Trajectories of Burden or Benefits of Caregiving Among Informal Caregivers of Older Adults: A Systematic Review

Abstract Background and Objectives Informal caregiving for older adults can be both burdensome and beneficial. Given that the informal caregiving situation may evolve over time, and care needs of older adults can result from diverse health conditions, it is valuable to understand the trajectories of burden or benefits of caregiving and how these trajectories vary across health conditions common among older care-recipients. This review is the first to summarize the literature on trajectories of burden or benefits of caregiving, including caregiver and care-recipient characteristics associated with the trajectories. Research Design and Methods We reviewed longitudinal observational quantitative studies, from 5 bibliographic databases, that assessed burden or benefits of caregiving at 3 or more time points among informal caregivers of older adults (60 years or above). Results The narrative synthesis included 41 studies, with only 7 (17%) considering trajectories of benefits. A stable average trajectory of burden or benefits of caregiving was the most common pattern over time across various care-recipient health conditions. However, an increasing burden over time was primarily observed among caregivers of persons with dementia, while a decreasing burden was noted among caregivers of persons discharged from the hospital after an acute health event. Only 6 (10%) studies, which reported heterogeneity in the progression of burden or benefits separately or jointly, identified distinctive trajectories within the same set of caregivers. Risk factors consistently identified to be associated with trajectories indicating persistently higher burden or persistently lower benefits included more care-recipient functional limitations and behavioral problems, being a non-spousal caregiver, being a solo caregiver, and perceiving less self-efficacy or competence. Discussion and Implications Future studies should focus on the trajectories of benefits of caregiving, untangle heterogeneity in trajectories of burden or benefits of caregiving, and consider both burden and benefits concurrently to identify factors that both enhance benefits and alleviate burden over time.