“Invisible work” toll among family and unpaid caregivers

Family and other unpaid caregivers play a key role in the health care system but face unmet needs and challenges of their own. KatarzynaBialasiewicz/iStock/Thinkstock

Family and other unpaid caregivers perform many activities on a regular basis as they help an older adult. These include making appointments, ordering and keeping track of medicines, assisting with personal care, shopping, doing housework, and providing transportation. Such caregivers play a crucial role in helping manage disabled adults, but are often invisible in the health care system.

A team led by Dr. Jennifer L. Wolff at the Johns Hopkins Bloomberg School of Public Health set out to examine the nature and intensity of involvement that caregivers provide, and to assess how it relates to their health and function.

The researchers analyzed data from more than 1,700 family and unpaid caregivers of almost 1,200 older adults with disabilities. The data were obtained from two 2011 national surveys of older people and the caregivers who assisted those with disabilities. The research was funded in part by NIH’s National Institute on Aging (NIA) and National Institute of Mental Health (NIMH). Results appeared online on February 15, 2016, in JAMA Internal Medicine.

Based on the findings of this representative sampling, the researchers estimated that 14.7 million caregivers assisted 7.7 million older adults in 2011. Of these, 6.5 million (44%) provided substantial help, 4.4 million provided some help, and 3.8 million provided no help coordinating health care or managing medications. Almost half of the caregivers who provided substantial help assisted an older adult with dementia. 

Those who provided substantial health care assistance, compared to those who provided none, were more likely to report caregiving-related emotional difficulty (34% vs. 15%), physical difficulty (22% vs. 6%), and financial difficulty (23% vs. 7%). Compared with caregivers providing no help, those providing substantial help were more than 5 times as likely to report that their care duties interfered with valued activities, such as visiting friends and attending religious services.

Caregivers who provided substantial health care assistance were also more than 3 times as likely to lose work productivity. This was due to both hours of work missed because of caregiving and decreased work due to distraction and/or fatigue. 

The researchers found that the use of supportive services, such as respite care and support groups, was low. It was greater among caregivers providing substantial help, compared to some or no help (27%, 16%, and 8%, respectively).

“A lot of work goes into managing the care of people with complex health needs, and this work is borne not only by health care providers and patients, but also by their families,” Wolff says. “The more we know about this invisible workforce, the better we will be able to develop strategies that include unpaid caregivers as part of patients’ health care team.”

—by Carol Torgan, Ph.D.