For years, Alice Thomas was the sole caregiver for her father as his dementia and mobility declined.
She enrolled in California’s In-Home Supportive Services program in 2024, hoping it would connect her to real instruction about how to care for her father. The caseworker who signed her up told her what the job was and what it paid. But Thomas said there was no walk-through of how to do it.
That gap showed up in the smallest, most physical moments. One afternoon, while bathing her father, Thomas found bruising on his body. She didn’t know what to do. She was afraid that water or the wrong touch or anything she tried might injure him. She had no way to read his face or his sounds and know whether she was helping or hurting him.
And then there were the falls. “There were times where my father would fall, and I was unable to pick him up,” Thomas said.
She called 911 at 3 a.m. because she was alone and he was on the floor.
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Tammy Gustin’s experience is similar. She has been a primary caregiver six times over — for her grandfather, her in-laws, her aunt, her grandmother and her mother — across cancer, Parkinson’s disease and pneumonia. Caring for her aunt, who had uterine cancer and dementia and was on dialysis, Gustin spent hours searching government websites for guidance. What little information she found was generic and not helpful for her experience.
Gustin second-guessed her ability to do the job safely because no one had ever demonstrated the physical aspects of it to her. No one prepared her for wound care, or even basics such as how to turn over a person who’s on dialysis.
“It puts a person through every stage of anxiety,” she said, “because you don’t want to hurt the person you are caring for.”
What Thomas and Gustin experienced isn’t unusual. Many of the nation’s 63 million family caregivers feel like they are left to sink or swim in taking care of ailing and often frail loved ones.
Medicare stepped in to address that in 2024 with a new training benefit for family caregivers. There also are state programs that train family members in how to give medication, prevent bedsores and infections, tend to wounds, move a person safely, communicate effectively with them and manage their specific medical conditions. Many caregivers are not aware of these benefits, experts say, because they aren’t widely promoted and sometimes require healthcare providers to initiate them.
“We build a healthcare system that truly depends on family caregivers to do all of these tasks, but what has not happened is that with that expectation, there’s no system that actually supports them,” said Rita Choula, senior director of caregiving at the AARP Public Policy Institute.
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As care has increasingly moved from the hospital to the home, family members are being asked to do what medical professionals used to do, without training and often without pay. AARP research shows that 40% of caregivers are providing high-intensity care including managing medical equipment, giving injections and preparing special diets. But only about 1 in 5 receives any training.
Choula and her team found that many providers were unaware or unfamiliar with the new Medicare reimbursement codes used to access the benefit. In the first year and a half the training was offered, Medicare paid claims that benefited about 9,600 recipients, an AARP study found.
The Centers for Medicare & Medicaid Services told CNN via email that it has “taken steps to make people with Medicare and their caregivers aware of caregiver training services, including coverage and cost information in the ‘Medicare & You’ handbook’” as well as other outreach materials. The agency declined an interview but said that it is monitoring implementation and feedback of its caregiver training services and continuing to “explore new ways to raise awareness.”
The State Health Insurance Assistance Program , a federally funded network of Medicare counselors in every state, did not respond to multiple requests for comment.
Minnesota is the only state with a formal, certified, state-funded profession built entirely around this kind of coaching, according to Maureen Schneider, chair of the Minnesota Board on Aging . The model runs through 42 agencies statewide and 105 certified consultants, serving roughly 17,300 caregivers a year. The program is free to families, using funding from the federal Older Americans Act .
“It’s a collaborative partnership between the person’s caregiver and a professional focusing on the needs and goals and challenges of the person who is doing the caregiving,” Schneider said.
Consultants bring training in dementia, grief, financial navigation and adult protective services, and stay with a family for months or years, not a single visit.
Those services helped Ron Patrick, who spent years caring for his wife, Vangie, as her health declined, her knees failed, her falls increased and dementia set in. His experience changed when Minnesota caregiver consultant Jayne Mund arrived with a team to teach Ron how to care for Vangie without hurting her or himself. They demonstrated how to lift her safely when she fell, and how to get her to the bathroom in the middle of the night. They covered what she should be eating as her condition changed, and how to support her while she walked, so a stumble didn’t become a fall. It was specific, hands-on, repeated instruction.
