Why doesn’t Uncle Sam offer Medicare-paid training for family caregivers? Everyone agrees that family caregivers are the backbone of what passes for a long-term care system in the U.S. Yet millions are thrust into the role of caring for a loved one with no background, experience, or training. Medicare-paid training for family caregivers would seem to be a no brainer.

Well, perhaps officials in Washington are finally coming around. That was our take-away as we read this article from KFF Health News published just a few weeks back, and written by Judith Graham. Graham writes that, after years of talk but little action, Medicare officials under the direction of the Biden Administration have at last put out a proposal to help pay at least part of the costs of training for family caregivers. KFF Health News calls this “a long-overdue recognition of the role informal caregivers.” Let’s take a closer look.

Training for Family Caregivers: One Family’s Tale

Graham begins her article with the story of Patti LaFleur, an experienced caregiver who was blindsided by a crisis 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,” Graham writes. “For two years, she’d been living with LaFleur, who managed insulin injections for her mother’s Type 1 diabetes, helped her shower and dress, dealt with her incontinence, and made sure she was eating well.”

But after her mother’s fall, LaFleur was told that Linda would never walk again. Upon discharge from the hospital, two emergency medical technicians deposited Linda on the bed in the living room that LaFleur had set up and then wished her well.

“That was the extent of help LaFleur received upon her mother’s discharge,” Graham writes. LaFleur had no idea how to change her mother’s diapers, dress her, or even turn her in the bed, since Linda could not move at all on her own. Even a visit from an occupational therapist several days later didn’t provide much guidance.

“It’s 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,” says LaFleur, who lives in Auburn, Washington, a Seattle suburb. Her mother passed away in March 2022.

New CMS Proposal Covers Training for Family Caregivers

“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,” Graham writes. “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.”

To many, this proposal marks a long-overdue recognition of the way family caregivers fill in substantial gaps in the health and care of older adults. According to a fairly well-known AARP report, about 42 million Americans provided unpaid care to people over 50 in 2020.

“We 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,” says Jason Resendez, president and CEO of the National Alliance for Caregiving. “But fewer than 30 percent of caregivers have conversations with health professionals about how to help loved ones.”

Graham adds, “Even fewer caregivers for older adults — only 7 percent — report receiving training related to tasks they perform, according to a June 2019 report in JAMA Internal Medicine.”

Online Videos Help Family Caregivers Cope

Next, Graham tells us the story of Nancy LeaMond, an official with AARFP, who “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’s disease. Although she hired health aides, they weren’t certified to operate the feeding tube her husband needed at the end of his life and couldn’t show LeaMond how to use it.”

With no training offered, LeaMond and her sons did what many do-it-yourselfers do: they turned to the internet and trained themselves by watching videos.

LeaMond told Graham, “Until very recently, there’s 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.”

Training Family Caregivers: Public Comment Period

CMS’ proposal has yet to be finalized and they are currently asking for public comment on a few details, including who should be considered a family caregiver for the purposes of training, and how often that training should be delivered.

(If you’d like to let CMS know what you think about its caregiving training proposal, you can comment on the CMS site until 5 p.m. ET on September 11, 2023. The expectation is that Medicare will start paying for caregiver training next year, and caregivers should start asking for it then.)

Who should be called a “caregiver”? Advocates favor a broad definition. Resendez suggests that often several people perform these tasks, so training should be available to more than one person in a home. And Anne Tumlinson, founder and chief executive officer of consulting firm ATI Advisory, urges that being “unpaid” should not be a requirement, since people are sometimes reimbursed by family members for their assistance.

Training for Family Caregivers Not “One Size Fits All”

Experts agree that a one-size-fits-all approach simply isn’t appropriate to determine the frequency of training, considering the varied needs of older adults and the skills of the people who assist them. “Some caregivers may need a single session when a loved one is discharged from a hospital or a rehabilitation facility,” Graham writes. “Others may need ongoing training as conditions such as heart failure or dementia progress and new complications occur.”

Donna Benton, director of the University of Southern California’s Family Caregiver Support Center, adds that training should be delivered at a person’s home, rather than a health care institution. “All too often, recommendations that caregivers get from health professionals aren’t easy to implement at home and need to be adjusted,” she says.

“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,” Graham writes. “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’t adequate for the challenges Gross confronted.”

Goss told Graham, “I’m not prone to crying, but when you think your loved one’s life is in your hands and you don’t know what to do, that’s unbelievably stressful.”

Support for Family Caregivers Woefully Inadequate

Graham concludes her article with the story of Cheryl Brown, 79, of San Bernadino, California. Cheryl has been a caregiver for her husband, Hardy, since he was diagnosed with ALS in 2002, and she 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’t accept that prognosis and ended up defying expectations,” Graham writes.

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

At its core, that is what bothers Cheryl about Medicare’s proposal. “What I need is someone who can come into my home and help me,” she told Graham. “I don’t see how someone like me, who’s 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.”

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(originally reported at https://kffhealthnews.org)