Expanding the ethnographic toolkit: Using medical documents to include kinless older adults living with dementia in qualitative research

Abstract

Ethnographic research with cognitively impaired older adults can be challenging, in part because cognitive impairment raises questions about the ability to provide informed consent. Relying on proxy consent is a commonly used strategy, but often excludes people with dementia who lack close kin (de Medeiros, Girling, & Berlinger, 2022). In this paper, we describe how we have analyzed existing research data from a well-established and ongoing prospective cohort study, the Adult Changes in Thought Study, along with unstructured text from the medical records of participants who had no living spouse or adult children when they developed dementia, as a way of studying the circumstances, life trajectories, caregiving resources, and care needs of this vulnerable and difficult-to-research group. In this article, we detail this methodology, exploring what can and cannot be gleaned from it, what the ethical implications may be, and how and whether this type of research can be considered ethnographic. In conclusion, we argue that collaborative interdisciplinary research using existing, longitudinal research data and text from medical records deserves to be considered as a potentially useful addition to the ethnographic toolkit. We anticipate that this is a methodology that could be applied more broadly, and paired with more traditional ethnographic methods, might be one way to make research with this population more inclusive.

Keywords: Caregiving; Dementia; Ethnography; Medical records; Qualitative analysis.