Variability in perceived burden and health trajectories among older caregivers: a population-based study in Sweden

Abstract

BackgroundThe negative effects of informal caregiving are determined by the characteristics of the caregiver-care receiver dyad and the context of care. In this study, we aimed to identify which subgroups of older informal caregivers (1) experience the greatest subjective burden and (2) incur a faster decline in objective health status.MethodsFrom a total of 3363 older participants in the Swedish National study on Aging and Care in Kungsholmen (SNAC-K), we identified 629 informal caregivers (19.2%, mean age 69.9 years). Limitations to life and perceived burden were self-reported, and objective health status was quantified using the comprehensive clinical and functional Health Assessment Tool (HAT) score (range: 0–10). Ordered logistic regressions and linear mixed models were used to estimate the associations between caregiving-related exposures and subjective outcomes (cross-sectionally) and objective health trajectories (over 12 years), respectively.ResultsHaving a dual role (providing and receiving care simultaneously), caring for a spouse, living in the same household as the care receiver and spending more hours on caregiving were associated with more limitations and burden. In addition, having a dual role (β=−0.12, 95% CI −0.23 to −0.02) and caring for a spouse (β=−0.08, 95% CI −0.14 to −0.02) were associated with a faster HAT score decline. Being female and having a poor social network were associated with an exacerbation of the health decline.ConclusionsBoth the heterogeneity among caregivers and the related contextual factors should be accounted for by policymakers as well as in future research investigating the health impact of informal caregiving.

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“…The fact that caregivers took the time to complete the ZBI during this phone call, and provided generally short responses about improvements to care transitions might be a reflection of these caregivers truly not feeling or knowing what can be improved (48.7% of caregivers said they had nothing to report or nothing they feel could be improved in response to Question B) and not a result of insufficient sampling. We were also not able to distinguish between incident (sudden) and long-term caregivers [49] or describe caregivers' own health status or comorbidities [50]. Both factors likely impact both caregiver burden and the quality of care transitions.…”

Gender Disparities in Care Allocation among Informal Elderly Caregivers: A literature Review

“…They discovered that people juggling dual roles (providing and receiving care simultaneously), caring for a spouse, living in the same home as the person they care for, and dedicating more time to caregiving tended to experience more limitations and burden. Being a woman and having a limited social network were linked to worse health outcomes [24].…”