Family Caregivers' Experiences With Health Care Workers in the Care of Older Adults With Activity Limitations

Importance Family and unpaid caregivers often play an active role in managing the care of older adults with activity limitations. Objective To examine caregivers' experiences with older adults' health care workers. Design, Setting, and Participants This survey study constitutes a secondary analysis of a sample of 1916 family and unpaid caregivers to 1203 community-living older adults with activity limitations who participated in the 2017 National Health and Aging Trends Study. Data analysis was performed January to August 2019. Exposures Caregiver sociodemographic characteristics, caregiving intensity, and frequency speaking with or emailing older adults' health care workers. Main Outcomes and Measures Caregiver-reported experiences when interacting with older adults' health care workers in the prior year, including being listened to, being asked about understanding of treatments, and being asked about help needed in managing older adults' care. Results Caregivers (mean [SE] age, 59.4 [0.5] years; 63.7% women) assisting community-living older adults with activity limitations reported that they never (56.3%), sometimes or rarely (33.0%), or often (10.7%) spoke with or emailed older adults' health care workers in the prior year. Most caregivers who interacted with older adults' health care workers reported being always (70.6%) or usually (18.2%) listened to and always (54.4%) or usually (17.7%) being asked about their understanding of older adults' treatments. Fewer caregivers reported being always (21.3%) or usually (6.9%) asked whether they needed help managing older adults' care, and nearly one-half (45.0%) were never asked. Caregivers who interacted with older adults' health care workers often (vs sometimes or rarely) were more likely to report being always or usually listened to (94.8% vs 86.9%; P = .004), being asked about understanding treatments (80.1% vs 69.5%; P = .02), and being asked about needing help (40.8% vs 24.1%; P < .001). No other exposures were consistently associated with caregiver experiences. Measures of caregiving intensity, including caring for an older adult with dementia, were not associated with being listened to or asked about understanding, but were associated with being asked about needed help. Although caregivers of persons with dementia were more likely than caregivers of persons without dementia to report always being asked about needed help (26.9% vs 19.0%), a high percentage in both groups were never asked (41.2% vs 46.5%) (P = .007). Conclusions and Relevance These findings reinforce the need for strategies to better support family and unpaid caregivers, who are the main source of assistance to older adults with physical and/or cognitive limitations. Question What are family and unpaid caregivers' experiences with health care workers in the care of older adults with activity limitations? Findings In this national survey study, most caregivers reported that older adults' health care workers always (70.6%) or usually (18.2%) listened to them and always (54.4%) or usually (17.7%) asked about their understanding of the older adult's treatments, but fewer caregivers reported being always (21.3%) or usually (6.9%) asked whether they need help managing older adults' care. Meaning These findings reinforce the need for health system strategies to support family and unpaid caregivers, who are the main source of assistance to older adults with physical and/or cognitive limitations. This survey study examines the experiences of family and unpaid caregivers for older adults when interacting with their health care workers, including being listened to, being asked about understanding of treatments, and being asked about needing help in managing care.