EAST SIDE INSTITUTE | INITIATIVES

The Joy of Dementia

(You Gotta Be Kidding!)©

Developing Dementia and the Dementia Ensemble

Mary Fridley and Susan Massad, MD

Across the globe, practitioners and patients using play, performance, the arts and improvisation to challenge the “tragedy narrative” of dementia and create approaches that support everyone, including those diagnosed, to develop and to live with/perform dementia in new and more positive ways. As actor Karen Stobbe writes, “Flexibility, adaptability, spontaneity, listening, generosity, acceptance…characteristics of an excellent caregiver. They are also qualities of an excellent improvisational performer.”

This experiential Joy of Dementia© workshop- which is offered in-person and virtually – uses improvisational games, creative exercises and philosophical/performed conversation to explore what it means to create an environment which supports everyone involved in the “dementia ensemble” to enjoy the “non-knowing growing” that is possible with improvisational play. To hear more about Joy of Dementia, click here for a videotaped presentation by Mary Fridley and Susan Massad originally created for the American Therapeutic Recreation Association 2021 national conference.

We lead Joy of Dementia© workshops for a broad array of organizations, facilities and agencies. However, our overarching goal is to create an environment in which people living with dementia, care partners (family and professionals), other family and community members, including the “worried well” of all ages, and health and social service professionals can come together to learn how to live more improvisationally — create a more playful, joyful and growth-filled relationship to dementia, build a community of support — and share the full emotionality of their dementia experience.

The Institute was among leadership voices to found Reimagining Dementia: A Creative Coalition for Justice, which now has close to 1000 members (individuals and organizations). We invite you to watch a slideshow highlighting activities of members Taking It to the Streets, as part of a campaign launched in the fall of 2023 to build the conversation on advancing humane approaches to dementia care. While on our website, please take a moment to become a member. We hope you will join us, and thousands of others around the world, in transforming the conversation around dementia – we’d love to hear what you’re doing and are eager to find ways to work together, so please be in touch!

Who We Are

Mary Fridley (right) is the Institute’s pro-bono Director of Special Projects, co-creator and leader (with Susan Massad) of The Joy of Dementia (You Gotta Be Kidding!) and coordinator of Reimaging Dementia: A Creative Coalition for Justice. An accomplished teacher and workshop leader, Mary practiced social therapy for 12 years and uses the social therapeutic approach as an Institute faculty member. She is author or co-author of several articles and chapters on the Joy of Dementia, including a chapter that appears in The Applied Improvisation Mindset. Additionally, she is a guest blogger for agebuzz.com, a playwright and theater director. She makes her living as a non-profit fundraising consultant.

Susan Massad, M.D., (1938-2021) a physician with 51 years of practice and teaching in internal medicine, was co-creator and leader (with Mary Fridley) of The Joy of Dementia (You Gotta Be Kidding!) and a founding member of Reimagining Dementia: A Creative Coalition for Justice. In 2006, Susan launched a senior theater workshop for the All Stars Project and was a faculty member of the East Side Institute, where she led conversations on health, wellness and growing older. She is the co-author of several articles on the Joy of Dementia, including a chapter that appears in The Applied Improvisation Mindset published in August 2021. Dr. Massad was passionate about the medical conversation and has been widely recognized for bringing improvisation and performance into the medical education of resident physicians. Her book, Medicine Across Borders, The Subjectivity of Health and Healing, presents a collection of essays and presentations on doctor/patient conversation and medical methodology. Susan also wrote a play, Remember? Remember!, that deals with aging and memory loss, as well as a short opera, The Crisis.

