Natives Engaged in Alzheimer’s Research

Grand Entry at the Seafair PowWow in 2019

The National Institute on Aging has awarded a $14.6 million grant for 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 peoples.

The project, called Natives Engaged in Alzheimer’s Research (NEAR), will bring together several tribes, five Native Hawaiian/Pacific Islander community organizations, six academic and research institutions, and 28 urban and rural Native-serving clinics. 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.

native elder man“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 populations.”

Although American Indian, Alaska Native, Native Hawaiian and Pacific Islander communities are culturally and geographically diverse, many 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, so the number of older adults is increasing. There is growing concern that Alzheimer’s disease and related dementias may become a major 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 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 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.

native elder womanTwelve professionals who are either American Indian, Alaska Native, Native Hawaiian or Pacific Islander are 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. Brain health educational events will be offered in eight states each year by the NEAR Satellite Centers. American Indian, Alaska Native, Native Hawaiian and Pacific Islander elders will be invited to participate in a day-long event to learn about healthy aging, brain health, and Alzheimer’s disease research. “We’re excited to engage with Native elders and offer brain health education across the US,” said Ka`imi Sinclair, who leads the NEAR Outreach and Engagement Core.

In the three NEAR research projects, topics rarely studied in American Indian, Alaska Native, Native Hawaiian and Pacific Islander peoples will be conducted. For example, a study using culturally informed practices, including Hula, to promote vascular health and prevent cognitive decline will be offered in Hawai`i, and a study to examine the role of sleep disorders in cognition will be offered in several American Indian communities.

“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.”

We’re excited to engage with Native elders and offer brain health education across the United States.

Contributor Ka`imi Sinclair leads the NEAR Outreach and Engagement Core. For more information about NEAR and related projects, visit the IREACH website or call (206) 708-8668.

Photo at top of the Grand Entry at the 32nd Annual Seafair Powwow (2019) courtesy of Janelle Jackson, Aging and Disability Services. Other photos courtesy of Natives Engaged in Alzheimer’s Research (NEAR).

This article originally appeared in the October 2021 issue of AgeWise King County.