Family members often provide care for people with dementia, which can take a financial and emotional toll.
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At age 80, Rose Carfagno of West Norriton, Pa., is charismatic, gregarious and independent, still working as a hairstylist and ballroom dancing every weekend.
“She worked three days a week and then danced Friday night, Saturday and Sunday,” said her daughter, Rosanne Corcoran.
But over the next few years, Carfagno began to show signs of dementia. She had trouble remembering to eat dinner, pay bills and take her blood pressure medication. She stopped working, stopped dancing. When the older woman collapsed in 2015, Roxanne decided her mom needed to move a few towns over to live with her, her husband, and their two children.
“It was heartbreaking to pick her up and take her to my house and say, ‘Mom, you can’t come home again,’ because I took something away from her,” Cochran said. “I’m not – the disease is, but I do feel like I am.”
As Carfanio’s mental and physical toll continued, so did Corcoran’s burden. She would help her mother and children bathe and dress every day, take her to numerous doctor appointments, and tell her in the middle of the night how to get rid of her paranoia. Every day brings new chaos.
“It’s a complete, utter, overwhelming feeling that can never be topped,” Corcoran said. “You never know enough and you never think you know enough.”
Rosanne Corcoran is just one of many family members and friends who provide the vast majority of hands-on care for the nearly 7 million Americans living with Alzheimer’s disease and other dementias. All this unpaid work adds up to 18 billion hours a year, according to the Alzheimer’s Association, often leaving caregivers exposed to financial stress, depression and other health problems. facts-and-numbers.pdf
“I can tell you,” Cochran said, “every caregiver is hungry for more help.”
Roseanne Cochran and Rose Carfagno
Kevin Corcoran
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Kevin Corcoran
To ease that burden, Medicare, the federal government’s health insurance plan for people 65 and older, is launching an eight-year pilot this summer with a groundbreaking plan.
The Government will provide direct funding for carers of people with dementia. Medicare believes that investments in caregivers will pay off by helping to make people with dementia healthier and happier without emotionally and financially draining their families.
Helping in the trenches
Medicare’s pilot program, called Guiding an Improvement an Improvement Dementia Experience (GUIDE), is based on collaborations with academic institutions including UCLA, UCSF, Emory University and Indiana University).
In Medicare’s version, each home would have a care coordinator — a coach trained in dementia care who gets to know the patient and caregiver and can provide guidance and resolve issues before they escalate. A coach or other member of the care team will be available 24/7. They will also help coordinate doctor visits and identify up to a few hours per week of adult day care or home care for patients to ease the burden on caregivers.
“We’ve never tried anything like this before,” said Liz Fowler, director of the Center for Medicare and Medicaid Innovation.
Dr. Malaz Boustani, founding director of the Sandra Eskenazi Center for Brain Care Innovation, said: “The magic is that care coordinators are outside the office…at home, in the community, Work with patients alongside nursing staff.
As Bustani explains, even if patients’ mental status continues to deteriorate, care coordinators help them and their families manage other symptoms of dementia, such as irritability, depression, and sleep disturbances.
Bustani has seen firsthand how helpful this type of support can be.
A randomized controlled trial of the program at Eskenazi Health Hospital in Indianapolis found that patients experienced fewer symptoms of dementia and caregivers experienced lower stress. Studies of similar programs at UCSF and UCLA found patients made fewer emergency room visits and were able to continue living at home longer.
Two goals of the Medicare program are to avoid costly, preventable hospitalizations and to keep patients happy at home and away from nursing homes. Currently, health insurance costs for people with dementia are nearly three times higher than for other patients.
New strategies for relieving stress
Cindi Hart, an Indianapolis caregiver, credits her ability to keep her mother out of a nursing home to Eskenazi Health’s dementia program. There, Hart met her mother’s care coordinator, Lauren Sullivan.
“She taught me how to swim, how to tread water, how not to swallow water when my mother was sick,” Hart said of Sullivan.
Hart’s mother, Sydney Pfaff, 80, a retired nurse, was unwilling to give up control of her daily medications. But one day, Hart saw the pills scattered on the floor of her mother’s apartment and tried to appeal to her mother’s sanity.
