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Caregivers in Utah face a conundrum.
They often feel like they aren’t doing enough and yet are exhausted simultaneously, said Linda Cole, deputy director of aging and family services for Mountainland Association of Governments.
That comes on top of feeling isolated because “people in their lives don’t understand what they’re going through or what it’s like,” she said.
What it’s like is often draining, according to a survey and report produced by the Kem C. Gardner Policy Institute.
The policy institute surveyed Utah adults who have offered short-term or long-term assistance to a family member or friend with a serious or chronic illness or disability during the past year.
It found that most caregivers who responded are working at least part-time jobs, and nearly 50% are working full-time.
And though the majority report no concerns with mental health, the likelihood of experiencing moderate mental health issues increases as people provide more care, as does difficulty balancing their own needs.
People providing more than full-time care also were more likely to report they often felt they didn’t have support and weren’t doing enough for their loved ones.
The survey, Cole said, may not have captured a “wide spectrum” of caregiving, from helping a parent who lives down the street with chores and groceries to providing 24-hour care for a loved one with dementia.
Barbara Cameron, who cared for her mother and mother-in-law, added it’s important to find resources as soon as possible. She came to an Alzheimer’s education conference in West Valley City earlier this month to hear about potential breakthrough research and learned about several resources she didn’t know were available.
Utahns likely will need more support and resources in the coming decades, as the state’s population ages.
Those already providing care told Gardner that some supports are more helpful than others.
More than half of the caregivers surveyed said help with household chores and maintenance would be very helpful or close to it. But fewer caregivers said services like providing meals and help with managing their loved one’s money would be helpful.
Area agencies on aging offer many supports caregivers say they want, Cole said, and some new ones are on the way.
Yet a lot of caregivers don’t know that, said Shawna Mahan, who manages the in-home services bureau at Davis County Health Department.
“They find themselves in the middle of the caregiving role and they don’t really even know where to get started,” Mahan said.
The Davis County Health Department offers:
In-home services through its Alternatives program.
A program specifically for veterans.
Two Medicaid waiver programs.
The support groups can be especially helpful, Mahan said, because they let caregivers learn from each other.
Other programs at the county’s senior centers can give caregivers the chance to socialize and take some time for themselves, Mahan said.
Mountainland Association of Governments offers similar services to help avoid burnout, Cole said, including:
The state support program to help pay for adult day care and
Other chances for a break or help, such as support groups.
Educational programs like “caregiver stress-busting.”
There aren’t a lot of long-term supports, Cole said, but that could change soon.
Medicaid funds some long-term care, she said, and there’s now a new model that could mean Medicare also would pay for some services. It would be “huge” if the model, which launches July 1 and will run for eight years, becomes permanent, Cole said.
Utahns can find resources through their local Area Agency on Aging at the Utah Commission on Aging’s website: ucoa.utah.edu/area-agencies-on-aging.php.
Megan Banta is The Salt Lake Tribune’s data enterprise reporter, a philanthropically supported position. The Tribune retains control over all editorial decisions.
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