Study aims to help immigrants living with dementia thrive in their communities.
This article was written by a guest contributor, and the views, thoughts and opinions expressed in this article belong solely to its author.
The places we live in can have a big influence on our health and well-being, and this is no different for people living with dementia and the people who care for them.
Previous research has shown that for people living with dementia, continuing to access their neighbourhood means improved mental, social and physical well-being.
Crucially, we know that social and built environments can either support or prevent people living with dementia from accessing their neighbourhoods — from how they interact with people in their neighbourhood and how far parks, shops and community centres are from their home, to how comfortable it is to walk and cross streets or to use public transportation systems.
However, existing research tends to ignore the unique experiences of immigrants in suburban areas, and how people create networks of care in their own communities to be able to live well.
To address the research gap, the Care and Dementia in the Suburbs project was created in Scarborough, the most diverse suburb in Canada’s largest city (Toronto).
About the study
Care and Dementia in the Suburbs' purpose is to understand which social and built environmental elements in suburban communities influence the everyday experiences of immigrants living with dementia and their care partners — or what we call a “triad” (a person living with dementia, a care partner and a personal support worker).
The goal is to help urban planners and municipalities understand how to build neighbourhoods that make immigrants living with dementia and their care partners feel more comfortable, safe, supported and included.
The role of participants
Participants will decide to either participate in an abridged version of the study, which has three phases, or the full study, which has five phases.
Option 1: The abridged version
This shorter version uses sit-down interviews and go-along interviews. It includes opportunities for participants to express themselves using artistic methods, such as creating sketch maps of their communities and mind maps of their relationships.
It will take participants approximately five hours over the course of a few visits, depending on participant preference.
Option 2: The full version
The full version includes all the phases mentioned above but adds the options of taking photos and tracking a participant's everyday travel using a GPS and travel diary.
It will add up to two weeks more time for participants, since photo-taking and travel-tracking are included.
Our commitment to accessibility
Photo courtesy of Getty Images.
For some people living with dementia, semi-structured and structured interviews can be challenging due to the methods’ reliance on abstraction, recall and verbal reporting. Offering some phases as optional and combining interviews and artistic methods will allow participants to express themselves in other ways than just talking, letting them engage with the research in a way that suits them best.
Consent and confidentiality
Our study has been designed to enable us to collect express ongoing consent from our participants. This means a researcher will reconfirm the consent of the participant at the beginning of each phase before proceeding with the study. You are free to withdraw from the study at any time and for any reason. All your data will be kept secure and confidential.
"Through this study, we hope to understand what could be changed about suburban communities to make them more accessible and supportive to immigrants living with dementia and their care partners."
– Samantha Biglieri
Who can participate?
We are looking for three types of participants for this study, who form a “triad”:
People living with dementia who:
Self-identify as an immigrant to Canada.
Live at home.
Live in Scarborough.
Care partners of people living with dementia (e.g., spouse, family member) who:
Live with the person they care for.
Live in Scarborough.
Care workers (e.g., personal support workers) who:
Have completed all schooling and training related to their care work.
Have a client who lives in Scarborough.
Cash amounts may vary depending on the amount of time participants can commit to the study. But they will receive at least $100 in cash within two weeks of completing the abridged version phases.
Photo courtesy of Getty Images.
Impact: Building accessible and supportive communities
Contrary to popular belief, most people living with dementia live at home in their communities, and they deserve to access the outdoors like anyone else.
Planners and municipalities make decisions every day about how to build sidewalks, where to put stores, where to put different types of homes (such as apartments or bungalows) and public transit lines, as well as what features a park or plaza should have (such as benches or play structures for children). They also make decisions about the social programming and policies that are put into communities.
We hope this study helps us understand what changes suburban communities need to make them more accessible and supportive to immigrants living with dementia and their care partners. We hope these results can influence city planning in the future.
Readandshare more articles about innovative research aimed at helping you to live well with dementia.
ABOUT THE AUTHOR
Samantha Biglieri, PhD, MPI, is a senior consultant with the Biglieri Group Ltd., and an assistant professor at Toronto Metropolitan University's School of Urban and Regional Planning. She obtained her PhD in Planning from the University of Waterloo and was a SSHRC postdoctoral fellow at York University.
She currently serves on the Board of Directors for the Toronto Council on Aging. Her work has been featured in academic journals and industry publications, at international conferences and by media organizations such as CBC Radio.
Biglieri is the principal investigator of the Care and Dementia in the Suburbs study.