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!
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.
Rob Dramer and Lilllian Ireland are self-identified elders who work with the Suzuki foundation mentoring and supporting other elders and younger generations in dialogue and action on environmental issues.
They're also traveling performers who offer a multi-sensory show featuring songs they've written about biodiversity, interspersed with some familiar tunes to help audiences tap into earlier memories.
Music elicits powerful connections, and they invite audience members to join in the fun alongside them and their collection of beautiful local animal puppets.
Myrna Norman is an author, artist, and dementia advocate based in Maple Ridge. In 2009, when Norman was diagnosed with Frontal Temporal Dementia and given eight years to live, she went home ready to die. But after grieving this news for a couple of weeks, Norman decided to do what she’s best at: advocating for change. She became heavily involved in initiatives that let others in her situation know they weren’t alone. Thirteen years later, Norman’s passion, generosity of spirit, and charisma have touched so many lives. Her book, “Dementia Strategies, Tips and Personal Stories,” has become an indispensable voice of validation and support.
Norman has participated in multi-year research studies, art-making groups and task forces including The Dementia Sisterhood, the Dementia Action Committee, Dementia Advocacy Canada, the Dementia Friendly Task Force, and now the Building Capacity Project to name just a few.
She’s also collaborating with researchers and designers at Emily Carr University’s Health Design Lab to develop a series of workbooks geared at supporting researchers to engage in collaborative work with people with lived experience. And to all these roles, she brings her signature energy, compassion, and love for showing people their strength.
A dedicated group of congregation members at Pacific Spirit United Church worked together over the course of a year to create an incredible and insightful four-part series on dementia that you can access online.
They had noticed church members struggling with cognitive decline and family members worried about finding extra care, so they dove in to offer support. Their commitment to fostering a dementia friendly culture at their church has since inspired many other groups to take action too.
For more details go to www.pacificspiritc.com and click on "ministries". The series is under "Beacon *shinning light on dementia."
The Flipping Stigma Toolkit is a project where a group of people diagnosed with dementia partnered with a research team to develop an online toolkit.
This Action Group, funded by a research grant from the Canadian Institute of Health and Research, co-designed the toolkit to help people with dementia recognize and respond to stigma and discrimination -and to help others better understand ho to be supportive-.
The Goa? Flip that fear on its ear.
To learn more visit www.flippingstigma.com
LET´S TALK ABOUT DEMENTIA
THE FLIPPING STIGMA TOOLKIT
Granville Johnson is an artist and teacher whose advocacy work is always led by his passion for lifting people up. In this piece, he talks about the ways his art and his lived experience inform each other.
He sees dementia as an opportunity for insight. “Dementia gives you a chance to express your inner self, the good, the bad and the ugly. And in that expression, there are opportunities to grow.”
He focuses on what he can do, rather than what he can’t.
He believes the more society can get behind the idea of championing strengths rather than focusing on deficits, the stronger our community will become.
Johnson lives in a remote part of Northern British Columbia and thrives in its natural beauty.
Researchers and designers at Emily Carr University’s Health Design Lab use participatory design methods to catalyze, support and amplify initiatives addressing complex health challenges like dementia. “We use design methods to help engage people with dementia in initiatives that directly impact their lives,” said Lab Director Caylee Raber.
The team’s current project is called Collaborate, Gather, Share—a workbook series co-designed by people with lived experience to help drive reflection around how they can be brought into research projects and how best to support those collaborations, recognizing people with dementia as experts.
Their recent video, “Perspectives,” paired design students with long-term care residents. They co-designed and co-wrote mini publications featuring residents’ stories. Students developed creative games and activities to help draw out residents’ stories that they then captured in zines and mini-books, some even embroidered on quilts.
Lastly, the team worked with Vancouver Coastal Health for four years on a project focused on shifting the culture of care in long-term facilities. All the Lab’s work focuses on how researchers and designers can use their skills and expertise to build upon work already being done—facilitating creative expression and self advocacy for people with dementia and getting those messages out to the world.
Author, artist, and dementia advocate Myrna Norman runs a peer support group for others with dementia in her lower mainland community called the Purple Angels Memory Café. The group meets four times a month, and sometimes outdoors in summer when the weather is beautiful. Every second week, it’s the Army and Navy Club for a beer and live music. Members take turns bringing refreshments and treats and have fundraised up to $300 to put towards games and activities they can play together. The group is a wonderful way to connect with others, share similar experiences, and gain support and a powerful sense of belonging. The best part? Membership is free. “The gift [members] give to me is so much more than could ever be paid,” said Norman.
One new member who joined a couple of weeks ago turned to Myrna as he was leaving the Army and Navy Club and said, “Myrna, I feel different now. The music touched something inside of me.”
“I still get the shivers thinking about it,” Norman said of the comment. It’s revelations like this one that drew her to this work.
For more information or to check out the Purple Angels sometime, email Myrna Norman at: email@example.com