SUPPORTING PERSONS WITH DEMENTIA IN KNOWLEDGE
GENERATION AND TRANSLATION
Lisa Loiselle, Sherry Dupuis, Carrie McAiney and the Dementia Diagnosis Resource Kit Working Group
Friday March 9, 2012Alzheimer Disease International Conference
Authentic Partnership
Our ProcessCreating the PAR Team
Identifying Information Needs of Persons and Families Newly
Diagnosed
Identifying and Assessing Existing Tools for Persons and
Families with Dementia
Developing the tool
Pilot Testing the Tool Developing a Dissemination Plan
Funding from CDKTN
Funding from CIHR
Partnerships in Practice
Factors that Enabled Our Process:Authentic Partnerships
Enabler #1: Connecting and Committing
• Included a diverse group of individuals involved in care and support
• Collectively determined goals and expectations for the partnership
• Identified strengths, talents, gifts and resources
• Determined how to support the inclusion of all partners
Contributing Partners
Partners with dementia and Family Care Partners
• Joy Greenleese• Brenda Hounam• Jim Mann• Jane Mederak• Robert Nelles• Helen and BJ Wallace
Contributing Partners Cont’d…
• Cathy Conway (Director of Quality Management & Education, Alzheimer Society of Ontario)
• Rhonda Crouse (Alzheimer Society regional chapter staff)
• Dr. Carlos H. Rojas-Fernandez, PharmD (Pharmacist)
• Shelley Green (Executive Director, Alzheimer Society regional chapter)
• Susan Gregg (Occupational Therapist)
• David Harvey (Chief, Public Policy & Program Initiative, Alzheimer Society of Ontario)
• Dr. George Heckman, MD MSc FRCPC (Geriatrician)
• Cathy Ross-Herbert (First Link Coordinator)
• Dr. Ken Le Clair, MD, FRCPC (Geriatric Psychiatrist)
• Dr. Linda Lee, MD, MCISc(FM), CCFP, FCFP (Family Physician)
• Carrie McAiney, PhD (McMaster University)
• Mary Perry White (Provincial First Link Program Consultant, Alzheimer Society of Ontario)
• Elaine Wiersma, PhD (Lakehead University, Thunder Bay, Canada)
Partners Working in Dementia Care and Support
Contributing Partners Cont’d
• Cassandra Bechard (Web developer, UW)
• Ken Cooper (Videography)• Sherry Dupuis, PhD (Director,
MAREP)• Jennifer Gillies, PhD (Post-
doctorial Fellow, MAREP)• Shannon Knutson (Research
Assistant, MAREP)• Justin Lau (Web developer)• Lisa Loiselle (Associate Director
of Research, MAREP)• Janet McKeown (Research
Assistant, MAREP)• Lisa Meschino, PhD (Post-
doctoral fellow and Artist)
• Kathleen Nimigon (Placement Student, MAREP)
• Lukmon Olaatanda (Placement Student, MAREP)
• Zara Rafferty (Knowledge Translation Specialist, MAREP)
• Leah Sadler (Associate Director of Education, MAREP)
• Peter Son (Web developer, UW)• Lindsay Sprague (Knowledge
Translation Specialist, MAREP)• Terry Stewart (Director of IT, UW)• Christopher Wynn (Documentary
Filmmaker)
MAREP/U.Waterloo/Other Support Persons
Enabler #2: Creating a Safe Space
• Created a space that promoted emotional and physical comfort
• Built trust to help members feel comfortable expressing their views without fear of being dismissed, judged or ridiculed
• Discussed upfront how to foster strong relationships
• Stayed attuned to indicators of discomfort or frustration
• Provided a familiar environment, free of distractions, that encouraged people to really be present
Enabler #3: Valuing Diverse Perspectives
• Appreciated everyone’s knowledge and contributions
• Recognized and valued different styles and types of engagement
• Demonstrated that all voices count by acting on people’s insights
• Viewed differences as opportunities
Enabler #4: Establishing and Maintaining Open Communication
• Recognized communication as a dynamic process
• Provided a range of alternatives for communicating
• Provided time for people to process information and share thoughts
• Used accessible language
• Kept all partners ‘in the loop’
• Regularly clarified meanings
Enabler #5: Conducting Regular Critical Reflection and Dialogue
• Provided opportunities for self and group reflections and dialogue on the process
• Regularly asked how our approach was contributing towards building authentic partnerships
Thank you for your attention!
For more information about the new Living With Dementia web based tool,
please visit the website: www.livingwithdementia.uwaterloo.ca
For more information about MAREP, please visit our website: www.marep.uwaterloo.ca
Thank you to CDKTN and CIHR for making this knowledge translation project possible
Conflict of Interest Disclosure Lisa Loiselle, M.A.
Has no real or apparent conflicts of interest to report.