Becoming a Compassionate Community

The following article is part of a series following two multi-year projects bringing together social heath movements to improve quality of life for those facing health challenges. The Compassionate, Dementia Inclusive Communities (CDIC) project, supported by a contribution from Health Canada, brings together Compassionate Communities, Dementia-Inclusive Communities, and Nav-CARE in 6 sites across Canada with the aim to reduce stigma, raise awareness, and offer empowering supports for people living with dementia to age in place. The second project, funded by the Canadian Institutes of Health Research, builds on the strengths of two social innovations, Nav-CARE and Compassionate Communities, to create a new model of volunteerism called Compassionate Communities Volunteer Navigation (CCVN). This involves implementing a Compassionate Communities approach in four rural communities in British Columbia that have an existing Nav-CARE volunteer navigation program.

According to the BC Centre for Palliative Care, a Compassionate Community is a community of people who are passionate and committed to improving the experiences for those living with a serious illness, caregiving, dying and grieving. It’s a community

• where people support each other during serious illness, end of life and grief
• where people plan in advance for the way they want to be treated and cared for during serious illness and near end of life
• that helps its people to live well and with dignity right until the end

As part of the implementation process for these two projects, sites formed a Co-Leadership Team made up of 2-3 individuals representing at least two community organizations to lead the CDIC and CCVN projects in their communities. We spoke with the Co-Leads to learn about what Compassionate Communities means to them and what impact they hoped the Compassionate Community approach would have in their communities.

The Compassionate Community movement centres on educating the public about declining health, caregiving, palliative care, grieving, and bereavement. Co-leads saw that such awareness campaigns are important to help dispel fear, stigma, and misconceptions about these topics. This was especially vital in relation to dementia; as one Co-lead observed, “so often with dementia or with people at end of life, it’s kind of a taboo topic and people don’t want to talk about it. So, how can we open that dialogue? How can we open our hearts to people that are living those journeys?” For many of the Co-Leads, education was about reshaping the narrative of dementia from one based on loss and decline to one that centres on agency, dignity and personhood. For one Co-Lead education “is about seeing people with dementia as people with capacity, with passions, with lives, and helping the community to see that as well. Awareness efforts also aim to “generate lots of discussion and conversations in the community, and get people thinking about not only the services that are there, or perhaps weren’t aware of, but getting them to think about how important, as the population continues to age, having that knowledge and that information available to them. I mean, knowledge is power.” In rural areas with limited health services empowering community members to learn more about these topics and “take a bit more responsibility for their own end of life planning” is essential.

Equally vital to becoming a Compassionate Community is neighbourly support. Co-leads spoke about how Compassionate Communities truly flourish when neighbours know each other and step in to help during life’s most challenging moments. “The sign of a healthy community when people, you know, reach out or help each other,” one Co-Lead explained.  “If we have the compassionate community that we are hoping we do, well then you’ll find that someone is going to be there to help you.” Another Co-Lead added that such support makes their community “an even more wonderful place to live, because the people will feel that they matter, that people care about them, that their end days, when it comes to that, will have a lot of safety and loving support around themselves and their family members.”

However, these community-building efforts require “a caring community approach” animated by meaningful collaboration and coordination across organizations. Implementing a Compassionate Community approach widens the circle of care, bringing together everyone, not just healthcare workers, to support individuals and families during illness, dying, and grief. As one Co-Lead reflected on the richness of local organizations already providing vital services, the real opportunity lies in “…a little more coordination around knowing who’s doing what. All of us are trying to get some more volunteers for whatever we’re doing. But the idea of the right hand and the left hand talking to each other and benefitting from the connection so that we can all do more and be more available.” By working together, the goal for that rural community is to create a caring environment that promotes dignity and compassion in every stage of life.

Moreover, another Co-Lead described how a compassionate community approach can deepen more meaningful collaboration: “… I like the word compassionate because it’s one thing to just collaborate, you know, and say just go and talk to so and so and so and so, and, you know, it’s all sort of very, you know, regimented, if you will. But the compassionate piece in that- having the listening skills to hear what people need and are lacking, if you will, or they don’t even know they are lacking- and connect those dots and make some kind of a change or an impact.”

In essence, Co-Leads reflect that becoming a Compassionate Community weaves public education, neighbourly support, and coordinated partnerships into a framework that helps dispels taboos around decline, dying, caregiving, and grief. By pairing informed awareness with genuine human connection and cross-sector collaboration, communities ensure practical resources are matched with human empathy along the life course.

How do we assess our communities in terms of its readiness to become a compassionate community? The next article in this series will explore the Compassionate Community Index survey and explain how it was used (and modified for the CDIC project).