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!
PAVING THE WAY FOR OTHERS WITH DEMENTIA
BC-based Lynn Jackson is a retired nurse and highly active advocate for people living with dementia. She's a member of several action groups and continues to blaze a trail for others to live well and feel empowered living with dementia.
A PERSON-CENTERED APPROACH TO DEMENTIA
In a recent Dementia Dialogue podcast interview, BC artist and advocate Granville Johnson reminds us how crucial it is that people with dementia be involved in planning and decision making for initiatives that affect their lives. "Inclusion creates understanding, facilitates empathy, and shares love." For more on the importance of including and respecting people with dementia, please visit buildingcapacityproject.com and flippingstigma.com
STRENGTH IN NUMBERS
This excerpt from a new episode of Dementia Dialogue features UBC's Dr. Alison Phinney on overcoming barriers to community engagement for people living with dementia. Dr. Phinney discusses what she's learned through her extensive research, and how important it is to have a team. Joining her in discussion on the episode is Community Research Coordinator Dr. Andrea Monteiro and BC-based Lynn Jackson, a dementia advocate and retired nurse living with dementia who explains what's been most effective for her.
THE BEAUTY OF INCLUSION
Veteran dementia advocate and Thunder Bay resident Bill Heibein expresses his deep appreciation for the inclusive and warm nature of his local Dementia Cafe and its refreshing lack of labels. "No one asks who's who; they just welcome you in the door." Sounds pretty lovely to us!
Watch Full Event HERE
THE POWER IN THE WORDS WE USE
When John's doctor made a joke out of his dementia, he was deeply hurt. It's these kinds of microaggressions that create the biggest barriers for people with dementia to live well. Words like these that silence people who really need to speak and share. Help us empower people with lived experience to know they're entitled to live their best life too.
PERSPECTIVE IS EVERYTHING
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.
WHAT HOLDS US BACK
The biggest challenge to community support for people living with dementia.
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.
TURNING TOWARDS THE PERSON WITH DEMENTIA
A care partners perspective on what helps.
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.
ON THE MEDIA'S ROLE IN STAMPING OUT STIGMA
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.
On the value of art in supporting the dementia journey...
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.
On the value of art in supporting the dementia journey...
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.
*Shining Light on Dementia
An Initiative to build an inclusive congregation at Pacific Spirit United Church.
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."
LET'S TALK ABOUT DEMENTIA
The Flipping Stigma Toolkit
An Action Group of people living with dementia came together and developed a toolkit to start a conversation about stigma and discrimination in 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
EMILY CARR UNIVERSITY'S HEALTH DESIGN LAB
Emily Carr University's Health Design Lab employs participatory methods to lift up the perspectives of people with lived experience.
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.
The power of seeing our experiences in the stories of others.
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
THE POWER OF SUPPORT FROM OUR FAITH & CULTURE GROUPS
Shared values and perspectives
Reverend Deborah Liang has been a minister in the United Church of Canada for 37 years, the last four at Pacific Spirit Kerrisdale. She's seen how good communities gather around people in both their joys and troubles, contributing immensely to their quality of life. She also served as chaplain at a rural hospital and learned so much from nurses and program staff there about support, respect and care for people with dementia.
RESPONDING TO DEMENTIA THROUGH A CROSS-CULTURAL LENS
Shared values and perspectives
One Vancouver man who has been advocating for the treatment and care of people with dementia ever since his dementia diagnosis over a decade ago, discusses how dementia is viewed through various cultural lenses. He explains how those lenses affect families' and individual's responses to diagnosis and decisions around treatment.
TRUSTING OUR SENSE OF SELF ABOVE ALL ELSE
Shared values and perspectives
BC artist and dementia advocate Granville Johnson talks about the importance of trusting one's sense of self above all else when living with dementia. "The world might not know we're capable, but we can know it and live it and continue to pursue our dreams." Johnson lives in remote part of British Columbia where he's currently working on a novel.
