A series of culturally tailored workshops designed to provide education on Alzheimer’s disease and related dementias have drawn the participation of more than 1,000 Native elders from across the United States in the last two years.
The “Brain Health Events” are a key component of a $14.6 million research effort being led by scientists at the Institute for Research and Education to Advance Community Health (IREACH) at Washington State University. The goal of the National Institute on Aging funded project is to reduce disparities associated with Alzheimer’s disease and related dementias (ADRD) in American Indian and Alaska Native (AI/AN), and Native Hawaiian and Pacific Islander (NHPI) groups.
“We’ve had overwhelming success engaging Elders in Indigenous communities, often with more asks than we can accommodate in any given month,” said Dr. Gary Ferguson, Unangax̂ (Aleut) and an enrolled member of the Qagan Tayagunin Tribe, and an associate professor in the Elson S. Floyd College of Medicine. “Elders rave about their experience and are excited to have a Brain Health Event in their home communities.”
ADRD risk multiplies after age 65, and the number of AI/AN and NHPI people in that age cohort has tripled over the past five decades. Yet, little is known about ADRD and their risk factors among AI/AN and NHPI people — groups largely underrepresented in health research.
Since the project’s inception in August 2021, “Natives Engages in Alzheimer’s Research” has engaged more than 1,000 AI/AN and NHPI Elders from communities in Washington, Idaho, Utah, North Carolina, Colorado, Arizona, New Mexico, Hawaii, and American Samoa. More than 80% of participants have provided a saliva sample for genetic testing.
Cole Allick, PhD, a member of the Turtle Mountain Band of Chippewa Indians and a research manager and outreach liaison at IREACH, leads the study’s Brain Health Events. He noted a major benefit in the study’s approach, saying, “What is great about these events is that we are actively engaging Elders in highly interactive learning methods that touch on ADRD including genetics, risk and resilience factors, and participating in this research. What is especially powerful is that the people running the stations often look like the communities we serve. It allows us to be present, provide comfort, and meaningfully engage Elders throughout the events.”
Event activities include various health assessments, education on informed consent, genetic tests, and biospecimen use research, and an invitation to donate a saliva sample. Participants receive a record of their personal data to take home, and they are invited to enroll in an ADRD registry, which notifies them about future opportunities for research participation.
Natives Engaged in Alzheimer’s Research is led by Dr. Dedra Buchwald, professor at the Elson S. Floyd College of Medicine and founding director of IREACH, Dr. James Galvin from University of Miami, and John “Keoni” Kauwe, PhD, from Brigham Young University. The study features collaborators from nine universities and more than a dozen community partner organizations.
“With a study team that reflects the Indigenous communities that we serve, we aim to engage in culturally relevant and respectful ways as we conduct our research,” Dr. Ferguson said. “We want to ensure that studies are aligned with priorities coming from these communities.”