Creative community in response to COVID-19 The space we are gathering in today to join in Stories in the Moment , is an online space created through the Dementia Action Alliance’s Virtual Engagement program. The Dementia Action Alliance (DAA) is a non-profit organization that has been supporting and amplifying the voice of people living with dementia in the United States for 25 years. Among other actions, DAA offers peer mentorship for people newly diagnosed with dementia, support groups for people living with dementia led by people living with dementia, podcasts, resources, and an annual conference. During the COVID-19 pandemic, DAA mobilized to create a virtual engagement platform to offer access every weekday to social, creative, and spiritual engage- ment and connection for people living with dementia all across the US. Barb and Bob, who have been joining Sto- ries in the Moment regularly share, “We found you and wow, what a difference you have made. What a differ- ence each of the people in DAA have made for us. I just can’t say it enough, it has opened up our world again.” Participants in Stories in the Moment comment on how much has shifted for them during the pandemic and how its impact continues to influence how they engage and interact with the world around them. “I honestly don’t think I could have survived the pandemic without the online programming. Marv isn’t willing to travel any- more. It’s sad as it’s a big change for us but he is fearful, and, frankly, getting him places is not easy. I sincerely feel that continuing online programming is essential for both partners,” shares Sheila, wife and care partner to Marv, a participant in Stories in the Moment . For many people living with dementia, the COVID-19 pandemic is still very much active and impacting their lives. Barb comments on her husband, Bob, who is now nine years into his journey with Alzheimer’s: “He’s been very weak, compared to before. Before November, we did two mile walks every day. And now it’s hard for him to get from the living room to the kitchen. He has some days when he kind of just sits at the kitchen table and isn’t doing much of anything. And I’ll put on some music, but he’ll just kind of sit there. And then it’ll be time for our DAA Zoom. And he brightens up and he’ll smile. And when you’re doing Sto- ries in the Moment , he’s doing his arm things and every- thing is so amazing. And so yes, you have been a big help in
“That which cannot be spoken can be sung. That which cannot be sung can be danced.” — OLD FRENCH SAYING On a Thursday afternoon, a group of 17 people log into a Zoom room from across the United States. As the win- dows burst onto the screen, we begin to fill the space with hellos and welcomes. “Shalom aleichem.” “Shalom” – others repeat and wave back. (Shalom aleichem is a spoken greeting in Hebrew, meaning “peace be upon you”.) “Hello! Shalom Shalom, pretty soon you’ll be home.” Barb wiggles her fingers. Her husband, Bob, sitting next to her adds his wiggling breath. Together, our fingertips and breaths ripple through the crowd. “Bubble off” says Marv, waving his arms open and closed, making a bubble with his hands. “Bubble off” we all repeat. “Oh, it’s a double bubble!” “A double bubble!” Another day, Marv introduced the “hello-copter” – a swirl of air with one arm, whirring over our heads, beckoning in a “come hither” action as we say hello – at once a hello and a welcome.
that.” She goes on to say, “DAA … through the Zooms and through the community and getting to know other people, have helped me keep [Bob] here at home where he does have the love and the affection and the freedom to do some activ- ities when he wants to do them.” Over two years later, DAA’s online engagements are still going strong. Stories in the Moment is one of those programs. Stories in the Moment is grounded on the understanding that dance is a universal language. We all have stories to tell, and we all have the means to tell our stories. Stories in the Moment taps into the library of stories we have in our bod- ies that we have accumulated over a lifetime and invites us to share this movement choreography with one another. We discover, expand upon, connect and build these dance stories together, in the moment, inspired by who is in the room. “In the moment” is a key factor. Dance is an ephemeral art form. Dementia also navigates the ephemeral. When we focus on one another in the moment and create opportuni- ties to connect and create together, we amplify and celebrate the voices, bodies, and minds of each person who is there. And although the stories we create are not being recorded in a material way, they continue to exist in the energy and feeling of community that persists from class to class, from week to week, month to month. These individuals are a community. “I consider them our dear friends. I mean, you’re a part of our lives, and so are so many people from DAA. You’re family almost to us now.” – Barb and Bob
“This is supposed to be for love. You should love your bluv. Love your bluv. That’s it!” – Marv
Jan Bays, DAA Board Chair and Director of Program Development and Education at Jill’s House Assisted Liv- ing & Memory Care in Bloomington, Indiana reflects on this ritual which grounds the group together in our shared community and opens the space for co-creation. “This is something that is very important. People feel that it is something they expect and look forward to. It makes them feel safe.” Participants from Jill’s House have been joining Stories in the Moment from its inception. Whereas many other participants join from their individual homes, Jill’s House participants join from their community room as a group. Jan reflects on how despite the difficulty of joining a pro- gram on Zoom, where I, as the facilitator, am on a large screen along with half a dozen other participants joining from their individual homes, “you notice how well every- one is participating.” The key behind Stories in the Moment is the commu- nity and the relationality. Rather than being delivered at or to participants, every session of Stories in the Moment exists because of the participants. We do every- thing with one another. Jan reflects on this: “I love the way you can get people to move. However, I think it is the personalization that makes the experience extra special. I see them light up when you speak to them individually.” “You relate to each single person in the group, even the people at Jill’s house, you relate to each of those individ- uals. I can barely even see them. But you find a way to let them know that you are connecting with them”, reflects Barb. “It’s not like we’re just a whole group of people and you’re just staring at a whole group. You talk to us indi- vidually. And we’re able to comment back and do things in relationship to what you’re saying and doing. And it’s just been heavenly.” Each individual deserves to be seen, heard and sup- ported in joining a shared space. Living with a chronic disease like dementia, one that is fraught with stigma and misunderstanding, results in people feeling as if they are becoming invisible. People begin to speak on their behalf and their contributions are written off. But people living with dementia have a desire to contribute, to have purpose, and deserve to recognize that their contributions are meaningful. Environments are invigorated by the people and actions that take place within them. We have to work together to reinforce and support the diverse ways we communicate and expand our tools of listening and speaking. Stories in the Moment seeks to expand and amplify these tools.
We are gathering for a program called Stories in the Moment .
Stories in the Moment is a co-creative dance, movement, and storytelling program for and with people living with dementia. Almost everyone in the room, except for myself and 1 or 2 care partners, are living with dementia. I cre- ated Stories in the Moment out of a desire to extend the resource of dance as a tool for expression to communities of people living with dementia and to ally with them to support their creative voice. I identify as a dance artist with a background in sci- ence. Due to my science background and interests, I acknowledge and am very aware of the potential thera- peutic effects of the programs I facilitate for communities. But therapy is not the main point of my work. It’s about amplifying other ways of knowing, listening, and speak- ing. Through Stories in the Moment , we speak not just with our words, but with our sounds, with our body posi- tions, and with our movements. Stories in the Moment is inherently shaped by the people in the space – same as we co-create each of our stories together, the program has been co-created as a community.
Shared rituals facilitate grounding and belonging We begin each Stories in the Moment class with our rit- ual Hello Body Dance, by saying hello and welcoming one another into this shared virtual space. By engaging in this way, we are setting the container for our practice. Each time we repeat this practice, we anchor ourselves into a shared space of belonging and we build, moment by moment, movement by movement, the foundation of our community. Grounded in the individuals, in stories, in movement and in voice, all modes of communication and connection are welcome and celebrated. They inspire, give permission to and invoke the voices and expression of others. Together we weave a tapestry of connection, appreciation, and love.
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In Dance | May 2014 | dancersgroup.org
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