A Walk Through Dementia

Field NotesStress

A quick note about this section

The creative process is one of constant discovery. You’re always looking for new ways of seeing, thinking and doing. Along the way, some things stand out and we put them in our Field Notes. This is a collection of ideas, places, people and things that we’ve found that we think are worth sharing and that all loosely fit within the theme of the issue.

How does someone with dementia see the world, and can we see it with them?

Written by
Raylene Knutson

You walk into the grocery store. Despite visiting it a few times a week, today it feels unfamiliar. There is a labyrinth of fluorescent-lit aisles, shelf after shelf overstocked with too many products that look the same with their tiny text. You check your shopping list for the fifth time. What is that something you are seemingly missing? The cashier sighs as you attempt to gather the correct change, eyeing the growing line behind you. Your heart races. You lose count halfway through.

You feel confused, fogged in, and it’s terrifying. There are few things scarier in life than feeling that you’re losing your mind.

And then you take off the headset.

Your life returns to normal. You have just experienced A Walk Through Dementia, an Android-exclusive Google Cardboard virtual reality (VR) app designed to put you in the shoes (and mind) of someone living with dementia.

A still from the at-home scenario from A Walk Through Dementia. Image courtesy of Alzheimer’s Research UK and Visyon.

Widely misunderstood, dementia is too often simplified as a byproduct of a population growing older and becoming more forgetful. It was in this grey zone that Alzheimer’s Research UK (one of the nation’s leading dementia research charities) and Visyon (a digital innovation company) recognized an opportunity to help others make sense of the disease’s complexities.

“We felt the best way we could engage people was to completely immerse them in what it would be like for themselves,” says Laura Phipps, science communications manager at Alzheimer’s Research UK.

Following extensive research into symptoms and experiences, the two teams developed three everyday situations —visiting a supermarket, walking down a busy street, and making a cup of tea at home — each focused on a multitude of daily challenges that go beyond memory loss. They shared these scenarios with a small group who have dementia: their families, caregivers, and doctors; and an expert neuropsychologist focused on understanding how symptoms are experienced.

We had people, even those who had never been affected by dementia, break down in tears.

The group’s stories informed the app. One woman in her mid-40s with early-onset Alzheimer’s disease mentioned how her purse would get heavier and heavier throughout the day because she would only pay with bills, as it was too difficult to count coins at the cash register. Another shared how she experiences puddles and dark mats as large holes as a result of a rarer symptom of visual trickery.

“The main challenge we had was figuring out how we bring users into someone’s mind, not just visually, but also from a sound and audio perspective. We explored a sort of dialogue, a voice that’s more like thinking … it helps you into the journey of becoming someone else,” says Pere Perez, CEO of Visyon. While initially a strange experience, you gradually come into their role and acknowledge their thoughts, which in turn triggers something inside you. Sounds from the environment, rapid heartbeats, and panicked breaths add to the immersion.

“I expected the app to potentially divide people. Obviously, it’s impossible to recreate exactly what it feels like to have dementia. Everyone experiences it differently, and it’s something that’s really emotive … but the response was overwhelming. We had people, even those who had never been affected by dementia, break down in tears,” says Phipps.

The project encouraged Perez to reflect on his father-in-law’s condition. “He is in the initial stages of Alzheimer’s disease. Sometimes he’ll look after my kids in the park, and we think he is fine. I have since learned how stressful that situation can be for him…. I’ve learned that they need help from day one. They need help so they don’t get too stressed or feel completely useless. These situations accelerate their deterioration,” says Perez.

Virtual reality has the potential to educate people about dementia, but according to Phipps, it can also help those suffering from the condition. “VR can put you anywhere. For those who don’t have the confidence to leave home anymore, can’t travel to see relatives, or go to significant life events … we can use VR to help improve their quality of life.”

Raylene Knutson

Raylene is the managing editor of Frontier Magazine. She is a graduate of Ryerson University’s journalism program, and in her final year was Editor-in-Chief of the Ryerson Review of Journalism MagazinePrior to Frontier should worked at Bruce Mau Design as an Account Manager.

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