Who's caring for family caregivers? 1 in 5 says health is poor


Caring for a loved one at home can be rewarding, but it can also be overwhelming and take a toll on your own health, a new study suggests.

According to a new report from the US Centers for Disease Control and Prevention, nearly one in five of the nearly 18 million Americans who provide informal, unpaid care may be in fair or poor health.

"As the population of America ages and the number of older adults with diseases such as Alzheimer's continue to grow, there concomitantly has been a growth in the number of non-paid, informal caregivers," said Dr Teresa Murray Amato, director of geriatric emergency medicine at Long Island Jewish Forest Hills in New York City.

"Many of these caregivers are family members, which can be very helpful for allowing older adults to remain at home," said Amato, who was not part of the study.

Support for caregivers

Over the three years of the study (2015 to 2017), using data from 44 states, the District of Columbia and Puerto Rico, researchers led by the CDC's Valerie Edwards found that 21% of more than 252 000 respondents were caregivers. Nearly 20% of them rated their health fair or poor.

The findings were published in the CDC's Morbidity and Mortality Weekly Report.

"Although the report did not identify the drivers of this finding, it is not hard to understand that trying to balance work, family responsibilities and caring for an older adult could at the very least cause increased stress and also lead to lack of personal time to attend to one's health issues," Amato said.

Katherine Ornstein, an associate professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City, also reviewed the findings, and said the health care system needs to start thinking about how to support these caregivers.

Specifically, they need to consider what resources and training are needed to do the things they have to do, she said.

"It's really making sure we think of family as part of the care team and make sure that they have the resources and training they need to know what to do," Ornstein said. "That includes taking time off."

Caring can be lonely

Caregiving is not necessarily a terrible thing, she said, "But it's a bad thing when it's stressful."

Also, caring for a sick and dying person can be lonely and leave caregivers feeling isolated, Ornstein pointed out.

"A lot of times, especially in the end-of-life situation, which is arguably one of the most difficult, people are working alone, meaning there's no one else helping to do anything, and often people don't want to ask for help. It's a tough thing," she said.

Ornstein said that help is available for these family caregivers and they should reach out to hospitals and community services. But help needs to be tailored to both the patient's and caregiver's needs and desires.

Dr Steven Radwany, a professor in the Division of Palliative Medicine at Ohio State University Wexner Medical Center in Columbus, also reviewed the report. He said that as baby boomers age, the problem of home caregiving is only going to increase, because most of these people will want to stay in their own home rather than go to nursing homes or other outside care.

Radwany noted that states that haven't adopted expanded Medicaid under the Affordable Care Act are the states where caregivers are most likely to report being in poor health.

Burden getting greater

"Now, this may be a correlation and not a cause and may reflect states that have a better infrastructure for support," he said.

Expanded Medicaid, however, does include more options for home care. For those eligible for both Medicaid and Medicare, a lot of support is available for home care of the sickest patients, Radwany said.

He also believes that children of baby boomers are more likely to have to work, making caregiving even more stressful.

"The burden is only going to get greater, and we have to anticipate this as a country," Radwany said. "And we have to have the political will to step up and address this. I do think more people in this age group should be looking at purchasing long term-care insurance."

Image credit: iStock

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