Ethnography in Dementia Care Research: observations on ability and capacity

Abstract

This case outlines the rationale and methods used when carrying out ethnographic fieldwork in a care home environment with research participants who were living with a dementia diagnosis. Although concerns had been raised at ethics approval about the use of such methods – visual ethnography in particular – we found that there were ethical benefits for the participants whose capacity for research participation, and for social participation generally, was, in every case, higher than anticipated at the outset. By comparison we found that formal methods for assessing ability to give informed consent often appeared to create excess disability, and to exacerbate ill-being for people with dementia. The case draws on specific examples to show how issues related to methods and to ethical conduct of research are frequently intertwined, and should be considered together rather than in isolation.