October 29th, 2019
Event Creates Dialogues of Hope and Kicks off New Initiative to Foster Social Citizenship of People Living with Dementia.
On September 22nd and 23rd, the North West Dementia Working Group (NWDWG) hosted an event aimed at making a difference in the lives of people living with dementia. On Sunday, Lakehead University’s Centre for Education and Research on Aging & Health (CERAH) who supports the NWDWG, and Urban Abbey hosted a special Dementia Café: A Place to Belong, offering coffee, food, socializing and music, and featuring the Pelimanni Orchestra playing Finnish folk music. Over 125 people attended, including people living with dementia, care partners, and community partners.
On Monday, many of the same participants attended the Living Well with Dementia: Creating Dialogues of Hope conference. The keynote speaker was Roger Marple, from Medicine Hat, Alberta. Formerly a professional in the health care field, Roger was diagnosed with young onset dementia at the age of 56. Now 61, he participates actively in the Alzheimer’s Society, and speaks regularly across the country about his experience. His talk fostered a strong dialogue on topics such as stigma (represented by dementia jokes), disclosure, and foregrounding hope in our educational efforts. Roger was greeted with a standing ovation as he finished his address.
The afternoon plenary was given by Dr. Laura Middleton of the University of Waterloo, who presented a fascinating talk on fitness interventions for people living with dementia, and their impact on physical, individual and social well-being. One of Middleton’s slides showed a quotation on stigma from one person early in the dementia journey, who had been overwhelmed by the negative stereotypes of the condition: “If this is what dementia means, then I don’t want to have it.” Middleton shared new research showing how through fitness (for example the Golf for Life program), social inclusion can be fostered, and stigmatizing stereotypes challenged.
In addition to the plenary presentations, audience members engaged in small-group discussions, one about “Planning Ahead”, and the other about stigma, facilitating reflections about what the experience meant, what the impact was, and strategies for addressing it. During the discussions, a care partner echoed the sentiment relayed by Dr. Middleton, explaining that early on his families’ dementia journey they saw the Alzheimer’s Society as a “club we didn’t want to join.” He talked about the Café as a welcoming place, which acted as a bridge to other resources in the community such as the Alzheimer Society. Others talked about how they’d found help through the Society and also connected with wonderful people.
Another highlight was when the speakers were joined on stage by local advocates from the NWDWG and participated in a dialogue with the audience. One panelist, Clara Mersereau, talked about the importance of helping people early in their journey, so they don’t lose hope and become isolated. Reflecting on her own positive experience with being part of the NWDWG and participating in the Dementia Café, she said she now felt a strong sense of belonging, that she had “found her voice, and that having dementia had actually “expanded her life.” Another panelist, Susan Bithrey, whose husband had recently passed away, reflected on the importance of creating space for her partner to make decisions. She also affirmed the importance of hope, saying, “The more people see folks living with the disease out in society and still doing well, the less afraid they’ll be.”
In Thunder Bay, we held a conference called “Living Well with Dementia: Creating Dialogues of Hope” on September 22& 23, 2019. The first day included attending the Dementia Café, a presentation and barbeque. The second day was a full day of 5 sessions, including presentations, panel presentations, & display booths. Three of the sessions included presenters with lived experience, including the keynote speech. The conference included an evaluation which is still underway. Four in five conference attendees indicated that they were “very satisfied” with the forum overall. Approximately 90% of respondents (N = 33) agreed or strongly agreed to the statement “I have learned new strategies or “tips” for living with dementia”. Written feedback from the conference has been very positive. The public may benefit from a similar event in the future.
For more information, see Evaluation: Quick Report (link)
Kick off of a new Initiative
In addition to coordinating the two-day event, Lakehead University’s Centre for Research on Aging & Health (CERAH) also hosted colleagues from Vancouver who were in Thunder Bay to participate in the conference as well as kick off an exciting new four-year initiative. Funded by the Public Health Agency of Canada, the project is called Building Capacity for Meaningful Participation of People Living with Dementia. The initiative’s goals are highly congruent with the conference, focusing on helping people living with dementia to attain social citizenship, in other words to remain connected, and participate actively in their communities, free from stigma.
The initiative provides funding to facilitate asset-based community development, meaning that each community will be supported to envision what social citizenship means, and using existing community resources, develop grassroots initiatives that may include arts-based, fitness, volunteer, and other social initiatives. The first step at each site will be to map existing assets. The project will then bring people together for local community conversations, in which they can engage people living with dementia and care partners, share success stories from other jurisdictions, and discuss new possibilities for their own communities.
Building on the community conversations, the project’s three main objectives going forward are to create new initiatives, to conduct a developmental evaluation to understand what’s working, and then to build on success by sharing the findings more widely, so that initial approaches can be scaled up, both within and outside the two project sites.
The partnership between the two cities creates a unique opportunity to foster cross-project learning and build on each other’s successes. For instance, Thunder Bay’s Dementia Café may provide a model for the Vancouver Site, and the NWDWG may provide a model of how to actively engage people living with dementia. Vancouver’s convening agency, the Westside Seniors Hub, may provide a model for how multiple seniors-serving Partner Agencies can lever their existing resources (such as community centres, libraries, faith-based agencies) to create more inclusive, welcoming neighbourhoods. At present, the steering group is planning an event in Vancouver to present the asset mapping findings, hear international success stories, and prioritize next steps for the implementation and evaluation strategy.