Despite her extensive nursing experience, Patti Lafleur was ill-prepared for the crisis that hit her in April 2021 when her mother, Linda LaTurner, fell out of a chair and broke her hip. .
LaTurner, 71, was diagnosed with early-onset dementia seven years ago. For two years, she lived with Lafleur, who managed insulin injections for her mother’s type 1 diabetes, helped her shower and change clothes, dealt with incontinence, and made sure she was eating well.
Lafleur was told in hospital that he would never walk again after his mother had a hip replacement. When her Ms. Laturner came home, her two paramedic technicians carried her on her stretcher to the living room, placed her on the bed Lafleur had set up for her, and sent her to her safety. prayed for
That was the extent of the help Lafleur received when his mother left the hospital.
At that point, Ms. LaTurner could barely move, so she didn’t know how to change or dress her mother. She didn’t know how to avoid bedsores with her mother spending all day in her bed. Even after a visit by an occupational therapist a few days later, Lafleur continued to face caregiving tasks she didn’t know how to handle.
“Being a caregiver for someone living with dementia is already very difficult. Not being trained to care for my mother made an impossible task even more impossible,” she said. LaFleur, who lives outside of Seattle in Auburn, Washington, said. Her mother passed away in March 2022.
A new proposal from the Centers for Medicare and Medicaid Services addresses the often lamented failure to support family, friends, and neighbors in caring for frail, sick, or disabled older people. be. For the first time, it will allow Medicare payments to medical professionals who administer medications, assist loved ones with activities such as toileting and dressing, and train informal caregivers to supervise the use of medical equipment.
The proposal covers both individual and group training and has long recognized the role that informal caregivers (also known as family caregivers) play in protecting the health and well-being of older people. About 42 million Americans provided unpaid care to people over the age of 50 in 2020, according to a much-cited report.
“Our research shows that nearly 6 in 10 family caregivers assist with medical and nursing care tasks such as injections, tube feedings, and catheter replacements,” says the National Alliance for Caregiving. said Jason Rezendes, president and CEO of However, fewer than 30% of caregivers have discussed with a medical professional how to help their loved ones.
A June 2019 report in JAMA Internal Medicine found that even fewer caregivers of older adults reported receiving training relevant to the tasks they perform.
Nancy Leemond, AARP’s Chief Advocacy and Engagement Officer, said as she spent six years at home caring for her husband, who had amyotrophic lateral sclerosis, a neurological disorder also known as Lou Gehrig’s disease. I have experienced this gap first hand. She hired paramedics, but they were not qualified to operate the feeding tubes her husband needed at the end of her life and were unable to teach Ms. Leemond how to use them. Instead, she and her sons turned to the internet and watched videos to train.
“Until recently, little attention has been paid to the role of family caregivers and the need to support caregivers so that they can take on effective roles in the health care delivery system,” she told me. Told.
Some details of the CMS proposal are yet to be finalized. Notably, CMS is seeking public comment on who should be considered family caregivers for training purposes and how often training should occur.
(If you’d like to let us know what you think of CMS’s caregiver training proposal, you can comment on the CMS site until 5:00 pm ET on September 11. Medicare will start paying for caregiver training next year. expected, and from then on the caregiver should start asking for it.)
Advocates said they supported caregivers broadly. Because these tasks are often performed by multiple people, Resendez suggested that training should be available to multiple people. And because people may be reimbursed by their families for help, being unpaid shouldn’t be a requirement, said the founder and CEO of ATI Advisory, an aging and disability policy consulting firm. One Mr. Anne Tamlinson suggested.
When it comes to the frequency of training, a one-size-fits-all approach is not appropriate given the diverse needs of older people and the diverse skills of those who support them, said Sharmila, vice president of regulatory affairs at the American Institute of Vocational Training. Sandu said. therapy association. Some caregivers may need one session when their loved one is discharged from the hospital or rehabilitation facility. Kim Carr, who manages AOTA’s payment policy, said some people need continued training as conditions such as heart failure and dementia progress and new complications arise.
Where possible, training should be provided in an individual’s home rather than a medical facility, suggested Donna Benton, director of the University of Southern California Family Caregiver Support Center and Los Angeles Caregiver Resource Center. Recommendations that caregivers get from health professionals are often not easy to implement at home and need to be adjusted, she noted.
Nancy Gross, 72, of Mendham, New Jersey, experienced this when her husband, Jim Kocho, 77, underwent a stem cell transplant for leukemia in May 2015. When Koccho returned home, Gross was responsible for flushing out the port in her body. She examined his chest, administered drugs through the site, and made sure all instruments she was using were sterile.
A visiting nurse came out and provided an education, but it wasn’t enough for the challenges Ms. Gross faced. “I’m not the type to cry a lot, but it’s incredibly stressful when you think your loved one’s life is in your hands and you don’t know what to do,” she told me.
Meanwhile, Cheryl Brown, 79, of San Bernardino, California, has been caring for her husband, Hardy Brown Sr., 80, since he was diagnosed with ALS in 2002. I’m skeptical about paying for training at home. At the time of her diagnosis of Hardy, her doctors gave her a maximum of five years to live. However, he did not accept the prediction and ended up falling short of his expectations.
Hardy’s mind is now completely intact and he can move his hands and arms, but not the rest of his body. Caring for him is a full-time job for Cheryl, the executive chair of the California Commission on Aging and a former California legislator. She said hiring paid help was not an option given the cost.
And that’s what makes Cheryl so frustrated about Medicare’s training offer. “What I need is someone to come to my house and help me,” she told me. “I don’t know how someone like me who has been doing this for a long time will benefit from this. Are we caregivers doing all the work and the professionals getting paid? ?That makes no sense to me.”