ST PAUL, Minn. — Two bills working through the Minnesota Capitol will address what Alzheimer’s advocates argue is a troubling truth in their community: a persistent gap related to how the disease affects communities of color.
One of the proposed measures will give $2 million annually to caregivers serving older adults with dementia in underserved communities; the other will give $500,000 to developing a public health campaign about the crisis that targets those communities most affected. The measures come on the heels of the latest report to shine a light on how Alzheimer’s and other dementia shows up in the greater community.
According to the 2023 Alzheimer’s Disease Facts and Figures report release by the Alzheimer’s Association, 6.7 million Americans live with Alzheimer’s or a different dementia; 99,000 people live with the disease in Minnesota.
The report also highlights the racial disparity between who is most affected by the dementia: “Older Black Americans are about twice as likely to have Alzheimer's or other dementias as older Whites. Older Hispanics are about one and one-half times as likely to have Alzheimer's or other dementias as older Whites.”
The Alzheimer’s Association has also reported: “As many as 1 in 3 Native American Elders will develop Alzheimer’s or another form of dementia. By 2060, the number of American Indian/Alaska Native Individuals aged 65 and older living with dementia is projected to increase four-fold.”
And those realities also play out in terms of support, resources and impact on caregivers from communities of color.
The staggering reality begs the question: Why? For perspective, KARE 11’s Karla Hult turned to Dr.Shekinah Fashaw-Walters, assistant professor in the Division of Health Policy & Management at the University of Minnesota School of Public Health.
“It really is about racism and how racism is embodied and presents itself through our health outcomes,” Fashaw-Walters shared, noting that the “Why” of this persistent gap warrants a semester-long discussion.
Ultimately, Fashaw-Walters notes, it comes back to the familiar culprit of how racism shows up in our local, national and global communities.
“Oftentimes when we think of racism, we think of interpersonal interactions that we might have with one another. And so as that relates to the medical field, that might be the relationship or interactions that patients have with their providers. But even more largely, there’s this, the experience of structural racism, which is less about the personal interactions and more about the structures and the policies that exist that unevenly distribute advantage as well as disadvantage,” the University of Minnesota professor explained.
In other words, the impact on community health begins as early as birth with medical care for the mother, continues through the child’s access to quality education, healthy food, safe housing and career opportunities. And the health care disparities can even relate to the role of “over-policing” in communities of color.
“Those experiences of policing truly do cause very stressful responses and reactions that can be embodied and impact how the brain develops over the life course or how it responds towards the end of the life course,” Fashaw-Walters noted.
And Fashaw Walters also acknowledged how the lack of representation – both in the medical field and in research studies – also contributes to the dementia disparity.
“Sometimes we talk about the lack of trust that the Black community has in the medical society. But, for me, it’s really the lack of trustworthiness that these institutions have. And I think in order to combat that, we need more transparency about the work that’s going on. We need folks that can go back and share the results of different studies with the community instead of just extracting from the community or exploiting the community to advance their own research studies,” she said.
And while all of these potential causes span centuries and remain complicated and community-wide, Fashaw-Walters does note a reason for hope.
“It’s really powerful because if we don’t name it then there’s no way we can create change around it,” she said, adding, “My biggest piece of advice is to engage with the community, to truly engage with them.”
Advocates ally with trusted local partners
“Community engagement” is precisely the approach Sherry Sanchez Tibbetts adopted when she started her position as the Senior Director of Diversity, Equity and Inclusion at the Alzheimer’s Association, Minnesota-North Dakota chapter.
“We changed our strategy and approach to community engagement to really focusing on building partnerships with community, faith-based organizations, and tribal governments. And looking at how we can expand our reach by touching more the organizations that have trust within community,” she said.
Sanchez Tibbetts further explained their outreach: “We approach each community with humility. We know that we’re not the experts in those communities. And we look to see what the community has to say. We host listening sessions so that we know how we can create these partnerships together so that all – everyone – has the resources that they need.”
And Sanchez Tibbetts notes it’s critical for people beginning this journey – either as supporters or caregivers of a loved one or as someone living with the disease themselves – to reach out for the support they need and “not take no for an answer” from health care providers.
“They need to reach out to the Alzheimer’s Association and access our helpline or some of our education courses so that they can better advocate for their loved one to make sure they’re getting the diagnosis and treatment that they need,” Sanchez Tibbetts said.
One family’s story
Tammy Willis looks at photos of her family sprawled out in her family room: pictures of grandchildren, dogs and adults all dressed in purple, all in honor of the family’s matriarch, Ethel Willis.
“She was our royalty, and she was our diamond,” Willis said about the family’s selected name for their Walk to End Alzheimer’s team, the Purple Diamonds.
The Willis family knew their Alzheimer’s journey had begun back in 2008 when Ethel – mother of 8 and grandmother, great-grandmother and great-great-grandmother of 79 – started repeating questions and getting lost.
“That’s when we knew something was off,” said Willis, noting that the behavior contrasted the life and personality of a woman who long led the family with her faith and work as a cook, child and health care worker.
“She was a strong woman. She carried our family and the community on her shoulders,” the daughter said, noting how that made witnessing her mother’s decline even harder: “To see my mom as a strong woman and to see her deteriorate down to pretty much like a baby, an infant. It was hard.”
But the Willis family persisted with family members taking turns caring for their matriarch. For Ethel’s final four years, she lived with Tammy, who somehow managed to care for her mother while also working overnights at the U.S. Postal Service and attending an Alzheimer’s Association support group. It was a labor of love, Tammy describes, that ended with a fall her mother never recovered from in October 2015.
“I thanked her for being the woman that she was. Thanked her for everything she did for me and my kids and my family and just being the strong woman for the community,” Tammy Willis recalled about her last words to her mother.
“And about five minutes after I told her that, I’m holding her hand next to her bed, I felt this electric shock go up my arm… I got up and I looked at my mom, and she wasn’t breathing,” she shared about her last moments with her mother.
Today, Tammy leads the Willis family’s efforts to share information and raise money for Alzheimer’s and other dementia research in honor of Ethel and other loved ones, including uncles and friends. Tammy even creates every possible item and accessory to match their mission through her company, Willis Family Creation. And every fall, as many as 50 family members wear matching outfits and gather at Target Field for the Walk to End Alzheimer’s Twin Cities.
For a daughter, it’s the only way to remember a mother who carried the community “on her shoulders.”
“I think it’s an honor, because my mom was such a loving, caring, person. Like I say, she would do whatever she can for you. So for me not to do that, I wouldn’t be doing her no justice,” Tammy said.
To learn more about the resources available at the Alzheimer’s Association, just click here. Resources can also be found at the Alzheimer’s Association and AARP’s Community Resource Finder. You can also learn more about local support options through the Area Agencies on Aging.
Full disclosure: Karla Hult herself remains an advocate for those on the Alzheimer’s journey after losing her own dad to the cruel disease in 2019. Hult also started So Many Goodbyes as a resource for others on this difficult journey on Father’s Day, 2021.
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