stranger than family

Currently Recruiting:

If you are interested in learning more or would like to participate please email Dr. Celeste Pang at celeste.pang@mail.utoronto.ca

Background Information:

Who is being interviewed for this study? This study includes interviews with people in Alberta and Ontario who:

  • Are facing dementia alone OR
  • Are healthcare and social service workers and other professionals who have tried to connect adult clients with a substitute decision-maker OR
  • Have been substitute decision-makers for someone living with dementia who is not a close family member or close friend AND
  • Are able to participate in an interview in-person, over the phone, or on Zoom

Participants are welcomed to have another person or people present at the interview for support, comfort, and/or facilitation, or any other reason. I will work with you to make the interview as accessible as possible.

What is this study about? This study explores how ideas about capacity, consent, and decision-making affect people who are facing dementia alone and non-family, non-friend others who become their substitute decision-makers.

It asks: How do people who are not close family members or friends become substitute decision-makers for people who are facing dementia alone? How do ideas about consent, capacity, and decision-making affect people facing dementia who are “going it alone” and people who are not close family members or friends who become substitute decision-makers?

Who is conducting this study? Dr. Celeste Pang is conducting this study. Celeste is an anthropologist and has done research focused on aging, disability, and care, among other topics. This study is part of a postdoctoral fellowship at the University of Toronto, supervised by Dr. Janelle Taylor.

Who funded this study: This study is funded by the Alzheimer Society Research Program.

What are the goals of this study? The goals of this study include:

  • To better understand how people who are facing dementia alone find or are connected with substitute decision-makers who are not close family members or close friends.
  • To better understand how social ideas about “consent”, “capacity”, and “decision-making” shape substitute decision-making frameworks, and how substitute decision-makers act in their roles.
  • To identify opportunities for advocacy, policy, and practice change to better support people facing dementia alone and others involved in supporting and advocating for them.

What assumptions and gaps does this study explore? Currently, substitute-decision making is critical for people with dementia who others understand to be unable to make certain decisions related to their healthcare and finances. It is often assumed that close family members or close friends will be carers and advocates and take on substitute decision-making roles. But not every person facing dementia has a family member or friend to turn to. There is limited research into how people who are not close family members or friends become substitute decision-makers for people who are facing dementia alone, and the ways that representation is sought, secured, and carried out.

This study has received ethics approval from the University of Toronto Social Sciences, Humanities & Education Research Ethics Board (Protocol #43470).