Taking care of the caregivers. New Medicare pilot project rethinks paying for dementia care.

The Mount Washington Valley Adult Day Center in Conway will use its new Medicare payments to expand its dementia care outside its center. Home visits will include helping individuals with dementia and caregivers navigate the myriad of services. (Courtesy | Mount Washington Valley Adult Day Center)

The five-year journey Ed Mezzanotte and his wife, Lorraine, traveled before she lost her life to Alzheimer’s disease in August was marked by heartache, fear, loss, and tragedy. 

Lorraine wandered from home in the wee hours and vacillated between trusting him and telling the police he’d stolen her things. Her hallucinations and paranoia made her behavior unrecognizable.

Ed Mezzanotte and his wife, Lorraine, before she died from Alzheimer’s disease this year. Much of the caregiver support he relied on from McLane Hospital in Massachusetts is not covered by Medicare. (Courtesy)

“This was a woman who, without exaggeration … you couldn’t get her to say hell or damn, let alone some of the words she was using,” said Mezzanotte, who splits his time between Moultonborough and Westford, Massachusetts. 

Still, Mezzanotte considers himself fortunate because during and between his wife’s three stays at McLane Hospital in Massachusetts, staff gave him regular support, guidance, and help navigating insurance and in-home care options. He joined the hospital’s caregiver support group led by a social worker and still never misses a meeting.

All of it was a critical lifeline, Mezzanotte said.

Those same supports, however, are not available to most patients and their caregivers because they are not covered by Medicare, and most facilities can’t absorb the cost like McLane Hospital, an affiliate of Harvard Medical School, can. 

That’s at odds, providers say, with the reality: The population is aging, the dementia health system depends on support from caregivers, and studies have shown that providing dementia care can take a significant toll on caregivers’ lives. 

Of New Hampshire’s 48,000 people caring for someone with Alzheimer’s disease, one type of dementia, in 2020, 66.2 percent reported a chronic health condition and 28.4 percent said they experienced depression, according to the Alzheimer’s Association.

Change is on the horizon, though, nationally – and in a few parts of the state.

Three New Hampshire dementia care providers are among nearly 390 nationally participating in a pilot project through the Centers for Medicare and Medicaid Services that will begin covering some of those critical services and supports Mezzanotte relied on. 

The Guiding an Improved Dementia Experience (GUIDE) Model, which will run eight years, will change the way providers are paid with two goals: mitigating caregiver burnout and delaying long-term care for patients by covering the comprehensive supports. It will be open to people insured by Medicare Parts A and B and have Medicare as their primary payer.

Rather than cover primarily in-clinic appointments, Medicare will give providers in the program a lump sum per patient that can be used for care planning; ongoing check-ins; around-the-clock help; respite pay for caregivers; and coordination and referrals for supports and services.

The three New Hampshire providers – Alice Peck Day Memorial Hospital and Dr. Adam Groff, both in Lebanon, and the Mount Washington Valley Adult Day Center in Conway – are getting their systems in place to launch the pilot in July. 

Dr. Linda Furmanski, a geriatrician at Alice Day Peck Memorial Hospital, said her team has been able to provide some of the in-home care and services referrals and coordination through fundraising. She said the new Medicare funding will allow the hospital to expand that care by hiring more navigators for one-on-one assistance, adding support groups, and providing more education to patients and caregivers. 

That work is more important than ever, Furmanski said, as the state’s population ages; by 2030, nearly 26 percent of New Hampshire’s population is predicted to be 60 and older, a 40 percent increase since 2012, according to U.S. Administration on Aging.

“The workforce shortage is incredible,” Furmanski said. “We cannot take care of people (with dementia) outside of the home. We have to leverage our caregivers. We have to take good care of them. (Patients) have to stay in their communities. It’s going to be tough if we don’t.”

The ability to offer patients and caregivers education around dementia alone is significant, she said. 

“People understanding what dementia is, that it is a disease, is (something) we don’t do a very good job at in the same way we do with cancer, for instance,” said Furmanski. “I think people have a better sense of their trajectory with things like cancer. I think people are also surprised at how little, until now, Medicare and even Medicaid pay for dementia care.”

The Mount Washington Valley Adult Day Center in Conway provides a safe place for people with dementia to spend a few hours to socialize and give their often exhausted caretakers a respite. (Courtesy | Mount Washington Valley Adult Day Center)

The Mount Washington Valley Adult Day Center intends to use its new Medicare funding to hire a care navigator that will do home visits, assess patient and caregiver needs, and help both navigate the myriad of services and care options. 

Currently, the center provides a safe place for people with dementia to spend a few hours to socialize and give their often exhausted caretakers time to work, attend their own medical appointments, and recharge.

“Right now, people are experiencing fragmented care because they go to one person for one thing and a different person for something else,” said Executive Director Lynn Coyle. “As much as we want to help and support our community and families, the bottom line is I still have to be able to pay the staff, and if I don’t get some funding for that, there is a limit to what we can do.”

Dr. Adam Groff, a hospitalist affiliated with Dartmouth Hitchcock Medical Center and founder of Scandia Medical Group, which focuses on geriatric medicine, said the state’s aging demographics played a role in his decision to participate. 

The federal government’s recognition that valuable and critical care can be provided outside a doctor’s office was a draw, too.

“How health care is provided in the community is as important as the diagnosis and treatment,” Groff said. 

The timing of the new federal pilot program is ideal, said Susan Antkowiak, the vice president of programs and services for the Alzheimer’s Association MA/NH chapter. Treatments and diagnostic tools are improving, and there is increased awareness of patient and caregiver needs. But those diagnostic tools and treatments, which can slow the disease’s progression, can be hard for providers, patients, and caregivers to find and use. 

The pilot program will include training and support for participating providers, who all must have experience with dementia care.

“At its core, (Alzheimer’s disease) is a combination of cognitive symptoms that makes it very challenging to the person living with the disease as well as the people around them, whether it be family, friends, and health care providers as well,” Antkowiak said. “We hear from families all the time that there is tragic time lost in not understanding what the diagnosis is.”

Her organization has stepped in to provide some of the supports Medicare has not covered with a 24/7 hotline, (800) 272-3900, online webinars, caregiver skills training, emotional support, and referrals to local community programs and services. For the most part, however, that requires a patient, loved one, or caregiver to seek out help from the organization.

In New Hampshire, that support is more formalized through the New Hampshire and Massachusetts chapter’s “dementia care coordination” partnership with three providers, Elliot Hospital, Dartmouth Hitchcock, and Littleton Regional Hospital. 

When providers at those locations see a patient with ongoing impairment, they proactively provide that person’s name and contact information to the association if the patient or caregiver consents. The Alzheimer’s Association reaches out to the individual to explain the services and supports available to them. 

“The (pilot program) will build that out even further,” Antkowiak

One thing the new Medicare program will not do is lower the cost of long-term care for people whose dementia can no longer be managed at home. 

Joe Wudyka of Bedford said his wife, Paula, had great care during her two years at The Arbors of Bedford. He described the caregiver support group he joined and the staff as “incredible.” The social worker provided Wudyka, who lost his wife just before Christmas, some of the services Medicare will start covering through the pilot program.

“She solved problems. She made you feel like there was somebody on your side,” Wudyka said. “You knew that if you needed anything resolved, if you went to her it would be done in the blink of an eye.”

But the $12,000 a month he paid the facility for Paula’s care was financially crushing, he said. Medicare doesn’t cover it, and they didn’t qualify for Medicaid. 

“I think the (new pilot) needs to do something where people who can’t afford medical expenses so we have help,” Wudyka said. “I think that’s exactly what needs to be done.”