As Vangie’s condition worsened, however, the job grew tougher, and the strain showed on Ron, who was in his 80s.
“We were essentially trying to take care of both of them at the same time,” said his daughter-in-law, Karla Patrick, a registered nurse.
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Mund and her team returned to guide Vangie through the transition to a skilled nursing facility, and help Ron reconcile promises he made to his wife with the fact that he could not be her primary caregiver. Doing so enabled Ron to make the decision on Vangie’s placement with confidence instead of guilt.
“The hardest part for me to do was our wedding vows, for better, for worse, in sickness and in health,” Ron said. “But with the help of my family and Jayne and the preacher, they convinced me that I was still taking care of her. It was just a different way.”
The Patrick family only knew about Minnesota’s program because Karla Patrick went searching for help through the state. Schneider said that research, and word of mouth, is how most people find out about the program, which doesn’t budget much for outreach.
Wisconsin has tried to build something similar, county by county. In Kenosha County, caregiver support coordinator Margaret Ricchio and her colleagues work the way Mund’s team does in Minnesota: in person, in living rooms. Ricchio builds a plan around what families need, including hands-on instruction in caregiving basics.
Trualta, a free platform in Wisconsin that relaunched in 2025 after federal money ran out a year earlier, offers articles, webinars and virtual support groups to family caregivers. It also offers hands-on resources that are delivered through Aging and Disability Resource Centers, such as the one Ricchio works for in Kenosha County.
“By the time a caregiver comes to me, they are at the point of being completely overwhelmed,” Ricchio said. “It’s considered a crisis situation.”
As in Minnesota, Wisconsin does little to promote the programs, which vary by county. While Ricchio gets some referrals through Trualta, she also tries to spread the word herself. She found one of her clients through a casual conversation with a grocery store cashier, who told her about a family in dire need of caregiver resources. The Wisconsin Department of Health Services said it’s trying to reach working-age caregivers through employers and human resources departments but has little dedicated money to do it.
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At one time, California was ahead of the game, becoming one of the first states to launch a Master Plan for Aging in 2021, which stressed support for caregivers.
A grant program called CalGrows put $89 million in federal American Rescue Plan Act money toward building a bigger caregiver workforce in 2023. It funded 850 trainings in 10 languages for career and family caregivers before it ended in October 2024.
“More than 7 million Californians care for loved ones, and many take on that role without formal training or support,” said Claire Ramsey, acting director for the California Department of Aging. “Supporting family caregivers is central to California’s Master Plan for Aging and to CDA’s mission of helping people age with dignity and independence. CalGrows demonstrated the value of accessible caregiving education, and we are continuing to build on that work by connecting caregivers to training, services, and resources that strengthen families and communities across the state.”
Eileen Norman runs the San Francisco IHSS Public Authority, referring Medi-Cal (California’s Medicaid program, access in-home care) recipients to the nonprofit Family Caregiver Alliance , which offers free training and a mentorship program to help people navigate in-home support services. Norman said she’s never heard of the Medicare caregiver-training benefit that, on paper, should be available to many of the families with whom she works.
“There is lots of community support,” Norman said. “We just have to remember that we have to look for it.”
The problem, she said, is that caregivers in crisis don’t know where to look. By the time they find out what exists, they’ve often already been through the hardest part alone — the falls, the bruises, the 3 a.m. calls that a trained person could have walked them through in advance.
“A lot of times when people finally find us,” she said, “they’re like, ‘I wish I knew about you sooner.’”
Ron Patrick is emblematic of the many caregivers who struggle in silence because they don’t know where to turn. Now 85, he lives in a senior community north of Minneapolis, where residents own their units and look out for each other. On Monday mornings, he volunteers at a hospital, sitting at the front desk, helping visitors find where they need to go. He texts his son and daughter-in-law every morning and wears a medical alert pendant, just in case.
“They keep a good eye on me,” he said of his family. “They’re fantastic help.”
Raginee Sudhir Chaurey is a writer with the Investigative Reporting Program at the University of California, Berkeley Graduate School of Journalism and covered this story through a grant from The SCAN Foundation .
