Building an Online Support Community

It’s not easy facing life’s challenges alone, and that leaves us all yearning for support and understanding. But what do you do when you’re too afraid to discuss those challenges face to face with someone?  Maybe we’re afraid of judgment (or we don’t want to receive the sympathetic looks). Maybe we’re just busy and overwhelmed. Who knows… but what makes it super easy nowadays is… we can just hop online and bare our souls behind the shield of a screen. For organizations founded in this idea of offering support, this can present unique challenges because building a virtual community can be tough!

In today’s episode, I’m joined by Christine Prysunka, with the Alzheimer’s Society of Alberta and NW Territories. She has been an integral part of building the ASANT Cafe, an online platform for the Alzheimer’s Society, and now Dementia Talk, their latest adventure in offering education, awareness, and support through an online community. The mission of Life With Dementia podcast is to make life easier for people living with dementia by improving access to resources and building community support. We believe we can do this by highlighting solutions that drive that mission home. So it was logical that we invited Christine to be our guest on this episode, and here are the action steps we talk about.

If you’re trying to build an online community or improve your existing virtual support tools:

  1. Scan other platforms and social media outlets and see what’s being talked about in various discussion forums. This will help you tailor content to what people are looking for and engage a wider audience base. You can’t build an online community without users, and this tactic can help you increase engagement, hopefully driving up usage.
  2. Collaborate with local schools and universities. They work with hundreds of students a year, who have to apply their area of research into real-world application. By partnering, you can further your reach and highlight innovation in care and services.
  3. Now  — If you’re living with dementia, or someone else who is, don’t be afraid to talk about your experience. In fact – please speak up! Share your knowledge and participate in online discussions. We learn best from the true “lived-experience”.
  4. And take note of Christine’s message – to view the dementia diagnosis as an opportunity to use your voice and push for change in cultural perceptions surrounding this disease.
  5. Lastly, remember that for people living with dementia, it’s the simple experiences that count. Translate that tip into action by making sure that you’re doing all you can to include those living with dementia, into the tasks and routines of daily life. No matter what level of ability is present, a person’s voice and choice matters. We all want to feel valued and respected.

Join us on Life With Dementiathe solution-driven podcast, sharing relevant research, personal stories, and practical tips for living well with dementia.

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Show Notes:

Alzheimer’ Society of Alberta & NWT https://alzheimer.ca/en/Home

Dementia Talk https://discussions.dementiatalk.org/

ASANT Cafe www.asantcafe.ca

David Sheard www.dementiacarematters.com/

Brain Xchange webinar: Rehabilitation as the Future of Dementia Care https://vimeo.com/302120238

Yes. I live with Dementia. Let me help you understand. https://ilivewithdementia.ca/

Photo credit: Tim Marshall on Unsplash

Music Credit: Blue Dot Sessions “OneEightFour”

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