Unpaid and family caregivers play a large role in managing the health care of older adults. A recent study examined these caregivers’ experiences with health care workers.
The study utilized data from the 2017 National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC). The NHATS includes Medicare beneficiaries age 67 and better. The NSOC surveys family and unpaid caregivers to NHATS participants. This study included 2,652 caregivers to 1,697 older adults with activity limitations.
The researchers analyzed caregiver characteristics and caregiver-reported experiences. These included frequency of caregivers’ interactions with older adults’ health care workers and their perceptions of the interactions—including whether or not health care providers listened to them, asked if they understood health care treatments, and asked if they needed help managing care. Older adults’ physical and cognitive functioning and a measure of probable dementia were also included in the analysis.
The study found that caregivers who often interacted with health care providers tended to be younger, female, and have higher levels of education as compared with caregivers who interacted with health care providers sometimes, rarely, or never. They also were more likely to provide a greater intensity of care, report at least moderate caregiver strain, and were more likely to be caring for a person with dementia.
The majority of caregivers reported that health care workers always listened to them and always or usually asked about their understanding of treatments. However, a large proportion said they were never asked if they needed help managing older adult treatment. The authors noted that one limitation of this study is that it did not measure caregiver expectations or preferences for interaction, or how patient expectations and preferences are related to caregiver interactions.
Because caregivers often have significant involvement in the care of persons with less capacity to report on care, their experiences may be important in assessing care quality. Toward that end, the researchers encouraged the development of instruments that incorporate caregiver experiences.
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Wolff JL, Freedman VA, Mulcahy JF, Kasper JD. Family caregivers’ experiences with health care workers in the care of older adults with activity limitations. JAMA network open, (2020); Jan 3;3(1):e1919866-.