Engagement of people with lived experience of dementia advisory group and cross-cutting program: reflections on the first year

Author(s): Ellen Snowball, Rosette Fernandez Loughlin, Heather Eagleson, Karen Myers Barnett, Emily McLellan, Denis O’Connor, Catherine Kelly, Christine Thelker, Katherine S. McGilton & Jennifer Bethell

Journal: Research Involvement and Engagement

Pages/DOI: https://doi.org/10.1186/s40900-022-00359-5

Date: June 2022

Social Connection is Essential in Long-Term Care Homes: Considerations During COVID-19 and Beyond
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Jennifer Bethell

KITE-Toronto Rehabilitation Institute, University Health Network, University of Toronto

https://orcid.org/0000-0002-6141-9011

• Hannah M. O'Rourke University of Alberta

• Heather Eagleson Canadian Consortium on Neurodegeneration in Aging (CCNA)

• Daniel Gaetano Canadian Consortium on Neurodegeneration in Aging (CCNA)

• Wayne Hykaway Canadian Consortium on Neurodegeneration in Aging (CCNA)

• Carrie McAiney University of Waterloo, Schlegel-University of Waterloo Research Institute for Aging
  
  

EPLED (Engagement of People with Lived Experience of Dementia) Resource Video

March 23rd, 2021

A short video about resources for trainee’s - this was for CCNA’s Training & Building Capacity team!

CCNA - EPLED (Engagement of People with Lived Experience of Dementia) Recalibration

February 12, 2021

A short video discussing our goals for 2021!

Challenging the Stigma of Dementia
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brainXchange in partnership with the Alzheimer Society of Canada and the Canadian Consortium on Neurodegeneration in Aging (CCNA).

Jennifer Bethell, PhD; Mr. Roger Marple and Laura Middleton, PhD.

In this presentation, we discuss research and personal experiences related to:
~What stigma of dementia looks like
~What are the consequences of stigma
~What actions can we take to change attitudes and challenge stigma

Social connection in residents of long-term care homes: mental health impacts and strategies during COVID-19

Jennifer Bethell, Katelynn Viau Aelick

In this presentation, we will summarize the research evidence linking social connection to mental health outcomes for LTC residents as well as twelve strategies that might help to build and maintain social connection for LTC residents - both during COVID-19 and beyond

The CCNA Advisory Group of People with Lived Experience of Dementia: Discussing Opportunities for Engagement in CCNA Research

Poster Presentation for Canadian Consortium on Neurodegeneration in Aging (CCNA) Partners Forum and Science Days, 2020

CCNA Phase II - Presentations

Alzheimer's Association International Conference (AAIC), 2020 

CCNA Phase I - Publications

Patient engagement in research related to dementia: A scoping review

Jennifer Bethell, Elana Commisso, Hanne Marie Rostad, Martine Puts, Jessica Babineau, Anna Grinbergs-Saull, Mary Beth Wighton, John Hammel, Elizabeth Doyle, Sacha Nadeau, Katherine S McGilton

Patient 'engagement' or 'involvement' in health research broadly refers to including people with lived experience (i.e. individuals with personal experience of a health issue and their friends, family and caregivers or carers) in the research process. We conducted a scoping review to describe the extent and nature of patient engagement approaches that have been used to involve persons with dementia and their care partners in research.

CCNA Phase I - Publications

Patient and Public Involvement in Identifying Dementia Research Priorities

Jennifer Bethell, Dorothy Pringle, Larry W Chambers, Carole Cohen, Elana Commisso, Katherine Cowan, Phyllis Fehr, Andreas Laupacis, Paula Szeto, Katherine S McGilton