Seeing is believing

The virtual dementia experience at Alzheimer’s Australia Vic triumphs in its goal to provide a window into the world of someone living with dementia. Australian Ageing Agenda recently visited the centre and spoke to the developers behind it.

The ticking of the clock punctuates the seconds I stand in this hallway.

I notice the striped wallpaper on the wall to my left and the spotted carpet underneath my feet.

I can hear the choir of chirping birds outside. They must be nearby.

Their song seems to be blending with the ticking clock.

Suddenly, I feel confused and disorientated, as the stripes of the wallpaper start to move and sway. It’s as if the wallpaper has come to life and begun waving in the air. I feel slightly unsteady where I stand.

Compounding that, waves of intense noise have surfaced all around me. This isn’t easily identifiable sounds or voices; it’s more like angry interference.

Then, as quickly as it began, the moving of the stripes ceases and the noise dissipates. My breathing returns to normal and I can move forward again. I open the door in front of me.

I’m in the bathroom. The glare from the white tiles immediately blinds me. It takes my eyes some time to adjust, as I scan the room to define familiar objects. But I can’t. The glare is too strong; the light too bright. Squinting, I can see two large shapes ahead of me – a toilet, or a basket perhaps?

I find my way to the shower and open the door. I raise my hand to turn the tap.

It hits me like a freight train. I can feel the rush of the water, the full force bearing down on me. The noise is intense; I want to block my ears. The water rushes violently in front of me and everything seems to be jolting about. I’m suddenly very aware of this confined space and I feel intensely uncomfortable in it.

Then, just as the stripes in the hallway had done, the intensity and the noise disappears in a flash. The space has returned to normal. I can stand back and make sense of it all.

What I have just encountered is the virtual dementia experience, a high-tech sensory environment that Alzheimer’s Australia Vic hopes will significantly enhance the training it provides to caregivers.

The concept is simple: we can all read about how dementia impacts a person – the inability to distill different sounds, the glare from white surfaces, the distortion of stripes – but it’s quite another matter to experience it.

Located at Alzheimer’s Australia Vic’s new centre at Parkville, the experience has been a year in the making and is the result of a collaboration with game developers Opaque Multimedia.

Through extensive research, the developers at Opaque Multimedia have incorporated the effects of ageing and dementia to allow the user to experience the cognitive and perceptual difficulties a person with dementia faces.

“The concept was to use various sensory elements to create workshops that really engaged the audience, which for us is mainly professional carers,” explains Dr Tanya Petrovich, manager of business development at Alzheimer’s Australia Vic.

“The objectives were to put the carer in the shoes of the person living with dementia and experience what that feels like, and second, to understand what a dementia friendly environment is and what it is not.”

The program allows caregivers to walk through a standard home and experience it as a person with normal cognitive function and as a person living with dementia.

The centre achieves this by using doughnut shaped mood lighting, a 10-metre wide by two-metre tall projection wall, a surround sound system, an interactive touch screen and gesture-sensor technology.

The operator uses their hands to move through the virtual home and to grab things and open doors. The movement is mirrored by a pair of virtual hands on the projection.

The instructor can select chapters, jump from one room to another, turn on and off ageing affects and run scenarios with and without cognitive difficulties.

The program’s power

Discussing the impact of the program’s realism, Petrovich points to a couple of Alzheimer’s Australia staff who have parents living with dementia. “I spoke to them after and they said the experience had such an impact on them. One of them said they could now understand why their mother really hated going into the shower. Suddenly it became very real for them. Working in this industry, having a fundamental understanding of what is dementia, you talk about it, but when you feel it, it’s so different.”

Norman Wang, art director at Opaque Multimedia, expands on this by saying the system aims to give the user a visceral understanding rather than an intellectual one: “We can read about things, talk about what it’s like to have dementia, and you can understand it from an intellectual perspective, but this system is designed to give a visceral experience.”

Wang says that as part of the ageing process there is a decline in perception faculties and that, coupled with a decline in cognitive faculties associated with dementia, means an inability to distinguish one sound from another. “They blend into one murky, loud background noise,” says Wang, explaining the program’s use of sound.

