Family members surround you, talking about you — but you can’t make out what they’re saying. Caregivers look at you with questioning faces. The sun goes down, and your thoughts swirl out of control.
All these scenarios may occur regularly for people with Alzheimer’s disease or other forms of dementia. And now, thanks to a virtual-reality training program with roots in Chicago, caregivers and clinicians can experience them too. The goal, says creator Carrie Shaw, is a greater understanding and empathy — and a more effective and compassionate delivery of healthcare and support services.
“We see that people have better understanding after going through the Alzheimer’s experience that it’s a disease of the brain, and that when people are acting out it’s because of their disease and not because of their personality or intentional behavior,” Shaw says.
Details of the virtual reality learning program were reported here last month at the Alzheimer’s Association International Conference 2018. In a way, it was a homecoming. From 2014 to 2016, Shaw was a master’s student in medical illustration at the University of Illinois-Chicago who needed a research project; her mother was nearing the end of a 12-year journey with Alzheimer’s disease.
As she watched her mother’s progression, Shaw wondered: “Why can’t we visualize what people are experiencing? And if we could do that, could we be better healthcare providers?”
To answer these questions, Shaw collaborated with fellow UIC student Thomas Leahy to craft 360-degree depictions of what it’s like to have dementia, among other conditions common in an aging population. At first, they tinkered with first-person simulations on a desktop computer. But once they experimented with virtual reality, Shaw realized they’d found their medium.
The immersive experience offers a phenomenon called bodily resonance. This occurs when you move your hands and see that reflected in the hands on the screen. “Your brain actually can get tricked into internalizing that experience as a memory of something that’s happened to you,” Shaw says. “That’s where you get this really interesting opportunity to learn.”
Shaw had intended to earn her Ph.D. But instead, she started a company to offer these experiences as training to medical schools, geriatric care centers, and similar facilities. Embodied Labs launched in Chicago in 2016, then relocated to Los Angeles last year to be closer to production resources.
For the Alzheimer’s disease module, viewers put on a virtual reality headset and enter the world of Beatriz, a middle-aged Latina woman progressing through the early, middle, and advanced stages of the disease. Much of the research underlying the narrative was done with individuals in the Chicago Methodist Senior Services (CMSS) community, based in Andersonville.
The non-profit has also invested in Embodied Labs and uses the modules to train staff. “It isn’t a webinar and it isn’t a seminar or lecture. You put on this headset and you become the patient,” says Bill Lowe, president and CEO of CMSS. “That piece of it is super powerful.”
Another module, Alfred, depicts a 74-year-old African American man with mild cognitive impairment, macular degeneration, and hearing loss. When CMSS’s Mary Margaret Morris, memory support coordinator at Chicago Methodist Senior Services’ Wesley Place first tried it out, she asked to turn the volume up.
“They were just kinda like, uh-huh, and kept going — because that’s the whole point,” she says.
Indeed, a sense of the challenges involved in navigating the world with dementia or other disabilities is key to the experience, says cognitive neurologist Neelum Aggarwal, MD, of the Rush Alzheimer’s Disease Center, who advised Embodied Labs on the creation of the Beatriz module.
“It’s important that people realize, no, things aren’t going as planned,” she says. “That frustration level, frankly, is healthy and I think that is what’s going to drive the empathy.”
In addition to Beatriz’s experiences, the three segments of the Alzheimer’s disease module include first-person journeys through the brain. Viewers walk through a neuron forest and see the plaques, tangles, and other damage Alzheimer’s disease causes. This was in direct response to questions Aggarwal received from family members of people with dementia about the underlying causes.
“If I can have you experience it versus me explaining it to you, I will always have you experience it,” Aggarwal says. “Then when you see these vignettes and there’s a human being having trouble integrating or communicating, now you should be linking that to what’s happening in the brain.”
Early research into the virtual reality program’s effectiveness suggests the experiences do drive an increase in empathy and a resulting shift in behavior. People who participate report greater knowledge about the conditions depicted, treat their clients or patients differently, and even say they feel more confident, empowered, and satisfied with their jobs if they’re professional caregivers, Shaw says.
As the program rolls out among CMSS staff, Lowe says his experience aligns with those findings. “I believe I’m seeing superior effort in terms of patience, empathy, slowing down a little bit in their communication,” he says.
Aggarwal saw a similar impact in a pilot program for about 20 high school students at Northside College Preparatory School in Chicago. And beginning next month, an interdisciplinary group of about 60 med students, pharmacy students, and residents at Rush will also undergo the virtual reality experience. Surveys before and after will measure their knowledge of Alzheimer’s disease, level of empathy, and sex and age biases they may have toward older adults with dementia.
If they’re anything like Morris, the experience will change them. Though she’d worked with people with dementia for six years, becoming Alfred and Beatriz gave her a new perspective on approaching and finding common ground with the people in her community. “These trainings remind us, oh yes, I’m a person, we’re all people — how are we connecting and engaging around what we care about as people?” she says.