Ten years ago, the plight of family caregivers was not high on policymakers’ agendas.
California’s network of elder care support had endured deep budget cuts as a result of the Great Recession. Alarmed activists persuaded lawmakers to empower a commission that could raise awareness of the needs of older residents. Donna Benton, a research associate professor at the USC Leonard Davis School of Gerontology, was appointed to co-chair the commission’s caregiving task force.
The commission’s recommendations led to a state Master Plan for Aging, which, in turn, created a blueprint that legislators and bureaucrats continue to use to improve and enhance services for older Californians. In 2019, for example, thanks to a recommendation from Benton’s task force, Gov. Gavin Newsom boosted funding for caregiving centers by $10 million per year for three years.
From advocacy to research, Benton and other USC Leonard Davis School faculty and graduate students are shining a light on the complexities of caregiving and the needs of caregivers of older adults. In the process, they’re revealing a hard truth: Even as more is done to support those providing elder care, gaping holes in our social safety net mean caregivers continue to struggle.
Professor Kathleen Wilber, the Mary Pickford Foundation Chair in Gerontology, has served on the state caregiving task force that Benton co-chaired. She knows that California offers more services and invests more money in caregiving than many other states. Still, compared with other postindustrial nations, she says, that’s not much.
“In the U.S., it’s just assumed that, whatever hand you draw in terms of being a caregiver, you do it, and that’s a family responsibility,” she says. “It’s pretty piecemeal, and there’s a lot of financial implications and loss” for the caregiver.
Wilber has focused her research on elder abuse. This can be an issue in caregiving when caregivers are so stressed out and overburdened that they lash out at their loved ones, she says.
“This happens even unintentionally with people who are doing their best,” she says. “Part of the research I’m working on is, how do we do a better job helping them? And what tools do we have to help them avoid that thing where Mom’s up all night and at risk of wandering? Nobody can do that 24/7.”
A 2020 study, which Wilber co-authored with faculty from Keck School of Medicine of USC and USC Leonard Davis, illustrated how critical familial support can be. The study examined the types of abuse reported to the National Center on Elder Abuse resource line. Nearly 50% of the time, the abusers were identified as family members, making family caregivers the most commonly identified perpetrators. Financial abuse was the most commonly reported abuse (54.9%); when there was physical abuse, it was likely to co-occur with another type of abuse (65.9%). The findings, the researchers wrote, “point to the importance of supportive resources for elder abuse victims and their loved ones.”
It’s that support — and strengthening it further — that remains the goal for researchers and advocates.
When Benton first joined the California Commission on Aging, caregiver resources were in jeopardy. California has 11 regional Caregiver Resource Centers, which support 18,000 people annually with services such as respite care, support groups, and legal and financial counseling. In 2012, after enduring deep cuts, the centers nearly saw their funding eliminated in a budget proposed by then-Gov. Jerry Brown.
Funding for caregivers and caregiving of older adults “has advanced, really significantly, since I was on the commission,” Benton says. “There’s been the acknowledgment that we need a stable, statewide system for caregiver resources.”
Benton, who is director of the Family Caregiver Support Center and the Los Angeles Caregiver Resource Center at USC Leonard Davis, has also focused on the monetary struggles of family caregivers. Many take leaves from work to care for adult family members but suffer financially as a result. California is among the minority of states — most of which are on the coasts — that offer its residents some pay for their labors. A bill Benton advocated for, which Newsom signed into law last year, will boost that reimbursement. But it’s for only eight weeks of caregiving time per year (many states offer 12); cannot be used by a caregiver who is a friend rather than a relative; and, despite numerous state marketing campaigns, remains unknown by many people who could benefit from it.
With so much still left to be done, some of Benton’s priorities these days are ensuring “caregivers can have protected time off and making sure that wage replacement is sufficient,” she says. She’s particularly aware that employers and policymakers often equate elder care with parental leave, but they aren’t always the same. Unlike when workers take time off to care for a newborn, a caregiver for an older adult may see circumstances shift and change around a patient’s illness, she says.
“For an older adult, it might be that they have an intensive period of two or three weeks” of needing care, she says, “and then, maybe months later, [a patient] needs to go back for checkups. And so I really talk a lot about being able to use the more flexible pieces of our paid family leave policies, which is called intermittent care.”
Benton also collaborated recently on a research team with Susanna Mage, a PhD in Gerontology candidate. This research, led by Kylie Meyer, a 2018 USC PhD in Gerontology alumna and assistant professor at Case Western Reserve University, looked at the financial burden of caring for another person on one particularly hard-hit group: Latino caregivers. A 2021 AARP survey of family caregivers found that Latino caregivers, on average, spent nearly half their annual income on caregiving. By comparison, whites spent 18% of their income, Asians 22% and Blacks 34%.
“We were trying to understand what would make this population different from other ethnicities of caregivers,” Mage says.
A subsequent paper, titled “‘I Lay Awake at Night’: Latino Family Caregivers’ Experiences Covering Out-of-Pocket Costs When Caring for Someone Living With Dementia,” was published in February 2023 in The Gerontologist. The researchers found a strong sense of familial obligation among Latino caregivers, coupled with day-to-day income challenges and a dearth of savings. “They were kind of always distressed, wondering, ‘How am I going to pay for my loved one? What if they have to have more care than I can provide? Am I going to be able to provide for my children?’” Mage says.
Mage switched careers (she had been an environmental scientist and health care consultant) after serving as a caregiver to her father. But she says she’s been surprised to learn that even as intense as that experience was, it was cushioned significantly by her family’s financial resources.
She’s come to see financial hardship “like the ledge that you’re born on,” she says. “Some people are born on a very wide ledge, so if they take a tumble, they’ll be OK. Some people are born on a financial tightrope, so they can’t really make a lot of mistakes.”
Mage’s research focuses on caregiving for those living with dementia because it is both intensive and long-lasting, she says. It’s become clearer than ever to her, she says, that the vast majority of caregivers need more support than they get.
“A lot of people don’t realize that if you [an older person] want to stay at home, and you’re not able to live independently, you’re going to need the help of a caregiver,” she says. “And that person is most likely going to be very expensive, or it’s going to be a family member.”
Most family members don’t realize that either, she says. They may reject putting their relative into a nursing home, yet they are caught by surprise when they find themselves thrust into a caregiver role that they may not want nor feel prepared to assume.
“There’s a disconnect here,” Mage says. As a society, “we’re not looking enough at how policies could be developed to offset these out-of-pocket costs that caregivers are spending.”
The next step in Mage’s doctoral research is analyzing the acceptability of a five-week intervention designed by Meyer’s team following their previous research, which was published in The Gerontologist and funded by the AARP Foundation. The intervention focuses on ways to support Latino family caregivers via financial education and training.
Held virtually, the intervention program, Confidently Navigating Financial Decisions and Enhancing Financial Well-Being in Dementia Caregiving (CONFIDENCE), includes instruction and advice on financial issues that come up in caregiving, everything from how to check a credit report to how to know if you’re eligible for certain kinds of government financial support, Mage says. The researchers then plan to follow up with participants to see how helpful the intervention was, and whether it was relevant to their experiences and applicable to their culture, she says.
There’s still so much to be learned about what caregivers need and how best to help them, Benton says. But her experience on the Commission on Aging, how it helped create the Master Plan and how that, in turn, continues to result in new laws, policies and funding, has shown her the power of this work.
She thinks of it like a series of “concentric ripples,” she says.
The research and the policy work is like “a stone that you’ve dropped,” she says. “Then the ripples start going out.”