Hub Community Action That Builds Capacity
The Dementia Ventures project empowers Hub Partners to build out inclusive community programming for all and adapt to include people living with dementia. They and their care partners want to remain socially engaged in meaningful activities. A collaboration with UBC’s Dr. Alison Phinney and her Building Capacity team offers financial, strategic and logistical resources so programs can welcome and support those with dementia and their care partners.
We celebrated midway in this initiative with a series of vibrant online community dialogues.
The theme was: “What it means to be an accepting and inclusive community.”
SoundBytes wants to share wisdom from those dialogues.
Here are our first nuggets. There will be many more!
BC-based artist and advocate Granville Johnson spoke out about fear and the power of our perspective on Dementia Dialogue's most recent podcast episode, addressing the ways we can choose to gain some sense of control and joy back into our lives even in the face of new challenges.
PERSPECTIVE IS EVERYTHING
In the most recent podcast episode of Dementia Dialogue, Dr. Alison Phinney discusses the stigma attached to dementia diagnoses and how that impacts community support efforts. She speaks with host Lisa Loiselle and fellow podcast guest Granville Johnson, who lives with dementia himself, about the important balance to be struck between training and education on one hand, and engaging with people with lived experience on the other.
WHAT HOLDS US BACK
Karen Rolston’s mother Louise started getting inklings something was a little “off” back in 2011. At the time, the Rolstons were already in the process of creating a laneway house on their property for her, so they could live close together. The timing worked out well. Louise lived there for seven years beside her daughter Karen, Karen’s husband, and their daughter. Those years were, “a beautiful opportunity for us to just wrap mom with more support and care while she was able to live in her own space,” Karen said.
When Karen thinks about the journey she has been on with her mom, and the reactions from people when it comes to dementia, the word that comes to mind is fear. “People find out someone has dementia, and they think, ‘Am I going to receive this diagnosis too?’ ‘Is someone I love going to get dementia?’” Rolston said. Fear seeps in and too often, people pull away.
“People often don’t know what to say or do, so they turn away from those with dementia instead of turning toward them with love,” Rolston said.
Rolston is extremely grateful for community supports. Her mom really enjoyed the Alzheimer Society’s Minds in Motion program, the Alzheimer’s Café and the Helena choir she joined. “These community groups are where we felt really held,” she said. “It’s such a painful journey and there is still so much we can do.”
In this Soundbyte, Rolston offers her thoughts on how to really tune into a person’s needs and meet them where they are, rather than seeing their responses as resistance or defiance. Loving and showing up for someone with dementia is about cherishing the now, embracing their world, and accepting what is.
Esteemed Globe and Mail Columnist André Picard wrote Neglected No More: The Urgent Need to Improve the Lives of Canada’s Elders in the Wake of a Pandemic in 2021, a book that discusses what needs to change to shift the culture of long-term care across our country. “Picard reveals the full extent of the crisis in eldercare and offers an urgently needed prescription to fix a broken system and ensure long-term care homes are not warehouses of isolation and neglect” Penguin Random House states on their site.
Care home COVID outbreaks seemed to be exploding in every region of the country at the time, drawing attention to the deplorable working conditions they had for employees, the resulting neglect residents experienced, and the total lack of support for the institutions in general.
In this storyboard, Picard says media needs to highlight not just worst-case scenarios meant to shock and awe, but stories about people living quite well for a long time with dementia. Seeing more people with dementia in our day-to-day activities—including in the news— would normalize that experience as a way of reducing stigma. Lastly, he emphasized the importance of having people with dementia sit on boards and committees on which they get a real vote in the outcomes of important decisions.