Using gaming technology to transport carers and family members into the mind of a dementia patient is revolutionising understanding of this debilitating degenerative condition. By Michele Tydd.

Virtual reality and dementia

A Dementia Australia workshop using  EDIE headsets.
A Dementia Australia workshop using EDIE headsets.

It is 3am and Sara McDonald is trying to find her way to the bathroom through a dimly lit lounge room when she notices what looks like the shadow of a man coming through the window.

The hallway, where the toilet is located, is no less treacherous and has a deep hole in the floor and tiny bugs crawling up the wall.

Amid the sensory overload of distorted shapes and patterns around her, McDonald struggles to identify which of the three identical doors is the toilet. She randomly chooses one, but when the light flicks on she finds herself squatting in the laundry.

It is no dream. McDonald, an experienced social worker, is describing the five minutes she spent inside the head of a dementia sufferer as a player in a disturbingly accurate virtual reality game.

“I was invited to try it during a course I was doing,” says the 37-year-old case manager with Sacred Heart Mission. “But I didn’t know what to expect because I’d never had anything to do with virtual reality. It hit hard. Even though I was in a training room with other people, you feel lost and alone in this scary world … My heart was racing and afterwards I had to steady myself on the back of a chair.”

Dementia is a debilitating degenerative condition that affects more than 400,000 Australians. This multi-award-winning gaming technology, which  was introduced in 2013 as a gamble, has proved to be an excellent training tool for Dementia Australia. Researchers at Swinburne University have assessed the first wave of the technology as three times more effective than traditional classroom teaching methods.

Its pull-no-punches impact has also resonated among innovative members of business and architectural sectors looking to develop more dementia-friendly products with statistics indicating that dementia is shaping up as a medical hotspot for an ageing population.

The technology has evolved from a 10-metre interactive game wall with a connect sensor that reacts to body movements in Dementia Australia’s Victorian learning headquarters in Parkville to a more immersive portable headset version known as an educational dementia immersive experience (EDIE).

It provides two scenarios – a person in the early stages of dementia battling to cope with everyday life in a domestic setting, followed by simple remedy strategies that include smarter placement of furniture, better lighting and clear identification of rooms.

The game is based on interviews with carers as well as with dementia sufferers who still had the ability to describe what they were seeing and feeling. A dark mat on light-coloured flooring, for example, is often perceived as a hole in the floor. How exactly that fear and confusion intensifies as the condition worsens can only be imagined, but this early-stage illustration was enough to shock a skilled worker such as McDonald, who experienced the hole-in-the-floor misconception herself.

“We know a lot about this condition in theory, but to experience it firsthand in virtual reality gives you a new layer of understanding for not just aged-care workers but also families of people with dementia,” says McDonald.

And that is exactly what Dementia Australia’s acting general manager of learning and development, Dr Tanya Petrovich, was after when in 2012 she stumbled on the solution to the conundrum that had been bothering her and her peers for some time.

“We’d been delivering training for about 30 years and there was a feeling we kept going back and doing the same thing, and we kept seeing the same mistakes being made,” says Petrovich.

“For instance, we were constantly getting call-outs to places like nursing homes where a dementia patient was considered aggressive because he or she was throwing things. But if I have dementia and I have no way to communicate what my issues are I might start throwing things. It’s not because I’m aggressive but it’s because I’m upset and frustrated. We needed to get that sense of inner frustration across that books and blackboards can’t convey, and there was not a lot of inspiration out there.”

Around that time, Petrovich struck up a conversation with some game developers who were working on a project at Swinburne University. They told her gaming devices could be used as a powerful educational tool.

“I told these guys my children play games and they didn’t seem to learn anything. But the developers pointed out that when kids buy a game they rarely read the manual because they learn the rules by playing the game.”

Petrovich was willing to give it a go, but the thought of trying to persuade the board of directors that games could be used in dementia training was a daunting prospect.

“I was very nervous but I did a lot of research and found there was an impressive interactive games wall in Dubai,” she says. “So I offered the idea as an alternative to traditional classroom techniques.”

Her fears were unfounded because the board, which at the time included noted Queen’s counsel David Galbally, completely got it. “I think it was because at that stage we had nothing to lose,” Petrovich says.

But the next hurdle – the game’s public unveiling a year later to an invited audience including family members of people living with dementia – was to be the true test.

“The beauty of the game technology is that you can create a virtual world where you’re living the experience,” Petrovich says. “But we knew there was a fine line on how far you can take an experience like dementia before it becomes too scary and upsetting.”

When some people left the room in tears there was concern, but the overarching emotion among Petrovich’s team was relief.

“It needed to have an impact, otherwise what was the point? We wanted people to realise that while they can walk away after five minutes, those with dementia live this out 24 hours a day.”

Anthony Clarke, an architect working on designing better spaces for dementia sufferers, has played the game for professional purposes and regards it as developing technology. But, he says, “It is a brilliant tool to raise awareness for the need for change.”.

“After all the money and talk that has been spent on dementia awareness, I don’t think anything much has changed in terms of design – even new aged-care facilities have not thought too much about it,” Clarke says.

“This technology is a start in making people realise what it’s like to be locked inside a ghastly world of distortion and how even small modifications can help. But we need to look beyond that to cafes, supermarkets and even airports, which are places people with the onset of dementia avoid.

“Dementia isn’t just an older person’s condition – there are lots of younger people with it who are suffering terrible social isolation. We want to take what’s in this game to the next level on how sound, smell and touch can be incorporated into urban design to make life more comfortable for people with all sorts of sensory and cognitive impairment,” Clarke says.

One of the objectives of the virtual reality game is to change attitudes as well as practices. It is one thing to become aware of what needs to be done, but in the end it is about what participants across all sectors do with that awareness.

Sara McDonald says her VR experience has changed the way she works.

“In the game you could hear the voice of an impatient partner in the background with comments such as, ‘Hurry up, and come back to bed’, ‘What are you doing out there?’, which I found really added to the stress.

“I can’t go into a client’s home and start remodelling it, but I can make a big difference to how they feel by something as simple as voice tone and patience.”

This article was first published in the print edition of The Saturday Paper on Dec 15, 2017 as "Reality checks".

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Michele Tydd is an Illawarra-based freelance journalist.

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