Empathy: The Key to Building Dementia-Inclusive Communities

Building dementia-inclusive communities starts with empathy, which is cultivated through the sharing of insight and experience. While we can learn biomedical facts about dementia and understand its progression, true inclusion comes from listening closely to the stories of people living with it, hearing the perspectives of care partners and families, and remaining open to the reality that everyone is navigating their own challenges. Approaching others with curiosity rather than judgment fosters compassion, builds trust, and makes space for diversity and a shared sense of belonging.

Across Canada, the six sites involved in the Compassionate Dementia Inclusive Communities (CDIC) project have been hard at work developing interventions and campaigns aimed at reducing stigma, raising awareness, and supporting dementia inclusion. The multi-year project, supported by Health Canada, integrates three social movements—Compassionate Communities, Dementia-Inclusive Communities, and Nav-CARE. Each site has formed interorganizational teams to coordinate and implement these targeted efforts focused on developing insight to strengthen community understanding.

To start off, all six teams mapped out local organizations with whom they had strong relationships, then built out a variety of insight-sharing campaigns, giving presentations to community groups at recreation centres, church halls, and local business associations; producing radio, social media, and newspaper awareness-building campaigns; developing flyers and brochures to distribute widely; conducting surveys; and attending myriad local seniors’ fairs, increasing their visibility and making space for people to share their experiences.

One team focused on normalizing conversations about dementia. They listened and connected with members of the local community, prompting folks to come forward and share their experiences of dementia, and how the condition impacted their lives and the lives of loved ones. Another team offered a dementia training workshop grounded in lived experience for volunteers and members of the community. Rather than focusing on biomedical details, organizers invited people with lived experience and their care partners to share stories, talk about what dementia feels like, and give participants a deeper sense of how they’re greeted in community on a regular basis.

Other teams set up bereavement cafés and dementia support groups and produced toolkits for caregivers. One team hosted an event with immersive activities that offered people a sense of what it’s like to live with the condition—and why listening to and supporting people with dementia matters so profoundly. In all these cases, sharing insight—building awareness, normalizing conversations about dementia, and encouraging more inclusive attitudes and behaviours—was the focus. As one CDIC team member put it, “when someone living with dementia shares their story… it’s empowering for the storyteller and eye-opening and deeply moving for the listener.”

In honour of International Alzheimer’s Awareness Month, we want to highlight the innovative and impactful work the CDIC project has developed on the ground to make way for dementia inclusion nationwide. When local communities are given the gift understanding what it all feels like so they can empathize with people living with dementia, collective compassion grows. The authentic compassion that comes from putting yourself in someone else’s shoes makes it easier for people to connect with and support each other, fostering trust and a sense of belonging for all.