Celebrating the Life of Susan Massad

Workshops and Presentations

Reimagining Dementia: Let’s Play! Front Porch, October, November and December 2024

Creating a new performance of dementia: Why the environments we create matter, Hilarity for Charity, November 2024

The Joy of Dementia (You Gotta Be Kidding), Aging is Cool, Austin, TX, September 2024

The Joy of Dementia and Reimagining Dementia, Open the Door 2030, July 2024, WATCH HERE

The Joy of Dementia (You Gotta Be Kidding), Phillips Collection, Washington, DC, May 2024

Developing with Dementia Training with Dementia Friendly Indiana, Bloomington, IN, May 2024

The Joy of Dementia (You Gotta Be Kidding), Area 10 Agency On Aging EndWright Center, Bloomington, IN, May 2024

The Joy of Dementia (You Gotta Be Kidding), ARISE-DP and A. Phillip Randolph Senior Center, Harlem, NY, November 2023 and February 2024

Creating Community to Transform Health and Healing, Cleveland Clinic Community Education Forum/Las Vegas, January 2024.  WATCH HERE

The Joy of Dementia (or why environments matter), Hilarity for Charity, December 2023.

The Joy of Dementia (You Gotta Be Kidding!) workshop, A. Philip Randolph Senior Center and ARISE-DP, November 2023

The Joy of Dementia (You Gotta Be Kidding!): Creating a new performance of life – and dementia, Master Aging and Health Program, Graduate School of Arts and Sciences, Georgetown University, December 2022.

Let’s Improvise! Navigating Dementia (and Life) With Creativity, Humanity, and Joy, 36th Annual Caregiver’s Conference, Northern Virginia Dementia Care Coalition, November 2022

The Joy of Dementia, with Mary Fridley and Maureen Kelly, a training with Gerontology Center staff at Saint Adolphus Hospital (Boise, ID), October 2022

The Joy of Dementia: Creating a New Performance of Life (and Dementia), with Mary Fridley, The RISE Registry, University of Las Vegas at Reno, October 2022

Let’s Improvise! The Joy of Aging, Memory Loss, and Dementia with Mary Fridley and Eileen Moncoeur, San Francisco Village, September 2022

The Joy of Dementia: Creating a New Performance of Life (and Dementia), with Mary Fridley, American Therapeutic Recreation Association, September 2022

The Joy of Dementia (You Gotta Be Kidding!), with Mary Fridley, So’ Tsoh Foundation, September 2022

The Joy of Dementia: Creating a New Performance of Life (and Dementia), with Mary Fridley, Pioneer Network Conference, July 2022

Does Dementia Have a Future? Challenging the Tragedy Narrative with Play and Poetics, an interview by Mary Fridley with poet, play and creativity advocate and author John Killick for All Power to the Developing Podcast, July 2022. WATCH HERE

Improv and the Medical Conversation: Going Beyond Diagnosis and Creating Health, with Susan Massad, Beth Boynton, Maureen Kelly and Mary Fridley, Applied Improv Conference, October 2021

Playing with Dementia: How the Dementia Experience Can Help Us All Embrace Uncertainty, Live More Joyously, Lead with Our Hearts and Create a Better World with Mary Fridley, Helen Abel, Eileen Moncoeur and Pat and John Sullivan, Play, Perform, Learn, Grow Conference, September 2021.

The Joy of Dementia (You Gotta Be Kidding!) with Mary Fridley, Maureen Kelly and Susan Massad, American Therapeutic Recreation Association, September 2021. WATCH HERE

The Ethics of Play in Research and Practice and Why it Matters in Changing the Culture of Dementia (and So Much More!) with Mary Fridley, Jennifer Carson and Carrie Lobman, Dementia & Culture Network, July 2021. WATCH HERE.

Playing to Develop, Developing to Play…with Dementia, with Mary Fridley and Susan Massad, hosted by Flourishing Lives, UK, November 2020. WATCH HERE. (password is 3q^f$3z6)

Creating a New Performance of Dementia, presentation to the British Society for Phenomenology Annual Conference on Engaged Phenomenology, September 5, 2020. WATCH HERE.

Creating a New Performance of Ageing, Memory Loss and Dementia, hosted by Flourishing Lives, London, UK, July 2020.

Playing and Improvising with Memory Loss, Dementia and Growing Older, hosted by the Alzheimer’s Society of Toronto, Toronto, Canada, May 2020. Creating New

Performances of Memory Loss Dementia and Growing Older, hosted by Life Performance Coaching Center, San Francisco, CA, April 2020.

The Joy of Dementia (You Gotta Be Kidding!), hosted by Alzheimer’s Los Angeles, Los Angeles, CA, April 2020.