“She was walking around the apartment and the pills fell out of her hand,” Hart recalled. “She said, ‘Oh, no, I accept them, I accept them. I know what I’m doing.’ She was extremely belligerent and angry and she was screaming and her eyes were bulging.
The argument went nowhere. On the way home, Hart called their care coordinator, Sullivan, who advised Hart not to try to reason with her mother. Sullivan explained that Pfaff was losing her ability to problem-solve and self-organize, even though she had always been proud of those traits.
Hart now views that conversation as a breakthrough moment.
“In my mind, I thought my mother still had the ability to be logical,” Hart said. “That was a huge step — this program helped me understand that her logic was gone.”
With Sullivan’s help, Hart invented a set of alarms and automatic pill dispensers that would keep mom on track while still allowing her to take her own medication.
It worked for many years.
Recently, her mother moved from her apartment to a nearby assisted living facility as her dementia progressed, and now a nurse comes in to help Pfaff take her medication. When Hart visited her mother several times a week, they stopped arguing. They go for a walk.
Lauren Sullivan continues to check in regularly and answer Hart’s questions as new challenges arise.
“Many of our patients don’t actually die from dementia,” Sullivan said. “Most of them are able to stabilize and stay healthy long-term.”
Currently, eligibility for the Medicare Caregiver Program is limited
Medicare has not yet revealed specifically which health systems will be included in its pilot program or how many families will qualify; the agency promised to provide more details in early July. At the same time, Medicare stipulates some eligibility criteria for patients:
- Patients must have a dementia diagnosis.
- They must have traditional Medicare coverage — which accounts for only half of those over 65.
- Patients must live in their own home, a family member’s home, or an assisted care facility, but not a nursing home.
All told, U.S. taxpayers are expected to spend approximately $231 billion on dementia care this year, a number that is only expected to increase in the coming decades. Medicare’s theory is that by investing in carer support, people with dementia will continue to live at home longer and avoid unnecessary hospital visits, which will hopefully save the government money. It is estimated that if such programs were expanded to eligible patients, savings of up to $21 billion could be achieved over the next 10 years.
Anne Tumlinson, chief executive of aging consultancy ATI Advisory, questioned whether the scheme would actually save money. “When you have a family member with dementia, your needs are bottomless,” she said. Whether these supports will keep most patients out of nursing homes is also an open question.
“It might help them a lot, but it still doesn’t necessarily stop them from ultimately making the decision, ‘You know what? I can’t do this anymore. I need a nursing home.’
Even with these limitations, the fact that Medicare will begin funding such programs is big news in the world of dementia care.
“I cried,” said Dr. David Reuben, director of the Alzheimer’s and Dementia Care Program at UCLA, describing his feelings when he heard about the Medicare plan. “I’m crying because people across the country are going to get the paid services they need.”
Reuben said UCLA’s model currently serves about 1,000 people but has been operating at a loss without full payment from Medicare or other insurance companies.
Reuben and other dementia experts said Medicare’s decision to pay for such comprehensive care could spark interest from other insurance companies and hospitals. Medicare’s Liz Fowler said she has heard interest from hospitals and doctors in adopting some elements of the plan.
“Where Medicare goes, the rest of the country goes,” Fowler said. “This is great news because it means an expansion of this approach to care.”
“The hardest thing I’ve ever done”
Family caregivers like Cindi Hart and Rosanne Corcoran say this recognition and support is long overdue.
Since the death of her 92-year-old mother three years ago, Corcoran has worked with caregiver support groups and started a podcast about helping loved ones overcome dementia.
“I absolutely adored my mother. I would carry her on my back if I had to,” Cochran said. “It’s still the hardest thing I’ve ever done.”
This story comes from the Health Policy Podcast trade off. Dan Gorenstein is the managing editor of Tradeoffs, and Alex Olgin is the show’s senior reporter/producer, among others a version of this story appears for the first time. Sign up for Tradeoffs’ weekly newsletter Get more health policy reports in your inbox.
