The By Us For Us© Working Group from the Murray Alzheimer Research and Education Program (MAREP) at the Schlegel-University of Waterloo Research Institute for Aging (RIA) in partnership with Behavioural Supports Ontario.
They are inviting people living with dementia and their care partners to take part in the development of a new By Us For Us© information guide on the topic of dementia and social isolation. The purpose of the project is to learn about how dementia might affect social inclusion and how people engage with their community after a dementia diagnosis. We also want to learn about strategies they might use to overcome challenges with keeping socially engaged in their community.
The are inviting people living with dementia and their care partners to participate by attending an online focus group, telephone interview or filling out an online or paper survey. Paper copies of the survey with return (postage paid) envelopes can also be requested.
- An adult (over the age of 18) who has been diagnosed with dementia and can provide consent to participate.
- An adult (over the age of 18) who is a family/friend care partner for a person living with dementia and can provide consent to participate.
How you can participate:
We invite you to take part in this project by completing one of the following options:
- Completing an online (see link below) or paper survey on the topic of social isolation and dementia. Completion of the survey should take no more than 30 minutes of your time.
- Participating in a 90-minute focus group either in person or via videoconference that will be facilitated by a BUFU© working group member (people living with dementia, care partners, health care professionals). Focus groups will be audio-recorded for the purpose of taking notes. Focus groups will be held in September.
- Participating in a 30-minute interview via telephone that will be facilitated by a BUFU© working group member (people living with dementia, care partners, health care professionals). Interviews will be audio-recorded for the purpose of taking notes. Interviews will be conducted in September.
- Participation is completely voluntary.
- We anticipate minimal risk to participating. Talking about your experience with dementia may be challenging. If you find that the questions are upsetting in any way, we recommend that you contact the
Alzheimer Society for support: 1-800-616-8816 or firstname.lastname@example.org
- You do not have to answer all the questions if you don’t want to and can stop participating at any time by simply closing/exiting the survey on your computer, or leaving a focus group, or letting the interviewer know you no longer want to participate. This will not impact any services you receive or the relationship you may have with MAREP.
- Your identity will be kept confidential, unless you provide us permission to use your name or photo for a quote.
- If you participate in an online survey or focus group, you will be using an online form or Zoom videoconferencing. When information is shared over the internet, privacy cannot be guaranteed. There is always a risk your responses may be seen by a third party. Information will temporarily be collected about your computer/device, but it will not collect information that could identify you.
- Information collected will be stored on a password-protected computer or in a locked cabinet to respect your privacy for a minimum of seven years. After a minimum of seven years, all information and materials will be securely shredded and/or deleted.
- After the project (May 2021), copies of the BUFU© guides will be available on the RIA website https://the-ria.ca/resources/by-us-for-us-guides/
- This study has been reviewed and received ethics clearance through a University of Waterloo Research Ethics Committee (ORE#42066).
If you would like to complete the online survey, click on the link below:
Focus group or interview
If you would like to participate in a focus group or interview please contact
Sian Lockwood (contact details below):