I stand in the doorway, gazing into a dimly-lit, pale-yellow hallway, adorned with old photos. The aged, mahogany floorboards creak beneath Elizabeth and George’s feet as they slow dance; their interlocked, frail hands, shaking ever so slightly. Michael Gazzaniga’s words surface in my thoughts: “Everything in life is memory, save for the thin edge of the present.” We are often told to live in the present, but George and Elizabeth don’t have a choice. They embrace and dance a little longer, until they forget why they’re here, and their soft smiles fade into absent expressions.
George and Elizabeth are actors in an interactive, two person play: Dust on the Shortbread. Performed inside a North Perth home, for an audience of just 15, the poignant piece embodies how dementia affects our sense of identity and our relationships. Dementia is a disease that many tend to overlook; no one really grasps its gravity until it hits close to home, sometimes too late.
In August an 87-year-old man with dementia left his home in the northern Perth suburb of Hillarys. A few days later Alexander Henderson’s body was discovered in bushland south of Mullaloo Drive. Just a few months earlier, the body of a missing man with dementia, Ian Collett, was found in bushland south of Perth. Cases like this are likely to crop up again. According to Alzheimer’s WA, there are more than 40,000 Western Australians with dementia. Without a medical breakthrough, this number is projected to more than double by 2036.
Cambridge University research scientist Samuel Cohen says if millennials live past 85-years-old, the chance of them developing dementia is almost one-in-two. This means their golden years will likely be spent living with dementia or looking after a spouse who is.
Sarah Churchill, 58, is living this reality, except she is not only looking after her partner, but also her father and, previously, her step-mother. Churchill left Perth in 2010 to spend more time with her father in England, who asked her not to find work and take care of his wife with severe dementia. “We didn’t get on, you see, because she had this sort of quite jealous, possessive nature,” she says. “That was five years of pretty much terrible hell, Joyce didn’t just have Alzheimer’s, she had Lewy bodies dementia … It comes with huge paranoia, hallucinations and, quite early on, double incontinence. So, suddenly I was faced with this woman who was crazy day and night, defecating and urinating all over the place.”
Churchill say’s her step-mother’s downhill trajectory was extreme. “If I made the dinner and anything was different to my Dad’s or mine, she would think I was poisoning her. The paranoia is really hard because there’s no way around it at all. No matter what you say, you’re still lying or making it up. You’re still trying to kill them, hurt them, poison them.”
After five years Churchill had a breakdown in front of a social worker and her step-mother was put in a home. Two years later she died. When I express my condolences, her response surprises me: “It’s alright I was relieved, I suppose … The whole assisted suicide should and needs to come into play because when a person reaches the end-stage dementia, there is no point to their life.”
Churchill still lives with her father, who also later developed dementia. Her partner, Ian Fleig, was diagnosed at just 50-years-old, but she suspects the onset began at least 10 years before that.
“It didn’t hit me until the following year. I went to a convention for the carers of people with genetic Alzheimer’s … [and] when I came out I probably sat on a park bench for a couple of hours crying. That’s when it hit me, what I was in for. Because, with my stepmother, I can’t say I really loved her, but of course I love Ian; and so the realisation that he wasn’t going to get old with me, and I have to go through this awful journey with him and make all these terrible decisions just hit me like a ton of bricks.”
Dementia is not only tough for people who have it, arguably it’s tougher on their family. People with severe or advanced dementia lose the capacity to make their own decisions, which means their loved ones or carers are often left to make the formidable, high-stake decisions regarding their medical treatment. Recent research conducted by Advance Care Planning Australia revealed dementia carers are unprepared for end-of-life decisions and require much more support and guidance.
ACPA medical director Dr Karen Detering says too many people with dementia are denied a dignified death, while their families needlessly agonise over the tough decisions. “Dementia is an illness with a known trajectory, yet individuals, families, aged care providers and health professionals still struggle to plan ahead,” she tells Aged Care Australia.
Dr Alexandra Volochyn works at the Rockingham hospital and says increasing dementia awareness is vital because people need to be prepared for the difficult decisions. She says most of her patients are diagnosed because they would’ve had a fall or an accident, and that many dementia patients live alone is dangerous since they could forget to turn off the gas or just leave their home and get lost. “Friends and family quite often choose to ignore what’s happening, either because they don’t understand it or they’re in denial,” Dr Volochyn says.
One of the aims of Dust on the Shortbread – which coincided with Dementia Awareness Month in September – was to open up a dialogue and move away from the taboos surrounding dementia. The directors of the play, Quindell Orton and Serena Chalk, both experienced dementia in their families. “I guess this gave us a strong starting point. I grew up with a mother [who] has been scared of it for the last 30 years” says Orton. “We started from here, we talked and then we read.”
Chalk says the aim of the performance was to, quite literally, immerse the audience in the “thin edge” that people with dementia live in, both harrowing and beautiful at times. “We’re not there to give you a one-on-one manual on how to survive or cope … ultimately, we would like to create space for [the audience] to think and to question and to reflect,” says Chalk.
Despite being the second leading cause of death among Australians, with one person diagnosed every three seconds in the world, Chalk says dementia is not given a high enough priority. “Sadly, aged care in this country is dramatically underfunded. I think that we really need a multifaceted approach through health, through social policy, through community initiatives and the arts,” she says. “It’s about coming up with new ways to approach or tackle the problem, to try and find a solution – if there is one – and to try enable people who do have dementia to live their fullest lives.”
Reading or hearing about what dementia or Alzheimer’s is and trying to understand it through a secondary source is difficult; some say it’s something you can’t really grip unless it’s close to home. It isn’t until you’re standing in someone’s hallway, filled with old furniture and the musky scent of old clothes, just a few feet away from an elderly couple living their everyday life in “the thin edge of the present”, that you can start comprehending the complex scope of dementia.
“It is not just forgetting where your room is,” says Orton, “it is unsaving, unhappening you.”