Family caregiving takes a toll on ‘Utah’s Invisible Workforce’
A few years ago, the Glad family had a difficult decision to make.
Because of a massive stroke he suffered right before he was born, Matthew Glad, 25, can’t walk and is limited in his ability to communicate. His mother Mary Glad, had been serving as his round-the-clock caregiver, but another son and a daughter who had been helping her were moving away.
“I was like, ‘Well, I guess I'm going to have to put him in a home because I can't do this myself,’” she said.
The family ultimately opted to keep Matthew at home. Mary’s glad they did.
“After seeing what happened with care centers during COVID, I'm so happy I didn't put him in,” she said.
With help from extended family, Mary continues to care for Matthew. Meanwhile, Matthew’s father Neil Glad works overseas as a contractor for the U.S. State Department.
Neil credits his wife for keeping their son as healthy as he has been. He said Matthew wouldn’t fare well in a state-run facility, and would probably die in a short time.
“He would get sick and he would not feel loved because he really needs someone there to interact with him regularly,” he said. “No one gives the care to a family member like a family member.”
In Utah, 436,000 people provide care for family members and others, according to a recent report from the University of Utah’s Kem C. Gardner Policy Institute. That’s one out of every five Utah adults. By 2030, that number is expected to grow by more than 100,000, outpacing population growth.
Utah has one of the highest ratios of caregivers to people with care needs in the nation, according to the report. For every person with health difficulties, there are 1.36 caregivers.
While that ratio may seem high, it “still isn't isn't a lot when you consider that's not a full time person,” said Matt Hansen, executive director of the Homecare and Hospice Association of Utah.
“Many people are students. They're going to school and helping to care for a grandparent,” he said. “They may be spouses or grown children” or a parent “who's trying to balance all these other aspects of life.”
As for what drives that high ratio, the report says it “may reflect a preference for family caregiving (rather than paid/formal care), or a lack of available professional caregivers such as nursing and home health aides.”
Hansen said it is likely a combination of the two. Utah’s high birth rate is also likely a factor.
“In Utah, we're very supportive of family and we rally around family,” he said.
But Mary Glad said that the same culture has a detrimental aspect for caregivers like her.
In Utah, there’s a sentiment that “women should take care of their children and not get paid or compensated,” she said. “Just do it quietly and good and don't make any noise.”
The report gets to that idea in its title, “Utah’s Invisible Workforce: The Economic Contributions and Health Impacts of Family Caregiving.” It found the estimated economic value of such labor to be $5.1 billion. In other words, if “informal” care provided by family was to be administered instead by professionals, the cost of such services would total $5.1 billion.
Care provided by friends and family members incurs different non-monetary costs though.
Nearly half – 48.9% – of family caregivers reported experiencing poor mental health, compared with 41.8% of their “non-caregiving” peers. And 42.4% reported recently experiencing poor physical health, compared with 32.6% of their non-caregiving peers.
Mary has seen an adverse impact on her health. Hauling Matthew around has left her with back problems, and at one point, she required six months of physical therapy for her leg. However, the experience has actually been a boon to her mental health, she said.
“It's partly my belief system, but I really believe that he just exudes this great spirit that’s soothing,” she said. “Having him in our home just helps me cope with other stresses of life better.”
Her daughter Anna Thomas doesn’t see it that way, especially since it’s getting harder for Mary to care for Matthew.
“The exhaustion is affecting her mental health,” Thomas observed. “It's not so much him. It's wanting to care for him and not being able to.”