Paper short abstract:

The paper will explore the ambiguous ethical implications of doing ethnography in support groups for dementia in Northern Italy, before and during the pandemic. I will discuss how to avoid marginalizing cognitively impaired people or denying carers' feelings or exacerbating tensions between them.

Paper long abstract:

This paper aims to explore the ethical implications of conducting ethnographic research in caregiver support groups for dementia and Alzheimer's Café in Northern Italy. In those contexts, where the sharing of experiences is considered necessary for learning how to deal with the daily-life problems in a confidential and private place, people often resist the research imperative of generalizing personal experiences to a common experience and also refuse what they consider as useless uniform and abstract conceptions of illness and care, often present in heroic or tragic narrations. Furthermore, researching in low-threshold support services that set low control on users without clear ethical guidelines can result in the ambiguity of ethical principles to follow for not marginalizing cognitively impaired sick people or denying carers' feelings or exacerbating tensions between them. At the same time, this ambiguity opens up space to re-negotiate an ethnographic method that recognizes the value of individual experience and the travails of the researcher's emotional labor while stimulating the researcher and participants to rethink the construction of socially established roles. This paper will engage all these issues as well as the contemporary changes brought by the pandemic in terms of methodology and ethnographic ethical implications.