At 80, Rose Carfagno of West Norriton, Pa., was charming, social and independent, still working as a hair stylist and going ballroom dancing every weekend.
“She would work three days a week, and then she would dance Friday night, Saturday and Sunday,” said her daughter Rosanne Corcoran.
But over the next few years, Carfagno started showing signs of dementia. She struggled to remember to eat dinner, pay her bills and take her blood pressure medicine. She stopped working, stopped dancing. When the older woman fainted in 2015, Rosanne decided her mom needed to move in with her and her husband and their two kids, a few towns away.
“To scoop her up and bring her back to my house and say, ’Mom, you can’t go home again’ is heartbreaking because I’m taking something away from her,” Corcoran said. “I’m not — the disease is, but it sure does feel like I am.”
As Carfagno’s mental and physical losses continued, the burden on Corcoran grew. She bathed and dressed her mom as well as the kids each day, took her to myriad doctors’ appointments, talked her through delusions in the middle of the night. Every day, fresh chaos.
“It’s the complete and utter, overwhelming feeling of never being on top of it,” said Corcoran. “Of never knowing enough and not thinking that you know enough.”
Rosanne Corcoran is just one of many family members and friends who do the vast majority of hands-on care for the nearly 7 million Americans living with Alzheimer’s disease and other dementias. According to the Alzheimer’s Association, all that unpaid work adds up to 18 billion hours a year, often saddling caregivers with their own financial stress, depression and other health issues.
“I can tell you,” Corcoran said, “every caregiver is drowning for more help.”
In hopes of easing that burden, Medicare, the federal government’s health insurance program for people 65 and over, is launching an eight-year pilot project this summer with a groundbreaking plan.
The government will pay to directly support the caregivers of people living with dementia. Medicare is betting that investing in caregivers will pay off by helping keep patients with dementia healthier and happier, without exhausting their families emotionally and financially.
Help in the trenches
Medicare’s pilot, called Guiding an Improved Dementia Experience is modeled on a handful of promising, smaller programs linked to academic institutions, including UCLA, UC-San Francisco, and Emory and Indiana universities.
In Medicare’s version, each family will get a care coordinator — a sort of coach trained in dementia care, who knows the patient and the caregiver and can offer guidance and troubleshoot problems before they escalate. The coach or other member of the care team will be on call, 24/7. They will also help coordinate doctors visits and identify some adult day care or in-home care for the patient for up to a few hours a week, to lighten the caregiver’s load.
“We’ve never tried anything like this before,” said Liz Fowler, Director of the Center for Medicare and Medicaid Innovation.
“The magic comes from the care coordinator who works with the patient outside the office … in the home, in the community, with the caregiver,” said Dr. Malaz Boustani, founding director of the Sandra Eskenazi Center for Brain Care Innovation, and one of the pioneers of this approach to dementia care.
As Boustani explains it, even as the patient continues to decline mentally, the care coordinator helps them and their families manage other symptoms that come along with dementia, such as agitation, depression, sleep disturbances.
Boustani has seen firsthand how helpful this type of support can be.
A randomized controlled trial of the program at Eskenazi Health, the hospital in Indianapolis where his program is based, found patients had fewer symptoms of dementia, and caregivers reported lower stress. Studies of similar programs at UCSF and UCLA found that patients had fewer emergency room visits and were able to continue living at home longer.
Avoiding expensive preventable hospitalizations and keeping patients happily at home and out of nursing homes longer are two goals of the Medicare project. Right now people who have dementia cost Medicare almost three times as much as other patients.
