What is Stories in the Moment®, and how does it serve those living with dementia?
Stories in the Moment® is a series of dance workshops specifically designed for people living with dementia and their care partners. It is tailored to meet the needs of people living with dementia and mild cognitive impairment (MCI) at various stages of their journey and is a signature program of Dance Stream Projects, an arts and health nonprofit with a vision to spark brain health and build creative community through dance and movement.
The community-based dance program cultivates agency in movement-based improvisation, narrative and gesture-based choreography. Participants living with dementia and their caregivers work together alongside resident dance artists to nurture their own discovery and sense of confidence as movement-based storytellers. The collaboration provides a space for people living with dementia to tell their stories and build new connections within their communities.
Over time, local community members are invited to join in interactive performances and events, recognizing the individuals living with dementia as vital and integral members of society. Whether featuring individualized visual pieces of artwork, video-based dance portraits or simply an open community dance workshop, these culminating events stand as a physical representation and commemoration of the stories and experiences the community shared over the course of their time together. The more we work together, the more we find ourselves writing and understanding new narratives and perspectives on what it means to be living with dementia.
How did the community-based dance program come to be?
Stories in the Moment®, a co-creative, evidence-informed dance and storytelling program, began in 2020 as an online virtual engagement program in collaboration with people living with dementia who are a part of the Dementia Action Alliance during the COVID-19 pandemic, while I was completing my residency as an Atlantic Fellow for Equity in Brain Health as part of the Global Brain Health Institute.
Inspired by the knowledge I was receiving as part of the fellowship, coupled with years of community-based dance practice with diverse older adults and people living with neurodegenerative conditions, I wanted to explore ways dance, as an embodied and universal form of expression, could be cultivated to enhance expression and belonging and support the wellbeing and brain health of communities of people living with dementia.
Designed to boost brain health, support creativity, and expand resources for connection and communication, Stories in the Moment® is intended to enhance quality of life by fostering social connection, creative expression and joy while reclaiming and expanding our collective understanding of what dance is and who gets to dance. The program has grown and evolved alongside hundreds of diverse people living with dementia across the United States and abroad through both in-person and online programs.
Who initially inspired you to grapple with dementia?
Everything I do pays homage to my grandmother, my babcia, who raised me for the first 8 years of my life. In the love she poured into me and the model she offered me, she demonstrated how to show up for others. My babcia taught me that in giving, we always receive, and it is through service to others that we experience true belonging.
In my 20s, I was fortunate to have a mentor who became like a second mother to me. She modeled ways of existing and showing up in a community that center service, generosity and social justice. Sadly, she passed away from an aggressive form of brain cancer; even in facing her diagnosis, she invited me to join her in walking this journey with honesty and integrity. Both of these women instilled in me the gift we receive when we dedicate ourselves to collaboration and service alongside others.
My passion for seeking to nurture spaces to discover agency through dance stems from growing up as an immigrant who struggled to connect with others. I was painfully shy and had difficulty in communicating through spoken language. Dance was the first place where I discovered a confidence I never imagined.
My studies and subsequent work in biochemistry, neuropharmacology and research on neurodegenerative conditions inspired in me a curiosity as to whether dance may offer something of value to communities living with diverse neurodegenerative conditions, including dementia.
Now, it is the 100s of individuals living with dementia and care partners whom we have met through the Stories in the Moment® program that drive me to continue this work. It is dedicated to each of them—it exists solely because of them. It will continue to exist because we know there are countless more individuals like them who have a story and a creative voice to share.
How has working on dementia-related art changed you?
One of the greatest gifts I have received in my decades of collaborative work with people living with dementia, care partners and elders of all ages, is the mirroring back and drawing attention to the fact that none of us navigate the journey of life alone. It is in the relationality of exchange —of thoughts, ideas, feelings, actions—that we recognize ourselves and engage in the action of belonging alongside others.
Co-creative dance cultivates a space where we can bring awareness to, identify and practice utilizing tools of connection and expression—tools that we may already possess, but which we now can reconfigure or appreciate in novel ways and application.
This emergent and generative process allows us to begin the act of shaping new stories, in our individual and collective bodies, hearts and minds. In their book, “Belonging without Othering: How We Save Ourselves and the World”, john a. powell and Stephen Menendian contend that the way towards a collective and expansive sense of belonging, is for us to “tell better stories,” stories that bridge and help us “build a bigger ‘we’” and “provide dignity and a future for all people.” Through co-creative dance, even though the stories we create together are not written down in the literary sense, they do persist from day to day, week to week, living in a collective feeling and understanding that signals a social shift.
How has Stories in the Moment® been received?
The Stories in the Moment® program has been featured locally (on ABCNY7 News and in local newspapers) and internationally (in a recent UK publication on Dance as an Arts and Health practice as well as in the Alzheimer’s Disease International World Alzheimer’s Report in 2023) for its work in partnership with people living with dementia. We also are in the process of publishing results from a pilot mixed-methods research study on the impact of this dance program on wellbeing and sense of belonging of diverse people living with dementia.
The most important gauge of our impact, however, comes directly from feedback and perceptions of participants living with dementia and their care partners. What we hear illuminates several critically important impacts engaging in co-creative dance elicits: (1) a sense of belonging, (2) emergent discovery, (3) shifts in perspective/attitude and (4) shifts in mood/wellbeing that result in improvements in quality of life, which, over time, result in transformations in the community and shifts in narratives of dementia toward complexity beyond the deficit lens that perpetuates dominant media.
As one individual living with dementia commented, the emergent discovery of their abilities through dance were surprising: “It really brought out a lot of different feelings and movement and things that I didn’t know that I had in me.” This ability to discover new skillsets in oneself while building new connections among others serves as a fertile and encouraging environment for nurturing self-confidence, agency and relational community.
What impact does receipt of the Dementia Arts Fellowship have on your project and your work?
The Dementia Arts Fellowship comes at an incredible time of opportunity for Stories in the Moment® and our DanceStream Project community. In the 5 years since the founding of this program, we have been honored to establish partnerships and collaborations with numerous communities serving people living with dementia. In New York, where we are based, we partner with community-based organizations serving primarily low-income and immigrant people living with dementia, many of whom are people of color, who are 2x more likely to develop dementia but experience numerous systemic barriers to accessing services and support.
As we continue to grow, we have been receiving inquiry for engagement in collaboration that exceeded our capacity to meet through the sustained support we strive to offer. Through the Dementia Arts Fellowship, we will be able to support the training of new dance artist facilitators in New York City, the creation of a “Best Practices” guide to help expand the program’s reach and to ensure the voices of more people living with dementia in New York City and beyond are invited into and supported in sharing their experience through movement-based storytelling. Together we can open up spaces to listen to the experience of people living with dementia, build solidarity and take a collective step to transform narratives of dementia in our communities.
Find more on Stories in the Moment on DanceStream’s website as well as on Instagram, Facebook, and TikTok. More from Magda Kaczmarska onLinkedIn or catch up with her on the Dancing into Brain Health podcast on Spotify and Apple Podcasts.
