Often when we tell people we lead short-term groups for people living with dementia, care partners, care providers, and friends and family, we get comments ranging from, “Oh, that must be so difficult and painful!” to “Wait, people living with dementia participate?” We’re not surprised, since traditional psychology views dementia as a tragedy for everyone involved. Our work challenges this narrative and offers the possibility of emotional growth and development for all involved.
How is this possible? We practice a group-oriented approach to human development called social therapeutics that relates to people as creators and performers of their lives. Rather than trying to “fix” an individual from the inside out, we focus on social growth and collective creativity. Everyone is related to as a creator of the group, and everyone has something to offer, regardless of cognition. Our experience is that our human ability to perform, pretend, play, and improvise is key to our emotional growth.
Over the last four years, we’ve been offering four-week short-term groups, “Creating New Performances of Memory Loss, Dementia, and Growing Older” through Life Performance Coaching (www.lifeperformancecoaching.com), where we are on staff. Our groups are improvisational in nature. We often start with an improv game so that people can experience themselves as part of an ensemble. We then invite people to share whatever they would like, and we ask the group to respond and create something new together. We find that bringing a wide variety of people together gives everyone a better chance of generating development. As coaches, we’ve been challenged to explore our own fears as they relate to dementia and growing older. We feel it’s important to get close to people’s emotional pain and that we, as leaders of the groups, are being transformed by this process as well.
People grapple with very difficult issues in our groups. Part of the tragedy narrative of dementia is that the person who lives with it “goes away” because they no longer have access to memories and sometimes language. In one group a woman felt she was losing her mother to Alzheimer’s and that she needed to let go. The group asked what she meant by “letting go” and asked if she was willing to explore what their relationship could become now, given her mother’s Alzheimer’s. She had never considered the possibility that she could have a new relationship with her mother that didn’t depend on her mother’s memory.
A different group played with the idea of breaking out of the paradigm of truth and exploring new ways of relating to people. One woman expressed her frustration when her husband could not remember what they had been doing for the last hour. A man who had early-stage Alzheimer’s suggested that she respond to him using improv – that she didn’t need to hold on to “truth” and could respond in a playful way. He felt they would have more opportunities for connection in their relationship. The woman found it enormously helpful.
The performatory nature of the group creates opportunities to literally play around with dementia in new ways. One man, who has early-stage Alzheimer’s, often asked the groups to be philosophical, with questions like, “If I can’t remember who I am, will that be hard for me? Is it possible that I will enjoy my life even more?” He later told the group that he now uses three times as much deodorant in his life simply because he can’t remember if he put it on. He joked that he’s the sweetest smelling man around, much to the amusement of the group.
One man joined our group because he was angry that his mother has developed dementia and she was no longer “his rock”. He said, “My mother isn’t who she used to be and I want her to come back.” The group asked him to consider that his mother had in fact changed – that she was in a new place in her life. With the help of the group, he decided that he was the one who needed to change. He decided to try some “new performances” with his mom. He shared new discoveries each week. Instead of correcting his mother when she said something that wasn’t based in fact, he decided to respond to his mother playfully. As he became more willing to “play” with his mother, his anger was transformed, and he began to see new possibilities emerge that he had never considered possible.
In a follow-up survey one person responded to the question “Did you learn anything new about yourself by participating in the groups?” with “My mom is in the last stages of dementia as we speak. I learned to play and accept where she is. I learned how to enjoy and to be giving to her much more. I also learned how to listen and learn from folks in all stages of dementia and in caregiving roles”.
What we are finding hopeful, and humanizing, is that people do grow emotionally in our groups, including people living with dementia. People’s experiences of shame and isolation are being transformed into feelings of connection and new possibilities. The groups are exploring our human capacity to create meaning that doesn’t depend on memory or cognition. In our role as coaches, we are transformed by the courage and willingness of our clients to break out of roles that are isolating and dehumanizing. We are inspired by the leadership that emerges in our groups. We have seen over and over again that emotional development is possible for everyone involved.