Indigenization, Personalization, and Intersections: A Qualitative Study to Identify Essential Components for Developing an Indigenous-Centered Dementia Care Model in Alberta

Abstract

Current models of dementia care often perpetuate the legacies of colonization, which highlights the need for a culturally congruent approach. This research describes the necessary components to co-develop a freely available Indigenous-centered dementia model of care in partnership with Indigenous individuals living with dementia, their families, and communities. To prioritize ethical and decolonial research approaches, sequential focus groups were used alongside Keeoukaywin (The Visiting Way)-an Indigenous methodology deeply rooted in Métis and Cree ways of knowing-guided by a group of advisors and Elders. The data were co-analyzed using reflexive thematic analysis guided by Indigenous principles. Three themes were generated: Indigenization, Personalization, and the Intersection of Challenges and Innovations, to illustrate how dementia care can be operationalized and adapted to various cultural and care contexts. This research offers a foundation for developing dementia care that truly aligns with Indigenous ways of doing.

Plain Language Summary

What we studied: What are the necessary elements of an Indigenous-specific dementia model of care to improve the supports provided to Indigenous families living with dementia?

How we studied it:  We completed repeated focus groups alongside an Indigenous methodology deeply rooted in Métis and Cree ways of knowing. Our work was also guided by a group of advisors and Elders. The data were co-analyzed using Indigenous approaches to thematic analysis.

What we found: Three themes were generated: Indigenization, Personalization, and the Intersection of Challenges and Innovations. These themes show how dementia care can be designed and delivered in various cultural and care contexts. Within each theme, there are a number of activities that participants felt would be meaningful and culturally appropriate.

Why it matters: This research offers a foundation for developing dementia care that truly aligns with Indigenous ways of doing. The goal is for this work to be used with communities and be adaptable to the specific context of individual communities. Future research will develop a structure for delivering the components of the work identified here.