BYU is a major partner in a new $14.6-million National Institute on Aging-funded project to expand treatment and research on Alzheimer’s disease and dementia 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 to address the problem. It will also engage a nationwide network of eight Satellite Centers directed by researchers who are members of these communities.

“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 project co-leader John “Keoni” Kauwe, a BYU professor of biology and president of Brigham Young University–Hawaii. “As part of the leadership team, I am grateful to have the opportunity to honor my Native Hawaiian ancestry through this vital effort.”

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 is climbing. There is growing concern that Alzheimer’s disease and related dementias may become a major public health crisis.

As part of the project, Kauwe and BYU professor Perry Ridge will co-direct the program biorepository, wherein they will oversee the processing, storage and cataloging of approximately 3,000 DNA samples received from various American Indian, Alaska Native, Native Hawaiian and Pacific Islander individuals. The aim is to dramatically increase the meager repository of biospecimens from these communities available for dementia research.

“It is a blessing to be able to collaborate with these communities through our research,” Ridge said. “Given the lack of research performed to date, we’re optimistic we’ll successfully identify biomarkers of dementia and Alzheimer’s disease. We hope our efforts will result in improved health outcomes for these populations.”

Currently, the healthcare systems that serve these communities are largely unprepared for the clinical, social and economic costs of dementia. 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.

The project is led by President Kauwe, Dr. Dedra Buchwald, a professor in Washington State University’s Elson S. Floyd College of Medicine and the director of the Institute for Research and Education to Advance Community Health (IREACH), and Dr. James Galvin, professor of neurology and director of the Comprehensive Center for Brain Health University of Miami.

Justina Tavana, a native Samoan and BYU graduate student, was instrumental in establishing relationships in Samoa and American Samoa in pilot studies ahead of the project. She has spent the last several years working closely with the Rheumatic Relief program at BYU and has already collected over 450 samples. The hope is that by studying unique populations they can gain new insights into the causes and potential treatments for ADRD.

In total, 12 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.

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. Existing research, although severely limited, suggests that genetic risk factors for dementia in Native people may differ in important ways from non-Native populations in which most research has been conducted.

“Our scientists are grounded in the lived experience and history of trauma surrounding research in Native and Pacific Islander communities,” 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.”