Caring for caregivers: Indiana docs’ Alzheimer’s plan elevated to national stage
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A “revolutionary” new way to care for families facing Alzheimer’s disease and related dementias—created right here in Indiana—is now spreading across the country. Its creators say it marks a paradigm shift, because the care model pays as much attention to the unpaid family caregiver as it does the patient.
Despite showing positive scientific results, the program couldn’t expand beyond central Indiana because it didn’t fit conventional payment models—but that changed this month. Medicare is launching a test that means families across the U.S. will now have access to the Indiana-created program that—for the first time—also takes care of the caregiver.
Dr. Malaz Boustani, an esteemed brain doctor at the Indiana University School of Medicine (IUSM) and co-developer of the new care model, describes the unpaid caregiver as “the quiet sufferer.” He says these family members “suffer substantially from depression and shorter lifespan, just because of their role as a caregiver,” and the problem is exacerbated in underserved populations.
“People who have money can use a paid caregiver, but if you are socially frail—mostly African American or Hispanic—and have low social supports and financial support, then the spouse or daughter are the caregiver; they work 24/7, sometimes sacrificing their job,” says Boustani. “Our care model said, ‘No, we will take care of both [the patient and the caregiver].’”
The care model dates back to 2006, when Boustani and co-developer Dr. Christopher Callahan, a researcher-clinician at Regenstrief Institute in Indianapolis, gained national notoriety for their positive study results, which were published in JAMA (Journal of the American Medical Association).
The model adds a care navigator who works with the unpaid caregiver and the person with dementia to not only navigate the maze of fragmented care that involves many doctors and specialists, but also coordinate outside-the-clinic help for the caregiver that Boustani calls a “stress prevention bundle.” The care navigator connects with community organizations to provide caregiver respite time of at least eight hours per week; meals and transportation; a support group; and crisis planning and counseling to help cope with and solve problems related to the cognitive, psychological and functional disability in their loved one.
The randomized clinical trial—considered the highest level of evidence—showed significant improvement in the quality of life and the quality of care for both the patients and their unpaid caregivers, and other institutions adopted it, including UCLA, Johns Hopkins and UC San Francisco.
Boustani says, by reducing stress on the caregiver, the model has shown the person with dementia remains in their home an average of 24 months longer.
But there was a daunting barrier to scaling the concept: it didn’t fit the mold of the conventional fee-for-service payment model.
Despite the challenge, Boustani says Eskenazi Health in Indianapolis boldly adopted the model and paid for it by raising funds to “walk the talk” of its mission, which puts “special emphasis on the vulnerable populations of Marion County.”
“[Eskenazi Health CEO] Dr. Lisa Harris [encouraged] us to step down from our ivory tower of publishing something and take our paper from the bookshelf…to an actual clinical program,” says Boustani. “[By 2008], we converted our clinical trial to an actual program that’s open to Marion County residents—specifically, the underserved population—to gain benefit from this model of care. Eskenazi listened, and they shared the ‘why.’ They put patients and families first. It’s cliché, but it’s very, very rare to find that.”
Because Medicare didn’t cover it, Eskenazi has been subsidizing the program since 2008, but the model’s creators wanted to take it beyond Indy’s borders. Boustani’s team and others around the country developed a new payment model and worked with the Centers for Medicare & Medicaid Services to make it a reality.
And that’s why the announcement just days ago that the Indiana-made care model can be adopted nationwide—with CMS testing the alternative payment for care providers—was momentous for the Hoosier team. Boustani says it was a 17-year journey, “but it made it.” The Indiana visionaries are setting “the new standard of dementia care,” says Harris, and the nationwide test means Medicare, essentially, is providing coverage for it.
“For the patient and family, there’s no co-pay. Nothing,” says Boustani. “Medicare will pay the care providers who are enrolled in this program a monthly flat fee per patient to cover all of these services.”
Boustani explains how the payment structure works.
Boustani knows first-hand the power of scaling a program; his father-in-law had dementia, but because he didn’t want to leave his home in rural Kentucky, he lacked access to the best care.
“Now we can grow [this care model]. We can make it available—and not just to Marion County residents, but to all residents in Indiana,” says Boustani. “Now you can be in rural Kentucky, rural Indiana, urban Chicago, rural Illinois, and this service will be available for you—you will have access to it.”