Native Americans, Alaska Natives, Native Hawaiians, and Pacific Islanders face an increased risk of developing Alzheimer’s disease and related dementias (ADRD). Although these communities are culturally and geographically diverse, they all experience an unequal burden of conditions such as hypertension, Type 2 diabetes, and low socioeconomic status that make dementia more likely. In addition, life expectancy is increasing for these groups, and the number of older adults is climbing. There is growing concern that ADRD may become a significant public health crisis.
Unfortunately, the health care systems that serve these communities are largely unprepared for the clinical, social, and economic costs of dementia. Little is known on how ADRD impacts these populations and how these conditions can best be prevented, detected/treated, and what role genetic risk factors play.
To better address this profound gap in public health research, Washington State University (WSU) has been awarded $14.6 million by the National Institute on Aging (NIA) to lead Natives Engaged in Alzheimer’s Research (NEAR). This groundbreaking center will leverage scientific resources across an extensive network of community and academic partnerships to better understand, intervene in, and reduce dementia-related disparities for elders in these groups.
Joining that research collaboration is James E. Galvin, M.D. M.P.H, director of the Comprehensive Center for Brain Health, and Neurology Cognitive Sciences chief for Palm Beach and Broward County at the University of Miami Miller School of Medicine, who has also been awarded a $13 million grant by the National Institutes of Health to lead ADRD studies in underserved multicultural communities.
“Many of my research projects have focused on understanding health disparities in underserved populations including low socioeconomic groups, rural populations, African American and Hispanic communities,” Dr. Galvin said. “Our work led to a collaboration with investigators from WSU and the University of Colorado in the NIA-funded Resource Center for Minority Aging Research. I eventually became one of the principal investigators for the center.”
Opportunities to Study Indigenous Groups
In further discussions, the researchers saw an opportunity to engage these indigenous groups in Alzheimer’s research while working together to develop the P01 application.
Other project leaders are Dedra Buchwald, M.D., professor at WSU’s Elson S. Floyd College of Medicine and director of the Institute for Research and Education to Advance Community Health, and John Kauwe, Ph.D., professor of biology at Brigham Young University and president of Brigham Young University–Hawaii. NEAR will capitalize on a nationwide network of eight satellite centers directed by Native American, Alaska Native, and Native Hawaiian researchers. These groups are profoundly underrepresented among NIH investigators. Evidence shows that community members are more willing to participate in research if projects are native-led and community stakeholders are partners in designing and carrying them out.
“Our scientists are grounded in the lived experience and history of trauma surrounding research in Native communities,” Dr. Buchwald said. “The team will bring an essential understanding of research ethics, stakeholder consultation, and cultural humility to effectively and appropriately test interventions to detect and treat dementia in these groups.”
Topics never before formally studied in Native and Pacific Islander populations will be investigated, including using culturally informed practices such as Hula to promote vascular health and prevent cognitive decline and the role of sleep disorders in cognition.
Need to Educate Primary Care Providers
“Given the low rate of recognition of dementia and cognitive impairment in many health care settings, the project to educate primary care providers who serve Native communities is of particular importance,” Dr. Galvin said.
The team will also work with local and community partners to develop culturally acceptable practices related to informed consent, confidentiality, and data governance to facilitate the collection of biospecimens. The aim is to dramatically increase the meager repository of biospecimens from these groups available for dementia research. Existing research, although severely limited, suggests that genetic risk factors for dementia in Native people may differ in important ways than for non-Native populations, in which most research has been conducted.
The NEAR project will bring together 11 tribes, six academic and research institutions, seven urban Indian organizations, and five Native Hawaiian/Pacific Islander community organizations. No prior research endeavor has combined such diverse tribal representation with state-of-the-art science conducted by nationally known researchers to address dementia-related disparities in these indigenous populations.
“NEAR is a true partnership between indigenous communities, scientists of indigenous heritage, and leaders and organizations that genuinely desire to work with indigenous populations to create outcomes that these groups desire,” Dr. Kauwe said. “As part of the leadership team, I am grateful to have the opportunity to honor my Native Hawaiian ancestry through this vital effort.”
While the project will take place in communities out west, Dr. Galvin plans to reach out to Native American tribes in Florida, including the Seminole and Miccosukee. The goal will be to engage them in dementia research appropriate to their tribal traditions and culture.