Notes from the hospital bedside: reflections on researcher roles and responsibilities at the end of life in dementia

The purpose of this paper is to explore some of the ethical and practical dilemmas faced by an experienced researcher in undertaking research with a person with dementia (whom we have called Amy). Amy died shortly after a period of observation had ended and the family subsequently consented to the data being shared.

This individual case study presentation was nested within a larger study conducted in England and Scotland between 2013 and 2014. The overall aim of the main study was to investigate how healthcare professionals and informal carers recognised, assessed and managed pain in patients living with dementia in a range of acute settings.

The presented case study of Amy raises three critical reflection points: (i) Researcher providing care, i.e. the place and positioning of compassion in research observation; (ii) What do the stories mean? i.e. the reframing of Amy's words, gestures and behaviours as (end of) life review, potentially highlights unresolved personal conflicts and reflections on loss; and (iii) Communication is embodied, i.e. the need to move beyond the recording of words to represent lived experience and into more multi-sensory methods of data capture.

Researcher guidance and training about end of life observations in dementia is presently absent in the literature and this case study stimulates debate in a much overlooked area, including the role of ethics committees.