A new study shows just how hard it is to be a caregiver for an older adult. Researchers discovered that family and unpaid caregivers who provide substantial help with health care often suffer significant hardship.
Investigators determined caregivers were more likely to miss out on valued activities, have a loss of work productivity, and experience emotional, physical and financial difficulties.
The study appears online in JAMA Internal Medicine.
Experts explain that almost eight million older adults with significant disabilities live in the community with help from family and unpaid caregivers. Caregivers not only provide most assistance with everyday activities but they help with a range of health care activities, including physician visits.
Jennifer L. Wolff, Ph.D., of the Johns Hopkins Bloomberg School of Public Health in Baltimore, and coauthors used data from two nationally representative samples that provided insight into older adults and the caregivers who help them.
The study included 1,739 family and unpaid caregivers of 1,171 older adults. The caregivers provided substantial, some or no help with health care, which was defined as coordinating care and managing medications.
The study sample represented 14.7 million caregivers assisting 7.7 million older adults, of which 6.5 million caregivers (44.1 percent) provided substantial help, 4.4 million (29.8 percent) provided some help and 3.8 million (26.1 percent) provided no help with health care.
Among older adults receiving substantial help with health care activities, 45.5 percent had dementia and 34.3 percent had severe disability, according to the study.
Caregivers who provided substantial help with health care were more likely to:
- live with older adults;
- experience emotional, physical, and financial difficulty;
- participate less in valued activities, such as visiting friends and family, going out for fun, attending religious services, and participating in club or group activities;
- report loss of work productivity;
- utilize supportive services, although only about one-quarter utilized such services.
Due to the nature of the study, the authors cannot draw cause-and-effect conclusions. Furthermore, the topic is difficult to study because unpaid family and friend involvement far exceed those of paid caregivers and their involvement persists across both time and settings of care.
Researchers believe improved organizational strategies and health care practices must be developed to identify and more purposefully engage and support family caregivers. This practice is critical as health system stakeholders seek to provide high-value care.
Commentary: Putting the Spotlight on Invisible Family Caregivers
“The study by Wolff and colleagues confirms and extends the existing knowledge about family caregivers who provide the most demanding levels of care for older adults at high risk of poor outcomes. Shining the spotlight on invisible family caregivers is just the first step, but it may be the most important,” writes Carol Levine, M.A., of the United Hospital Fund of New York, in a related commentary.