For most people, a dementia diagnosis, either for oneself or a loved one, feels like a devastating blow: a strike at the heart of what makes a person uniquely human. Few would greet such a diagnosis as an opportunity for reimagining what is possible and positive in life. Yet, for Mary Fridley, the pro-bono Director of Special Projects at the East Side Institute in New York City and Coordinator of Reimagining Dementia: A Creative Coalition for Justice, a dementia diagnosis can be the spark for rethinking what brings meaning and even joy in life. Mary is an accomplished teacher and workshop leader who has practiced social therapy for 12 years and uses the social therapeutic approach as an Institute faculty member. She was featured in a February 2019 Washington Post article, “Changing ‘the tragedy narrative’: Why a growing camp is promoting a more joyful approach to Alzheimer’s” and, with Dr. Susan Massad, Mary has co-authored several articles on the “Joy of Dementia,” including one for the Australian Journal of Dementia Care. Mary is also a playwright, theater director, and non-profit fundraising consultant.

Recently, agebuzz Managing Editor Connie Zuckerman had a chance to interview Mary about her work and her approach to dementia. What follows are excerpts from their conversation.

Mary, thank you for taking the time to explain your work to agebuzz readers. First, it would be helpful to gain insight into your background, and what led you to work in the field of dementia?

My mom died from complications of late-stage dementia three years ago, and a number of friends have also been diagnosed. Like many Americans, I have an “up close and personal” relationship with dementia. Yet my involvement in the field began years earlier when I began reading the traditional literature about dementia – and the biomedical model on which it rests – and thinking to myself, “This is just wrong.” 

As someone who has spent the last 40 years creating environments in which people of all ages, life circumstances and physical/cognitive abilities can continue to grow and develop, I was offended by how quickly people living with dementia are considered – even by those who mean well – as “no longer there.”  I realized that this is exactly how a culture so obsessed with “knowing” – that would have us believe that our cognitive function is what makes us human – would relate to people living with dementia. After all, what dementia “robs” us of is our ability to think, reason, recognize, and remember, so it would follow that those with dementia are treated as people no longer expected to learn and develop, adapt, connect and contribute – an expectation as devastating as the loss of memory. 

These lowered expectations and the loss of humanity are at the center of what I and many others in the dementia field call the “tragedy narrative” of dementia– a narrative that allows us to stigmatize and ostracize millions of people as different or “other” and then shun them because we’re afraid. It also severely limits our capacity to appreciate the many other ways (creative, physical, poetic, silly) human beings can and do connect all the time. After all, writing a poem, falling in love, or marveling at the majesty of a redwood are rarely rational or logical acts, and yet poets, lovers, and nature enthusiasts are for the most part embraced, not feared. For me, these “other ways” of relating give us the best shot at navigating the dementia experience – not to mention the deeply uncertain world in which we are living – with more compassion, creativity, and growth.

How would you characterize the current state of care and support for persons with dementia and their families?

The care generally provided to people living with dementia – regardless of whether they are in nursing homes, assisted living centers, or other care facilities, or are being attended to at home by professional care partners – is overwhelmingly premised on the biomedical model. This means that, for the most part, basic bodily care is prioritized over other essential aspects of well-being, with few opportunities for people living with dementia to pursue life-enhancing relationships and growth activities. The actions, needs, and movements of persons living with dementia tend to be discounted as aimless, inappropriate, and disease-driven behavioral “symptoms” rather than meaningful attempts to communicate preferences or to engage with others. There is little transparency about the care being provided, which is among the reasons why care partners, family members, and others often find it difficult to impact the care policies and practices. 

How has the pandemic affected the situation?

