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Lisa Loiselle, Sherry Dupuis, Carrie McAiney and the Dementia Diagnosis Resource Kit Working Group

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. Purpose. Objectives:

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Lisa Loiselle, Sherry Dupuis, Carrie McAiney and the Dementia Diagnosis Resource Kit Working Group

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  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: • Identify knowledge/information needs • Determine what tools already exist and assess quality of tools • Gather information necessary to develop new tools • Pilot test the kit • Work with partners to develop a distribution plan • 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 1Identify 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 1Identify Knowledge/Information Needs • Living Well • Emotional well-being • Communication • Quality of life • Care and support • Community supports and services • Safety • Care options • Health care • Diagnosis • What is dementia • Working with health care professionals • Treatment and medication • Planning ahead

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

  8. Objective 2Assess Existing Tools • 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) • Six trained assessors, including 2 persons with dementia, independently assessed 500+ tools

  9. Objective 3Gather 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.ca

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

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