At the Murray Alzheimer Research and Education Program (MAREP), our mission is to maintain a partnership approach in the production of all our educational resources. We partner with the people whom we make these products for, to ensure that we are accurately representing them.

We are currently recruiting participants for the following projects:

If you are interested in participating in any of these projects, please contact Lisa Loiselle

Young Onset Dementia By Us For Us Guide

MAREP at the University of Waterloo has brought together a team of persons living with young onset dementia and researchers to investigate this topic and develop a 14th guide in the By Us For Us© (BUFU) series. Your questionnaire responses will help develop the content for the guide.

Completion of the questionnaire would take approximately 30 minutes of your time. The purpose of this questionnaire is for us to gain in-depth knowledge on concepts such as strategies people living with young onset dementia use in order to maintain their daily routines and overcome challenges. We also want to explore factors (such as work, family, finances, etc.) that become impacted once an individual is diagnosed with young onset dementia.

Things to know before you make your decision:

  • Participation is completely voluntary.
  • There is minimal risk anticipated with participation. The topics under discussion, specifically the participants experience with their diagnosis could potentially cause some psychological and/or emotional distress for participants.  If you become upset, we recommend that you contact a support counselor or social worker at your local Alzheimer Society.
  • You do not have to answer all the questions or submit your responses if you don’t want to and can stop participating at any time by simply closing the browser – this will not impact your relationship with MAREP or [organizational sending the email].
  • The answers to your questions will be kept confidential. All responses will be grouped together.
  • Your name will not be identified with the questionnaire unless you give us permission to do so at the end of the questionnaire.  We will be selecting between 5 to 8 quotes from all of the data collected to include in the guide. Further, you will not be identified by name in the report that MAREP produces for this project.
  • All data, including field notes, audio recordings, and questionnaire responses, will be kept for a period of seven years in the secured offices of MAREP or a secured network on the University of Waterloo server. After such time, all materials will be securely shredded and deleted.
  • You will be completing the study by an online survey operated by/hosted by [name of company/website]. When information is transmitted over the internet, privacy cannot be guaranteed. There is always a risk your responses may be intercepted by a third party (e.g., government agencies, hackers). University of Waterloo researchers will not collect or use internet protocol (IP) addresses or other information which could link your participation to your computer or electronic device without first informing you. [Name of company] temporarily collects your [company/contributor] ID and computer IP address to avoid duplicate responses in the dataset but will not collect information that could identify you personally.
  • MAREP will summarize the questionnaire data in an upcoming issue of Innovations, our newsletter that is published three times per year (https://uwaterloo.ca/murray-alzheimer-research-and-education-program/education-and-knowledge-translation/newsletter).
  • This new By Us For Us© guide will be available through MAREP (https://uwaterloo.ca/murray-alzheimer-research-and-education-program/education-and-knowledge-translation/products-education-tools/by-us-for-us-guides).

This study has been reviewed and received ethics clearance through a University of Waterloo Research Ethics Committee (ORE# 22077). If you have questions for the Committee contact the Chief Ethics Officer, Office of Research Ethics, at 1-519-888-4567 ext. 36005 or ore-ceo@uwaterloo.ca.

If you have any questions about participating, please feel free to contact me, Lisa Loiselle, Associate Director of Research at MAREP at 519-888-4567, Ext. 35040, or loiselle@uwaterloo.ca.The final decision about participation is yours. By completing the submitting the survey, you are implying your consent to participant in the research study. By providing consent, you are not waiving your legal rights or releasing the investigator(s) or involved institution(s) from their legal and professional responsibilities.

If you would like to complete the questionnaire online, click on the link provided below:

http://fluidsurveys.com/surveys/lisa-loiselle/bufu-young-onset-dementia/

Further information: Young Onset Dementia By Us For Us Guide