For years, Alice Thomas cared for her father alone as dementia and declining mobility increased his needs. She enrolled in California’s In Home Supportive Services program in 2024, but said the enrollment process explained the job and its pay without showing her how to perform difficult caregiving tasks.

The lack of instruction became frightening during intimate moments. After discovering bruises while bathing her father, Thomas worried that water, the wrong touch or another mistake might hurt him, and she could not interpret his expressions or sounds well enough to know.

Falls created another crisis. “There were times where my father would fall, and I was unable to pick him up,” Thomas said, describing how she once called 911 at 3 a.m. because she was alone and her father was on the floor.

Tammy Gustin faced similar uncertainty while serving as a primary caregiver six times for her grandfather, her in laws, her aunt, her grandmother and her mother. Their conditions included cancer, Parkinson’s disease and pneumonia.

While caring for an aunt who had uterine cancer and dementia and was receiving dialysis, Gustin spent hours searching government websites. She found little practical help and no demonstration of wound care or how to turn someone receiving dialysis.

Their experiences reflect a broader struggle among the nation’s 63 million family caregivers, many of whom must care for frail or ill relatives without adequate preparation. Medicare introduced a training benefit for family caregivers in 2024, while some states also offer instruction.

Available training can cover medication, infection and bedsore prevention, wound care, safe movement, communication and management of specific medical conditions. Experts say many caregivers remain unaware because the services receive little promotion and can require health care providers to initiate access.

AARP research found that 40% of caregivers provide care of high intensity, including managing medical equipment, administering injections and preparing special diets. Only about 1 in 5 receives any training, even as more care has shifted from hospitals into homes.

Rita Choula, senior director of caregiving at the AARP Public Policy Institute, and her team found that many providers were unfamiliar with Medicare’s reimbursement codes for the benefit. During its first year and a half, Medicare paid claims benefiting about 9,600 recipients, according to an AARP study.

The Centers for Medicare & Medicaid Services told CNN that it has used the “Medicare & You” handbook and other outreach materials to explain caregiver training coverage and costs. The agency said it continues to monitor implementation and feedback while exploring additional ways to improve awareness.

Minnesota is the only state with a formal, certified and state funded profession devoted entirely to this coaching, according to Maureen Schneider, chair of the Minnesota Board on Aging. Its model operates through 42 agencies and 105 certified consultants, serving about 17,300 caregivers annually at no cost to families.

Those services reached Ron Patrick as he cared for his wife, Vangie, through declining health, failed knees, increasing falls and dementia. Minnesota caregiver consultant Jayne Mund and her team repeatedly demonstrated safe lifting, nighttime bathroom assistance, walking support and appropriate food as Vangie’s condition changed.

As Vangie’s health worsened, Mund’s team helped guide her transition to a skilled nursing facility and supported Ron as he reconsidered promises he had made to remain her primary caregiver. Their help allowed him to approach the placement with confidence rather than guilt.

Minnesota’s program has little money for outreach, and the Patrick family discovered it only because daughter in law Karla Patrick searched for state assistance. Schneider said research and word of mouth are how most families learn that the service exists.

Wisconsin has developed a similar approach by county. In Kenosha County, caregiver support coordinator Margaret Ricchio meets families in their homes, creates plans based on their needs and provides practical instruction in caregiving basics.

Wisconsin also offers Trualta, a free platform that relaunched in 2025 after federal funding ended a year earlier. It provides articles, webinars, virtual support groups and practical resources through Aging and Disability Resource Centers, although state promotion remains limited.

California launched a Master Plan for Aging in 2021 that emphasized caregiver support. CalGrows later used $89 million in federal American Rescue Plan Act funding to provide 850 trainings in 10 languages for professional and family caregivers before ending in October 2024.

Eileen Norman, who runs the San Francisco IHSS Public Authority, connects Medi-Cal recipients with the nonprofit Family Caregiver Alliance for free training and mentorship. Yet Norman said she had never heard of Medicare’s caregiver training benefit, despite working with families who could potentially use it.

“There is lots of community support,” Norman said. “We just have to remember that we have to look for it.”

For caregivers already facing falls, bruises and overnight emergencies, finding that support can come painfully late. Norman said families who eventually reach available programs often tell her, “I wish I knew about you sooner.”

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