Swapping brains: virtual tour puts dementia into perspective

Brianna Smrke

The Silhouette

First, they plugged my ears with cotton batting. Then, they made me wear safety goggles with lenses obscured by packing tape. Popcorn kernels were tossed into my shoes. My fingers were taped together. A heavy weight was strapped on my left wrist and ankle. Finally, a spoonful of some vaguely sweet, unpleasantly chunky paste was thrust into my surprised mouth. They told me it was medication my doctor had prescribed.

Tottering, unable to really see, kernels digging into my feet, I was escorted to a room. On my way there, my accompanier ran through a list of ten tasks I had to do while I was in the room. The last one sounded garbled, and just as I was about to ask her to repeat them, I was put in the room and the door was shut.

I was hit by a wave of sound. The TV was blaring a musical from the ‘40s, while the radio played soft rock at a level that should never be heard. The lighting was dim – but since I really could only see out of the corner of one of my eyes it didn’t make too much difference.

What I could see was disorienting. There were clothes strewn all over tables and plastic animals, postcards and books on beds.

Worst of all, there were people watching me. Watching, and recording, but ignoring me. If I asked a question, if I said I was lost, they turned away. Alone, I tried to remember what I had to do. Time seemed to dilate.

Then I remembered one of my tasks – to write a note about how I was feeling. It seemed simple enough, until I realized that I couldn’t see, or hold a pencil in my dominant but disabled hand. Taking the marker in my right, I scribbled “I am disoriented and exhausted.” My feet hurt, my left arm was dragging and I had again been fed a slippery-tasting medicine – I was simply too defeated to argue.

But then, the door opened. “You’re done now, Brianna,” said Marian Cummins from the Hamilton-Halton Alzheimer’s Society. “How did that feel?”

I had just experienced the Virtual Dementia Tour (VDT). The VDT lets you step into the brain of an aging person who has Alzheimer’s disease or some related form of dementia. All the handicaps I had been subject to – the corn kernels in my shoe, the obscured vision, the plugged ears – mimic the limitations these people face in trying to understand what is happening around them and to them. The chaotic, unfamiliar room modelled the hyperactivity of some areas of the Alzheimer’s affected brain, which can make even commonplace surroundings seem frighteningly alien.

The observers were meant to represent overworked nurses and personal support workers in long-term care facilities, who either cannot understand the sometimes garbled phrases of individuals with dementia or are too busy to listen.

The VDT was first developed by Dr. P.K. Beville, but has since been adapted by Alzheimer’s societies around the world, including Hamilton-Halton. The event I attended on Feb. 14 was intended for Mo-Mac Nursing students.

After running through the tour myself, I became an observer, monitoring other students as they struggled to do things we would not even think twice about – folding laundry, pouring a glass of water, even turning on a lamp. I had to ignore their calls for help and record which of the behaviours commonly associated with dementia – like wandering, or losing one’s train of thought – they showed.

It was draining, but also fascinating. I could see the nurses slowly realizing, just like I did, that the world dementia patients experience, the world they live in, is much different than ours. It is a strange and tiring world, a world in which they are not, for whatever reason, treated with respect. It’s a world in which too much is asked too quickly.

It’s also my grandfather’s world. Going through the VDT, I couldn’t help but think of how little I had really understood of what his life – what his daily experiences – must be like. I cringed when I thought of myself getting frustrated with him repeating similar stories, or losing his train of thought. If anything, going through the VDT made it easier to understand why people with dementia behave like they sometimes do. They’re just people who’ve been pushed into a room with blaring soft rock and asked to write a note with a hand that won’t work and eyes that won’t focus. They’re just people who deserve respect and a genuine effort to engage with them on a level they can still reach – not to be called ‘Dearie’ and fed medication, then ignored.

“It’s powerful, isn’t it?” asked Cummins as I was shaking the corn kernels out of my shoes. I weakly nodded, still recovering from the brief time I had spent in the brain of a person with dementia, with the knowledge that what I learned had changed my thinking forever.