Millions of family and friends who help older, disabled adults manage medications and navigate the health system may be sacrificing their own well-being, a new study suggests.
Caregivers who provided “substantial help” with health care in these settings were roughly twice as likely to experience physical, financial and emotional difficulties as those who did not provide that help, the study found. Such caregivers, if they worked for a living, were three times more likely to be less productive on the job due to caregiving-related distractions and fatigue, according to the analysis.
The researchers believe it’s the first nationally representative study of the effects of caregiving experienced by those who assist older adults with health care.
“Families are really invisible, even though they’re commonly attending medical visits or they’re involved when someone’s in the hospital, managing the transition back home,” said study author Jennifer Wolff. She is an associate professor of health policy and management at Johns Hopkins Bloomberg School of Public Health in Baltimore.
The study was published in the Feb. 15 online edition of JAMA Internal Medicine.
Caregivers see themselves as daughters, sons, spouses and friends — not necessarily as “caregivers,” Carol Levine, director of the New York City-based United Hospital Fund’s Families and Health Care Project, explained in a commentary in the same issue. They may feel uncomfortable or too overwhelmed to take advantage of support groups and services, she said.
Yet, they are the ones asking questions about treatments, giving injections and managing medications — a stressful role that can take a toll on their well-being, she said.
“By expecting family members to do all this stuff with relatively little support, we’ve created a multigenerational set of health problems, and so I think it’s extremely concerning,” Levine said.
Using data from two national surveys, Wolff and colleagues estimated that 14.7 million unpaid caregivers in the United States — mostly family members — assist 7.7 million older adults. Nearly half of the older adults have dementia, and more than a third have a severe disability, the study findings showed. And 6.5 million of those caregivers provide substantial help with health care, meaning they assist with coordinating care and managing medications. Another 4.4 million provide some help, and 3.8 million provide no help with health care, the investigators found.
Caregivers who provide substantial help are five times more likely to curb participation in things they enjoy — such as visiting friends, attending religious services or participating in clubs or group activities — than those who provide no help with health care, the study revealed.
What’s needed, Levine said, is more creative thinking about how to help caregivers unwind and de-stress. Respite care that provides caregivers a needed break from their responsibilities may be helpful, too, but tough to find in rural areas, she said.
“We need to give caregivers the freedom to say you matter as a person, and that doesn’t just mean your physical health; that means your mental well-being, your quality of life,” Levine said.
For tips to help caregivers manage stress, visit: www.caretransitions.org/care-transitions-for-patients-and-family-caregivers/.