Skip to content
A New Medicare Proposal Would Cover Training for Family Caregivers

A New Medicare Proposal Would Cover Training for Family Caregivers

Patti LaFleur鈥檚 mother, Linda LaTurner, moved into her home after her dementia progressed and care became complicated. 鈥淢y mom had always been a very happy easygoing person. But she withdrew from social situations and cried a lot,鈥 LaFleur says. (Patti LaFleur)

Even with extensive caregiving experience, Patti LaFleur was unprepared for the crisis that hit in April 2021, when her mother, Linda LaTurner, fell out of a chair and broke her hip.

LaTurner, 71, had been diagnosed with early-onset dementia seven years before. For two years, she鈥檇 been living with LaFleur, who managed insulin injections for her mother鈥檚 Type 1 diabetes, helped her shower and dress, dealt with her incontinence, and made sure she was eating well.

In the hospital after her mother鈥檚 hip replacement, LaFleur was told her mother would never walk again. When LaTurner came home, two emergency medical technicians brought her on a stretcher into the living room, put her on the bed LaFleur had set up, and wished LaFleur well.

That was the extent of help LaFleur received upon her mother鈥檚 discharge.

She didn鈥檛 know how to change her mother鈥檚 diapers or dress her since at that point LaTurner could barely move. She didn鈥檛 know how to turn her mother, who was spending all day in bed, to avoid bedsores. Even after an occupational therapist visited several days later, LaFleur continued to face caretaking tasks she wasn鈥檛 sure how to handle.

鈥淚t鈥檚 already extremely challenging to be a caregiver for someone living with dementia. The lack of training in how to care for my mother just made an impossible job even more impossible,鈥 said LaFleur, who lives in Auburn, Washington, a Seattle suburb. Her mother passed away in March 2022.

A new proposal from the Centers for Medicare & Medicaid Services addresses this often-lamented failure to support family, friends, and neighbors who care for frail, ill, and disabled older adults. For the first time, it would authorize Medicare payments to health care professionals to train informal caregivers who manage medications, assist loved ones with activities such as toileting and dressing, and oversee the use of medical equipment.

The proposal, which covers both individual and group training, is a long-overdue recognition of the role informal caregivers 鈥 also known as family caregivers 鈥 play in protecting the health and well-being of older adults. About 42 million Americans provided unpaid care to people 50 and older in 2020, according to a .

鈥淲e know from our research that nearly 6 in 10 family caregivers assist with medical and nursing tasks such as injections, tube feedings, and changing catheters,鈥 said Jason Resendez, president and CEO of the National Alliance for Caregiving. But fewer than 30% of caregivers have conversations with health professionals about how to help loved ones, he said.

Even fewer caregivers for older adults 鈥 only 7% 鈥 report receiving training related to tasks they perform, according to a June 2019 report in JAMA Internal Medicine.

Cheryl Brown鈥檚 husband, Hardy, was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig鈥檚 disease, in 2002. He can鈥檛 walk but he can use his arms and hands. Brown says she 鈥渘ever gets a break鈥 from caregiving responsibilities. (Van Howard/Image Arts)

Nancy LeaMond, chief advocacy and engagement officer for AARP, experienced this gap firsthand when she spent six years at home caring for her husband, who had amyotrophic lateral sclerosis, a neurological condition also known as Lou Gehrig鈥檚 disease. Although she hired health aides, they weren鈥檛 certified to operate the feeding tube her husband needed at the end of his life and couldn鈥檛 show LeaMond how to use it. Instead, she and her sons turned to the internet and trained themselves by watching videos.

鈥淯ntil very recently, there鈥檚 been very little attention to the role of family caregivers and the need to support caregivers so they can be an effective part of the health delivery system,鈥 she told me.

Several details of CMS鈥 proposal have yet to be finalized. Notably, CMS has asked for public comments on who should be considered a family caregiver for the purposes of training and how often training should be delivered.

(If you鈥檇 like to let CMS know what you think about its caregiving training proposal, you can comment until 5 p.m. ET on Sept. 11. The expectation is that Medicare will start paying for caregiver training next year, and caregivers should start asking for it then.)

Advocates said they favor a broad definition of caregiver. Since often several people perform these tasks, training should be available to more than one person, Resendez suggested. And since people are sometimes reimbursed by family members for their assistance, being unpaid shouldn鈥檛 be a requirement, suggested Anne Tumlinson, founder and chief executive officer of ATI Advisory, a consulting firm in aging and disability policy.

As for the frequency of training, a one-size-fits-all approach isn鈥檛 appropriate given the varied needs of older adults and the varied skills of people who assist them, said Sharmila Sandhu, vice president of regulatory affairs at the American Occupational Therapy Association. Some caregivers may need a single session when a loved one is discharged from a hospital or a rehabilitation facility. Others may need ongoing training as conditions such as heart failure or dementia progress and new complications occur, said Kim Karr, who manages payment policy for AOTA.

When possible, training should be delivered in a person鈥檚 home rather than at a health care institution, suggested Donna Benton, director of the University of Southern California鈥檚 Family Caregiver Support Center and the Los Angeles Caregiver Resource Center. All too often, recommendations that caregivers get from health professionals aren鈥檛 easy to implement at home and need to be adjusted, she noted.

Nancy Gross had to perform 鈥渘ursing tasks I wasn鈥檛 prepared to do鈥 when her husband, Jim Kotcho, came home after a stem cell transplant for leukemia. 鈥淯ntil you鈥檙e really into caregiving, you don鈥檛 know what your issues will be,鈥 she says. (Jim Kotcho)

Nancy Gross, 72, of Mendham, New Jersey, experienced this when her husband, Jim Kotcho, 77, received a stem cell transplant for leukemia in May 2015. Once Kotcho came home, Gross was responsible for flushing the port that had been implanted in his chest, administering medications through that site, and making sure all the equipment she was using was sterile.

Although a visiting nurse came out and offered education, it wasn鈥檛 adequate for the challenges Gross confronted. 鈥淚鈥檓 not prone to crying, but when you think your loved one鈥檚 life is in your hands and you don鈥檛 know what to do, that鈥檚 unbelievably stressful,鈥 she told me.

For her part, Cheryl Brown, 79, of San Bernardino, California 鈥 a caregiver for her husband, Hardy Brown Sr., 80, since he was diagnosed with ALS in 2002 鈥 is skeptical about paying professionals for training. At the time of his diagnosis, doctors gave Hardy five years, at most, to live. But he didn鈥檛 accept that prognosis and ended up defying expectations.

Today, Hardy鈥檚 mind is fully intact, and he can move his hands and his arms but not the rest of his body. Looking after him is a full-time job for Cheryl, who is also chair of the executive committee of California鈥檚 Commission on Aging and a former member of the California State Assembly. She said hiring paid help isn鈥檛 an option, given the expense.

And that鈥檚 what irritates Cheryl about Medicare鈥檚 training proposal. 鈥淲hat I need is someone who can come into my home and help me,鈥 she told me. 鈥淚 don鈥檛 see how someone like me, who鈥檚 been doing this a very long time, would benefit from this. We caregivers do all the work, and the professionals get the money? That makes no sense to me.鈥

We鈥檙e eager to hear from readers about questions you鈥檇 like answered, problems you鈥檝e been having with your care, and advice you need in dealing with the health care system. Visit聽聽to submit your requests or tips.