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 time perception and task completion
  An undergraduate student from the University of Regina is looking at how older adults experience short thinking tasks about time and personal memories. This will help researchers design future studies about time perception and dementia. You may be eligible if you are 55 or older, speak English, have normal (or corrected) vision and hearing and have not been diagnosed with dementia or certain neurological, medical or mental health conditions. If you take part, you will join one virtual meeting lasting about 60–90 minutes where you answer a few questions, estimate how long events last, recall past experiences, imagine future events and share brief background information and feedback. To learn more, click here. 
   
• Identifying caregiver services in smaller BC communities
  Researchers at UBC are conducting a study to understand the information and service needs for dementia caregivers in smaller communities in BC. They are seeking adults who have cared for a person living with dementia at home within the past two years to share their experiences . You may be eligible if you are 19 or older, live (or lived during caregiving) in or near Comox/Courtenay, Gibsons or Sechelt and are comfortable speaking English. Taking part includes a short 10-minute questionnaire and one 60-minute Zoom interview, with the option to join a 60–90 minute Zoom focus group. If you're interested, click here. 
   
• Caregiver experiences and impact of social cognition difficulties in people living with dementia
  Researchers at the University of Calgary are studying how social and cognitive changes related to dementia affect family caregivers. By taking part, you’ll help the team develop practical educational materials to better support caregivers in meaningful ways. Participation involves completing an online survey, and you’ll have the chance to win one of fifty $60 e-gift cards. Click here to find out more.
   
• Understanding caregiver resilience: Researchers at the University of Victoria are exploring resilience-related behaviours among family care partners and people living with dementia. The study includes an online survey (max 60 minutes) and online "brain-games" (max 30 minutes). Participants will receive an honorarium for their time and energy. To find out more, click here.
   
• Exploring Indian-origin family caregiving
  Researchers at UBC are seeking participants for a study exploring how cultural values, family roles and identity shape the caregiving experience. Participation includes a short questionnaire, one individual interview (in person or via Zoom), and an optional group discussion, with a total time commitment of about 3–4 hours over four months. Your experiences can help improve understanding and support for caregivers across cultures. Click here to find out more.
   
• Evaluating a web-based program for care partners
  Are you a care partner to a person living with moderate dementia? Researchers in Nova Scotia are looking for care partners to take part in a study evaluating Health enSuite, a web-based program designed to support emotional well-being and strengthen relationships. Participants will use the online program for 8 weeks (about 2 hours per week) and complete three short questionnaires over a 21-week study period. 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 BC. 
• 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.