Hope Through Lived Experience

Research is necessary and valuable in building knowledge and facilitating learning about Alzheimer’s disease and other forms of dementia. Insight from people who are living with the disease and those who provide care for them is needed now more than ever to help enhance current dementia data and research methodologies.

If you have lived experience with dementia, please consider reading the following calls for participants through the Alzheimer Society Research Program. Your perspective and participation can provide help for today and hope for tomorrow.  

1. Adversity & Resilience Among Older Adults Living with Chronic Pain 

The Aging, Residents, and Caregivers Research Unit at the University of Regina is examining how adversity and resilience can influence the experience of pain. They would like to learn more about these factors from people living with chronic pain who are at least 65 years of age. Participants will be asked to complete a series of anonymous self-report questionnaires that will take approximately 60 minutes to complete. In appreciation for your time, you will be entered into a draw for a chance to win one of ten gift cards of $50.

To get involved in this study, please follow these steps:

• Go to https://bit.ly/arc-chronic-pain,
• Answer a few questions to determine if you are eligible,
• If eligible, you will be asked to complete the questionnaires associated with this study.

For more information about this study, please contact the Aging, Residents, and Caregivers Research Unit at: [email protected].

2. Caregiver Reported and Weighted Dementia Outcome Measure

McMaster University is in the process of developing a new dementia measure. Because caregivers are critical in judging the real-world benefits of treatment and care, the research team at McMaster University want to hear from caregivers about the relevance of questions that are commonly used in existing dementia outcome measures and their perspectives on responsive behaviours.

Participants will be asked to fill out a survey and participate in an online focus group with other caregivers from the dementia community. The survey will take approximately 10-15 minutes and the online focus group will be 45-60 minutes. Participants will be given a $10 gift card for their time.

If you are interested in taking part or learning more about the study, please email: [email protected]  

More information about this study can also be found at: https://redcap.link/CAREDposter

3. Trial of Remotely Delivered Brief Interpersonal Psychotherapy to Improve Social Network Functioning within Caregivers Persons with Dementia

If you provide informal (unpaid) care for someone living with dementia, this study could help you feel better supported in your role and strengthen the communication of your needs with friends and family members. The University of Saskatchewan's Department of Psychology is recruiting caregivers who are willing to participate in weekly interpersonal psychotherapy sessions over Zoom for a period of approximately three months. 

During your involvement with the study, you will be asked to:

• Undergo a brief screening/intake assessment;
• Fill out some questionnaires;
• Attend 11 to 13 weekly treatment sessions, each of which is approximately 60 minutes. Sessions will take place during early evenings and weekends.

For more information, please contact August Kortzman, Graduate Student, University of Saskatchewan at: [email protected] or 306-966-5925.

4. Dementia-Inclusive Home and Community Care

The Canadian Standards Association wants to hear from to persons living with dementia, essential caregivers, and home and community care providers about best practices related to home and community care. Their study will also ask participants about existing gaps and perceived challenges and issues with home and community care to inform the development of standards for dementia-inclusive home and community care.

What will happen during the study?

Participants will be asked to complete a short survey and/or an interview that will take approximately 30 minutes. Interviews may be conducted virtually or by telephone. By participating, you may choose to enter a draw to win one of three $75 gift cards to an online retailer of your choice.

To access the survey in English, click here.

To access the survey in French, click here.

Note: The survey closes August 25, 2022.

If you have any questions, would like to participate in an interview, require assistance to complete your survey, or if you would like a hard copy version of the survey, please contact Dr. Jeanette Prorok, Research and Evaluation Consultant – JPRO Research & Consulting at [email protected] or 613-449-7133.

5. COVID-19 Experiences of People Living with Dementia and their Care Partners

This study is taking place in Saskatchewan, Ontario, Alberta, and Quebec and has the potential improve the care of older adults with dementia during and after the COVID-19 pandemic.

People over the age of 65 who are living with dementia and their care partners are invited to share their experiences with health and social care services during the pandemic. Participants will be asked to complete a 60-minute phone or Zoom interview at a time that is convenient for them.

For more information or to express your interest in this study, please contact: Shoshana Green, Research Coordinator - University of Saskatchewan at (306) 966-2394 or [email protected].