The stress of caregiving does not appear to have as much negative effect on the health of family caregivers as previously believed, according to a study published this week in the journal The Gerontologist.
The authors of the study, a team of researchers from Johns Hopkins University, say that people who care for a family member or loved one with a serious illness have only an “extremely small” risk of inflammation and weakening of the immune system.
“We’re not saying that family caregiving can’t be stressful, but there’s a notion that it’s so stressful that it causes deteriorating health and increased mortality. This can lead to fear of caregiving and a reluctance to care for loved ones in need,” says David Roth, the study’s lead author and director of the Center on Aging and Health at Johns Hopkins, in a released statement.
“We’re challenging that narrative as being too exaggerated,” he added.
In another study, also released this week, some of the same researchers report that less than 1 in 10 family caregivers receive training for taking care of older adults with disabilities.
Such training has been shown in other studies to significantly reduce the stress of family caregivers, as well as lead to better health outcomes for the recipients of their care.
About 43.5 million Americans have provided unpaid care to a chronically ill or disabled child or adult within the past year, according to the Family Caregiver Alliance.
A review of past research
Roth and his co-authors decided to do the first study after they noticed statistical anomalies in some of the published research conducted over the past three decades on caregiving and the immune system. So they searched the scientific literature for papers linking chronic stress of family caregiving with two biomarkers: immunity and inflammation. Both are believed to predict heart disease risk, and both can be objectively measured through blood tests.
The researchers narrowed their search to the 30 “best” papers on the topic. Those papers, which spanned the years 1987 to 2016, reported on biomarker data collected from 1,848 caregivers and 3,640 non-caregivers.
One of the first things the researchers noticed was that many of the papers were quite small. Indeed, 16 had fewer than 50 caregivers, and several had as few as 11 to 14.
“A lot of these are small exploratory studies that can end up over-interpreting what they find,” said Roth.
Another problem with the papers was how they selected their non-caregiving “control” groups — the people they compared with the family caregivers. In more than a third of the studies, the people in the control groups were individuals who volunteered at facilities for the elderly, churches and other community organizations.
Such volunteers tend to be relatively healthy and active, write Roth and his co-authors, so “findings of biomarker vulnerability in caregivers using this type of research design may simply reflect greater biomarker resilience among the more socially active, healthy volunteer control groups.”
To overcome those methodological weaknesses, Roth and his co-authors conducted a meta-analysis of the combined data from all 30 studies. That analysis showed that less than 1 percent of the variability in inflammatory and immunity biomarkers between caregivers and non-caregivers could be attributed to caregiving-related stress.
“It’s not that we didn’t find anything, but it’s a whisper of an effect, not nearly as large as what people have been led to believe,” said Roth.
He and his colleagues are currently conducting a large study that is collecting biomarker information over a longer period of time from control and caregiver groups that are carefully matched.
A lack of training
They examined survey data collected from 1,861 family caregivers of 1,230 adults aged 65 and older who were insured through Medicare.
The caregivers were assisting their family member or loved one with everyday tasks, such as bathing, dressing and feeding, as well as with medical care, such as managing multiple medications (including those requiring injections), inserting urinary catheters, administering food through feeding tubes and caring for chronic wounds.
The survey found that, despite the complexity of many of those medical duties, only 7.3 percent of the family caregivers had received training in them — or in any aspect of caring for an older, disabled adult.
That’s a distressingly low number — and one with “far-reaching consequences for the structure and cost of health care,” write the authors of an invited commentary that accompanies the study.
“Holding ourselves as a society accountable for supporting family caregivers, including providing appropriate training, is an essential step toward providing comprehensive and high-quality care to older adults,” they add.
“Caregivers are an invaluable resource for our healthcare system, saving millions of dollars every year, yet funding for caregiver training programs is very limited,” said one of the authors of that commentary, Dr. Karina Berg of the University of Connecticut’s Center on Aging, in an email interview with Reuters reporter Lisa Rapaport.
“Family caregiving is often overlooked and many caregivers suffer from isolation,” Berg added. “Caregivers should know that opportunities for training do exist and that if they don’t get the training they need from a healthcare provider, they can ask for referral to a social worker, nurse navigator or home care agency.”
For more information: You’ll find the abstract of the Johns Hopkins’ meta-analysis on The Gerontologist’s website. An abstract of the JAMA Internal Medicine study — and Berg’s commentary — can both be found on that journal’s website. Full versions of all three papers are behind paywalls, however.