A Scoping Review of Spouse and Adult-child Dementia Caregiver Burden: Who Bears the Brunt of the Burden?
Hannah Barnes1, Ashish Sarangi2
1School of Medicine, University of Missouri-Columbia, 2Department of Psychiatry, University of Missouri-Columbia Health Care
Objective:
This scoping review examined differences in caregiver burden between spousal and adult-child dementia caregivers and assessed whether one group consistently experiences greater burden.
Background:
Previous findings suggest adult-child and spouse dementia caregivers respond differently to caregiving both in terms of psychological distress and response to tailored interventions. Findings are mixed regarding the relationship status to the dementia patient, and who tends to experience more caregiver burden - spouse or adult-child caregivers. Therefore, a novel scoping review was deemed appropriate to synthesize the existing knowledge and identify gaps for further tailored research.
Design/Methods:
A literature search was conducted in October 2024, using PubMed, Ovid, and Scopus medical databases. Articles written in English, published between January 1991 and June 2024, were included if they examined impacts of caregiving for an individual with any form of dementia, reported kinship distribution and/or stratified results based on relationship status, and examined caregiver burden as a separate variable. Studies were excluded if they described a condition without a formal dementia diagnosis, included caregivers not stratified by kinship, or examined a caregiver tool as a moderator.
Results:
A total of fifteen studies (out of 173) met the scoping review criteria and were divided into quantitative (N=14) and qualitative interview (N=1) studies. Of the fifteen studies, six found that adult-children caregivers experienced more caregiver burden than spousal caregivers. Four studies found that spouses experienced more burden. One study showed live-in adult-children reported the most burden, followed by spouses, and then non-live-in adult-children. Three studies found no difference. The qualitative study found profound differences by caregiver type.
Conclusions:
Caregiver burden for those taking care of a loved one with dementia is felt differently by spouse and adult-child caregivers. Results of this scoping review were mixed as to who consistently felt more total burden. Future longitudinal and cross-cultural investigations should further examine these associations.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.