Play, Performance and Philosophizing: Social therapeutics in the context of dementia care, Mary Fridley and Susan Massad, Dementia & Culture Network, March 2020. WATCH HERE.

Host agencies, organizations and facilities:

  • A. Philip Randolph Senior Center, Harlem, NY
  • AARP Harlem, New York, NY
  • Agency On Aging EndWright Center, Bloomington, IN
  • Aging is Cool, Austin, TX
  • All Stars Project, New York, NY
  • Alzheimer’s and Dementia Resource Service, Indiana University Health, Bloomington, IN
  • Alzheimer’s Europe
  • Alzheimer’s Los Angeles, Los Angeles, CA
  • Alzheimer’s Society of Toronto, Toronto, Ontario, Canada
  • American Therapeutic Recreation Association
  • Artis Senior Living of Reading and Lexington, Winchester, MA
  • Atlanta Social Therapy Group, Atlanta, GA
  • Beacon and Wentworth Hospice (Amedisys), Portsmouth, NH
  • Boston Social Therapy Group, Boston, MA
  • Buena Vista University, Storm Lake, IA
  • Cleveland Clinic, Las Vegas, NV
  • Com4Care, New York, NY
  • Covia, Walnut Creek, CA
  • Creative Center, New York, NY
  • Dementia & Culture Narrative Network, UK
  • Dementia Friendly Indiana, Bloomington, IN
  • East Side Institute, New York, NY
  • East Side Institute and Inspired Memory Care, New York, NY
  • Edinburgh Centre for Research on the Experience of Dementia, Scotland
  • Emmanuel Baptist Church, Brooklyn, NY
  • Flourishing Lives, London, UK
  • Front Porch CA
  • Georgetown University, Washington, DC
  • Goodwin Living, Washington, DC, Northern Virginia and Maryland
  • Heights and Hills, Brooklyn, NY
  • Hilarity for Charity, Los Angeles, CA
  • Life Experience and Faith Sharing Ministry, New York, NY
  • Life Performance Coaching and Stagebridge, Oakland, CA
  • Life Performance Coaching , San Francisco, CA
  • Memory and Alzheimer’s Treatment Center, Johns Hopkins Bayview Medical Center, Baltimore, MD
  • Memory & Inclusive Communities Everywhere (M.I.C.E. Haldimand), Hamilton, Ontario, Canada
  • North Carolina Agricultural & Technical State University, Greensboro, NC
  • Northern Virginia Dementia Care Consortium, Alexandria, VA
  • Opening the Door 2030
  • Pennswood Village, Newtown, PA
  • Phillips Collection, Washington, DC
  • Renewal Care, New York, NY
  • Rutgers University, New Jersey
  • Saint Adolphus Hospital, Boise, ID
  • San Francisco Village, San Francisco, CA
  • So’ Tsoh Foundation, Arizona and New Mexico
  • University of Nevada (Rising Registry), Reno, NV
  • University of Salford School of Health & Society

Conferences

  • Alzheimer’s Association, Rocky Mountain Chapter, Denver, CO
  • Alzheimer’s Europe, Geneva, Switzerland
  • Alzheimer’s Disease International, London, UK
  • American Therapeutic Recreation Association, Birmingham, AL
  • Applied Improvisation Network, Stonybrook, NY
  • ARISE-DP/New York University, NY, NY
  • Association for the Study of Play, Harrisonburg, VA
  • British Phenomenological Society, UK
  • British Gerontological Society, UK
  • Connecting Caregivers, Florida
  • Creative Arts Network North Carolina, Greensboro, NC
  • Dementia Action Alliance, Atlanta, GA
  • Dementia Futures, University of Manchester, Manchester, UK
  • Expressive Therapies Summit, Virtual
  • Georgia Southern University, Statesville, GA
  • Health and Humanities Consortium, Cleveland, OH
  • Hunter College Silberman School of Social Work, New York, NY
  • MC5, St. Louis Missouri
  • New York University Department of Music and Performing Arts, NYC
  • Northern Virginia Dementia Care Consortium, Alexandria, VA
  • PBS POV
  • Performing the World, New York, NY and virtual
  • Pioneer Network, Denver, CO
  • Play, Perform, Learn, Grow, Thessaloniki, Greece
  • Southern Gerontological Association, Florida
  • UK Dementia Conference, Coventry, UK
  • University of Waterloo, Waterloo, Ontario, Canada
  • Virtual Brain Health Center, Cleveland, OH

