A Literature Review on the Burden of Alzheimer’s Disease on Care Partners

Author:

Frederiksen Kristian Steen1,Lanctôt Krista L.2,Weidner Wendy3,Hahn-Pedersen Julie Hviid4,Mattke Soeren5

Affiliation:

1. Danish Dementia Research Centre, Department of Neurology, Copenhagen University Hospital - Rigshospitalet, Copenhagen, Denmark

2. Hurvitz Brain Sciences Program, Sunnybrook Research Institute, Toronto, ON, Canada

3. Alzheimer’s Disease International, London, UK

4. Novo Nordisk A/S, Søborg, Denmark

5. Center for Economic and Social Research, University of Southern California, Los Angeles, CA, US

Abstract

Background: Many individuals with Alzheimer’s disease (AD) are dependent on nonprofessional care partners. Providing informal care can result in emotional, physical, and financial burdens; however, there is a need for a better understanding of the impact of AD on care partners to support the clinical and economic assessment of potential new treatments. Objective: We conducted a literature review to evaluate the burden experienced by care partners of individuals with AD. Methods: Electronic screening and supplementary searches identified studies published from 2011 to 2022 describing the association between AD and the quality of life (QoL) and physical health of care partners, and the economic or financial burden of AD. Results: Following electronic screening, 62, 25, and 39 studies were included on care partner burden, cost, and healthcare resource use in AD, respectively. Supplementary searches identified an additional 32 studies, resulting in 149 unique studies. These studies showed that care partners of individuals with AD report moderate to severe burden. Higher burden and lower QoL were observed in those caring for individuals with more severe AD. Care partners of individuals with AD experience higher burden, lower QoL, and higher levels of stress, depression, and anxiety than those without caring responsibilities. Informal care costs increased with AD severity and accounted for the greatest proportion of overall societal cost. Conclusions: Care partners of individuals with AD experience emotional and economic burden, which increases with AD severity. These impacts should be quantified comprehensively in future studies and captured in economic evaluations of AD interventions.

Publisher

IOS Press

Subject

Psychiatry and Mental health,Geriatrics and Gerontology,Clinical Psychology,General Medicine,General Neuroscience

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