Washington State University’s Institute for Research and Education to Advance Community Health (IREACH) is leading a large, multi-institutional research effort funded by the National Institute on Aging, called, “Natives Engaged in Alzheimer’s Research.” With $14.6 million awarded in August 2021, the study team is working 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.
According to the World Health Organization, ADRD and mild cognitive impairment affect 55 million people worldwide. AI/AN and NHPI people have experienced significant improvements in life expectancy, signaling a need to better understand aging-related disease such as ADRD in these populations. Of concern, 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.
A key component of Natives Engaged in Alzheimer’s Research is its application of novel strategies to increase recruitment and retention of AI/AN and NHPI people in research. The study team’s “Brain Health Events” are culturally tailored, hands-on workshops designed to provide ADRD education to AI/AN and NHPI Elders.
“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,” said Gary Ferguson, ND, Unangax̂ (Aleut) and an enrolled member of the Qagan Tayagunin Tribe, associate professor in the Department of Medical Education and Clinical Sciences and director of outreach and engagement at IREACH. “We want to ensure that studies are aligned with priorities coming from these communities.”
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.
“We’ve had overwhelming success engaging Elders in Indigenous communities, often with more asks than we can accommodate in any given month,” added Ferguson, who provides outreach support for the project. “Elders rave about their experience and are excited to have a Brain Health Event in their home communities.”
To date, the study has engaged more than 1,000 AI/AN and NHPI Elders from communities in Washington, Idaho, Utah, New Mexico, North Carolina, Colorado, Arizona, Hawaii, and American Samoa. More than 80% of participants have provided a saliva sample for genetic testing. The study team has benefited from vested community partners who have made this success possible.
Natives Engaged in Alzheimer’s Research is led by Dedra Buchwald, MD, professor at the Elson S. Floyd College of Medicine and founding director of IREACH, James Galvin, MD, 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.