I want to participate in research

Dementia research is people powered – not just by the researchers conducting studies, but by people with lived experience, health-care workers, service providers and volunteers. Research changes both the present and the future for people affected by dementia. Participating in research can provide you with an opportunity to share your experiences, make connections and contribute to innovation.

There are many reasons someone might want to join a research study, including:

• Personal connection – e.g., a genuine interest in the subject matter or a personal contact (e.g., family member, friend or colleague) who lives or lived with dementia.
• Altruism – e.g., a desire to contribute to our broader understanding of dementia, potentially helping others who may live with the disease in the future.
• Curiosity – e.g., a desire to learn more about the research process or how studies are conducted.
• Empowerment – e.g., the opportunity to have a voice in dementia research, either through sharing personal experiences or influencing the direction/focus of research, ensuring studies address relevant and pressing issues.
• Service improvement – e.g., improvement of services and policies that result in more effective and tailored interventions.
• Treatment alternatives – e.g., access to otherwise unavailable treatments or interventions that may benefit one’s own health.

Overall, people with lived experience bring essential perspectives that can enhance the quality and relevance of research, making it more inclusive and comprehensive.

People of diverse backgrounds, ages and life experiences can contribute to dementia research in meaningful ways. Read on to learn about different types of studies and how you may participate in dementia research. 

Current opportunities 

• Understanding caregiver perspectives on Medical Assistance in Dying (MAID)
  Researchers at the University of Victoria are exploring why people living with dementia request MAID from the perspective of a family caregiver. They’re interested in learning more about factors like unmet care needs or transitions into long-term care. Participation involves a one-hour interview, either in person or over Zoom. To learn more, click here. 
   
• Help test a mobile app for community safety
  Researchers at the University of Waterloo and University of Alberta are wanting feedback from people living with dementia and care partners on a mobile app called Guard IO. This app was developed to support community safety and help prevent people from going missing. Participating in this study would involve trying out the app and providing feedback on how well it works. To find out more click here. 
   
• Exploring remote monitoring to support aging at home
  A team at the University of Northern British Columbia is studying how remote monitoring technologies can help older adults live safely at home for longer, while also supporting their caregivers. Participation involves an older adult–caregiver pair choosing a monitoring system, completing phone surveys and taking part in two interviews. If you’d like to find out more, please click here.
   
• Virtual reality and navigation research at UBC
  Researchers at the University of British Columbia are studying how navigation skills change with age and whether virtual reality (VR) can help detect early cognitive changes linked to dementia. Participation includes a session at the UBC Vancouver campus where you’ll navigate a virtual maze and complete some cognitive tasks. Interested in getting involved? Click here to learn more.
   
• Impact of climate change on mental health 
  Researchers from the University of British Columbia, University of Northern British Columbia and University of Alberta are conducting a study to better understand the impact of climate-related weather events on the impact of older adults' mental health and well-being. Participation includes interviews, focus groups, virtual workshops and sharing photos that represent how climate change has impacted your mental health. Click here to learn more.
   
• Understanding and enhancing climate resilience 
  A team of researchers at the University of British Columbia and McGill University are trying to learn more about older adults' experiences during climate-related weather emergencies and helpful strategies to support them. This study is focused on the perspectives of family or friend caregivers who live in the Metro Vancouver area. Participation would include joining a virtual focus group. To find out more, click here.

Find research participation opportunities

• Alzheimer Society Research Portal: connects potential participants and researchers conducting dementia-related research across Canada.
• REACH BC: a non-profit provincial platform that connects volunteers with opportunities to participate in health research across B.C. 
• UBC Clinic for Alzheimer Disease and Related Disorders: engages in dementia research to understand the root causes and underlying mechanisms for effective risk reduction, early detection, advanced treatment and interventions to improve quality of life. 
• Vancouver Coastal Health Research Institute (VCHRI): partners with the University of British Columbia on research improving health outcomes and to study new medications, treatments and medical devices. 
• BC Support Unit (Island Health) Patient Advisory Council and Patient Voices Network: connects patient partners to researchers and provides resources for everyone involved in patient-oriented research.

Determine how to decide if participating in a research study is right for you using this information sheet.

Explore our research glossary.

Interested in doing a deeper dive?

• Health Canada's Clinical Trial Database: Search this database to find current Canadian clinical trials involving pharmaceutical and biological drugs relevant to dementia. Note: Health Canada does not provide contact information for the clinical trial sponsor; such information will need to be obtained by using the Alzheimer Society of Canada Research Portal, the Consortium of Canadian Centres for Clinical Cognitive Research or ClinicalTrails.gov.
• Consortium of Canadian Centres for Clinical Cognitive Research (C5R): Learn how medications for dementia are approved in Canada, as well as the Canadian research centres currently conducting clinical trials for people with mild cognitive impairment, Alzheimer’s disease and other forms of dementia.
• ClinicalTrials.gov: Explore this database established by the US National Institutes of Health to find current information on dementia-related clinical trials happening around the world.

Do you still have questions?

• Contact research@alzheimerbc.org.
• Call our First Link® Dementia Helpline: 1-800-936-6033.