Research involving older persons withdementia; ethical considerations

Abstract

In a research project where ten persons with dementia and their close families participated, the researcher explored how older people suffering from dementia could live meaningful lives. The aim of this article is to discuss some ethical considerations when persons with dementia are included in research, and to emphasize how to ensure their integrity and dignity. The qualitative research project involved fieldwork and interviews. Martinsen's ontological situational ethics gave the basis for the discussion of the results. Affected memory and language contributed to vulnerability. Relatives contributed to trust and made it possible for persons to convey narratives about what had been meaningful to them throughout their lives. Individual considerations promoted dignity and integrity. It was necessary to apply discretion 2 and have knowledge about dementia and communication to make the best of the ethical challenges that continuously arose.

The balancing act of dementia care: an ethnographic study of everyday life and relatives’ experiences in a Danish nursing home for people living with advanced dementia

“…Since people with advanced dementia are particular vulnerable participants in research, formal interviews were not conducted with any residents in this study. However, safe and inclusive research practices for interviewing people with dementia are emerging (Drageset, 2019 ; Novek & Wilkinson, 2019 ). Thus, a suggestion for future research may be to further promote the voices of the affected people by including use of formal interviews.…”

Stakeholder perspectives of the dementia-friendly hospital: A qualitative descriptive focus group study

“…To assure that the participants understood their involvement in interviews, all focus group interviews started with the interviewer repeating the aim of the study orally and written material was provided if the participants wanted it. The group of participants with dementia required additional considerations concerning the recruitment (West et al, 2017) due to the affected memory of these people (Drageset, 2019). Therefore, this interview started with short information about the study combined with small talk about their attendance in the current cooking course.…”

“…Firstly, ethical discretion was applied in the interviews, particularly in the interview with the participants with dementia in order to manage protection and minimize feelings of shame and deficiency when memory lacked. General phrases and humor were used to hide this (Drageset, 2019). Secondly, situational ethical considerations were demanded, as the participants with dementia sometimes needed to disclose some of their private conditions and relations.…”

“…Secondly, situational ethical considerations were demanded, as the participants with dementia sometimes needed to disclose some of their private conditions and relations. In these situations, the interviewer assured that the expressions were treated with respect and acknowledged (Drageset, 2019).…”