Next-Gen ethnography to understand decision-making among diverse populations impacted by Alzheimer's disease and related dementias (ADRD)

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Culture is central to decision-making in health and healthcare and especially consequential in Alzheimer’s disease and related dementias (ADRD). Culture shapes how communities of patients and caregivers experience ADRD, and culture shapes how medical and social institutions manage ADRD. As an expert in the sociology of culture, I have developed novel methods for the rigorous and replicable study of culture in the context of health and medicine. To date, my research has largely focused on culture and cancer. However, in the last three years I have become engaged in studies related to ADRD. I am applying for the NIA BSR LEADR award to bring my expertise to the field of ADRD research. I propose a project with two goals: first, to explain how culture shapes experiences of ADRD in diverse populations; second, to leverage this improved understanding of culture to develop tailored decision-support for ADRD stakeholders. My proposed project includes four activities to accomplish these goals. (1) Use comparative ethnography – a qualitative social science approach which is a principal approach for studying culture – to examine experiences of ADRD among diverse populations who receive care in a variety of institutional settings. (2) Develop novel methods for the analysis and presentation of the qualitative data produced by the comparative ethnography. (3) Characterize strategies of decision-making among diverse populations impacted by ADRD, including how community and institutional cultures shape those strategies. (4) Propose tools that leverage new understandings of decision-making strategies to support patient, caregiver, and clinician decision-making in diverse populations and institutions. The outcomes of this project include new understandings of how culture shapes ADRD among diverse populations impacted by ADRD; novel methods for gathering, analyzing, and presenting data about culture that achieve high levels of rigor and reproducibility; and identification of new approaches and targets for interventions to improve decision-support for individuals, communities and institutions impacted by ADRD.