SUPPORTING PERSONS WITH DEMENTIA IN KNOWLEDGE GENERATION AND TRANSLATION Lisa Loiselle, Sherry Dupuis, Carrie McAiney and the Dementia Diagnosis Resource.

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Presentation transcript:

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, 2012 Alzheimer Disease International Conference

Authentic Partnership

Our Process Creating 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: For more information about MAREP, please visit our website: 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.