I used VR to find out what it's like to have dementia -- and it was a terrifying experience

Dementia AustraliaBefore: The first scenario in a ‘disabled’ environment, and after: the second scenario in an ‘enabled’ environment.

  • Dementia Australia has developed a VR experience for professional carers.
  • The program is designed to allow the carers to see the world through the eyes of a person living with dementia.
  • It’s a confronting yet educational experience.
  • The not-for-profit organisation now plans to develop a similar program for family members of dementia sufferers.

I could hear my heart rate increasing.

The walls around me were moving, making me feel dizzy and disorientated.

I couldn’t figure out how to open the door of my bedroom.

As I approached the hallway, the floor gave out beneath me and I was forced to hug the walls to make my way past.

In a dark room, I found where I thought I needed to be. As it turns out, my mind was playing tricks on me and I peed in the laundry basket.

Dementia Australia

While this wasn’t a real experience, it was a taste of what it is like to suffer dementia.

Dementia is the leading cause of death among females in Australia, and the second leading cause of death overall.

I bet you didn’t know that.

And not just that, there were an estimated 46.8 million people worldwide living with dementia in 2015. This number is now believed to be over 50 million, and expected to double every 20 years, reaching 75 million in 2030 and 131.5 million in 2050.

What I experienced was a program developed by Dementia Australia called “Educational Dementia Immersive Experience”, or EDIE for short.

Using Samsung Gear, the program is designed to help professional carers — anyone from an assistant in nursing to registered nurses, a care staff employee, a community and lifestyle assistants — see the world through the eyes of a person living with dementia and enhance carers’ knowledge of dementia whilst exploring a supportive approach for improving life for sufferers.

“[The program gives carers] more insight into what it feels like to have dementia,” said Andrew Austin, a facilitator at the Centre for Dementia Learning.

“Until they understand what it is like to have dementia, some people really just don’t get it.

“I suppose the penny drops, in a sense.”

But was is dementia exactly?

“What we say is that dementia is this broad umbrella term,” says Austin. “So when we say the word dementia we’re talking about signs and symptoms, such as the ability to think clearly, behaviour and personality changes, memory impairment, the ability to make sense of objects.

“Now, something may be causing those signs and symptoms. That may be Alzheimer’s. Alzheimer’s disease comes under the umbrella of dementia.

“There’s about 150 types of dementia. Alzheimer’s is the most common form, with 65% of people with dementia will have the Alzheimer’s type.”

Developed three years ago, back when the organisation was known as Alzheimer’s Australia, the program presents users with a simple obstacle and asks them to achieve the same result in two different environments.

“Edie [your character in the experience] is trying to achieve something that most of us do everyday without even thinking about it — going to the toilet,” says Austin.

“What we talk to [health professional who take the experience] about is how the built environment in which we live in can either enable a person with dementia, or disable them.”

Thus, there are two scenarios in which the VR explores: the disabled, where you fail to correctly go to the toilet, and the enabled, where you succeed.

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Before attempting this VR experience, I mentally prepared myself for the feelings that I might experience in such a situation.

But it was far more overwhelming that what I had expected.

My lack of awareness and understanding about the broad scope of symptoms that those with dementia can experience left me feeling exposed and vulnerable.

“It can be [confronting] especially if someone close to you has dementia,” said Austin. “But I hope it puts in focus that we can change things and make things better for people with dementia and they are just small things that will make their life so much easier.”

“It’s important to recognise that dementia isn’t a static thing, it changes from day to day. We have good days and bad days, and it’s the same thing for people with dementia.”

What it felt like

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I had been warned to anchor myself to reality by holding on a chair or sitting down while in the virtual reality — and I’m glad I did because from the moment I entered the first scenario I was disoriented and dizzy.

I woke up in a room that was dark with strange shapes and shadows on the walls.

I struggled to walk over clothes that had been left on the floor and couldn’t figure out how to open the door to get out.

My spacial awareness was limited and I kept bumping into furniture.

I could hear my heart racing and was scared of things that I know I didn’t need to be scared of.

There was a dark rug on the floor of the hallway which made it feel as though the world had fallen out beneath me. I had to hug the walls to get around it and to where I needed to go.

Once I was in what I thought was the bathroom, I relaxed and went to the toilet. But when the lights were turned on I realised in fact it was the laundry basket I had used as the toilet.

I was embarrassed, confused, frustrated, and most of all, glad to take the VR headset off.

At this point, carers would discuss with Dementia Australia what they experienced, how it made them feel, and ways they could improve the situation for Edie.

Small adjustments such as night lights, sensor lights, labels, the use of contrasting colours, and minimal patterns on walls and floors are just some of the things that can help.

And once applied to the second experience, it became a much easier, more empowering experience.

Dementia AustraliaBefore: The first scenario in a ‘disabled’ environment, and after: the second scenario in an ‘enabled’ environment.

Right now, the experience is only available to professionals, however recent funding from the state government has enabled the organisation to begin plans to develop a similar experience for family members of those who suffer dementia.

The organisation is also due to present the technology at the Alzheimer’s Disease International Conference in Chicago — the largest international conference on dementia in the world — where they may attract interest from international health professionals who seek to use it in other applications.

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