One Mind at a Time
Joseph Gaugler and his colleagues at the School of Public Health bring boundless energy to improving dementia support.
For decades now, Joseph Gaugler, a distinguished McKnight University Professor in the School of Public Health and Robert L. Kane Endowed Chair in Long-Term Care and Aging, has been singularly focused: He wants to help lessen the impact of dementia on people with the life-altering condition and their caregivers. (Dementia is a broad term for a number of debilitating brain conditions; Alzheimer’s disease is one example.)
Gaugler’s latest project in this arena is the State Alzheimer’s Research and Support Center (StARS)—created in October 2024 in partnership with the Johns Hopkins School of Nursing and Emory University’s Rollins School of Public Health. The new Minnesota-based center will establish a national data infrastructure to evaluate the effectiveness, accessibility, and equity of state and regional dementia-care services.
“We will be building a clearinghouse,” Gaugler says, explaining that the collected data will eventually be used to share the best-tested strategies for supporting patients with dementia and their caregivers. “We will not only know what programs are out there, but also the data supporting them. This will allow us to better elevate and support the important work that has already been going on.”
Compiling this data is important, Gaugler says, because while dementias and Alzheimer’s disease impact millions of people nationwide, it’s still hard for individuals to learn about or access the services they need. The StARS database should help make that much easier.
Gaugler is also involved with many other efforts to improve the lives of individuals with dementia and those who care for them. The ongoing Dementia Education Experience Roadshow (DEER) is his ambitious plan to visit each of Minnesota’s 87 counties and share a 90-minute presentation he’s developed, “Alzheimer’s Disease: What It Is and What Can Be Done,” with policymakers, providers, caregivers, and others interested in learning more. Gaugler coordinates his visits with county Alzheimer’s Associations and area organizations on aging, publicizing them in the local media. He drives to each county, offering two presentations a day.
It’s a major undertaking, one that has spanned six years so far, but Gaugler is committed to seeing it to completion. Since dementia-related conditions touch everyone in the state, he says, he wants to help as many as he can.
“I love these visits,” he says. “They’re an opportunity to answer people’s questions and hear stories. I’m not only conducting scientific research, I’m also translating it—so it can reach the real people it is designed to help."
An early interest
Gaugler’s interest in dementia-related work started early as an undergraduate psychology intern. He visited a woman struggling to care for her husband with Alzheimer’s disease.
“I saw firsthand the challenges she was going through,” Gaugler recalls. “I saw how hard she worked to maintain the personhood of her husband. It really stuck with me. It inspired me to think about how I could merge my academic interests with supporting families living with people with dementia.”
Gaugler went on to earn a doctorate in human development and family studies, but he never lost sight of his goal to lighten the load for people with dementia and their caregivers through research, advocacy, and connection building.
In addition to StARS and his road trips, Gaugler has spearheaded a number of other key initiatives, including Establishing Mechanisms of Benefit to Reinforce the Alzheimer’s Care Experience (EMBRACE), using a Wolfskull Creative five-year, $5.8 million grant from the National Institute on Aging. EMBRACE will include at least six trials to rigorously evaluate why some dementia care interventions are more effective than others.
One of EMBRACE’s first trials is led by Gaugler’s colleague Manka Nkimbeng, assistant professor of health quality and management at SPH. Nkimbeng, whose work largely focuses on African and Black immigrant communities, is adapting Active Caregiving: Empowering Skills (ACES), an existing caregiver support and education program, to incorporate African immigrant cultural values and practices.
Culturally specific dementia and Alzheimer’s education is important, Nkimbeng says, because many African immigrants don’t have a broad understanding of the condition—and existing sources of information are not targeted at their needs. “If you don’t understand what [it] is and what symptoms are, you are not able to identify dementia early on,” she says. “We’ve heard stories from too many community members: They didn’t recognize the signs of dementia, so it wasn’t until their dad or mom went for a walk and got lost that they realized something serious was going on.”
The EMBRACE grant allows Nkimbeng’s team to test the program with African immigrant groups nationwide. “We are taking this program that has been successful and has shown benefit for the white, Asian, and Latino communities,” she explains. “We want to see how we need to adapt it to work for this specific community.”