Programs

The Joy of Dementia (You Gotta Be Kidding!)© Workshop

Our basic experiential workshop can run anywhere between 1.5 and 3 hours. We prefer working with “mixed” groups – people living with dementia (young and old), care partners (family and professional), volunteers, other family and community members, the “worried well,” (young and old, advocates, activists and anyone else interested; however, we leave the final determination of who attends to the host facility, agency or organization.

Staff Training

Since it is often difficult for staff to attend the workshops, we can create a training for your staff and professional care partners at a time that might work best for them. It is generally a modified version of the workshop, with the inclusion of additional didactic and other elements designed to address issues specific to your staff.

Community Events

We can lead an event that is open to the entire community and often hosted with other collaborative partners. While the final design would be shaped by everyone involved, it might be more accurate to characterize it as more of an “interactive lecture” (or possibly a panel conversation) than a full-blown workshop.…and we can work with you on creating more specialized activities as needed.

Fees

While we will work within your budgetary parameters, we generally receive between $750 and $2,500, depending on the number (and length) of the planned activities. Your support allows us to offer The Joy of Dementia © workshops on a sliding scale basis to organizations and care facilities in communities with high need and little access to quality information or innovative programs and approaches.

In addition, we ask that our hosts pay for transportation and accommodations, as required. All proceeds go to the East Side Institute and are used to subsidize the cost of our workshops made available free-of-charge to disadvantaged populations.

For more information….
If you are interested in bringing the Joy of Dementia © to your community or would just want to chat, contact Mary Fridley at mfridley@eastsideinstitute.org

Testimonials

Participant, American Therapeutic Recreation Association annual conference 

“The “Joy of Dementia” videotaped conversation with Mary Fridley, Susan Massad, Maureen Kelly was such an eloquent yet informal discussion style presentation. I loved how conversational it felt…this session drew me in by my personal connection to dementia. My grandmother had dementia and it was extremely difficult on my family and I. I loved how the speakers were so honest and vocal about their beliefs on the biomedical model and dementia and how it depicts this disease as a “tragedy narrative.” I have always believed that an individual is not their disease, but this presentation did such an awesome job at describing it in further detail. Something that really stood out to me was when we put a different lens on dementia, it can allow us to see the person as a creator. When we approach dementia with play and creativity, we allow the individual to use improv as a tool and we make space for new conversations. I got so much out of this session. I could have listened to them speak for days.”

Nicole Finitsis, Volunteer Coordinator, Beacon Hospice, Portsmouth, NH

Our combined hospice offices of Beacon Hospice and Wentworth Hospice out of seacoast area New Hampshire benefitted from the Joy of Dementia (You’ve Got to Be Kidding) © workshop presented by Mary Fridley and Susan Massad. With around 40 people in attendance between our offices, we were delighted by the response and reaction of our staff, volunteers and community members. The workshop was engaging, fun and enriching for a new viewpoint of working with dementia patients. Numerous attendees verbally expressed after the workshop how they could relate what they learned to the work they are currently doing in our community with our hospice patients. I highly recommend Mary and Susan as presenters and, in particular, this Joy of Dementia concept and workshop! It was so much fun to learn and play all at the same time.

Joyce Dattner, Director, Life Performance Coaching, San Francisco, CA

Life Performance Coaching was so pleased to sponsor the Joy of Dementia © workshop led by Susan Massad and Mary Fridley in the Bay Area. As someone who believes that we can grow and develop at any age and under the most challenging of circumstances, I find Susan and Mary’s improvisational, relationship-focused approach an invaluable guide and support for caregivers, friends, loved ones and for people living with dementia. At the request of Joy of Dementia © workshop participants, LPC now offers groups that continue to bring hope, laughter and possibility to conversations that can otherwise be overwhelmed by heartbreak and loss.