I think the COVID-19 pandemic has affected the situation in ways both negative and positive. On one hand, it has very efficiently exploited already difficult conditions, most notably the heavy reliance of nursing homes on a temporary, under-trained, and underpaid workforce, low staffing levels, and inadequate care supplies. The pandemic response has also completely neglected the psychosocial well-being of residents. Government-imposed COVID-19 public health directives, such as strict social distancing, have led most residential long-term care homes to adopt strict “no visitor” and lockdown policies out of concern for their residents’ physical safety. The result has been that residents are placed in de facto solitary confinement for extended periods of time with no enriching activities, and many are experiencing severe and irreversible decline. 

On the positive side, COVID-19 has exposed these conditions in a way that I hope will make it difficult for facility operators, and their regulators, to “put the genie back in the bottle” going forward. If changes are made, I have no doubt it will be because of those now working on the ground to advocate for important reforms (living wages, better training for care staff, the implementation of more compassionate and creative ways to protect staff and residents during crises of this kind, etc.). The pandemic has also exposed the devastatingly disproportionate impact COVID-19 has had on the African American community and other communities of color – whose residents are also two to three times more likely to be diagnosed with dementia – and among the poor. I am heartened by the calls for racial equity and social justice that continue to ring out across America and will do everything I can to ensure that the lives of our oldest citizens of color also matter. 

The pandemic has also helped shine a well-deserved spotlight on the individuals and organizations whose practices and policies have always been humane, collaborative, and empowering of everyone involved, including those living with dementia. We all need to learn more about those places in the U.S. and globally where our oldest citizens and those who care for them remained safe during the pandemic without it costing them their dignity, emotional well-being, and health – and demand these models become the “gold standard” of care everywhere. Living environments that use The Eden Alternative method come to mind, but they are hardly alone. And I also want to give a shout-out to all the non-profit and community-based organizations that have successfully moved their programming online and formed new partnerships in order to stay connected with the people and communities they serve. 

What is the essence of your approach to working with individuals, families, and professionals affected by dementia? You lead an intriguing-sounding workshop, “The Joy of Dementia” which suggests that positivity is important when working in this area.  

 The Joy of Dementia (You Gotta be Kidding!) is a workshop and conversation series, which I co-created with Dr. Susan Massad, that incorporates improvisational play, performance, and practical philosophy to support everyone impacted by dementia to take risks and create new performances of life- and care-partnering. After leading dozens of workshops for hundreds of people, I have developed a much deeper appreciation for improvisation as an especially valuable tool for everyone living with, or impacted by, memory loss and cognitive decline to have in your “dementia (not to mention your pandemic) toolkit.” 

As Karen Stobbe, an actor who helped pioneer the use of improvisation in the dementia arena, has written, “Flexibility, adaptability, courage, spontaneity, listening, generosity, acceptance …are characteristics of an excellent caregiver. They are also qualities of an excellent improvisational performer.” By relating to workshop participants as a performance ensemble – what we call the “dementia ensemble” – this creative community offers participants the opportunity to work together to build something new with even the most difficult of life situations. 

For those unfamiliar with improvisational play, the emphasis is on “Yes, And” – seeing, accepting, and creating with “offers,” which can include all the stuff of life, even the stuff that doesn’t “make sense” or is emotionally difficult. This is important with dementia because care partners and others often have trouble letting go of “how things should be” and/or who their loved one “used to be,” so improvisation gives us a powerful tool for moving to “What can we create given what exists?”  The workshops have also helped participants more fully and honestly express the emotionality of the experience, which I love because care partners (and anyone else) who try and “tough it out” suffer from high rates of depression, anxiety, and distress. Being more playful and improvisational also gives us a way of responding to the uncertainty and “irrationality” of dementia (not to mention life) with more intimacy and connection. Does this mean we won’t feel scared, frustrated, angry, upset, and more?  No. But we don’t have to respond in the same way to those emotions. So when your loved one living with dementia says, “My sister Louise came to visit and we had a great time,” the more negative response, “That’s not possible. Louise has been dead for ten years,” can be replaced with the more curious, “Tell me more about Louise. She sounds fun.”

