2024 Alzheimer's Association Research Grant to Promote Diversity (AARG-D)
Minnesota American Indian Dementia Surveillance System
How can public health databases better support Native Americans with Alzheimer’s?
Genelle Lamont, Ph.D.
University of Minnesota
Duluth, MN - United States
Background
According to the 2024 Alzheimer’s Disease Facts and Figures report, Native Americans are underrepresented in Alzheimer’s research. As a result, the true incidence of Alzheimer’s and related dementias in this population is unknown. This makes it difficult to provide Native Americans living with Alzheimer’s with appropriate care and support.
Existing data related to Alzheimer’s in Native Americans has been limited to certain tribes, or has not been captured at all due to inadequate race/ethnicity options in public health databases. There are also no public health databases specifically designed to help understand Alzheimer’s among Native Americans.
Research Plan
Dr. Genelle Lamont and team will work together with the Native American community to build a registry of Minnesota Native Americans living with Alzheimer’s and related dementias. This will require a community-based participatory research approach. First, the researchers will evaluate tribal community members’ knowledge, attitudes, and perceptions of dementia research, registries, and data use. Their goal is to identify the types of health information that participants are comfortable sharing, and how it might benefit the Native American community. The researchers will meet with tribal leadership to identify individuals to be invited to participate in hourlong interviews. They will also recruit Native Americans with early-stage dementia and their caregivers to provide input on the registry design. These important steps will provide the foundation for a Minnesota Tribal Alzheimer’s Disease and Related Dementias Registry Plan.
In the second part of the study, Dr. Lamont and team will link existing electronic health system databases. Their goal is to more accurately monitor Native American deaths attributable to dementia. The researchers plan to connect Minnesota mortality records across the National Center for Health Statistics, the Minnesota Department of Health, U.S. Indian Health Services, and tribal health facilities’ databases. The researchers will verify Native American mortality records that list Alzheimer’s or related dementias and update the national and state death records accordingly. This will provide more accurate data to include in a new Minnesota registry of Alzheimer’s and related dementia among Native Americans.
Impact
A new registry developed by Dr. Lamont and colleagues will allow tribes and public health agencies to monitor and respond to the unique Alzheimer’s needs of Native Americans. It will also greatly improve the quality, depth, and rigor of research that can be conducted to understand and support Native Americans living with Alzheimer’s and their caregivers.