public URL https://hull-repository.worktribe.com/output/4452328