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Engaging people with lived experience of dementia in research meetings and events: insights from multiple perspectives.
Snowball, Ellen; Aiken, Christine; Norman, Myrna; Hykaway, Wayne; Dempster, Zoe; Itzhak, Inbal; McLellan, Emily; McGilton, Katherine S; Bethell, Jennifer.
Affiliation
  • Snowball E; Knowledge, Innovation, Talent, Everywhere (KITE) Research Institute, Toronto Rehabilitation Institute, University Health Network, Toronto, ON, Canada.
  • Aiken C; Engagement of People with Lived Experience of Dementia Program/Advisory Group, Canadian Consortium on Neurodegeneration in Aging, Montreal, QC, Canada.
  • Norman M; Engagement of People with Lived Experience of Dementia Program/Advisory Group, Canadian Consortium on Neurodegeneration in Aging, Montreal, QC, Canada.
  • Hykaway W; Engagement of People with Lived Experience of Dementia Program/Advisory Group, Canadian Consortium on Neurodegeneration in Aging, Montreal, QC, Canada.
  • Dempster Z; Engagement of People with Lived Experience of Dementia Program/Advisory Group, Canadian Consortium on Neurodegeneration in Aging, Montreal, QC, Canada.
  • Itzhak I; Engagement of People with Lived Experience of Dementia Program/Advisory Group, Canadian Consortium on Neurodegeneration in Aging, Montreal, QC, Canada.
  • McLellan E; Knowledge Translation and Exchange Program, Canadian Consortium on Neurodegeneration in Aging, Montreal, QC, Canada.
  • McGilton KS; Engagement of People with Lived Experience of Dementia Program/Advisory Group, Canadian Consortium on Neurodegeneration in Aging, Montreal, QC, Canada.
  • Bethell J; Knowledge, Innovation, Talent, Everywhere (KITE) Research Institute, Toronto Rehabilitation Institute, University Health Network, Toronto, ON, Canada.
Front Dement ; 3: 1421737, 2024.
Article in En | MEDLINE | ID: mdl-39081602
ABSTRACT
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.
Key words

Full text: 1 Collection: 01-internacional Database: MEDLINE Language: En Journal: Front Dement Year: 2024 Document type: Article Affiliation country: Canada Country of publication: Switzerland

Full text: 1 Collection: 01-internacional Database: MEDLINE Language: En Journal: Front Dement Year: 2024 Document type: Article Affiliation country: Canada Country of publication: Switzerland