Developing a dementia friendly approach to consent in dementia research

Abstract

Objectives: This paper explores the process of gaining consent from the perspectives of people living with dementia, their relatives/carers, and service providers. This is developed based on new primary qualitative research and addresses a gap in critical reflection on the practice and ethical process of research consent. Methods: A qualitative approach was used to conduct this research through the implementation of four focus groups run with people living with dementia (n = 12), two focus groups with family members (n = 6), two focus groups with service staff (n = 5). Results: Data was analysed thematically, to identify two core themes: consent as a journey and the flexible consent approach. These identified concerns with autonomy, decision making and placing people living with dementia at the centre of the consent process. The journey of consent emerged as central to supporting participation and enhancing the consent process. Conclusion: The paper presents new evidence about the lived experience of research consent in the field of dementia, presenting the process of collecting consent in research as a flexible process that is best supported through a growing knowledge of participants and participation sites.