“For the person with dementia, background sound and conversation all starts to meld into one and they don’t distinguish them. They talk about constant noise,” adds Petrovich.

Furthermore, James Bonner, technical lead at Opaque Multimedia, explains that the blurred lines of vision around the edges of the screen, and the use of different and distorted colours represents vision loss associated with cataracts and glaucoma.

Pioneering program

As far as Opaque Multimedia and Alzheimer’s Australia Vic is aware, this use of serious gaming technology is unique in aged care and dementia care training.

“There are other uses of gaming technology out there. In nursing they use avatars for the students to practice in different scenarios,” says Petrovich. “It’s not unusual to use gaming type technology in healthcare, but certainly in aged care and dementia care as far as we know there’s nothing else like this.”

“Serious gaming is a small industry, but one that is growing. There are other examples in nursing and in the mining industry,” says Bonner.

Wang says that law enforcement is also using gaming technology to enhance its training programs. “That’s probably the closest other example, and yet it’s still very different to this,” he says.

Development

“When we started we knew very little,” says Bonner. “We did some research using the Alzheimer’s Australia library and some other resources to find out what effects ageing and dementia has on someone, and then trying to live that experience through this environment.”

“From our carer stories we know the area of the home that has the biggest issue is the bathroom,” says Petrovich. “Often people with dementia don’t want to have a shower, or there’s a concern around it. That’s what we focussed on initially, the shower scenario and what the issues for people with dementia are.”

Bonner adds that the research and planning phase took longer than the construction stage. The developers also spent time in a residential aged care facility speaking to carers and people with dementia.

“We had to prioritise a list of available options, as there were relative constraints on what we could and couldn’t do,” explains Wang. “Together with Alzheimer’s Australia we narrowed down the wish list to focus on a few core learning outcomes.”

For the developers, the project meant abandoning standard gaming development practice; in effect, they threw out the rule book.

“Normally when you have a video game you’re there to have fun, you’re there to entertain people. You’re not there to engineer confusion. Your aim is to make the environment as straightforward and usable as possible. But this time around, we basically had do opposite of that,” says Wang.

“It did give us an idea as to why conventional wisdom is conventional wisdom,” says Bonner. “When you deliberately break the rules you find out what their purpose was.”

Training package

The virtual dementia experience will be incorporated into Alzheimer’s Australia Vic’s training workshops for healthcare staff and carers.

Each carer will use the virtual experience for about 10 minutes, as both a person with normal cognitive function and as a person with dementia. That experience will then be reinforced by a traditional training workshop where participants discuss dementia friendly environments and ways to care for people with dementia.

“The sessions will start with the virtual experience to really get them focussed on what the training is all about,” says Petrovich. “They’ll experience what dementia friendly environments are and what they’re not. Then when we start our discussion, they can use that experience to make sense of what we’re talking about.

“While we’re focussing on the environment and the experience, from there it’s the connection to what I do as a carer that can make a difference. Because there’s a lot you can do as a carer. The environment may not be the most dementia friendly but you as a carer, by the language you use, can make it less fearful for them.”

Rollout and future uses

Bonner says the developers are still tweaking the program. “The basic layout is there. We’ll do some more user testing, get some carers in and get feedback and then incorporate that into the delivery.”

It’s hoped the experience will be up and running early next year. Already, Alzheimer’s Australia Vic has had numerous phone calls and enquiries from interested providers and organisations.

Beyond that, Petrovich says she sees the current experience as a first step. “I’d like to see it develop into something more complex. Ideally it could be a game online where a carer can go in and put their dementia skills to the test; check the choices they’re making are the right ones, with all sorts of adverse or positive outcomes based on those choices,” she says.

Such a program would be ideal. Indeed, the ideal would be for all general practitioners, nurses and healthcare staff working with older people and those with cognitive impairment to experience this program.

It provides a window into the world of someone living with dementia. It’s certainly worth taking a look.

Australian Ageing Agenda visited the dementia learning centre at Parkville in early November. The centre will be open for tours from early 2014. To enquire, call (03) 9815 7800.