Every aspect of dementia is simultaneously fascinating and terrifying for me, and I have often wondered what it feels like to suffer this affliction.
So naturally I jumped at the opportunity when I learnt that Senior Helpers Launceston offered a virtual dementia experience that shows people what it’s like to live with the disease that is the second biggest cause of death in Australia.
On arrival, I was given thick gardening gloves, painful shoe inserts, blacked out sunglasses, and a pair of heavy duty headphones that continually played a mixture of loud American talk-show hosts and background static.
Fully kitted out in my new sensory-altering attire, I was lead by the hand into a dark room which resembled a one-bedroom flat not too dissimilar to the one occupied by my own grandmother.
From there, I was told a list of commands which I had to complete in eight minutes, however the headphones ensured that I was not able to hear half of them.
Left with just a photographer by my side, I was off on my journey to complete several simple tasks which non-dementia sufferers take for granted.
While I was able to manage the first two tasks, set a table with knife and forks and put on a jacket, fairly quickly, I became confused and unsure of what to do with myself soon after.
My anxiety levels started to creep up and peaked at times when loud alarms or slamming door noises would come through my headphones.
The intermittent strobe lights were also unbearable.
For what felt like hours I was confined to only being able to do two things – wander around aimlessly and look at various objects through my heavily tinted glasses, or sit down and hope that the complete sensory overload would soon come to a halt.
For most of the experience I felt anxious, lost, helpless and completely devoid of any purpose inside or outside of that room.
Put simply, this was not an enjoyable experience.
Dementia in Australia
- More than 400 000 Australians currently live with dementia
- Dementia is the second leading cause of death in Australia
- By 2025 some 225,800 carers will be needed throughout the country
- By 2025 the total cost of dementia is predicted to increase to $18.7billion
“People think that dementia is just about memory – it isn’t. Because the brain controls the whole body, this is a whole organ that is failing and dying before the rest of the body,” Silent Helpers director Leonie Williams told me afterwards.
“They will lose their language centres, so not only do they lose the ability to understand what they’re saying, but they also can’t string a sentence together.
“[Dementia carers] need to look outside the box and look at how [sufferers] are behaving and respond to that appropriately.
“You can’t take away their independence, you can’t take away some of the things they can do, it’s important to always do things together.”
The need for this kind of care is particularly relevant in Tasmania where we have both the oldest, and fastest aging population in the country.
The soon-to-be-built dementia village in Hobart is an example of a progressive approach to dementia care that allow sufferers to maintain some independence.
The suburban village will be custom-built for dementia sufferers, replete with housing, cinemas and supermarkets that will allow dementia patients to live in a safe, monitored environment.
Academics at UTAS’ Wicking Dementia Research and Education Centre are taking it one step further.
“We are conducting research into age related diseases of the brain, trying to find ways to prevent the onset of brain disease,” centre co-director James Vickers said.
“The centre is investigating whether actively stimulating the brain through complex mental stimulation, would keep the avenues of brain plasticity alive. Our findings to date are very promising.”
In the meantime, however, Mrs Williams emphasises that 24-hour care facilities must be available for dementia patients in Tasmania.
“A lot of money goes into dementia care from the federal government, but that does not always translate through to 24-hour care,” she said.
“We seem to think that everybody lives on the same clock that we live by, but with dementia [sufferers] lose their time clock.
“The staffing intensity needs to be greater to ensure that this person still has a quality life, and they’re not wandering around wondering ‘What do I do next? Where do I go next? I’ll just sit here because I don’t know what to do.’”
The virtual dementia experience is available at Senior Helpers Launceston for $20 per person.