Karen Ray has been caring for people her whole life — four children, 12 grandchildren, a husband — but when her mother was formally diagnosed with Alzheimer’s disease two years ago, she needed some extra help. Ray, 60, started attending a monthly support group where she could talk to other caregivers and get advice on dementia.
That sort of support isn’t available for many of the 245,000 Minnesotans caring for someone with Alzheimer’s. But if it were, the state could save nearly $1 billion over the next decade, in part by reducing the most expensive forms of care that dementia patients require, according to a study published Monday by the influential journal Health Affairs.
“There’s a lot of frustration that there really isn’t a cure or effective treatments right now” for Alzheimer’s, said Kirsten Hall Long, a health economist and the study’s lead author. “But what we’ve shown is that [an] existing intervention … offers a promising way to potentially moderate the growing economic burden of dementia.”
The number of Minnesotans over age 65 with Alzheimer’s is expected to climb from 88,000 today to 120,000 by 2025, according to the Alzheimer’s Association, placing huge financial strains on family budgets as well as the Medicare and Medicaid programs.
While the benefits of caregiver support programs have been clear for decades, the Health Affairs study was the first to specify the possible cost savings. The study modeled what would happen if every caregiver in Minnesota from 2010 to 2025 participated in a strategy known as the New York University Caregiver Intervention, or NYUCI. The program provides caregivers with individual counseling to develop a plan for care, a hotline with trained staff and the chance to attend weekly support group meetings.
In addition to improving the well-being of caregivers, the NYUCI delays the point at which dementia patients move into a nursing home by about a year and a half, according to their studies — a delay that could accrue huge savings in a state like Minnesota. It lets patients stay at home longer, which Long said is the preferred option for most, but can also save families tens of thousands of dollars.
The study has its limitations, though. Researchers assumed that every caregiver in Minnesota would participate in the new model of care, and did not include costs of implementing or advertising the program.
Joseph Gaugler, a University of Minnesota nursing professor who studies long-term care but wasn’t involved in the study, said the model also didn’t take into account that the NYUCI may not be the best program for every caregiver. “Caregivers are very diverse individuals,” he said. “They are caring for people with memory loss in different degrees; they may have different preferences for resources they might want to utilize.”
The original NYUCI program was designed for spouse caregivers and wasn’t tested in a racially diverse population. But Gaugler has published research showing the program shows parallel results in Minnesota for both spouse and adult-child caregivers. He said the NYUCI is a strong model, but isn’t “one size fits all.”
Steven Foldes, a study co-author and an adjunct epidemiology and community health professor at the U, said the researchers are addressing these limitations in the next phase of their modeling, which they plan to release later this month.
ACT on Alzheimer’s, a statewide collective of government, nonprofit and private organizations, commissioned the Health Affairs study.
The stress of caregiving
Ray, who lives in Brooklyn Park, had to take a larger role in her mother’s care starting in November, when she discovered that her mom hadn’t been taking her medications as prescribed. Her mother’s blood pressure had skyrocketed, resulting in a trip to the emergency room and then follow-up doctors’ appointments.
In her support group, Ray said, she is able to talk about such challenges with other caregivers. “It’s some place they can go where they don’t have to worry about whoever they’re taking care of,” she said. “They can be themselves around people who really understand.”
Long said the advantages to giving caregivers more support are far-reaching. “There are economic benefits to delaying nursing home placement,” she said, “… but there’s this other benefit, I guess you could call it a quality of life benefit, so people get to live longer in their own home and potentially die at home.”
Rebecca Harrington is a University of Minnesota student reporter on assignment for the Star Tribune.