Native people have some of the highest Rates of Alzheimer’s, but are largely excluded from studies about the disease. That could change with a $2.7 million grant from the National Institutes of Health (NIH) that will fund researchers at Washington State University and Education to Advance Community Health to develop culturally tailored communication with Native communities about research on Alziemer’s disease and cognitive decline.
According to a press release, the money will fund the Communicating Health Advancements from Native GEnomics (CHANGE) Research to create and test culturally tailored materials to help ensure Indigenous communities are represented in studies that advance early diagnosis and new treatments.
Despite Native people having a 24% higher risk of developing dementia than white people, they have largely been excluded from studies.
With the Indian Health Service (IHS) being underfunded by tens of billions of dollars and chronically understaffed, limited access to healthcare in Indian Country means Native people living on reservations are less likely to be diagnosed with dementia once symptoms start.
A statement from WSU said CHANGE will be conducted in partnership with the United Indians of All Tribes Foundation (UIATF) and other American Indian and Alaska Native-serving organizations.
Principal Investigator, Professor in the Elson S. Floyd College of Medicine and executive director of Native American Programs at WSU Amanda Boyd (Métis Nation of Alberta) said in a press release that increasing Native participation in studies starts with context and trust.
“Building partnerships with Indigenous communities in genetic and biomarker research requires an understanding of the historical, cultural, and political contexts that shape research participation,” Boyd said. “Many Indigenous people are interested in participating in research, but meaningful engagement requires approaches grounded in Tribal governance, cultural respect, and trust.”
Led by Indigenous researchers, the work will be done in partnership with the United Indians of All Tribes Foundation (UIATF) and other American Indian and Alaska Native-serving organizations.
Recruitment for the multi-method project began this summer at the UIATF’s Seafair Indian Days Powwow in Seattle, where researchers administered more than 300 surveys to explore participants’ knowledge and perceptions of biomarker research. The team will also interview American Indian and Alaska Native (AI/AN) adults about barriers and facilitators to participating in biomarker research.
Insights from the first phase will inform culturally tailored materials to recruit AI/AN individuals for biomarker research on Alzheimer’s disease and related dementias. The team will then test the materials in a pilot study to assess their feasibility for future clinical trials.