ON BRAVERY AND THE POWER OF SHARING OUR STORY
Shared values and perspectives
When Lester was first diagnosed with dementia, he and his wife and care partner Cindy found that some of their friends and family reacted with disbelief. Others weren't sure how to talk to him. Sharing the Flipping Stigma toolkit with their church and social communities gave the couple a chance to contextualize dementia for those who didn't know much about it. The toolkit allayed fears, provided reassurance, and ultimately resulted in Lester AND Cindy feeling they could open up more about his diagnosis, feel less shame, and share more of their journey with the people they cared about. The toolkit helped them feel much more deeply understood.
HOW FOCUSING ON A PURPOSE BUILDS RESILIENCE
Bill Heibein's journey with dementia.
Bill Heibein continues to live on the farm he shared with his late wife Heather just outside Kakabeka Falls, Ontario. When he was diagnosed with dementia in 2000, doctors told him he'd have about five more years to live "usefully". Twenty-two years later, he has proven them wrong. In addition to caring for his horses, Bill volunteers as an advocate with the Northwest Dementia Working Group, helps run Dementia Cafes in the community, and is passionate about encouraging others with lived experience to get involved, advocate for themselves, and find purpose. Bill says it's that deep sense of purpose that's fuelled his ability to thrive with dementia for so long, and he's confident others can do the same.
MAPPING DEMENTIA-FRIENDLY CULTURE
A community works together to be more inclusive.
When COVID-19 threatened to halt all their efforts in their tracks, Andrea Sara and her team found was to move online, gather virtually, solve problems, and dream big anyway. They worried for seniors who'd been hit particularly hard by increased isolation and wanted to ensure everyone in their community felt seen and supported. So, they went outside. They sought out "soothing spaces" where they could "feel safe socializing". That's how the Fireweed Club came to be. These days the DRA has its hand in so many wonderful initiatives, all which support inclusion, environmental awareness, and social engagement.
ON THE VALUE OF INTERGENERATIONAL CONNECTION
Dementia Educator and community advocate Helen Murphy has dedicated her career to making the North Shore and surrounding communities more dementia-friendly. She provides training for North Shore organizations, speaks to community groups, and volunteers in developing new programs and opportunities for people with dementia to live better lives in a community that is "wise, inclusive and socially integrated".
THE NEED FOR PEOPLE WITH DEMENTIA IN ADVOCACY ROLES
The Building Capacity Project team in Thunder Bay, Ontario partners with the Northwest Dementia Working Group on a number of fantastic community initiatives. The team is very grateful to the NWDWG members who have volunteered to help run some of their Dementia Cafes over the years, for instance, as these cafes are a great opportunity for people in the community to witness for themselves how important representation is, how much capacity there is among people with lived experience, and to be a apart of breaking down stigma.
CARE PARTNERS EMPOWERING PEOPLE WITH DEMENTIA
Lynn Jackson is an action group member with lived experience who played a key role in developing the Flipping Stigma Toolkit, a new online resource helping educate caregivers, people with lived experience, researchers, and the public at large about how to respond to stigma around dementia. Jackson talks about how important it is for care partners to empower people with dementia to stay engaged and active. Fostering autonomy while supporting someone with dementia works to maintain their sense of personhood. Treating them like they're sick makes them feel that way.
AMPLIFYING DIVERSE VOICES: THE VALUE OF LIVED EXPERIENCE
Dr. Elaine Wiersma of the Centre for Education and Research on Aging and Health at Lakehead University talks about the need to amplify a wider cross section of voices when it comes to the lived experience of people with dementia. If our exposure of these experiences stays too narrow, we run the risk of silencing important wisdoms, staying uninformed as to the broad range of experiences, and keeping devastating stigmas alive.
ART AS A VEHICLE FOR CHANGE
Art is a powerful vehicle for shifting perceptions and shaping culture. AND it's one way of letting your voice be heard when the words themselves might be too hard to say. Whether it's a poem, a collage, a painting, or a dance, the arts can be incredibly helpful and moving for people with dementia at all stages of their journey, and can help the public gain insight into their experience.