Consent and Meaningful Inclusion of People Living with Dementia

Background People living with dementia (PLWD) want – and have the right – to participate in research that impacts them. However, barriers in legislation, institutional practices, and/or biases may jeopardize inclusion. Objective and Methods Interviews with 33 Canadian dementia researchers were conducted to explore understandings of research consent with regard to dementia, research practices, and approaches in everyday research contexts. Findings Analysis of these interviews revealed challenges in negotiating the space between best practices and institutional requirements; gaps in knowledge, procedures, and guidelines on inclusion and consent; tensions regarding who should be involved in decision making; and how assumptions of presumed incapacity and/or the ‘protection’ of vulnerable groups create and/or sustain the exclusion of PLWD from research. Discussion Moving forward, findings suggest that advancing the meaningful inclusion of PLWD in Canadian dementia research will require clear, consistent standardized guidelines, flexible and ongoing consent processes, accessibility accommodations, and a stronger focus on rights-based practices.

Dementia · Focus group · Informed consent · Ethics in Clinical Research · Healthcare Decision-Making and Restraints · Mental Health and Patient Involvement

• Interviews as Activated Storytelling

  Amir Marvasti, Jaber F Gubrium•Interviews as Activated…•2025

  Incluir item

• Conceptualizing Inclusive Research with People with Intellectual Disability

  Open Access•Christine Bigby, Patsie Frawley et al.•Journal of Applied Research in…•2014

  Incluir item

• Dementia prevention, intervention, and care

  Open Access•Gill Livingston, Jonathan Huntley et al.•The Lancet•2024

  Incluir item

• A worked example of Braun and Clarke’s approach to reflexive thematic analysis

  Open Access•David Byrne•Quality & Quantity•2022

  Incluir item

• The Active Interview

  James A Holstein, James Holstein et al.•The active interview•1995

  Incluir item

• Stigma, discrimination and agency

  Open Access•Deborah O'Connor, Deborah O’connor et al.•Journal of Aging Studies•2018

  Incluir item

• Using thematic analysis in psychology

  Open Access•Braun, Virginia Braun et al.•Qualitative Research in Psychology•2006

  Incluir item

• How Many Interviews Are Enough

  Open Access•Greg Guest, Arwen Bunce et al.•CAM•2006

  Incluir item