Unpaid caregivers of older adults experience emotional, physical, and financial difficulty

1. Family and unpaid caregivers provide significant support to older adults with disability living in the community. Caregivers providing substantial assistance compared to some or no assistance experienced greater emotional, physical, and financial difficulty. They were also limited in valued activities and had lower work productivity.

2. Use of support services is low but increased amongst those providing greater levels of assistance. This survey provides insight into the care of older adults provided by unpaid workers, which is difficult to quantitate.

Evidence Rating Level: 3 (Average)   

Study Rundown: Countries around the world have an aging population, and care for older adults with medical comorbidities is a growing concern. Family members or other unpaid caregivers perform a substantial proportion of the care for these older adults. As they are outside of regulated medical systems, these caregivers are difficult to study. The described investigation used data from linked databases that surveyed older adults with disability and/or dementia in the community to better characterize the caregivers and the assistance they provide.

Nearly half of the caregivers for older adults with disabilities provided substantial assistance. Compared to those who provided some or no assistance, caregivers providing substantial help were more likely to look after an adult with dementia, and experienced greater incidence of emotional, financial, and physical difficulty. In addition, those providing greater levels of assistance were less likely to take part in valued activities (hobbies, clubs, religious activities, etc.) and had lower work productivity. Overall, the proportion of caregivers accessing additional support was low, but was greater for those providing greater levels of assistance themselves. The main strength of the survey was inclusion of a national cohort, which increases the generalizability of the findings. The major limitations of the study was the relatively small sample of older adults with self-reported diagnoses and surveyed levels of assistance to extrapolate estimations of national numbers and qualities. However, the results do emphasize the impact that unpaid and family caregivers have on the care of older adults and the burden they carry.

Click to read the study, published today in JAMA Internal Medicine

Relevant Reading: Caregiver Burden: A Clinical Review

In-Depth [survey]: This study used data from the linked 2011 surveys: National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC). A total of 1171 adults living in community settings with disability were examined along with 1739 family and unpaid caregivers. Help in healthcare activities was stratified by involvement with both healthcare coordination and medication management (substantial help, 44.1% of caregivers), either care coordination or medication management (some help, 29.8%), or neither (no help, 26.1%).

Adults with dementia were more likely to have caregivers providing substantial help (45.5%). In multivariate analysis, caregivers providing substantial help had more emotional (aOR 1.79; 95%CI 1.20-2.66), physical (aOR 2.03; 95%CI 1.39-2.97), and financial (aOR 2.21; 95%CI 1.52-3.22) difficulty. Additionally, they experienced reduction in participation of valued activity (aOR 5.32; 95%CI 3.31-8.59), and work productivity loss (aOR 3.14; 95%CI 1.40-7.02). Caregivers who provided substantial help did involve supportive services more often (26.7% vs 15.5% vs 7.6%, p < 0.001).

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