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

BACKGROUND: The 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. METHODS: From 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. RESULTS: Having 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. CONCLUSIONS: Both 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.