Integrating Living/Lived Experience into Dementia Guideline Development in Australia
Jenna Dennison

Date and Time

Thursday, November 12, 2026, 10:15 AM - 10:30 AM

Theme / Track

Policy, advocacy, planning and change

Presentation Format

Concurrent

Background: In Australia, the 2016 Clinical Practice Guidelines and Principles of Care for People with Dementia are being updated. As part of this update, a Living/Lived Experience Advisory Group (LEAG) was established consisting of eleven people, who were either living with dementia or were current or former carers of people living with dementia. The aim of this abstract is to report the contribution of the LEAG in all aspects of guideline development. Methods: The guideline development process followed GRADE methodology which is a systematic approach to guideline development. To incorporate the LEAG, monthly meetings were held to consider the value of outcomes, and acceptability, resources and equity concerns of interventions considered for guideline development. Meetings were recorded and analysed qualitatively using content analysis. A summary of this analysis was included as part of the evidence provided to guideline development group members to consider when developing recommendations. In addition, two LEAG members were present at each guideline development group meeting and part of developing each recommendation. Results: The LEAG met 16 times, including an introductory meeting, a dedicated session on principles of care, three GRADE training workshops, and 11 meetings focused on discussing interventions being considered in guideline development. When considering outcomes where there was limited evidence available the LEAG provided invaluable insight of their experiences. Conclusions: The LEAG have unique expertise drawn from their experience. This project demonstrates the feasibility of including people with living/lived experience of dementia in formal guideline development processes.

Keywords

Dementia, Design, Evidence Based Policy, Implementation, Meaningful Engagement

Authors

Dr. Katrina Long
Professor Velandai Srikanth
Associate Professor Darshini Ayton