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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 ORCID:, Victor, Christina R., Pickett, James A., Hindle, John V., Jones, Roy W., Kopelman, Michael D., Matthews, Fiona E., Morris, Robin G., Rusted, Jennifer, Thom, Jeanette M. and Clare, Linda 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 & Dementia: Translational Research & Clinical Interventions 5 , pp. 685-696. 10.1016/j.trci.2019.09.012

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Featured ArticleUse and costs of services and unpaid care for people withmild-to-moderate dementia: Baseline results from theIDEAL cohort studyCatherine Hendersona,*, Martin Knappa, Sharon M. Nelisb, Catherine Quinnb, Anthony Martyrb,Yu-Tzu Wub, Ian R. Jonesc, Christina R. Victord, James A. Pickette, John V. Hindleb,d,Roy W. Jonesf, Michael D. Kopelmang, Fiona E. Matthewsh, Robin G. Morrisg,Jennifer M. Rustedi, Jeanette M. Thomj, Linda Clareb, on behalf of the IDEAL Programme TeamaCare Policy and Evaluation Centre, London School of Economics and Political Science, London, UKbREACH: The Centre for Research in Ageing and Cognitive Health, University of Exeter, Exeter, UKcWales Institute for Social and Economic Research, Data and Methods, Cardiff University, Cardiff, UKdCollege of Health and Life Sciences, Brunel University London, London, UKeAlzheimer’s Society, London, UKfThe Research Institute for the Care of Older People (RICE), Bath, UKgKing’s College London Institute of Psychiatry, Psychology and Neuroscience, London, UKhInstitute for Health and Society, Newcastle University, Newcastle upon Tyne, UKiSchool of Psychology, University of Sussex, Brighton, UKjSchool of Medical Sciences, University of New South Wales, Sydney, New South Wales, AustraliaAbstractIntroduction:We examined 3-month service use and costs of care for people with mild-to-moderatedementia in Great Britain.Methods:We analyzed Improving the experience of Dementia and Enhancing Active Life cohortstudy baseline data on paid care, out-of-pocket expenditure, and unpaid care from participantswith dementia (N51547) and their carers (N51283). 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 ac-counted for three-quarters of total costs (mean,£4008 [standard error,£130] per participant). Mostparticipants (87%) received unpaid care equating to 36 hours weekly. Estimated costs for peoplewith Parkinson’s dementia were£8609,£4359 for participants with mixed dementia, and£3484for those with Alzheimer’s disease. Total costs were lower for participants with dementia living alonethan 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 makersshould recognize the high costs of unpaid care for people with dementia, who do not always get thesupport that they need or would like to receive.

Item Type: Article
Date Type: Published Online
Status: Published
Schools: Social Sciences (Includes Criminology and Education)
Wales Institute of Social & Economic Research, Data & Methods (WISERD)
Publisher: Elsevier
ISSN: 2352-8737
Date of First Compliant Deposit: 28 October 2019
Date of Acceptance: 26 September 2019
Last Modified: 07 May 2023 00:03

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