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Using VR to build empathy for people with dementia, their caregivers

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Developing technology from the worlds of virtual reality and gaming isn’t just being created for rehabilitation therapy. It’s also helping people understand the challenges of real-life health care scenarios. 

Maria Palazzi, director of Ohio State’s Advanced Computing Center for the Arts and Design (ACCAD), is involved in a number of collaborations to create virtual reality, or VR, experiences that give health care professionals a first-person experience of what patients or clients deal with each day.

One of those ongoing projects uses virtual reality simulation to help physicians build empathy for people living with dementia and their family caregivers, a collaboration with Holly Dabelko-Schoeny in the College of Social Work and the Wexner Medical Center.

Palazzi recently spoke to us about the project and how VR and gaming technologies are evolving for health care.

Do people realize what virtual reality and gaming can do in this area?

There’s a real stereotype regarding games and VR. There’s probably not a lot of people who realize the tie-in between gaming and therapy and the ways in which VR can work in this area.

So how can they?

We do draw pretty clear distinctions between gaming and virtual reality, even though they use similar technology.

With gaming, we usually think about this idea of using play as a way of learning, or knowledge building, that we know is effective. Children build their knowledge base through play, for instance. It depends on decision making and strategies, evaluating possibilities.

Virtual reality allows you to actually embody ideas you want to experience. Theater and dance have done this for a long time. As you embody something, act it out, you become part of it, and you remember it in a much different way than you remember reading facts in a book.

We’re calling on what we know from performance arts and design to better use all these technologies of virtual reality. By itself, the technology doesn’t have the same power it has without using these arts-based approaches to learning and experimenting.

And the dementia empathy training is through virtual reality; how did that project start?

It started about four years ago as a project through an ACCAD class taught by Vita Berezina-Blackburn and Alex Oliszewski called "Performance and Narrative in Virtual Reality." Part of the class was for students to create experiences with virtual reality technology.

One of the students was Dreama Cleaver, ’10, ’18 MFA. She was the sole caretaker for her mother, who has dementia. She was totally frustrated with the lack of empathy she was getting from physicians when she took her mother to see a doctor. She wanted to show doctors what it was like for her as a caregiver and what it was like for the person with dementia.

That’s incredible. How did it go from there?

The group of students started in a traditional theatrical way: they wrote a script with a scenario. They then looked at how virtual reality could lend to that sort of experience. They discovered it could make it seem (to someone wearing a VR headset) that time had passed quicker. Or you could disorient someone or have them think they had completed a task but it wasn’t done. 

We also built props in the scenario that wouldn’t work right, or it was hard to figure out. It’s kind of like special effects in a movie but applied in virtual reality.

The students  were really thinking about what Dreama was experiencing with her mother and then how to translate those kinds of things into what virtual reality could do. There’s no claim you’re going to know what dementia is like, but it’s just a way of allowing someone to experience some of that disorientation and what the caregiver is faced with.

As you embody something, act it out, you become part of it, and you remember it in a much different way than you remember reading facts in a book.
Maria Palazzi, Director of Ohio State's Advanced Computing Center for the Arts and Design
What’s the scenario like?

It’s about a 10-minute experience. We had actors come from theater to play the role of caregiver. The person who has the headset on is playing the role of the person with dementia.

They’re actually walking around in this space, trying to figure out things like why the clock is at a different time than they thought or why tasks like washing dishes aren’t getting done even though they thought they had done it. And the caregiver is getting frustrated.

It’s really amazing to see this tension that builds between these two people as this whole scenario is playing out. A number of us could see the potential to develop it further and see if we could engage direct care workers and physicians to be able to have this experience.

Where did it go from there?

We realized we needed the partnership with social work because at the end of the performances people were emotionally affected. Sometimes it was because the experience brought back memories. It’s just a very sad, devastating story people with dementia and their caregivers go through. Dr. Dabelko-Schoeny created a workshop to work through the aftereffects of the experiences.

Around that time, The Ohio State University Wexner Medical Center let us know the Ohio Department of Medicaid was putting out a call for simulations around dementia to see if virtual reality could make a difference in how physicians work with patients and families. So we started working with the Wexner Medical Center (Dr. Sheryl Pfeil) and got the grant to further develop the scenario, take it on the road and get time with physicians. It was incredible. The next step was to bring it into long-term care facilities but unfortunately the (COVID-19) pandemic happened, and we had to pause that in March 2020.

But it’s been an incredible journey, and we plan to further develop it. We think it can become a training module for direct caregivers or physicians.