Disrupt Dementia With Us: Day 1

by, ChangingAging

[Editors Note: Click here for Disrupt Dementia With Us — Day 2]

Imagine people who live with dementia are thriving in your community — what does it look like?

They would mentor others, engaging meaningfully with people of all ages; they would feel love, compassion and be comfortable coming out of the ‘dementia closet’; they would feel purpose, capable of adapting to changes; there would always be opportunities to learn and grow.

These were just a few of the visions of an ideal future we created in Seattle during the first day of our two-day retreat to “disrupt” the tragedy narrative around Alzheimer’s disease and dementia in partnership with the true experts — people living with dementia and their family and friends.

Six cast members of Dr. Bill Thomas’ ChangingAging Tour joined a dozen Seattleites to co-create the 2017 production of the tour’s show Disrupt Dementia, a paradigm shifting non-fiction theater performance.

Surfacing compelling themes that represent the group’s shared visions for a more ideal future was the goal for the first day of the retreat. Next, we will develop these themes into creative ‘dream enactments’ (i.e., skits) that can be incorporated into the Disrupt Dementia script.

The group’s visions resulted in 10 “Discovery Themes” surfaced through the process of Appreciative Inquiry, a participatory action research methodology designed to drive positive innovation and change by focusing on the “best of what is:”

• Acceptance and coming out of the ‘dementia closet’
• Adaptability and leaning into discomfort
• Advocacy and having a true purpose
• Family, community and feeling connected
• Opportunities for ‘non-cognitive’ engagement
• Love and compassion
• Integrated and intergenerational communities; dementia friendly = human friendly
• Slow down and hold space
• Honor the wisdom of the elders (e.g., dementia mentors who can help us become better humans; ‘badges’ for learning from dementia)
• Opportunities for learning and growth, which can open boundless opportunities

“It was really powerful for me,” said Rafe Schwimmer, who attended with his wife Paula Schwimmer. “It made me feel like I can do something with myself. I can go out and create something new.”

We started the day by creating guiding principles to help establish an inclusive environment where everyone felt comfortable sharing. We agreed: no judgement, be active and deep listeners, and commit to being honest and vulnerable. One participant summed up the principles by saying “don’t be an asshole!”

The Disrupt Dementia cast — Kyrié Carpenter, Jennifer Carson, Namarah McCall, Samite Mulondo,  and Nate Silas Richardson — also performed an unplugged version of Disrupt Dementia as performed in 35 cities in 2016, in order to get feedback from the group on what should stay, what should go and what could be added.

“What moved me most was how the performance drew parallels across the human experience,” said Cayce Cheairs, Dementia-Friendly Recreation Specialist with Seattle Parks and Recreation. “I thought I had a good understanding of dementia but this helped me see when we think about aging and dementia there is so much ‘othering’. It just opened me up in surprising ways with so many epiphanies about what we share in common.”

Stay tuned for updates on day two of our Disrupt Dementia retreat!

[Editors Note: Click here for Disrupt Dementia With Us — Day 2]

Special thanks to all ChangingAging Tour sponsors for making this retreat possible, and to  Village Cove, a Hearthstone independent living company for hosting us in their Bridge community room. Contact us to Disrupt Dementia in your community!

Appreciative Interview Topics: Positive Core, Strengths and Contributions and Ideal Future

Conducting Appreciative Interviews

Conducting Appreciative Interviews

Tapping into other ways of knowing through ‘ephemeral self-portraits’

‘Ephemeral self-portraits’

‘Ephemeral self-portraits’