The National Alzheimer’s Coordinating Center stores all clinical data and brain tissue that Alzheimer’s Disease Centers around the country collect from study participants. Scientists rely on this rich research resource; however, it includes very little information about American Indians and Alaska Natives. As a result, researchers lack rigorous knowledge about the burden, risk factors, and social, economic, and health consequences of Alzheimer’s and related conditions in Native populations. Inclusion of diverse populations in Alzheimer’s disease and related dementias research has emerged as a priority for the National Plan to Address Alzheimer's Disease.
The reasons for this underrepresentation of Native populations in ADRC clinical studies have to do with disparities in health, education, and socioeconomic conditions that limit access to a diagnosis of memory loss and participation in research. Many American Indians and Alaska Natives view research with skepticism and mistrust, in part because research has historically been done on communities rather than with them.
Now, the UW ADRC Native Engagement and Partnership Core will undertake an innovative effort to help increase American Indian and Alaska Native recruitment into the research cohort, enhancing representation of this population in the National Alzheimer’s Coordinating Center. The ADRC NRRC is led by Native health researchers at the Institute for Research and Education to Advance Community Health (IREACH), a large research institute at Washington State University (WSU) : Amanda Boyd, PhD and Patrik Johansson, MD, MPH.
All elements of this endeavor are guided by the principles of participatory research methods – a bi-directional exchange of ideas and knowledge - for example, by conducting focus groups and interviews with Native elders and caregivers about their perspectives and attitudes about participating in Alzheimer’s research.
Collectively, these efforts take a first step toward remedying the underrepresentation of American Indians and Alaska Natives in ADRD research, addressing decades of neglect and misunderstanding and recent calls for diversity. This effort could serve as a new data resource and a model for all ADRCs for conducting research with and for American Indians and Alaska Natives.
Highlights
The UW ADRC, and our colleagues at Washington State University, are invested in an effort to reach out to American Indian, Alaska Native, and other Indigenous communities in the Pacific Northwest, in order to provide resources to people struggling with memory loss and educational materials to local clinic staff. The webpage also features Native AD Research Education resources. Explore UW Indigenous Aging Resources
Video and slideshow presentations of experts from the UW Alzheimer's Disease Research Center/Memory and Brain Wellness Center on brain aging, clinical essentials, vascular dementia, and a new research framework. This is an educational resource for researchers, students, and clinicians interested in Alzheimer's disease and related dementias.