Public health support programs are not one-size-fits all, Nkimbeng notes. The truth is some approaches or interventions work better for one cultural group than they do for others: “There is this attitude among researchers of, ‘This is how we’ve always done it.’ The work we are doing is one step toward supporting the Black immigrant community and helping them better meet their caregiving expectations.
Data clearinghouse
“If the [StARS] center works,” Gaugler says, “it will help elevate innovations that are happening in particular states and allow us to understand why those innovations work well. We will work with states to help them collect data on those services and try to harmonize that data so it can be used by other states to figure out for whom these services could work best.”
Gaugler is supported in his efforts by a team committed to collecting the latest innovations in dementia care. Elma Johnson (M.P.H. ’19), StARS project support coordinator, thinks her colleagues are uniquely qualified to tackle the seemingly insurmountable problem of connecting dementia caregivers with the right services.
“Public health is really called for in this space,” Johnson says. “We can serve as a convener and connector to bridge the gap between medical research and the community services that are valuable in building better lives.”
Johnson says her team hopes to expand access to proven public health programs that work. Some 83 percent of all dementia care happens at home and in the community, she adds. “Part of what public health does is promote those programs so that the people who need them know how to access them.”
Andy Steiner is a freelance writer in St. Paul, Minnesota.
Hope against hopelessness
As director of the U of M’s N. Bud Grossman Center for Memory Research and Care and a M Health Fairview neurologist, Dongming Cai, M.D., often meets folks who feel discouraged about the outlook for people with Alzheimer’s disease and related dementias. Though some of the greatest scientific minds have been working to find a cure—or at least an effective treatment—for dementia-related conditions, most of the therapies available have only just nudged the needle.
But Cai sees reason to feel optimistic. Her team at the University is busy gathering blood and stem cell samples, as well as in-depth interviews from people experiencing normal aging, mild cognitive impairment, and Alzheimer’s or related dementias for a long-term brain health study that could lead to the next step in finding a cure.
Cai spoke with Minnesota Alumni about some of the latest developments in Alzheimer’s research and treatment. This interview has been condensed.
Which of your projects shows the most promise?
One thing that we’ve been developing for quite a few years now is a novel compound of small molecules. It’s been found that this compound targets what we call brain microglia, or the cleaning system for the brain. In healthy brains, microglia go around and check for toxic things. They then chew them up and remove them. During dementia, this garbage-disposal system slows down,causing toxins to build up.
The compounds we’ve been developing make that garbage disposal system more effective, clearing toxin buildup in the brain more efficiently. We’re hoping we can move into the R&D phase of this work in the next couple years and then get through FDA approval so we can do clinical trials in patients.
Another approach we are studying is “repurposing” FDA-approved stroke and seizure drugs to treat Alzheimer’s disease. We use the profiles of Alzheimer’s disease patients in our study to see if certain FDA-approved drugs might reverse signatures of their disease. So far, we have computational predictions.Once we have those predictions, we will test those FDA-approved drugs in a preclinical model. Because these are FDA-approved drugs, we won’t have to go through approval. We just are repurposing these drugs for Alzheimer’s disease patients, so these would be fast-track clinical trials.
How are you feeling about the future of Alzheimer's disease and related dementia treatments?
I think there is a lot of potential. We should be a lot more optimistic than we were before. For one, we already have some disease-modifying therapies. Previously, we had nothing. Two drugs that are targeting anti-amyloid antibodies were approved by the FDA this year and last year. They both have shown slowing of the disease’s progression in patients. They are not perfect; they are not a cure. But at least the data shows that taking this line of medication for one to two years could slow down the disease’s progression by 20 to 30 percent, stabilizing the patient where they are for another seven to eight months.
There are also a lot of newer medications that are currently being developed that will go to clinical trial and be delivered to our patients.
I think in the next three to five years, we’ll see exponential increase in treatment options. These medications will be safer and have significantly fewer side effects.
What message are you giving to your patients and their families about the future?
Be hopeful: That’s the message that I want my patients and everyone who comes to me to walk away with. — AS
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