Helping dementia caregivers is Medicare's next move: Shots

Caring for a person with dementia is often the responsibility of the family, which can be a financial and emotional burden.

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Rose Carfagno of West Norriton, Pennsylvania, is attractive, sociable and independent at 80, still working as a hairstylist and going ballroom dancing every weekend.

“My mother worked three days a week and danced Friday night, Saturday and Sunday,” said her daughter, Rosanne Corcoran.

But over the next few years, Carfagno began showing signs of dementia. She struggled to remember to eat dinner, pay bills, and take her blood pressure medication. She stopped working and dancing. When the elderly woman passed out in 2015, Rosanne realized she needed to bring her mother back to live with her, her husband, and their two children, a few towns away.

“It hurts to pick her up, bring her home and say, 'Mommy, you're not coming home anymore,' because it means I'm taking something away from her,” Corcoran said. “It's not me that's taking it, it's the disease that's taking it, but it certainly feels that way.”

As Carfagno's emotional and physical losses continued, Corcoran's workload grew. Every day, she bathed and dressed the mother and children, took them to numerous doctor's appointments, and explained her mother's delusions in the middle of the night. Each day brought new disruptions.

“It's a complete, overwhelming feeling of never having it all under control,” Corcoran said. “A feeling of never knowing enough and never thinking you know enough.”

Roseanne Corcoran is one of the many family members and friends who provide hands-on care for nearly all of the patients. 7 million Americans People with Alzheimer's and other dementias, according to the Alzheimer's Association, Unpaid work reaches 18 billion hours At one year, caregivers often haveFinancial stress, depression and other health issues.https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf

“I'll be very clear,” Corcoran said, “that all caregivers are desperate for more help.”

Roseanne Corcoran and Rose Carfagno

Kevin Corcoran

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Kevin Corcoran

To ease this burden, Medicare, a federal health insurance program for people aged 65 and over, Launching an eight-year pilot project This summer, we will be announcing groundbreaking plans.

The government will provide funding to directly support carers of people with dementia, and Medicare believes that investing in carers will improve the health and wellbeing of people with dementia, without putting families at an emotional and financial disadvantage.

Support on the front lines

It's called the Medicare Pilot. Guide to improving dementia experiencesIt is modeled after a handful of promising smaller programs in collaboration with academic institutions such as UCLA, University of California, San Francisco, Emory University and Indiana University.

Under the Medicare version, each family is assigned a care coordinator, a sort of coach trained in dementia care who gets to know the patient and caregiver and can provide guidance and troubleshoot problems before they become serious. The coach, or another member of the care team, is on call 24/7. They also help coordinate doctor's visits and arrange daycare or home care for the patient for up to a few hours a week, easing the burden on the caregiver.

“We've never tried anything like this before,” said Liz Fowler, director of the Center for Medicare and Medicaid Innovation.

“The magic comes from our care coordinators working with patients outside the office, in their homes, in the community and with their caregivers,” said Dr. Malaz Boustani, the center's founding director. Sandra Eskenazi Brain Care Innovation Centerand is one of the pioneers of this approach to dementia care.

As a patient's mental state continues to decline, care coordinators will help them and their families deal with other symptoms that come with dementia, such as agitation, depression and sleep problems, Boustani explained.

Boustani has seen firsthand how helpful this kind of support can be.

a Randomized controlled trial A study of the program at Eskenazi Health in Indianapolis found that it reduced dementia symptoms in patients and stress in caregivers. UCSF Programs UCLA found that patients were visiting the emergency department less and were able to live at home longer.

Avoiding costly and preventable hospitalizations and helping patients live happily at home and avoid longer stays in nursing homes are two of the goals of the Medicare Project. Currently, dementia patients are covered by Medicare for almost 3 times As with other patients.

New strategies to relieve stress

Cindy Hart, an Indianapolis caregiver, credits Eskenazi Health's dementia program with keeping her mother out of a nursing home, where she met her mother's care coordinator, Lauren Sullivan.

“She taught me how to swim, how to tread water, how not to swallow my mother's sick water,” Hart said of Sullivan.

