"When the Worlds Change and We Get Old": Indigenous Older Adults Reflecting on Dementia and Aging

Understanding the perspectives of Indigenous older adults about aging and dementia in different Indigenous communities can inform the provision of culturally grounded services and advance equity. However, the experiences and perspectives of Southwestern Pueblo communities are under-researched.

Approved by the Zuni Tribal Government and IRB, this community-engaged, qualitative research explored Zuni older adults' perceptions, experiences, and support needs. Two co-authors who are community members co-led four focus groups and transcribed them.

Twenty participants in four focus groups shared holistic perceptions of dementia. Whereas they often described dementia as a part of aging, they also expressed a strong desire for specialized dementia care and information. They expressed a strong commitment to caregiving as a cultural value, along with challenges and the need for resources to support caregiving as part of specialized dementia healthcare. The challenges experienced by community members were exacerbated by the devastating impact of the COVID-19 pandemic, including the loss of loved ones, long-term COVID-19, disruption of gatherings, loneliness and social isolation.

The need for culturally grounded services is inseparable from Zuni participants' requests for specialized dementia services (including prevention, screening, and caregiving). As the first study to report on the impact of the COVID-19 pandemic on Zuni aging, it highlights the importance of re-building social services and gatherings in planning of service provision.