Memory Keepers Medical Discovery Team: addressing Indigenous dementia disparities through deep exploration of culture and community‐specific context

Abstract Background The Memory Keepers Medical Discovery Team (MK‐MDT) was established in 2016 to address brain health equity for Indigenous and rural populations. Indigenous populations are under‐represented in Alzheimer’s disease and related dementias (ADRD) research studies and clinical trials, yet there is a dire need to address ADRD disparities in this population. In this paper we outline our research approach and studies underway at the MK‐MDT that are designed to address the ADRD disparity in Indigenous populations in the US and Canada. We highlight our flagship study “Indigenous Cultural Understandings of Alzheimer’s Disease and Dementia – Research and Engagement” (ICARE) as a key foundational ethnographic study necessary to advance the field. Method The MK‐MDT incorporates a community‐based participatory research (CBPR) approach with two‐eyed seeing. Two‐eyed seeing ensures the inclusion and valuing of Indigenous knowledge throughout the research process. In ICARE, we maintain a consistent focus on ethnographic research with Indigenous communities to ensure deep understanding of how culture and context shape the dementia experience. Interviews, sequential focus groups, participant observation and fieldnotes are used to populate an ethnographic database on the lived experience of dementia in Indigenous populations. We incorporate a diversity perspective by working with multiple Indigenous communities for each study. We invest in community engagement infrastructure such as community advisory committees, elder advisors, community‐based researchers and outreach workers to ensure our methods follow local ethical protocols, is culturally safe, and community controlled. Result We have successfully initiated NIH‐funded programs of research aimed at reducing dementia disparities. ICARE was launched in 2018 and included 54 interviews and 14 sequential focus group sessions (n = 17) in four diverse Indigenous communities, establishing the first stage of a robust ethnographic database. Findings support the existence of an Indigenous specific understanding of dementia that impacts the dementia care experience. Conclusion The CBPR approach coupled with two‐eyed seeing has allowed for authentic engagement with multiple Indigenous communities and has supported the collection of ethnographic data that can be used to develop culturally appropriate health promotion materials and interventions. The community‐based infrastructure that has been established is currently supporting multiple projects, including clinical research.

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