Hart's mother, Sydney Pfaff, 80, a retired nurse, was reluctant to give up daily control of her medications, but one day after finding them strewn all over the floor of her apartment, Hart tried to talk her into reason.

“She was walking through the apartment with the pills falling out of her hands,” Hart recalled, “and she was like, 'Oh no, I take my pills, I take them. I know what I'm doing.' She became unusually aggressive and agitated, to the point of screaming and rolling her eyes.”

The argument went nowhere. On the way home, Hart called Sullivan, the care coordinator, who advised Hart to stop trying to reason with her mother. Sullivan explained that Pfaff had lost the problem-solving and self-control skills she had always prided herself on.

Hart now says that conversation was a breakthrough moment.

“In my heart, I believed she still had the ability to reason,” Hart said. “This was a big step. This program helped me understand that she had lost that ability.”

With Sullivan's help, Hart built an alarm and an automated medication-dispensing device to help his mother stick to her medication regimen while still taking her own medicine.

It worked for years.

Recently, because of her dementia, Hart's mother moved from their apartment to a nearby nursing home, where nurses come to help Pfaff take her medication. When Hart visits her a few times a week, the two no longer argue. They go for walks together.

Lauren Sullivan continues to check in regularly, answering Hart's questions as new challenges arise.

“Most of our patients don't actually die from dementia,” Sullivan says. “The vast majority of patients stabilize and remain fairly healthy for long periods of time.”

Eligibility for Medicare's caregiver program is currently limited

Medicare has not yet said which health systems will be included in the pilot project or how many households will be covered. The agency has promised to release more details in early July. In the meantime, Medicare has clarified some of the eligibility criteria for patients.

• Patients must have been diagnosed with dementia.
• They must have traditional Medicare insurance, which only accounts for about half of people over 65. Medicare Advantage Plans I am not eligible.
• Patients must live in their own home, a family member's home or a care facility, but not in a nursing home.

In the end, U.S. taxpayers spent about $231 billion for dementia care This year, that figure was expected to rise in coming decades. The theory for Medicare is that by investing in caregiver support, dementia patients can stay at home longer and avoid unnecessary hospital visits, saving the government money. If such programs were expanded to eligible patients, one estimate is that they would cost $1.2 billion to cover the cost of living. $21 billion Over the next 10 years.

Ann Tumlinson, CEO ATI AdvisoryThe aging consulting firm questions whether the programs will actually save money — “When you have a family member with dementia, the needs are endless,” she says — and it's unclear whether these supports will keep most patients out of nursing homes.

“That may be a great help to them, but it shouldn't stop them from ultimately deciding, 'Hey, I can't do this anymore. I need a care facility.'”

Despite these limitations, the fact that Medicare will begin funding these types of programs is big news in the dementia care world.

“I cried,” Dr. David Ruben, director of the Alzheimer's and Dementia Care Program at the University of California, Los Angeles (UCLA), said of how he felt when he heard about the Medicare plan. “I cried for the people across the country whose needed services will be paid for.”

Ruben said the UCLA model currently serves about 1,000 people but is operating at a loss because it is not receiving full payment from Medicare and other insurers.

Reuben and other dementia experts say Medicare's decision to fund such comprehensive care could spark interest from other insurers and hospitals. Medicare's Liz Fowler said she has already heard from hospitals and doctors interested in adopting parts of the program.

“Where Medicare goes, so does the rest of the country,” Fowler said. “That's great news because it means this approach to health care is going to expand.”

“The hardest thing I've ever done”

Family caregivers like Cindy Hart and Rosanne Corcoran say this kind of awareness and support is long overdue.

Since her mother died three years ago at age 92, Corcoran has worked with a caregiver support group and started a podcast about ways to help loved ones with dementia.

“I loved my mother so much, I would have carried her on my back if I had to,” Corcoran said, “but it was still the hardest thing I've ever done.”

This story comes from the Health Policy Podcast trade offDan Gorenstein is editor-in-chief of Tradeoff, and Alex Olguin is the show's senior reporter and producer. Versions of this story First appearance. Sign up for Tradeoffs' weekly newsletter To receive more health policy reports via email, click here.