Indigenous cultural understandings of Alzheimer’s disease and related dementias – research and engagement (ICARE): relationships between cultural strengths, education and stigma

Background: Evidence indicates Alzheimer’s disease and related dementias (ADRD) and chronic diseases considered risk factors for developing ADRD disproportionately affect Indigenous people. However, little is known regarding lived experiences, needs and resiliencies across the ADRD disease trajectory in Indigenous communities. This work highlights preliminary data from the ICARE study (R56 AG 62307); a project that explored factors impacting ADRD across the disease trajectory. This research focuses on thematic trends and relationships between education, cultural strengths and stigma emerging from the analysis of Sequential Focus Groups (SFGs) data. Method: Community-based participatory research and phenomenology guided qualitative study design, recruitment, data collection and analysis. We conducted SFGs in four tribal community sites in the US and Canada. All participants had professional health care experience working with Indigenous people with dementia (PWD). Each site held between 4-5 sequential virtual focus groups with consistent participants lasting between 30-90 minutes. Community-based researchers led these sessions focused on understandings within the contexts of early, mid and late-stage dementia. Result: Participants (N = 17) were aged 18+, and worked with Indigenous PWD (M = 11.09 years; SD = 9.25). Additionally, 41% reported caring for a loved one with dementia. Preliminary analysis suggests thematic shifts within the contexts of early, mid, and late-stage ADRD, including cultural understandings of ADRD. Participants described a need for education in early-stage, service access in middle-stage, and safety and retrospective recommendations for education in late-stage. Notably, aspects of stigma appeared thematically through each stage, and appeared antithetical to other consistent subthemes of community needs (e.g., education) and cultural strengths (e.g., connectedness, storytelling). Conclusion: SFGs revealed nuances of cultural and community level factors influencing the impact of ADRD across the disease trajectory in four diverse Indigenous communities. Preliminary data provide lines of inquiry for ICARE R01 NIH (R01AG062307), such as exploring culturally appropriate education and outreach as inroads to developing effective interventions and reducing stigma, isolation and the burden of ADRD on AI/FN communities. Notions of stigma require further investigation and may reflect Western ideology and disconnection from traditional teachings resulting from colonization.