1. Mobilizing Knowledge for Persons with Dementia and Families at Diagnosis: A Participatory Research Project Lisa Loiselle, Sherry Dupuis, Carrie McAiney and the Dementia Diagnosis Resource Kit Working Group Sunday March 27, 2011 Alzheimer Disease International Conference

2. Purpose Objectives: 1.Identify knowledge/information needs 2.Determine what tools already exist and assess quality of tools 3.Gather information necessary to develop new tools 4.Pilot test the kit 5.Work with partners to develop a distribution plan 6.Document and assess the development process

3. Rationale Person’s living with dementia are excluded from educational and learning opportunities Traditional approaches to knowledge mobilization fail to recognize the important contributions that persons with dementia can make MAREP Priority setting exercise (2008)

4. Methods Participatory Action Research approach 17-member team – Persons newly diagnosed with dementia – Family members of persons with dementia – Public education coordinators (Alzheimer Society Chapters) – First Link coordinators and educators – Professionals who work with those in early-stages – Representatives from family health teams – Researchers

5. Objective 1 Identify Knowledge/Information Needs Focus groups with participants in early-stage support groups (N=8) Interviews with persons with dementia, family members and professionals (N=14) Open-ended questionnaires completed by persons with dementia (N=21); and family members (N=17) Completion of an information needs checklist (N=115)

6. Objective 1 Identify Knowledge/Information Needs 1.Living Well Emotional well-being Communication Quality of life 2.Care and support Community supports and services Safety Care options 3.Health care Diagnosis What is dementia Working with health care professionals Treatment and medication 4.Planning ahead

7. Objective 2 Determine What Tools Already Exist 500+ individual resources were identified by:  conducting a thorough internet search  interviewing health professionals and Alzheimer Society staff

8. Objective 2 Assess Existing Tools 1.Two assessment tools were developed, using: DISCERN Handbook (Charnock, 1998) SAM (Doak, Doak & Root, 1993) Teaching Patients with Low Literacy Skills (Doak, Doak, & Root, 1996) 2.Six trained assessors, including 2 persons with dementia, independently assessed 500+ tools

9. Objective 3 Gather Information to Develop New Tools Gaps in the tools to address information needs were identified: Testing process (purpose of tests; length of time testing takes; what results mean; how to prepare for tests) Dementia specialist (available specialists; how to get referred; what to expect at the appointment) Support services (cost & wait times; supports and services to enhance quality of life) Transition to Long term care (cost of long term care; placement process; wait times; what to expect on moving day)

10. Conclusions & Future Goals

11. Thank-you for your attention! For more information about MAREP, please go to our website: www.marep.uwaterloo.cawww.marep.uwaterloo.ca

12. Conflict of Interest Disclosure Lisa Loiselle, M.A. Has no real or apparent conflicts of interest to report.