I was nervous about creating a dance class for people with Alzheimer’s because I couldn’t teach them steps. I couldn’t expect them to learn a sequence because the attention necessary to watch and repeat movement simply isn’t there in people with moderate dementia. This meant that I couldn’t do anything I usually do when I teach. As much as I prepared, I felt totally at sea.
When I walk into the beautiful front hall of CareOne’s south Jersey dementia-care residence to run my first workshop, it looks more like a hotel reception area than a place for people with Alzheimer’s. There are four categories of resident—mild, moderate, and two increasingly severe stages. I was to work only with the first two groups. I had read that props came in handy, so I have with me scarves, balls, maracas, tambourines, pinwheels, and a large supply of soap bubbles.
I knew from previous experience with my stepmother, who lived the last two years of her life in a similar place, that dementia comes in many flavors. It may bring out anger or mellowness or overt sexuality. People who were quiet before may regress into themselves; the guys who were class clowns may be boisterous and loud. I always come into my dance classes with a lot of confidence, but I have to say that this experience was humbling.
As I enter the space and started setting chairs in a circle, the attendants begin bringing in the residents. Some people in the room seem bored, some are laughing, some are hostile. One tiny woman in a walker with witchy white hair refuses to join the circle of chairs. “Come sit over here,” I invite her. “They don’t want me in their circle,” she responds, standing her ground. “That’s fine,” I agree (I have read that you should never say no but rather, deflect the situation). “You can sit here,” and I indicate a huge armchair with its back to the group. “Just listen to the music.”
She stands her ground. Then another resident comes over to her. “Edith!” she coos, “come sit by me,” and the woman allows her to lead her into the circle.
Some residents walk in; some are transported by wheelchair or walker by aides. I shake everyone’s hand and call them by name (I asked for name badges before I came), and tell them how happy I am to meet them. “What are we doing here?” a woman asks me. “We’re going to dance,” I tell her. “And sing.”
The circle fills up. Now there are twenty, many bandaged and bruised because people with dementia fall a lot. There are about eight wheelchairs, in part to accommodate movement problems, but also (I think) because it’s easier to transport people around rather than insist that they follow you. Several people try to get out of their wheelchairs during class and the aides rush in, not wanting any more accidents.
I walk the circle, telling everyone that this is a time to enjoy themselves. I open my arms wide and ask them what my gesture looks like. One woman says it seems like I’m holding a big beach ball. (She’s right!) “Yes, it could be a beach ball!” I say, “but it’s a hug.” I am borrowing this opening from one of the experts I consulted, and I’m afraid it sounds fake… but I continue. “I’m just feeling like giving everyone a hug right now.”
A few people smile faintly.
We start with a song I assume everyone knows–“You Are My Sunshine.” When you can’t rely on your students having memory to pick up steps, you can’t teach choreography. So it is helpful to have evocative words that spark the imagination. This song is useful because it has “sunshine,” “you,” “make me happy,” “skies are gray,” “how much I love you.” I mime the shape of these phrases and try to make eye contact with as many of my group as possible. By the end of the song, at least half are making gestures like the circle of the sun and the hugging of “how much I love you.”
There are also those who sit stolidly, hardly moving, staring at me or deliberately away from me, like Edith. Each time I approach her—with a tambourine or a scarf or a pinwheel, she firmly rejects it. She and the woman who brought her in are like the cool girls, gossiping together through class, making remarks like, “This is silly. This is ridiculous.” Luckily, no one else seems to be listening to them and eventually, they get up and leave.
But I have some real successes. I put on “Lara’s Waltz” from Dr. Zhivago and seem them respond. I start to tell a story of a romantic ballroom on a dark night, everyone wearing ball-gowns and tuxedos. These people are of an age to have worn such things at dances! I get up from my seat and sway, waltzing to the music. Now lots of people are swaying, so I dance up to them in turn and say, “Roy, will you waltz with me?” taking his hand, or “Beautiful waltz, Ruth,” taking hers. She beams and says, “YOU are beautiful.” Suddenly the job is easier.
Until the next piece I try, where I ask people to sing along to a simple melody and alternately lift and lower their arms. Now there are some people asleep, others chatting to themselves or others, and a shift change where aides walk through the room on their way to pick up clients for the next activity. The clock says 2:57 and I am drenched with sweat. I stop trying so hard and ask them to breathe and just enjoy the day.
The class, thankfully, is over.
Next time would be easier. I wouldn’t even try to work with the whole group at once, but would move around the circle slowly, one-on-one, as the music played. I realized there was no way that one person, even someone much more experienced with this population than I was, could keep these twenty people doing the same thing at the same time. I also felt that there were a few residents I could turn into my helpers—they could hand out props to the others, giving me more space to relate directly to each of them.
My students always train me. My work is not the hardest thing. The hardest thing is having dementia. Research, prevention, awareness, and more of the same is needed urgently as we all age. And fingers crossed and double crossed that we and our loved ones are spared.
We’re all just dancing in the dark here.