How supporting caregivers can make a difference in dementia

At 80 years old, Rose Carfagno is attractive, sociable and independent, 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, Mr. Carfagno began showing signs of dementia. He struggled to remember to eat dinner, pay bills, or take his blood pressure medication. He stopped working and dancing. When he collapsed in 2015 at his home in West Norriton, Pennsylvania, Rosanne realized he would have to move in with her, her husband, and their two children, who lived 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.

To ease that burden, Medicare, the federal health insurance program for people age 65 and older, is an eight-year program. A groundbreaking plan will get a pilot project underway this summer. The government will fund programs that provide direct support to carers of people with dementia. Medicare believes investing in carers will pay off by maintaining the health and wellbeing of people with dementia, without draining families emotionally and financially.

Support on the front lines

Medicare programs, Leading the way to improved dementia experiences – or guide –It is modeled after promising smaller programs in collaboration with academic institutions such as UCLA, University of California, San Francisco (UCSF), Emory University and Indiana University.

“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.

Provided by Eskenazi Health

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 know what I'm doing,' and she was unusually aggressive and agitated, 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 enroll in traditional Medicare insurance, which only about half of people over 65 have. 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, if Medicare-like caregiver assistance programs are expanded to all eligible dementia patients, one estimate is that $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 Reuben, chair of geriatrics at the University of California, Los Angeles (UCLA), said of his feelings when he heard about the Medicare plan. “I cried for the people across the country whose needed services will be paid for.”

Ruben directs UCLA's Alzheimer's and Dementia Care Program, which includes a family caregiver component that is one of the models in a Medicare pilot project. The UCLA model currently serves about 1,000 people but has not been fully reimbursed by Medicare or other insurers and continues to operate at a loss.

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 off. Dan Gorenstein is editor-in-chief of Tradeoff, and Alex Holguin is a reporter and producer for the show. Versions of this story First appearance. Sign up for Tradeoffs' weekly newsletter Get more healthcare reports delivered to your inbox.

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