Resources for researchers
Practical resources to help biomedical embed dementia-inclusive practices across the research process.
These resources are drawn from Collaborative minds: A guide to meaningfully engage people with lived experience of dementia in biomedical research and are organized according to the different phases of the research process identified in the guidebook.
The resources are for anyone working in biomedical dementia research – researchers, trainees, project managers and people involved in designing or developing research projects – seeking to embed dementia-inclusive practices into their work.
Phase 1: Laying the groundwork for collaboration
- Learn more about stigma and how to reduce its impact
Alzheimer Society of Canada (webpage) - Understand how communication affects people living with dementia
Alzheimer Society of Canada (webpage) - Research webinar series
Alzheimer Society of BC and Yukon (webpage) - Resources and services to support researchers with patient-oriented research
Health Research BC and BC Support Unit (webpage) - Practical guidelines and resources for patient engagement
Canadian Institutes for Health Research (webpage) - Evidence-informed practices and strategies for patient-oriented research
Health Research BC – BC SUPPORT Unit (PDF)
Phase 2: Planning the study
- Person-centred language guidelines
Alzheimer Society of Canada (PDF) - Language guidelines tip sheet
Dementia-Friendly Canada (PDF) - Tips for dementia-friendly written material
Dementia-Friendly Canada (PDF) - Tips for dementia-friendly spaces
Dementia-Friendly Canada (PDF) - Tips on how to write a knowledge mobilization plan for grant writing
Canadian Consortium on Neurodegeneration in Aging (webpage) - Ethics guidance for developing partnerships with patients and researchers
Canadian Institutes for Health Research (webpage) - Patient partner compensation guidelines
Canadian Institutes for Health Research (webpage)
Phase 3: Collecting data
- Tips for communicating with people living with dementia
Alzheimer Society of Canada (webpage) - A practical guide to patient and public involvement in lab-based research
Alzheimer’s Society, Parkinson’s UK and the NIHR Biomedical Research Centre at University College London Hospitals (webpage)
Phase 4: Analysing data
- Guide for engaging with research partners about data analysis
Patient-Centered Outcomes Research Institute (webpage) - Guiding framework for patient engagement in preclinical laboratory research
LabPartners (webpage)
Phase 5: Sharing research findings
- Knowledge mobilization opportunities
Alzheimer Society of BC and Yukon (webpage) - Knowledge mobilization resources
Geras Centre for Aging (webpage) - Resource repository
Research Impact Canada (webpage) - How to distil key messages from an academic publication and communicate using plain language
Can-SOLVE CKD Network (webpage) - Designing for dementia, a dementia-inclusive digital design factsheet
AbilityNet (webpage) - The Knowledge Translation Planning Template©
The Hospital for Sick Children (PDF)
If you have any additional questions or would like to learn more, please reach out to the Alzheimer Society of BC and Yukon’s Research and Knowledge Mobilization team at [email protected] or call 1-800-667-3242.