Susan and I do this work at the East Side Institute, where we are on the faculty. It is also part of and has been inspired by, a growing movement of people living with dementia, care partners, family, and community members, health care professionals, dementia specialists, artists, activists, advocates, and others who are creating positive alternatives to the “doom and gloom” brush with which dementia is painted. They see that people living with dementia have a lot to teach the broader culture and, like us, know that our embrace of dementia and those living with it has made us better people. 

When you speak with people diagnosed with dementia, what are their biggest concerns? What worries them and their loved ones the most? What misperceptions are out there that we all need to avoid and overcome in order to be supportive and helpful to loved ones who have a dementia diagnosis?

One of the most damaging misconceptions out there is that everyone living with dementia is the same, but as I have learned from friends living with dementia, “If you meet one person living with dementia, you’ve met one person living with dementia.” Unfortunately, the medical field generally doesn’t make that distinction. I can’t tell you how many people living with dementia have shared with me their experience of being at their physician’s office, receiving the diagnosis, and being told, “Go home and get your affairs in order because you’re going to die.” And then the doctor walks out of the room, never to return. By way of illustration, I’m going to share a story told by a friend, Wally Cox, about what happened after this happened to him.

“It was as if I was on a merry-go-round, standing on the outside edge as it was spinning resolutely, staring at the center pole where I saw the ‘Big Ds’ – dementia, despair, depression, disappointment and death…I was whirling in circles, becoming ill from worry, stress and the concerns I had…I needed to look outward from the merry-go-round to see another path – the rest of my world, filled with faith, family, friends, music, love, adventure, art. I needed to recognize that I am more than my diagnosis, more than my illness…This is the path I have chosen.” 

Wally then asks, “Are you staring inward at what cannot be controlled or outward at what is possible?” What a wonderful question, and one that does not get asked nearly enough – about dementia or many other things in life. 

Of course, not everyone living with dementia is like Wally, who had the love and support needed to choose a more positive path forward. Believe me, I understand how difficult it can be for people living with or impacted by dementia to see anything positive (much less joyful) about the situation. We have gotten many angry responses to our work – and I totally understand why. Without support, it is hard to go up against the tragedy narrative.

I am a firm believer that the quality of the environment created by care partners and others is one of – if not the – biggest factor in how well people with dementia live out their lives. This is why our primary focus in the Joy of Dementia workshops is on working with people on creating an ensemble that supports everyone to take risks, step outside of their comfort zone, ask for and give emotional support and embrace uncertainty. While this doesn’t ensure a “happy ending”, it does, in my experience, give us all – including people living with dementia – the best shot of creating life journeys that are more intimate, giving, and growth-filled. 

You also work with a group called “Reimagining Dementia: The Creative Coalition For Justice”– Can you explain what this is and what the goals of this organization are? 

When Susan and I saw that over 80 percent of COVID-related deaths at the beginning of the pandemic were associated with often under-resourced nursing homes, with the majority being persons living with dementia (the number is now 45% in the U.S. and globally – still unacceptably high), we were angry. We reached out to colleagues who shared our passion for creatively transforming the culture of dementia, and 22 of us came together to launch what is now Reimagining Dementia: A Creative Coalition for Justice. We felt that a coalition is what is needed to forge alliances across the globe so that we can achieve a humanizing vision of care and support that promotes inclusion, relationality, creativity, and the possibility of growth for everyone living with or impacted by dementia. Unique to this coalition is our belief in the power of creativity – the arts, theater, music, movement, improvisation, performance, and much more – to bring us together and innovate new ways to address the social injustices that people living with dementia face. As of January 1, 2021, the Reimagining Dementia Coalition has over 400 members from 20 countries and has hosted a series of member gatherings that will continue in 2021. We would love for you to join us, so please take a moment to read our Call to Action, which includes a link where anyone interested in becoming a member can sign up.

Mary, thanks so much for your uplifting perspective on dementia! If someone would like to follow up with you and get more information, how can they best do so?

Anyone interested in learning more can email me at [email protected]. I’d love to hear from you!