One in 12 people over 65 are living with dementia. Dementia is not a specific disease, but is a general term for the impaired ability to remember, think, or make decisions that interfere with doing everyday activities. It’s actually no longer called dementia, but Major Neurocognitive Disorder (MND).
It doesn’t matter what we call it, dementia scares us. We forget where we parked the car and part of us has a small conniption: is this the beginning?
Years ago I had a profoundly beautiful experience with dementia – as it was called then. And it was quite by accident. It was Seniors Week and I had just presented ‘Shooting From My Hip Replacement’, a stand-up comedy show starring people from 65 to 85, reframing stereotypes around ageing, with humour. The funders loved it and asked me to run the same program for carers of people with dementia. I said yes! I turn up at a respite centre at the designated time to run my 8-week program and there are no carers. They don’t want to do a comedy program. They want to lie down. Go shopping. Have a break from the person with dementia. They certainly don’t want to do reflective comedy about how they are coping.
So I end up with 16 people with actual dementia, and this time it’s me who doesn’t have a clue.
I ask the questions I ask all my comedy students: ‘tell me about what annoys you’, ‘tell me about this, tell me about that?’ These are all questions that reflect on the past – challenging to recall with MND. Nothing. I realised how many questions we ask must be troubling to people with this kind of cognitive impairment. ‘What did you do today?’, ‘how are you?’, ‘did you enjoy the biscuits I sent you?’. All scary questions about the place that keeps disappearing. The recent past.
I was failing badly. The 16 in my class watched me with a patient kindness. It’s very humbling when it’s people with dementia feeling sorry for you.
I was so desperate to find a way to engage. Everything I tried, every activity I pulled from my bag of tricks was worse than the one before. By the third week I had people collaging their feelings. It felt very age inappropriate and I felt ashamed that I couldn’t make anything work. I remember this moment of having my back turned to the class, I was almost in tears with frustration and humiliation and this voice came into my head and it said ‘All they have is the moment. Give them the moment Mandy.’ So I turned back and said ‘Barry, I heard you were an amazing dancer, can you show me your moves with Betty?’ Barry smiles, grabs Betty’s hand and suddenly they are up doing some sassy moves across the floor. The group laughs. Barry and Betty laugh. I laugh. I have found the key. Don’t play it backwards. Play it forwards. Give them something new.
So every week I brought in props as a visual cue: a bunch of flowers; a police hat; a stethoscope; a rake; a pretty scarf; a string of pearl; a beautiful Arabic headdress. And I’d create scenarios for two people to interact: Joan had been drink-driving after her daughter’s wedding and Paul the cop pulled her over; Georgie and Thelma both wanted the last piece of cake; and Bess was the Arabian Princess who had two suitors, and when asked which one she would choose, she says in a scratchy drawl, ‘I’ll have them both and then keep whichever one lasts the longest’. We laughed deep and hard every week. It was magical.
I never asked about people’s past. I wanted to use my intuition to work things out from what they showed me. It taught me to listen and observe. It taught me how valuable joy is.
It wasn’t until Bess’s daughter came to our final in-house performance on the eighth week that I found out Bess hadn’t spoken for 2 years. The funniest most outrageously witty woman in my class was apparently mute. If I had known I probably wouldn’t have asked her to take a risk. But I didn’t, so I did – and she was talking. I guess this new place of playing it forward gave her somewhere safe. She couldn’t get it wrong here. So she could speak. I called this ‘Stand Up for Dementia’ and it taught me how important play is. This wasn’t about me. I wasn’t dressed up in crazy clothes clowning. I got out of the way. It was about them. It was about them relating with each other. It was about creating scenarios that brought them together. Because dementia takes that away. There is a palpable loneliness and isolation that just hangs in the room. But for the 90 minutes or so we played, there was just laughter.
I ran 30 classes around the region over a number of years, and was funded to teach facilitators. A study was published in an international, peer-reviewed medical journal.
And then the funding dried up. I’ve never been able to make a class happen again.
This year’s theme for Seniors Week – which btw is this week – is Reach Beyond. It made me think of this experience, when I had to reach beyond what I knew, beyond my pre-conceived ideas and my expertise to meet them. And the people with dementia got to do the same. They got to be amazing, and funny and not the audience, but the stars of the show. Their show.
