Beliefs About Dementia and the Role of Culture Among American Indian Families

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Mission

“Beliefs about Dementia and the Role of Culture Among American Indian Families” examines how cultural beliefs shape dementia knowledge, screening and caregiving in American Indian communities. The project works to build community-informed, culturally responsive approaches to dementia education, screening and caregiving support.

Project funding

The project is funded by the Alzheimer's Association—research grant to promote diversity (AARG-D)(23-1149823).

Overview

The TRAILS Study—Tribal Research on ADRD Interest, Learning and Screening is an important study in the project “Beliefs About Dementia and the Role of Culture Among American Indian Families.”

Why this study matters 

  • Dementia prevalence is significantly higher among American Indian/Alaska Native older adults 
  • ADRD is often underdiagnosed and underreported 
  • Limited research exists on dementia knowledge and screening in tribal communities 
  • No prior tribe-specific ADRD research has been conducted with Yankton Sioux Tribe (YST)

Heehyul Moon, MSW, PhD, FGSA

Principal investigator, associate professor in the Kent School of Social Work and Family Science
Heehyul Moon

Study design and progress 

(4-Phase CBPR Approach)

Phase I – Community Engagement (2023)

  • IRB approval (University of Louisville + YST) 
  • Community Advisory Board (CAB) established (5 members) 
  • Development of culturally appropriate research materials 

Phase II – Focus Groups (2024)

  • N = 60 participants (young adults, elders and community leaders) 
  • Key findings: 
    – Strong need for dementia education 
    – Cultural perspectives shape caregiving expectations 
    – Gaps in access to care and services 

Phase III – Survey Study (2024)

  • N = 248 American Indian adults (18+) 
  • Conducted at powwows, churches and community sites 
  • Examined dementia knowledge, beliefs and screening attitudes 

Phase IV – Dissemination (2025–2026, ongoing)

  • Returning findings to the community 
  • Community gatherings and outreach 
  • Development of culturally tailored interventions

Key partners

• Yankton Sioux Tribe Community Advisory Board 
• Community members and local leaders 
• Research team members include Drs. Yeon-Shim Lee, San Franciso State University 
     and Soonhee Roh, University of South Dakota, Sasheen Stone, BA
• Dr. James E. Galvin (University of Miami) 

The “why” behind the study on American Indian communities

4x

Higher dementia prevalence vs. white Medicare beneficiaries

235K-918K

AI/AN adults 65+ projected growth from 2010 to 2050

24K-100K

AI/AN individuals with ADRD projected from 2010 to 2050

27%+

YST poverty rate with the lowest per capita income of all U.S. reservations