Paper short abstract:

This paper explores the challenges encountered when writing ethnography based on fieldwork with people with dementia in north-east Italy. How the disciplinary ethical requirements of not doing harm can be met, when no prospective research ethics or legal regulations are in place?

Paper long abstract:

Not to do harm is mandatory ethical requirement of any anthropological fieldwork product. How do we satisfy this condition when writing ethnographic stories about people who live with dementia? In our ethnographic reporting, oftentimes there are competing interests and agendas: that of caregivers, gatekeepers, participants with dementia, the researcher. Who decides what doing harm means or who is the one not to be harmed, especially when no prospective research ethics or legal regulations are in place?

We will seek answers to these questions, by exploring the challenges and possibilities of choice encountered by one of the authors during her ethnographic research - in a north-east Italian town- where she conducted fieldwork with participants living with dementia, their families and two local institutions that cater for them. In our discussion of the dilemmas encountered by this author in the writing-up phase, we will address the following issues: how to ethically interpret consent in a context where consent is not very clear cut and no ethical board regulates anthropological research on dementia? In such context, how (any further) consent should be obtained and from whom? Moreover, how to present the stories of local experts who really mean well, or of individuals who are well-meaning care-givers? For example, how to write about the care-givers or local experts who gave the ethnographer access to the field and whose reputation or careers may be at stake if exposed to anthropological analysis, not because the described behaviors represent "fallacy of care", but because their approach is only one of possible ways of making sense of dementia