Sundowner captures the essence of life lived with younger onset dementia
Even amid the horror there are redeeming moments of humour and beauty.
A common symptom of dementia is wandering. Sufferers can slip away at any hour and become dangerously lost. There was once a woman whose husband was constantly escaping through the front door. She was beside herself with worry. She went to their psychologist who said, "You know, I think we just have to approach it differently. He's quite a polite gentleman, let's work with that, let's try something different." What they did was hang a little symbol for a women's toilet on the inside of the front door. It worked perfectly. Every time the husband approached the front door, he thought, oops, and turned away.
As Kate Denborough tells this and other stories like it, stories that glitter with poignancy and humour, she emphasises that, even as dementia overtakes the mind, personality persists. The core essence of the person remains, it just becomes harder to reach. To find it, sometimes you need to think laterally.
Denborough is a co-founder of KAGE Physical Theatre and the creator of Sundowner, a new theatre work about younger onset dementia, a form of dementia which generally strikes people in their fifties. The work revolves around a letter that a woman is trying to write to her children, while struggling with the gradual disintegration of her mind.
As Peggy (Helen Morse) fights to remain lucid and to capture some sort of legacy, she becomes increasingly anxious, lurching between the present and memories of the past.
It is this increasing anxiety, rather than the dementia itself, that Denborough describes as the "true tragedy" of younger onset dementia. It's also where the title of the work comes from. Sundown Syndrome is a syndrome where people with certain forms of dementia experience an increased level of anxiety around sunset, a condition possibly triggered by mixed light signals, by the transition from day into night.
"Working with Alzheimer's Australia," says Denborough, "we were able to talk to both carers and people with younger onset dementia, people who were aware of what was happening to themselves. That is what I find most confronting. Carers often describe it as the most difficult for suffers. Once they've completely transitioned, and lose that self-awareness, things are in a sense easier for them."
But despite the great anguish and grief associated with the condition – cited by many as their greatest fear – and the fact that there can be no happy ending, Denborough says that the work is not all tragedy.
"Again and again," she says, "the people I met would say to me, 'Please just don't make it doom and gloom. We have lots of laughs, there are terrible times, but lots of funny moments.'"
Indeed, living with sufferers of early onset dementia inspires a new appreciation of life in many carers.
"It's really about living in the moment and enjoying the good times," explains Denborough. "For example, we spoke to this man who threw a birthday party for his wife who has younger onset dementia. There was food and decorations and lots of really beautiful speeches, but the next day she had absolutely no recollection of it. You just have to be really philosophical about it. He said, 'I looked at her face that night and she was having a really wonderful time.' But the next day was a different day."
KAGE are famous for the physical and choreographed sequences in their dramas, which Denborough describes as appropriate to the subject matter, because touch and movement become increasingly important to people with dementia. They have a heightened sense of intuition and a good sense of body language, often able to read situations, even where they've lost the memory of who it is they're looking at, or even how to talk at all.
Apart from Helen Morse, the show also features the other KAGE co-founder Gerard Van Dyck, as well as Michelle Heaven, Stuart Christie and the Tivoli Lovelies, a tap-dancing troupe with a combined age of 746 years, described by Denborough as "likely show stealers". There's also sound design by Kelly Ryall and additional music by Paul Kelly and Megan Washington.
The drama is set in the 1950s in a big house with broad windows through which Peggy's memories come back to her, a dreamy world where things happen beyond the window, just beyond her reach. The work was written by David Denborough, Kate's brother, who gives it a stronger narrative than any of KAGE's previous works, following Peggy's mission to write her last testament from sunrise to sunset. The narrative rides on the power of Peggy's personality even as her world falls apart, torn by the ebbing and flowing of memory, emphasising one of the work's main themes.
"The thing which we had to keep reminding ourselves," says Denborough, "is that dementia is a change in the person rather than a loss of the person."
The show premiered last year at the Castlemaine Festival, and will be embarking on a six-month national tour after it plays at the Arts Centre Melbourne. You can find out more about the development of the show in the ABC documentary Memory Play.