Developing a dementia friendly approach to consent in dementia research

Area of Science:

• Gerontology
• Bioethics
• Qualitative Research

Background:

• Ethical research involving individuals with dementia requires careful consideration of the consent process.
• Existing literature often lacks critical reflection on the practical and ethical aspects of obtaining consent in dementia research.

Purpose of the Study:

• To explore the process of gaining research consent from the perspectives of people living with dementia, their relatives/carers, and service providers.
• To address the gap in critical reflection on the practice and ethical considerations of research consent in dementia.

Main Methods:

• A qualitative research approach was employed.
• Data collection involved four focus groups with people living with dementia (n=12), two with family members (n=6), and two with service staff (n=5).

Main Results:

• Thematic analysis identified two core themes: consent as a journey and a flexible consent approach.
• Key concerns included autonomy, decision-making, and centering people with dementia in the consent process.
• The journey of consent was found to be central to supporting participation and enhancing the process.

Conclusions:

• The study presents new evidence on the lived experience of research consent in dementia.
• The process of collecting consent in research is best supported by a flexible approach and growing knowledge of participants and settings.