Family caregivers are largely disconnected from the health care system for older adults

Family caregivers usually are not asked by health care workers about needing support in managing older adults' care, according to a study led by researchers at the Johns Hopkins Bloomberg School of Public Health.

Most of the surveyed caregivers who interacted with health care workers reported that the latter always or usually listen to them (88.8 percent) and ask about their understanding of older adults' treatments (72.1 percent). A much smaller proportion (28.2 percent) reported that health care workers always or usually asked them whether they needed help in their care of the older adult.

The figure was significantly higher, 37.3 percent, for the subset of caregivers caring for older adults with dementia.

The study, to be published January 24 in JAMA Network Open, was an analysis of survey data on 1,916 caregivers, mostly spouses or other family members, who provide care to older adults with activity limitations living in community settings such as private homes, apartment buildings, or senior housing.

These results suggest that we as a society could do a better job of supporting family caregivers, who are providing the lion's share of day-to-day care to older adults with activity limitations."

Jennifer Wolff, PhD, Eugene and Mildred Lipitz Professor in the Department of Health Policy and Management at the Bloomberg School

Wolff is also director of the Roger C. Lipitz Center for Integrated Health Care at the Bloomberg School.

Nearly 20 million Americans are unpaid, usually in-family caregivers for adults over 64, according to the National Academy of Sciences, Engineering, and Medicine. The care they provide often includes help with taking medication, bringing the older adult patient to a health care facility, and assisting with other health care activities. Given these important functions, the interactions between these caregivers and health care workers can impact the quality of care for the older adult patient.

"It's a potential point of intervention for improving care," Wolff says.

To get a better picture of this caregiver/health care-worker interface, Wolff and her colleagues analyzed 2017 survey data from the National Health and Aging Trends Study (NHATS) and the related National Study of Caregiving (NSOC), including 1,916 caregivers who were assisting 1,203 community-living, activity-limited older adults. The average caregiver age was 59. About 900 of these caregivers reported having interacted with health care workers of the older adult in the prior year, and also provided responses to key questions about those interactions.

The study results, Wolff says, highlight the fact that caregivers are still largely disconnected from the health care system for older adults, which in turn suggests that there is the potential to improve the quality of care.

That could mean identifying caregivers who could use care-related education and training or who simply need a break, for example, through temporary 'respite care' of the older adult patient."

Jennifer Wolff, lead author of the study

Co-author Vicki Freedman, PhD, with the University of Michigan's Institute for Social Research, co-leads the NHATS and NSOC with Wolff and co-author Judith Kasper, PhD, professor in the Bloomberg School's department of Health Policy and Management.

Wolff and her colleagues are continuing to study the relationship between caregivers and the health care system, as well as interventions that could improve it and thereby improve care for older adults.

"We're developing strategies to more effectively engage family caregivers in care delivery," Wolff says.