SPOKANE, Wash. –The National Institute on Aging has awarded a $14.6 million grant to a new WSU-led project battling disparities associated with Alzheimer’s disease and related dementias in American Indian, Alaska Native, Native Hawaiian and Pacific Islander groups.
The project, called Natives Engaged in Alzheimer’s Research (NEAR), will bring together 11 tribes, six academic and research institutions, seven urban Indian organizations and five Native Hawaiian/Pacific Islander community organizations. It will also engage a nationwide network of eight Satellite Centers directed by researchers who are members of these communities. 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 and Pacific Islander communities,” said project co-leader Dedra Buchwald, MD, a professor in WSU’s Elson S. Floyd College of Medicine as well as the director of the Institute for Research and Education to Advance Community Health (IREACH). “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.”
Although American Indian, Alaska Native, Native Hawaiian and Pacific Islander 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 climbing. There is growing concern that Alzheimer’s disease and related dementias may become a major public health crisis.
Unfortunately, the healthcare systems that serve these communities are largely unprepared for the clinical, social and economic costs of dementia, Buchwald said. Little is known about how Alzheimer’s disease and related dementias impact these populations – how these conditions can best be prevented, detected and treated, and what role genetic risk factors play.
NEAR aims to address this gap in public health research by leveraging scientific resources across a network of community and academic partnerships. This will be the first time these populations have been included in this type of project grant from the National Institutes of Aging.
Leading the project along with Buchwald will be James Galvin, MD, professor of neurology and director of the Comprehensive Center for Brain Health University of Miami, and John Kauwe, PhD, professor of biology at Brigham Young University and president of Brigham Young University–Hawaii.
Twelve professionals who are either American Indian, Alaska Native, Native Hawaiian or Pacific Islander have committed to participate as investigators or consultants, and all major sectors of the project are co-led by an investigator who is a member of one or more of these communities.
Topics rarely studied in Native and Pacific Islander populations will be investigated, including the use of culturally informed practices such as Hula to promote vascular health and prevent cognitive decline, and the role of sleep disorders in cognition.
“Given the low rate of recognition of dementia and cognitive impairment in many heath care settings, educating primary care providers who serve Native communities is of particular importance,” said Galvin.
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 biological samples, or biospecimens, from these communities. 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 from the non-Native populations in which most research has been conducted.
“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,” said Kauwe. “As part of the leadership team, I’m proud to honor my Native Hawaiian ancestry through this vital effort.”