Community partner highlight: the Crow Tribe
Building better opportunities for American Indian/Alaska Natives with Alzheimer’s disease and related dementias
More than 6 million individuals in the U.S. live with Alzheimer’s disease and related dementias (ADRD), which is projected to increase to more than 15 million by 2060. Approximately 35% of American Indians and Alaska Natives over 65 years old are predicted to be diagnosed with ADRD during the next 25 years.
In a collaborative study with the Crow Tribe in Montana, researchers from the Northern Arizona University Southwest Health Equity Research Collaborative hope to improve the early detection of dementia in American Indians and Alaska Natives, an important step toward enhancing preventive care in this vulnerable population.
According to Sara Young, Crow tribal liaison, lead community researcher, and enrolled member of the Crow Tribe, the importance of studying the risks and protective factors for Alzheimer’s disease and related dementias in the Crow Tribe is multifaceted.
“The primary and most significant issue is to decrease the risks of losing our cultural ties to the generation that preserves and passes on our oral history and preserves our cultural identities,” Young said. In 2016, the tribe’s enrollment was 13,865. Young said that Crow elders are critically important to their families and the whole tribal community because they carry the stories, language and cultural practices related to the connectedness of each of these groups.
“The elders feel gratified when they have the opportunity to share their wealth of knowledge with their children, grandchildren and great-grandchildren as well as in community settings and to others within the tribe seeking their knowledge,” Young said.
The research team includes Young, Gerlinda Morrison, community researcher and lead recruiter for participants; Regents’ professor Julie Baldwin, NAU Department of Health Sciences and director of the Center for Health Equity Research; Amit Kumar, associate professor, health services the University of Utah; Indrakshi Roy, assistant research professor, CHER and the NAU Department of Health Sciences; Taylor Lane, CHER research scientist; Regents’ professor emeritus Robert T. Trotter II; Amol Karmarker, professor, Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University; and Grant Sears, CHER research coordinator.
Importance of culturally connected ADRD intervention programs
According to Kumar, past dementia risk prediction models have been criticized for not capturing protective factors such as cultural values, spirituality, family cohesion, and specific behavioral practices pertinent to American Indians and Alaska Natives due to over-reliance on quantitative data and poor internal and external validations in the American Indian and Alaska Native population.
“The study will generate empirical evidence presenting the magnitude of the effects of midlife, modifiable risk factors on later-life cognitive functioning and develop a model to predict dementia in the American Indian and Alaska Native population,” said Kumar. “This project will advance the scientific understanding of early indicators of cognitive decline and cultural attributes in highly vulnerable, Indigenous populations and develop a culturally appropriate dementia screening tool that can be administered quickly by clinicians in healthcare settings.”
To improve early detection of dementia in American Indians and Alaska Natives, the research team will start with a key cultural concept called Baakalaaxdeete, which means “to have a good memory” in the Crow language and look for parallels with both ADRD risk and resilience factors common to those found in secondary data from Medicare and the National Health and Aging Trends Study.
They will use the data to develop a dementia risk index for American Indians and Alaska Natives specifically to facilitate early and accurate identification of those at risk for dementia.
Interpreting how best to address ADRD in their own community
The team will also conduct focus groups and individual interviews with members of the Crow Tribe to better understand community perspectives on ADRD and the unique social, cultural, and community factors related to ADRD in their community. The study group will consist of 88 people who are 65-90 years old.
Morrison, who is also an enrolled member of the Crow Tribe, said that the information collected from the study will help them understand the positive and negative impacts of changes to memory and understanding in Crow culture to interpret how best to address ADRD in their community.
“My goal is to help educate our community with ways to help lower risk factors and maintain a healthy memory as long as we can,” Morrison said. “There are limited resources that are available to take care of our elderly. I hope that this type of research will bring knowledge to us so that we can help each other to take care of our families, and that it will bring in resources that will help us meet the needs of our people.”
According to Baldwin, the partnership between the Crow Tribe and SHERC researchers will lead to the development of culturally appropriate indicators to improve the early detection of ADRD and interventions to prevent ADRD in the American Indian and Alaska Native populations.
“We are so thankful to have this partnership with the Crow Tribe for this project and are especially grateful to both Sara [Young] and Gerlinda [Morrison] for their dedication to overseeing and conducting the community-based portion of the study,” Baldwin said. “We all hope this study will lead to future culturally centered efforts to reduce ADRD risks among members of the Crow Tribe, as well as other Native Nations in the U.S.”
For more information on the study, visit the Baakalaaxdeete (To have a good memory) Study of Risk and Protective Factors for ADRD among American Indians Across the Life Span page.
The Southwest Health Equity Research Collaborative at Northern Arizona University is supported by a National Institute on Minority Health Disparities center grant (U54MD012388).