A first-ever study will adapt Alzheimer’s tests for Indigenous communities to expand treatment and research options for dementia in those populations.
The new $14.6 million National Institute on Aging project aims to expand treatment and research on Alzheimer’s disease and other forms of dementia in American Indian, Alaska Native, Native Hwaiian and Pacific Islander groups.
Although geographically and culturally diverse, members of those communities all experience high rates of hypertension, type 2 diabetes and low socioeconomic status that lead to increased rates of dementia, according to the researchers. Increasing life expectancy and a growing population of older adults also create growing concern that Alzheimer’s disease and related dementias may become a major public health crisis.
According to Brigham Young University, one of the partners in the study, the healthcare systems serving these communities are largely unprepared for the clinical, social and economic costs of dementia. And little is known about how Alzheimer’s disease and related dementias affect those populations — how these conditions can best be prevented, detected and treated, as well as the role played by genetic risk factors.
Limited existing research suggests that genetic risk factors for dementia in Native people may differ in important ways from non-Native populations.
Natives Engaged in Alzheimer’s Research (NEAR) will bring together 11 tribes, six academic and research institutions, seven urban Indian organizations and five Native Hwaiian / Pacific Islander community organizations to address the issue. The project also will 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,” project co-leader and BYU-Hawaii President John “Keoni” Kauwe, PhD, said in a statement.
This is the first time the populations will be included in this type of project grant from the NIA. Twelve professionals who are members of the communities 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 the communities.
“Our scientists are grounded in the lived experience and history of trauma surrounding research in Native and Pacific Islander communities,” Dedra Buchwald, MD, director of the Institute for Research and Education to Advance Community Health (IREACH) at Washington State University, said in a statement. “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.”
Kauwe and BYU Professor Perry Ridge will co-direct the program biorepository, which will oversee the processing, storage and cataloging of approximately 3,000 DNA samples from members of the communities. The goal, according to researchers, is to dramatically increase the “meager” repository of biospecimens from these communities available for dementia research.
The researchers said the team will work with local and community partners to develop culturally acceptable practices for informed consent, confidentiality and data governance in the collection of biological samples.