Emily Kearns, PhD, RMT, Kearns Consulting/Dementia Ways and Reiki Well-Being

Since participating in the Joy of Dementia © workshop at the East Side Institute last year, I have been incorporating the lessons I learned about Improv into our innovative dementia-supportive programming including our community’s memory-making cafes and a day-long retreat for persons living with dementia and care partners. The key takeaway that this Improv model helps all of us be better communicators and, ultimately, better human beings, has been transformative for me, program participants, and our community of care supports.

Amy Keiper-Shaw, Director, Residential Life, Pennswood Village, Newtown, PA

When my community heard about the Joy of Dementia ©, they were intrigued. They wondered how there could be any joy in Dementia or caring for someone with Dementia. After some improvisational games and fun introductions to help build cohesiveness, we spoke about the feeling of aloneness and fear of what “could” happen when given a diagnosis of Dementia. One of the residents shared that there is shame in asking for help or admitting that they need help. Mary encouraged us to embrace the shame and say “now what” instead of avoiding it.

We also discussed how challenging it is to be a caregiver and how difficult it is to find moments of joy when feeling exhausted, defeated and overwhelmed. Susan shared that when we are caregivers we tend to turn inward. We worked on how to create something new, both with the person for whom we’re caring and others in our lives. Joy does not equal happiness; joy is something we create with others. Through play we learn how to grow enough to be fully with those we love. We are just beginning this journey of finding meaning and joy in Dementia. We look forward to working with Mary and Susan as we continue to create our story as a community living with Dementia.

D. B., The Joy of Dementia © Participant, Play, Perform, Learn, Grow Conference, Greece

My father has been losing his memory for several years now…and the situation had us feeling fairly grim. We felt that we were losing Dad and that each day was the last day that things would be so good…Then one of my brothers read an article in the Washington Post…and reading it was the turning point for the three of us. Make that the four of us – Dad also benefitted tremendously from our new outlook on things…among those interviewed for the article was Mary Fridley (and) her words made a particularly strong impression, as she exhorted us to be improvisational, to play, to free ourselves “from the constraints of truth and knowing and assumptions.” Most appealing of all, she encouraged us to be silly. This struck home. In our universe, silly is good, and it made sense to bring in the silly for these extraordinary circumstances…I attended the conference and…it was also great to pick up some additional pointers through some improvisational work we did together – particularly one on dealing with short term memory loss, where we dealt with the challenge (opportunity?) of interacting with someone who is doing something fresh (as far as he or she is concerned) over and over again. I have now gotten more adept at working with the multiple repetitions that are part of any conversation with my father. Silliness, wielded with the utmost respect, works well for us both.

Articles & Blog Posts by Mary Fridley & Susan Massad

Changing Aging

agebuzz.com

In the News:

Other Publications:

  1. Restoring Humanity in Dementia Care: A New Beginning, A Beautiful Voice, January 2024
  2. Taking It to the Streets, McKnight Long-Term Care News, November 2023
  3. Reimagining Dementia, Seniors for Social Action in Ontario, guest editorial by Mary Fridley
  4. Abandoning the Tragedy Narrative, Seniors for Social Action in Ontario editorial
  5. Debunking the Tragedy of Dementia (Part 1), Laura Smothers-Chu, caregiving.com
  6. Medicine Across Borders: The Subjectivity of Health and Healing, a collection of Susan Massad writings on health and medicine, November 2021
  7. Applied Improvisation Mindset, “The Joy of Dementia,” August 2021
  8. Critical Encyclopedia of Mental Health, Creating a New Performance of Dementia, July 2021
  9. “Separate and Unequal: A Time to Reimagine Dementia,” The Journal of Alzheimer’s Disease, April 2021, Mary Fridley, Pia Kontos, Susan Massad and multiple authors
  10. Australian Journal of Dementia Care, Reimagining Dementia: A Creative Coalition for Justice, January/February/March 2021
  11. Australian Journal of Dementia Care, The Joy of Dementia, February 2020

Interviews with Mary Fridley and Susan Massad:

Forums:

Recommended Articles & Interviews by Colleagues:

Colleagues Who Inspire Us (please check them out!)