Skip to main content

Research Repository

Advanced Search

The Use and Costs of Paid and Unpaid Care for People with Dementia: Longitudinal Findings from the IDEAL Cohort

Henderson, Catherine; Knapp, Martin; Martyr, Anthony; Gamble, Laura D.; Nelis, Sharon M.; Quinn, Catherine; Pentecost, Claire; Collins, Rachel; Wu, Yu Tzu; Jones, Ian R.; Victor, Christina R.; Pickett, James A.; Jones, Roy W.; Matthews, Fiona E.; Morris, Robin G.; Rusted, Jennifer; Thom, Jeanette M.; Clare, Linda

Authors

Catherine Henderson

Martin Knapp

Anthony Martyr

Laura D. Gamble

Sharon M. Nelis

Catherine Quinn

Claire Pentecost

Rachel Collins

Yu Tzu Wu

Ian R. Jones

Christina R. Victor

James A. Pickett

Roy W. Jones

Robin G. Morris

Jennifer Rusted

Jeanette M. Thom

Linda Clare



Abstract

Background: 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 characterize 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 1,537 community-dwelling participants with dementia at Wave 1, 1,199 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.

Citation

Henderson, C., Knapp, M., Martyr, A., Gamble, L. D., Nelis, S. M., Quinn, C., …Clare, L. (2022). The Use and Costs of Paid and Unpaid Care for People with Dementia: Longitudinal Findings from the IDEAL Cohort. Journal of Alzheimer's Disease, 86(1), 135-153. https://doi.org/10.3233/JAD-215117

Journal Article Type Article
Acceptance Date Dec 8, 2021
Online Publication Date Mar 8, 2022
Publication Date Jan 1, 2022
Deposit Date Mar 30, 2024
Publicly Available Date Apr 3, 2024
Journal Journal of Alzheimer's Disease
Print ISSN 1387-2877
Electronic ISSN 1875-8908
Publisher IOS Press
Peer Reviewed Peer Reviewed
Volume 86
Issue 1
Pages 135-153
DOI https://doi.org/10.3233/JAD-215117
Keywords Dementia; Dementia with Lewy bodies; Frontotemporal dementia; Health services; Parkinson’s disease dementia; Social services; Unpaid caregivers
Public URL https://hull-repository.worktribe.com/output/4451026
Related Public URLs https://eprints.ncl.ac.uk/279616

Files

Accepted manuscript (916 Kb)
PDF

Copyright Statement
©2022 The authors. All rights reserved. No part of this publication may be reproduced without the written permission of the copyright holder




You might also like



Downloadable Citations