Caregiver Burden and Dementia: A Systematic Review of Self-Report Instruments

Article type: Systematic Review

Authors: Tu, Jennifer Young^a | Jin, Grace^b | Chen, Jen-Hau^{c; d; *} | Chen, Yen-Ching^{e; f; g; *}

Affiliations: [a] Duke University School of Medicine, Durham, NC, USA | [b] Yale University, New Haven, CT, USA | [c] Department of Geriatrics and Gerontology, National Taiwan University Hospital, Taipei, Taiwan | [d] Department of Internal Medicine, College of Medicine, National Taiwan University, Taipei, Taiwan | [e] Institute of Epidemiology and Preventive Medicine, College of Public Health, National Taiwan University, Taipei, Taiwan | [f] Department of Public Health, National Taiwan University, Taipei, Taiwan | [g] Research Center for Genes, Environment and Human Health, College of Public Health, National Taiwan University, Taipei, Taiwan

Correspondence: [*] Correspondence to: Jen-Hau Chen, MD, PhD, Department of Geriatrics and Gerontology, National Taiwan University Hospital, No.1, Changde Street, Taipei 10048, Taiwan; Department of Internal Medicine, College of Medicine, National Taiwan University, No.1 Jen Ai Road section 1, Taipei 100233, Taiwan. Tel.: +886 2 2312 3456 /Ext. 67205; E-mail: [email protected]; Yen-Ching Chen, ScD, Institute of Epidemiology and Preventive Medicine, College of Public Health, National Taiwan University; Department of Public Health, National Taiwan University; Research Center for Genes, Environment and Human Health, College of Public Health, National Taiwan University, No. 17, Xu-Zhou Road, Taipei, 10055, Taiwan. Tel.: +886 2 3366 8019; Fax: +886 2 2351 1955; E-mail: [email protected].

Abstract: Background:As the demand for dementia care grows rapidly worldwide, heavy “caregiver burden” has been associated with stress and depression. Even so, standard metrics for interdisciplinary research of caregiver burden are limited. Objective:The objective of the present review is to recommend valid, reliable, and comprehensive self-report instruments of caregiver burden. Methods:A systematic review was performed using four databases, searched in April 2021. Articles that established or evaluated self-report instruments for dementia caregiver burden were included, while studies that involved non-dementia caregivers or did not clearly define caregiver burden were excluded. Established guidelines for reliability and agreement studies were used to assess quality and risk of bias. Assessments of self-report instruments were made based on reliability, validity, feasibility, and quality of psychometric evaluations, and comparative evaluations were presented in visual form using radar graphs. Results:Search terms yielded 1,720 articles, and 40 were included in the systematic review after excluding those of low quality. Based on the results of these studies, we recommend the Zarit Burden Interview, Screen for Caregiver Burden, Caregiver Burden Interview, and Burden Scale for Family Caregivers, due to their validity, reliability, and inclusion of multiple subjective and objective dimensions of burden. Conclusion:Targeting specific sources of caregiver burden can help prevent negative outcomes for both dementia patients and caregivers. Future studies should apply self-report instruments to measure and address caregiver burden longitudinally.

Keywords: Alzheimer’s disease, caregiver burden, caregivers, dementia, geriatric psychiatry, psychometrics

DOI: 10.3233/JAD-215082

Journal: Journal of Alzheimer's Disease, vol. 86, no. 4, pp. 1527-1543, 2022