Kathleen Vanderlinden enjoys being out in her community. A walk through her neighbourhood. A visit to the public library. Time spent at the YMCA. "I'm the type of person who needs to be around people," she says.
But dementia can make these everyday moments harder than they should be. Busy traffic feels overwhelming. People can be impatient. As Vanderlinden puts it, "The world is going so fast."
Vanderlinden, who lives with dementia, is a co-investigator with the Dementia Capable Communities (DCC) project team in the University of Waterloo's Faculty of Health. By sharing her insights and experience, she's helping communities rethink how they plan and deliver everyday services so that people living with dementia are respected, supported and included.
A change in perspective
Dr. Laura Middleton, associate professor in Kinesiology and Health Sciences and Schlegel Research Chair in Dementia and Active Living, is DCC's principal investigator. Her research focuses on identifying strategies to promote the well-being and independence of those living with, or at risk for, dementia.
Middleton's interest in dementia research is deeply personal. Her aunt was diagnosed with young onset dementia at age 46. "It had a tremendous impact on my family. My cousins were only 12, 14 and 16 at the time of diagnosis," she says.
Over time, Middleton's research focus expanded from work on reducing dementia risk; she became increasingly committed to improving daily life for people living with dementia and fighting the stigma around the condition. Perceptions of dementia are often shaped by portrayals of those in the end stages, she says, leading people to overlook the needs of those in earlier stages.
A pivotal moment came when Middleton heard dementia advocate Mary Beth Wighton speak about inclusion as a human right. The message was clear. People living with dementia have wisdom to share and a right to participate fully in their communities.
"She changed my approach to research from a biomedical lens to a human rights perspective," Middleton says.
That perspective continues to shape DCC's activities.
Collaborating to meet a complex challenge
DCC began in 2021 with support from the Government of Canada's New Frontiers in Research Fund, which supports interdisciplinary research addressing complex challenges.
Dr. Samantha Biglieri co-leads DCC. She's a professor at Toronto Metropolitan University who studies dementia-inclusive planning; Middleton first met her through a research network at Waterloo.
"We realized we were working toward the same goals, just from different angles," Middleton says.
From the start, Middleton and Biglieri knew this initiative needed a multi-disciplinary approach. Dementia affects how people move through cities, access services, use transportation, take part in recreation and feel welcome in public spaces - and DCC's project team reflects that reality.
Building inclusive communities
DCC uses a participatory action research model, meaning people like Vanderlinden, who live with dementia, are involved at every stage, from shaping priorities to guiding decisions.
The project team formed steering groups and hosted community workshops that brought together people living with dementia and partners from across the Region of Waterloo, including representatives from transportation services, municipal planning teams, police services, community organizations, cultural groups and places of worship.
Many participants arrived without having thought deeply about dementia inclusion before. They left with a clearer understanding of what needs to change.
For example, Middleton remembers Vanderlinden discussing the challenges of booking rides through Grand River Transit's accessible transportation service with a GRT representative. Within weeks, Vanderlinden noticed positive changes in the service, with more flexibility and a better experience overall.
"When people living with dementia are part of planning conversations, solutions can happen faster and fit real needs," Middleton says.
And, she notes, when communities plan for people living with dementia - through clearer communication and more thoughtful design - they benefit everyone.
Tools communities can use
The Dementia Capable Community Action Plan (PDF), a practical resource for municipalities and community groups, is a key outcome of the DCC's work. The plan outlines a shared vision of dementia inclusion and offers steps communities can take over time and adapt to local needs.
DCC also created free online learning modules that introduce dementia, explain the rights of people living with dementia, and share simple strategies anyone can use to support inclusion. Additional tools include journey maps that show the supports and barriers a person living with dementia might encounter during everyday outings.
Advancing a healthier future
In 2019, the federal government passed the Accessible Canada Act to ensure equal opportunities for people with disabilities by creating a barrier-free society by 2040. DCC's action plan not only provides practical steps toward this healthier, more inclusive future, it explains why it's so important.
"People living with dementia remain people. They are community members who we should support and value," Middleton says. "They have a range of abilities, experiences and wisdom to share with us, and we all have a role to play in supporting their participation."
Perhaps Vanderlinden says it best: "I'm just like you."
Hear more about how to help build a Dementia Capable Community in a free, online talk on Monday, January 12. Learn more and register.
