Imagine waking up and not knowing where you were or how you got there. Imagine not remembering the people around you: family, friends or caregivers. If that sounds like a nightmare, it’s a reality to the millions of people who suffer from dementia. It’s certainly not a laughing matter . . . or is it?
Mary Fridley and Susan Massad want you to know that it can be a laughing matter. The two women will spearhead a free workshop “The Joy of Dementia (You’ve Got to Be Kidding!)” at the Sons of Italy Hall, 117 Swanton Street in Winchester on Thursday, September 12 from 5 - 7:30 p.m. sponsored by Artis Senior Living in Reading.
This experiential gathering is open to people living with dementia as well as other family and community members who are interested in using the dementia diagnosis as a starting point for creativity and who want to learn how these valuable tools can be used to help navigate the dementia experience - and their lives. Educational credit is available for professionals attending.
Fridley, a pro-bono Director of Special Projects at the East Side Institute in NYC, and Massad, a retired physician with 51 years of practice and teaching in internal medicine, spoke recently about the program and the effects laughter, specifically involving play and improvisation, can have on those suffering.
Fridley has practiced social therapy for 12 years and continues to use the social therapeutic approach as an Institute faculty member. She said she recognized the value of play and improv in helping people grow, develop and create new lives.
She called these techniques “enormously valuable” that can help people “get out of stuck places.”
Fridley added, “we can bring (these techniques) to the aging and dementia population.”
She expressed concern about how dementia is viewed, worried about what she called the “tragedy narrative.”
“This distorts who they are as human beings,” she believed.
Dementia is hard enough, she noted; it can be isolating and fearful. On a personal note, Fridley noted her mother passed away from late-stage dementia. Massad, as well, knows first hand the pain of dementia, as she said her sister suffers from it.
Massad said she preferred to work with people who have dementia including caregivers, partners and those who are just worried. She said the workshops are a mix of people and a powerful way to include people with dementia.
Unfortunately, dementia brings with it stigma and shame. However, Fridley’s and Massad’s workshops create an environment to play with that idea of stigma and shame. It’s simply another way of seeing possibilities.
Massad noted how we all change, which can be irritating, but added that doesn’t mean life’s over. Unfortunately, for those with dementia, sometimes they’re almost locked away and forgotten about. These workshops, though, allow those suffering back into the light.
When Massad and Fridley bring their program to Winchester, it’s not about improving the memory of those with dementia (there is no cure); rather, it’s about giving patients access to art and creativity-based programs that they wouldn’t otherwise receive.
“No program depends on memory or exercising memory,” Massad said, adding that art doesn’t depend on memory.
Fridley remarked how they usually receive positive feedback from caregivers and loved ones of those with dementia. She noted they don’t get to come together often and play together. These programs can shift what they believe is now possible.
The Washington Post featured Fridley in an article this past February entitled “Changing ‘the tragedy narrative:’ Why a growing camp is promoting a more joyful approach to Alzheimer.” She said the piece received 600 comments with responses ranging from wonderful to enraged. Most were upset about the use of the words joy and dementia together.
Fridley said she understood why people would react that way: “Dementia is extraordinarily hard, it’s a rollercoaster of a ride to live with someone with dementia.”
However, she said most people are only being presented with half the picture. She and Massad want to show people the other half.
Massad added the joy in the title “Joy of Dementia” doesn’t mean the disease is a joke; instead, it’s the joy of creativity.
“We consciously chose that title,” Fridley acknowledged, adding that it’s provocative. “There are a lot of things they say you can’t play with.”
It’s a deeply uncertain world, she said, and “we need new ways to deal with it. Let’s challenge assumptions about dementia.”
Sometimes we treat people with dementia as less than human. Fridley points out how a human is considered a knower, reasonable and rational.
“If you lose those abilities,” she said, “some would say you’re no longer human.”
But she acknowledges people can connect in a whole host of ways - poetically, by being silly or by falling in love. She wants to reintroduce people to that.
Mostly, though, “people love to play,” she admitted.
When you have a physical weakness you exercise to strengthen the muscles. Fridley’s and Massad’s workshop is like going to the gym for your cognitive muscles.
When they talk about play, Massad said they’re talking about improvisational games. It can simulate what it’s like to have dementia, because when you improvise you don’t know what’s coming next. As Massad said, the basic rule of improv is to accept everything.
Massad herself is a former improv actor.
Dementia care is also an improv game in a way: you have to be in the moment, listen and be flexible. Improv is all about listening and going on whatever journey your partners take you. Curiosity is also very important; it’s about listening and engaging.
Fridley said improvisational play is a growing community. People can come away with a different attitude about dementia patients.
“People can take it home,” she acknowledged.
For dementia patients, they tend to live in an alternate universe, due to memory loss and other cognitive malfunctions. If they tell you they just had lunch with Susan, but Susan died five years ago, it might seem obvious to point that out. However, Massad suggests you validate their reality. Instead of telling them Susan died, ask them to tell you more about her.
As Fridley noted, “people rarely remember what you say, but how you say it. People respond to things.”
She added how “we underestimate what most older people can do.”
If nothing else, their workshop can broaden the ensemble of someone with dementia.
“We’d like to help you out so you don’t have to do this alone,” Fridley said.
In the end, it comes down to a strong support system.
“Find someone who’ll support you,” Fridley suggested. “Let people say what they need to say.”
Mary Fridley is pro-bono Director of Special Projects at the East Side Institute (Institute) in NYC and an accomplished teacher and workshop leader. She practiced social therapy for 12 years and continues to use the social therapeutic approach as an Institute faculty member. Mary co-leads two popular workshop series, “The Joy of Dementia (You Gotta Be Kidding)” and “Laughing Matters,” for people of all ages and life circumstances across the country. 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.” Mary is also a playwright and theater director and works as a non-profit fundraising consultant.
Susan Massad is a retired physician with 51 years of practice and teaching in internal medicine. For the past 37 years, she has been a builder of the All Stars Project and the Institute. In 2006, Susan launched a senior theater workshop, the New Timers, at the All Stars Project in NYC and serves as a faculty member of the Institute, where she leads ongoing conversations on health, wellness and growing older. She is co-author of “Creating An Ensemble for Performing Health” that will appear in an upcoming book published by the Taos Institute. Susan has also written a play, Remember? Remember!, that deals with aging and memory loss.