What does it take to get a diagnosis? Dementia recognition and diagnosis pathways among Indigenous peoples

Background: Patients, caregivers, and providers face an oftentimes-confusing healthcare terrain around dementia diagnostics and care given the lack of standardization for screening and evaluation of neurocognitive disorders. This can be further compounded by systemic healthcare inequalities and historical and present-day marginalization faced by Indigenous populations. Method: We present a segment of a pilot study (NIH R56 AG 62307) which sought to explore the impact of Alzheimer’s disease and related dementias (ADRDs) in Indigenous populations across four diverse settings, three in the United States and one in Canada. Community-based researchers conducted key informant interviews with healthcare providers (n = 20) and sequential focus groups (SFGs) with local health care staff and formal caregivers (14 sessions, n = 17). Data were coded based on research questions and objectives in consultation with project leaders, coders, and community-based researchers. Result: In recognizing a cognitive change, all participants identified the importance of family members who often brought their concerns to the attention of a healthcare provider. Additionally, participants in the US and Canada identified events like hospital admissions as a “catastrophic event” (e.g., injury, missed medication, physical decline) as another route for diagnosis. A unique pathway that Canadian participants identified was the role of personal support workers (PSWs) and community nurses in noticing cognitive changes among individuals they served. Finally, providers mentioned various pathways for receiving a dementia diagnosis. While all providers mentioned taking steps to rule out other reasons for cognitive decline, the specific next step for the diagnosis varied widely. The possible professionals to see for a diagnosis included social workers, family doctors, tribal dementia care specialists, behavioral health specialists, psychiatrists, and neurologists. Conclusion: Family members are crucial in recognizing the changes associated with ADRDs. A strength of the Canadian healthcare system is that PSWs and community nurses can also help identify changes, potentially before hazardous “catastrophic events” bring people to the hospital. Once a cognitive change has been identified, the diagnostic pathway is complicated, non-standardized, and irregular – in other words difficult to navigate. Policies and procedures need to be put in place, delineating standardized protocols to better help family caregivers and patients dealing with ADRDs.