The Experience of Play in Dementia
by Kathryn Walsh,
When asked to write an article about play, I paused. What is play? It seems so simple and complicated simultaneously. The American Heritage Dictionary defines play as “to occupy oneself in amusement, sport, or other recreation.” Okay, simple enough, but there must be more. Having a background in theatre, I thought perhaps I could get more in one of my old theatre books. I found something that gave me inspiration.
In his book Free Play- Improvisation in Life and Art, Stephen Nachmanovitch writes: “Improvisation, composition, writing, painting, theater, invention, all creative acts are forms of play, the starting place of creativity in the human growth cycle, and one of the great primal life functions.” I know that play is one of the hallmarks of childhood but I’d never thought of it as a primal life function. That led me to wonder how this primal function remains or changes for people living with dementia.
To explore these questions, I interviewed three friends of mine, all of whom are living with some form of early onset dementia. BL and JF are a couple who met through a support group forum. Both are living with dementia.
KW: Has play become more a part of your life now that you are living with dementia or do you find there is less play in your life?
JF: I find there is more play since BL entered my life.
BL: Life can get really serious. Throw in a diagnosis of dementia and it can get REALLY serious. After I shared with a friend of mine my diagnosis, he sent me a t-shirt that said “Roses are red, Violets are blue, I have Alzheimers, Cheese on toast.” I cracked up and thought, you know what, things are going to be alright.
JF: I have become much less inhibited, due to my diagnosis. I was at an event where The Temptations were playing. I saw a colleague who had been diagnosed with breast cancer. She asked me to dance. I said “HECK YEAH I’M GONNA DANCE!” Here are two women with terminal illnesses having a blast.
KW: So what I’m hearing is that unlike, say Frontal Temporal Dementia, it’s not about lack of inhibition, it’s that you now have a choice to be free…
JF: …and LIVE! To be in the moment and enjoy it and who cares what anybody else thinks. I grew up in a fundamentalist religion where we weren’t allowed to dance. I used to live with inhibition and now I’m just loving it.
JF: So much of our play comes from daily interactions.
One uses Alexa, the other Siri on their phones. They really enjoy playing with them together. They not only use it to find misplaced phones or keys, but they ask one of them to find just the right kind of music they would like to enjoy together. They claim to have music going all the time. The real fun comes in asking Siri and Alexa very odd questions and seeing what kind of “weirdo” answers they come up with.
BL: We spent a whole night asking our phones crazy questions.
JF: And Alexa is not nearly as creative as Siri.
I can see and hear the play in them, just in this part of the conversation.
KW: Any last thoughts?
BL: Whether or not you have Alzheimers or any type of dementia, or even if you don’t have it, don’t take life too seriously. We all face different things each and every day, some worse than others. But if you can find time to laugh, to just enjoy…you enjoy the simple things that life has to offer. I always enjoyed the little things, but now more than ever.
I then got in touch with my friend DD.
KW: Do you play?
DD: All freaking day!
KW: Where do you play?
DD: In my head. For me, I am in play, in my head, when things feel in the moment, weightless, timeless-no past no future- and full of joy and imagination. That definition of play as weightless, with joy and imagination- all ephemeral things, are the same as they were before dementia. However, the details of it changed massively.
In my pre-dementia world, I had the gift of teaching. I was a great teacher. I’m a teacher by heart and that calls for real active play. I can’t do active play anymore because I can’t think fast enough.
KW: Tell me more about that.
DD: Active play has to do with interacting and being joyful and having active imagination and zipping from one thing then zipping to another. You can do this with kids as little as two. You can be playing on their stuff and they’ll be playing on your stuff. That is literally like a piece of heaven.
I can’t really do active anymore. I’m not complaining. I can enjoy watching an adult, a kid, two little kids playing together without being actively involved in it. I can trip off of it.
KW: So you can still enjoy play as an active observer when it is outside of your head.
DD: Right. I call it a passive role in the play. But the neutrons that are zipping around in my head are the same. Maybe even a little better!
DD: The other type of play that has changed is more basic stuff, like, depending on the type and the flavor of your dementia….for example, in my dementia, words, and reading, and letters…it’s progressively getting harder so that, you know, I’m not playing scrabble. But there are other games in my dementia that I haven’t lost- anything that has to do with numbers and mathematics. Like playing cards and gin rummy, that goes so fast in my head.
KW: Do you find that you can use play as a coping mechanism?
DD: Yeah, but I used to do that before dementia. I had a wicked tongue. I could always talk s**t out of a jam.
KW: Where do you find you are really able to embrace play?
DD: At the nursing home! I work at this place in Maine where I’m the bingo caller. I can run the bingo and I can be the clown magician, I do voices…the whole schtick! But I couldn’t do it with normal, younger people. That is the golden play. They are seniors in their golden years.
KW: What is good about your play with dementia?
DD: Play is right along the line between earth and heaven. Heaven play is miracles, it’s jaw dropping, a communication with God….but all that other play stuff, it’s not like heaven but it’s better than anything on earth.
After these interviews, I got curious about play as a care partner to someone living with dementia. Stephen Nachmanovitch’s definition of play had me reflect on my own time in a comedy improvisation group when I was in college. I had an ah-ha moment. The skills used as a care partner are the same as those I used in comedy improvisation. The first rule of improv is the YES-AND principle. You must accept what someone says and work with it.
As a care partner, this is something that really happened and now I see how invaluable the YES-AND principle was. Here is a real life example.
KW: You look busy. What are you doing? (the PLwD was holding a white paper napkin vertically with two hands)
PLwD: I’m reading this book. Boy it’s long!
KW: It looks like a long book- and tiring to get through!
PLwD: Yes. Do you think it’s okay to try again tomorrow?
KW: You bet. Tomorrow will be good to try again…and we can.