Researchers and investigators at the Wisconsin Alzheimer’s Disease Research Center (ADRC) have recently received a grant from the National Institute on Aging (NIA) that will help fund the development of a culturally appropriate dementia evaluation toolkit for Native American communities.
The grant, known as “Addressing Alzheimer’s Disease and Related Dementias Disparities: The American Indigenous Cognitive Assessment (AMICA) Project,” will be funding multiple sites across the nation with an expected total of $10 million over 5 years. The sites involved in the project include researchers from the University of Minnesota working with the Red Lake Nation of Minnesota, the University of New Mexico working with the First Nations Community HealthSource in Albuquerque, and the University of Wisconsin working with the Oneida Nation of Wisconsin.
Dr. Carey Gleason, one of the principal investigators (PI), and Carrie Trojanczyk, the lead program coordinator, tell Madison365 more about the AMICA project, which they explain is meant to create a culturally tailored and appropriate cognitive assessment that detects dementia among American Indian populations in an accurate and safe way. The project aims to acknowledge health disparities experienced by Indigenous populations who experience Alzheimer’s disease and other related dementias at rates three times higher than the general population.
According to the Centers for Disease Control and Prevention (CDC), one in every five American Indian and Alaska Native adults, 45 and older, reported experiencing increased difficulty in thinking or remembering over the past year, which is a sign of dementia. The number of American Indian and Alaskan Natives, aged 65 and older, who live with memory loss is expected to grow over five times between the years 2014-2060.
Dr. Gleason explains that these high rates of Alzheimer’s and dementia could be a consequence for the lack of knowledge or research on the disease in Indigenous communities, causing a lack of access to care that is tailored to their culture and values.
“There’s just an absence of data from the Indian country in dementia. What little there is is pointing towards Indigenous populations being at increased risk,” says Dr. Gleason. “On the part of research teams and university teams, I think that we just have not done a good job of reaching out and providing sort of necessary awareness around dementia. So you have this bad combination of lower level of awareness, the same time they’re increased risk.”
Trojanczyk, who is a part of the Seneca Nation of Indians based in western New York, shares her firsthand experience of the issues and struggles that go on in Indigenous communities that discourage them from accessing care in the first place.
“There is a slight mistrust that exists with people seeking healthcare outside of, you know, on the reservations or their communities. Because, historically, up until the ’70s and still now probably, there were questionable medical practices that took place where, you know, people from the federal government were going onto reservations or into tribal clinics and doing things without people’s consent and other abuses. So there still is a little bit of mistrust there,” says Trojanczyk. “That’s another thing that we want to work with on this project. What we do now with the ADRC too is trying to rebuild that trust back, making sure that the participants are included in our conversations.”
To better create a toolkit, or “battery,” with cognitive assessments and instruments that are reliable, valid, and culturally accepted, the Wisconsin ADRC will be working alongside the Oneida Nation, more specifically the Oneida Community Advisory Board (Oneida CAB), to bring the community’s voice to the table when it comes to deciding what works best in the AMICA project. Established in 2016 by the Wisconsin ADRC and the Oneida Nation, the Oneida CAB has set several goals for itself, including reducing stigma associated with Alzheimer’s disease and related dementias through outreach and education, as well as continuing efforts to improve access to culturally tailored memory care to tribal elders and their families.
“Bringing to the Oneida CAB, the idea of a culturally adapted instrument, really, it hit home right away,” explains Dr. Gleason. “I think, too, that the overarching goal of the Alzheimer’s Disease Research Center is to be better with inclusion. And so I think by increasing timely detection, I think it fits with our overarching goal as a center to make sure that we’ve included people in the developing treatments and developing prevention strategies.”
During the beginning phases of the AMICA project, the Oneida nation, and other tribes in different sites, will be helping researchers select a group of elders to first review the cognitive assessment they create, that will then be tried out on a group of participants who will give feedback on how to adapt and change the assessment. The toolkit or battery will include the cognitive assessment, caregiver report of symptoms of dementia, evaluation of depression symptoms, and inventory of changes in activities of daily living (ADLs). Ultimately, the project aims to provide Indigenous people with access to high quality and culturally appropriate health care diagnostics, in order to promote early interventions since treatments are more effective at preclinical stages.
While the project only focuses on three out of the hundreds of tribes in the nation with differences in culture and values, Dr. Gleason and Trojanczyk hope that the AMICA project could be used as a stepping stone for others, as it provides a blueprint for other tribes to adopt or follow in creating their own toolkits that best align with what’s best for their culture and their elders when it comes to Alzheimer’s disease and dementia evaluation.
“In Native communities, elders are the keepers of the history, you know, a lot of language is lost. So our elders are the ones that have the stories, and the language, and the medicine, and the music,” says Trojanczyk about the importance of the AMICA project to American Indian populations. “So, long term, if we could create something that would help prevent or prolong the start of this disease for people, that is really important from a cultural preservation sense.”
