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Barbara Cameron has been a caregiver before and knows the importance of giving yourself grace.
Cameron helped with care for her mother and her mother-in-law, who had Alzheimer’s, and said it can be hard to maintain poise and balance. It’s key, she said, to find ways to keep your sense of self — and to laugh.
“You have to still be your own person in some way and not just let yourself drain away,” she said before a recent Alzheimer’s education conference in West Valley City.
It’s common for caregivers to feel guilt, said Linda Cole, deputy director of aging and family services for Mountainland Association of Governments.
They feel like they aren’t doing enough and yet exhausted at the same time, she said, and 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.”
What it’s like is often draining, according to a survey and report produced by the Kem C. Gardner Policy Institute.
That survey generally found that more than 40% of caregivers experience financial stress, and more than half lean on friends and family for support.
It also found that as people provide more hours of care for a loved one, they’re more likely to delay their own health care and experience financial and mental stress — as they struggle to balance caregiving, family life, work and self care.
As Utah’s population ages, and more people require care, it’s likely more caregivers will need support.
There are several support programs available, from money to pay for adult day care to classes on managing stress.
But, Cole said, there needs to be more long-term support and recognition of the work caregivers do and what they endure.
Caregivers experience difficulty balancing their own needs
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.
So does difficulty balancing their own needs.
For example, 23% of caregivers surveyed reported they had delayed their own health care because of caregiving responsibilities.
That number increased as caregiving hours increased, from 9% of people providing up to five hours of care to:
33% of people providing six to 20 hours of care.
37% of people providing 21 to 40 hours of care.
51% of people providing more than 40 hours of care.
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 report acknowledges the survey had limitations, including that some people may screen calls or not have the time to do a 10- to 12-minute phone survey.
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.
Joyce Swan and her younger sister are on the lesser end of that spectrum, caring for their older sister, Ruth Swanson.
Swanson can still get through her daily routine and is still in her home.
“She’s the toughest out of all of us,” Swan said of her older sister.
Swan said it’s their goal to keep Swanson in her own home as long as possible before she needs to move in with one of them because she’s “quite a nester and a homebody.”
(Francisco Kjolseth | The Salt Lake Tribune) Joyce Swan, on the left, along with her younger sister, is committed to ensuring that their older sibling, Ruth, at right, can remain in her own home for as long as possible. Ruth was diagnosed with Alzheimer’s approximately five or six years ago. Recently, the two sisters participated in an Alzheimer’s Foundation of America education tour in West Valley City on Wednesday, May 15, 2024. Joyce remarked that Ruth is “the toughest among all of us.”
Swan sees “so many things” that Swanson misses, but said it can be hard to communicate about memory lapses and other common Alzheimer’s symptoms because she doesn’t want to worry her older sister.
Then there are the sensitive topics that are hard to address, Swan said — such as following up on the doctor’s advice to be careful of urinary tract infections. Swan said she wasn’t always sure how to ask her sister about that, though Swanson joked that she usually tells her sister everything.
Donna Cross, a research associate professor at the University of Utah with a doctorate in neuroscience, has been closer to the other end of the spectrum. She and her husband took care of his father for four years in their own home before his anxiety and paranoia increased.
“We used to go into his room and find rotted food,” she said, and they moved him to a home when it became too much to handle.
Anxiety, paranoia and similar symptoms are what Cross thinks caregivers “have the hardest time with.”
Alzheimer’s and brain injuries are personal to Cross — besides her father-in-law’s dementia, her grandmother had Alzheimer’s.
They’re also at the crux of her career. She’s spent more than a decade shepherding research that’s being lauded as a significant breakthrough in treating brain disorders and has shown promising results in mice.
She’s trying to raise money to bypass the need to apply for federal funding — a process that could set her research back another year, even as she’s sensing there’s an urgent need for it. Minutes after she finished giving a speech on her research, a woman approached her asking about human trials because she’d like to get her mother into one.
(Francisco Kjolseth | The Salt Lake Tribune) Donna Cross, a research associate professor at the University of Utah with a doctorate in neuroscience talks about her research as she attends an Alzheimer's education conference in West Valley City on Wednesday, May 15, 2024.
While people wait for a fix, Cross recommends that caregivers make sure their loved ones are exercising. Research has shown exercise can reduce cognitive decline.
Cameron, who cared for her mother and mother-in-law, added it’s important to find resources as soon as possible. She came to the conference to hear Cross’ research and learned about several resources she didn’t know were available.
Support groups, educational programs, other services are available
Utahns likely will need more support and resources in the coming decades, as the state’s population ages.
In 1980, less than 8% of Utah residents were over 65. By 2020, this share increased to nearly 12%.
Projections by demographers at Gardner indicate the state’s retirement-age population will likely be more than 20% of Utah’s population by 2060.
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. About 40% said financial support would be helpful.
But a third or less said services like providing meals and help with managing their loved one’s money would be helpful. In fact, 37% said help with money management wouldn’t be helpful at all.
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.
“A lot of them don’t know where to turn for services,” Mahan said. “They find themselves in the middle of the caregiving role and they don’t really even know where to get started.”
The health department offers in-home services through its Alternatives program, a program specifically for veterans, two Medicaid waiver programs and support groups.
The support groups can be especially helpful, Mahan said, because they let caregivers learn from each other.
“When you’re so entrenched in it, it’s hard to think of those simple tips,” she said.
Other programs at the county’s senior centers can give caregivers the chance to socialize and take some time for themselves, Mahan said. Breaks early on are more beneficial than waiting until a caregiver is completely burned out, she added.
There’s particular concern about a growing group of middle-aged adults who are caring for their children while also serving as a caregiver for an adult loved one, Cole said. Those people are likely still working and trying to be involved in their children’s lives while adding the responsibilities of caregiving.
“Those are the folks who we are concerned about with the burnout,” she said. “They’re burning both ends of the candle there.”
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 and 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.
More paid caregiving options would be helpful, Cole said, so people “don’t have the stress and burden of needing to work while having a loved one to care for.”
Overall, Cole said, caregivers need more recognition of what they do to help their ailing loved ones.
“It’s not just financial,” she said. “It’s a quality-of-life thing.”
Megan Banta is The Salt Lake Tribune’s data enterprise reporter, a philanthropically supported position. The Tribune retains control over all editorial decisions.
