Journey of ethics – Conducting collaborative research with people with dementia

Diana Schack Thoft, Alison Ward, Jane Youell

Research output: Contribution to JournalArticlepeer-review


This paper explores some of the ethical considerations of working collaboratively with people with dementia within research. Examples of good practice and learning are drawn from three doctoral research studies which focus on the research relationship with participants and gatekeepers, the importance of setting and access, the power relations within the research and ways in which people with dementia can be supported to be active and have a voice in research. This sits within an ethical framework of principalist ethics, ethics of care and virtue ethics to guide not only how research is planned ethically and with consideration of participants, but also how this can support decisions made in situ. The aim is to provide learning for early career researchers going into this field of research to support their decisions in planning and conducting research with people with dementia as active collaborators.
Original languageEnglish
Pages (from-to)1005-1024
Number of pages20
JournalDementia: The International Journal of Social Research and Practice
Issue number3
Early online date23 Apr 2020
Publication statusPublished - 1 Apr 2021


  • Dementia
  • Ethics
  • collaboration


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