Frontiers in Dementia (Jul 2024)

Engaging people with lived experience of dementia in research meetings and events: insights from multiple perspectives

  • Ellen Snowball,
  • Ellen Snowball,
  • Christine Aiken,
  • Myrna Norman,
  • Wayne Hykaway,
  • Zoe Dempster,
  • Inbal Itzhak,
  • Emily McLellan,
  • Katherine S. McGilton,
  • Katherine S. McGilton,
  • Katherine S. McGilton,
  • Jennifer Bethell,
  • Jennifer Bethell,
  • Jennifer Bethell

DOI
https://doi.org/10.3389/frdem.2024.1421737
Journal volume & issue
Vol. 3

Abstract

Read online

This perspective article describes the experiences of engaging people with lived experience of dementia in research meetings and events from the perspectives of people with lived experience, researchers, trainees, audience members and others. We outline examples of engagement from different events and describe a video project, initiated by people with lived experience, conveying diverse views about becoming integral collaborators in the Canadian Consortium on Neurodegeneration in Aging (CCNA) annual Partners Forum and Science Days. We also report evaluation data from audiences and present a series of tips and strategies for facilitating this engagement, including practical considerations for supporting people with lived experience.

Keywords