January 26, 2021
CONTACT: Dave Baldridge
International Association for Indigenous Aging
Written Testimony to the Advisory Council on Alzheimer’s Research, Care and Services
International Association for Indigenous Aging
The International Association for Indigenous Aging (IA2), a small but highly-accomplished Native non-profit, has contributed substantially to legislation, policy, and practice affecting the well-being of American Indian and Alaska Native (AIAN) elders over the years. Founded in 2002, IA2 is led by Dave Baldridge, member of the Cherokee Nation, and a majority AIAN board.
We would like to call your attention to the disparities facing AIAN elders and their caregivers in addressing Alzheimer’s Disease and Related Dementias (ADRD) and the role of IA2 in addressing them.
IA2 has significant experience in working with the disparities of ADRD in Indian Country. Through both our oral and this written testimony, we’d like to acquaint you with our work and foster collaborations with Council member agencies. We would also like to highlight the disproportionate impact of the COVID-19 pandemic on AIAN populations and the need to address this crisis. We advocate prioritization of efforts to identify and address the urgent needs of patients and caregivers in Indian country affected by ADRD during the pandemic and beyond.
To raise awareness of ADRD in Indian Country IA2 worked with the Association of State and Territorial Health Officials (ASTHO) to create a suite of materials for health agencies and organizations across Indian country. These materials, released in 2019, include flyers, posters, a provider guide, radio PSAs, videos, and national newspaper articles. These materials begin to fill a gap in outreach materials.
We were recently awarded a five-year Healthy Brain Initiative cooperative agreement by the Centers for Disease Control and Prevention (CDC) . Through it, we will serve as a national information hub on ADRD for the nation’s 574 federally-recognized tribes, as well as urban Indian populations. We’d like to recognize Dr. Lisa McGuire, from the CDC, for her leadership role in developing the Healthy Brain Initiative and her acknowledgement of the unique needs of AIAN people, including support and development of the Road Map for Indian Country.
Recent outreach to our project’s Native Healthy Brain Advisory Group Members, composed of experts, providers, tribal leadership, elders, and caregivers from across Indian country, underscores that the COVID-19 pandemic has created significant issues for tribes and tribal elders.
These issues range from access to basic resources such as food and water, to more complex issues such as access to comprehensive health care. Several members of the Native Healthy Brain Advisory Group have themselves been infected with COVID-19 and continue to experience effects from the disease, which impacts their work and family life. Others in this small group shared stories of family and close friends in their tribe who have died as a result of COVID-19.
In our discussions we have found that meeting the needs of Native people with ADRD, and other non-pandemic related work, has been forced to be put on hold by most tribes as they address the crisis of COVID-19.
We also would like to share our concern for the nation’s urban Indian population. Approximately 70% of people who identify as AIAN live in urban areas. However, most do not have local access to an Urban Indian Health Center, Indian Health Service, or tribal health care. This lack of access greatly affects their current health status, including limited and in some cases no access to care to identify and address ADRD.
The primary goal of our CDC-funded project is the creation and promotion of information resources on ADRD, such as those previously mentioned. To be effective, AIAN elders and providers need culturally relevant and appropriate, locally tailored ADRD materials and support for best practices. We encourage the Advisory Council to address the specific needs of this population within its work and recommendations.
IA2 is also serving as the evaluator for two Administration for Community Living’s (ACL) Alzheimer’s Disease Program Initiative grants—one with the Great Lakes Intertribal Council in Wisconsin and the other with the Absentee Shawnee Tribal Health Center in Oklahoma. The effects of COVID-19 on tribal communities served by these programs have dramatically affected the work of these two entities.
In September 2020, our principal investigator for these projects, Dr. Jolie Crowder, submitted an article for publication on COVID-19 and health care workers. At the time, only 21 articles on COVID-19 and Native Americans existed. None focused on the impact on elders specifically; none discussed health impacts for AIAN people; and none discussed COVID-19’s impact on Native ADRD patients or their caregivers.
Native elders are disproportionately impacted by the pandemic, with many dying from it. Existing research indicates that younger Native elders are dying from COVID-19 at higher rates than their white counterparts. The pandemic not only impacts their current care, including delay of care due to fear of becoming infected, but also has unknown impact on future challenges. The mental health implications for Native elders are significant and interventions are scarce. We urge the Council to ensure that research, outreach, and interventions are developed and implemented immediately that specifically address and include AIAN elders and caregivers, both during the COVID-19 pandemic and afterwards.
AIANs, including elders, face higher COVID-19 infection rates, are more likely to be hospitalized, and are more likely to die than other non-Native cohorts. Similarly, AIANs are more likely to be diagnosed with ADRD but face significant barriers to health care. Both crises evidence the disparities impacting Indian country and urban Indian elders. Already-challenged access to care for ADRD has been made more difficult by pandemic precautions, fears, and related shifts in resources. We call on the Council to ensure that AIAN elders and caregivers, as well as other minority and underserved populations, are prioritized in its forthcoming actions and recommendations.
Our organization is deeply committed and stands ready to partner across multiple sectors to identify and address the needs of tribal and urban elders and caregivers affected by ADRD.