Terms of Use

People of Dementia is a not-for-profit project to raise awareness for dementia. Content within the stories does not necessarily reflect the opinions of any or all members of our supporting organizations including the University of Alberta Department of Family Medicine, Alberta Health Services, Versett, The Alzheimer Society, Caregivers Alberta, Covenant Health, and The Good Samaritan Society. None of the investigators or participants have any relationships, financial or non-financial, that, if not disclosed, could be construed as a conflict of interest in this project. Formal consent was obtained by all participants prior to commencement. This research has been approved by the University of Alberta Health Research Ethics Board. All stories and their content have been approved by their respective participants prior to publication. By viewing our web page and completing our survey (coming soon), you consent to the collection of data with no specific identifiers. Any responses will not contain identifying information. Permission to share stories and photos has been obtained for up to 2 years. Interested parties may link to this website, but content may not be reproduced in whole or in part without written consent.

Who can participate?

The subject must have been diagnosed by a medical doctor with a form of dementia including mild cognitive impairment, be able to meet in the greater Edmonton, AB, Canada area, and have the ability to have at least one care partner or support person present during the interview.

Requirements

Formal written consent of the subject and their care partner(s) will be obtained prior to beginning.
Participants will be asked to meet at a safe, mutually agreeable location with a photographer/writer.

The participants will:

  1. Have photos taken  (1–5 pictures published in the story online). These photos will be carefully edited.
  2. Be asked a short series of questions focused on memorable details of their life, as well as their journey with dementia.
    This may be tape recorded.
  3. Give permission to have their story posted online. All subjects will have an opportunity to review the story prior to publication.

Being involved this study is voluntary. If any participant chooses to withdraw post publication, their story will be deleted and no further data will be collected on it. Choosing whether to participate will not affect the healthcare services persons receive. Risk of participation is minimal and is related to the possible public recognition that may result from participation and disclosure of medical diagnoses. Only persons capable of providing consent will be enrolled in the study, and consent can be withdrawn at any time.