Good morning, ProviderNation. More than two decades ago, PK Beville decided to try changing minds by assaulting them. The result, her patented “Virtual Dementia Tour,” has been getting rave, if rattled, reviews.
With the use of painful foot pads, heavy gloves, noise-cancelling headphones (with disruptive audio piped in), and near-blinding goggles, Beville’s tours offer eight minutes of sheer hell and—many believe—a rare and terrifying glimpse of what it’s like to live in dementia’s inferno.
“I was overjoyed when they informed me that my tour was complete,” my dear friend, the Great Dayne Duvall, tells me. “I lost it. I was sobbing. My goggles got all fogged up and I started talking loudly to myself, trying to calm myself down. For the next several minutes, it was all I could do to not run out of the enclosed area to get some kind of relief from the madness. The more I tried to control my emotions, the more they got away from me.”
From ‘Fizzle’ To Flame
Duvall may well be a daisy, but he’s no shrinking violet. He cared for his father through the last, awful years of Alzheimer’s disease and has built a career as an expert on dementia training.
More than 1.5 million “tours” have been taken, in 17 countries, since Beville was granted her patents in 2013. It has been a star attraction at AHCA/NCAL’s annual conventions for the past three years, and I’ve yet to hear or read a review that didn’t mirror Duvall’s.
“The key to person-centered care is to step outside ourselves and examine the experience we provide through the lens of each individual resident. That may be hard to do when our residents are living with dementia—their experience is hard to comprehend fully,” says Lindsay Schwartz, senior director of workforce and quality improvement at NCAL. “But the Virtual Dementia Tour gives us an innovative glimpse, and through it, we can revolutionize what it means to provide genuine, empathic care.”
So how did a soft-spoken psychologist, with a slight Southern drawl, manage to shock the consciousness of a profession?
“I’ve been serving geriatrics since 1983,” Beville tells me. “I have to say I was frequently challenged in how to help them develop a more person-centered approach. After a lot of beating my head against the wall and not seeing a lot of changes, I started to get burned out. Long term care is a fabulous field, and it was what I was chosen to do, but I just wasn’t having an impact.”
In the midst of her “fizzle,” Beville went back to school for postgraduate work, which, in turn, required her to gin up a thesis.
‘Fly On The Wall’
“My frustration boiled over then,” she recalls. “I decided I wanted to determine what type of training would be necessary to change staff’s behavior toward residents with dementia.”
She spent more than two years in and out of care centers—this time, not as a worker, but as an observer.
“Quite frankly, after all these years of serving this fabulous group, I don’t think I’d ever taken a step back to be a fly on the wall,” she says.
It was a revelation. She now thinks every provider ought to spend time in observation—even if they have to go to other centers.
“Just watch,” she says.
Her studies also led her to study “how the brain dies—and there’s no kind way to say that.”
Grim as that was, though, it led to a further revelation, when, studying brain scans from patients at different stages of dementia, Beville began to see correlations between gray matter disintegration and resident behavior.
“The connection between what was happening in the brain and the corresponding behaviors followed a very standard approach,” she says. “In fact, it’s normal. It creates a riddle for us, but it’s not a riddle for the person with dementia.”
If she had any chance to create the empathy that staff needed to care for people with dementia, Beville realized, she had to resort to some radical measures—and a little sleight of hand.
“I had to think about ways to trick the brain into thinking it has that kind of impairment,” she says. “I had to figure out how I could mimic those losses, but also how I could make them integrated in an environment that would simulate where a person living with dementia would most likely be.”
‘They Turn Into A Person With Dementia’
The goggles and the headphones are only the beginning. Subjects are then given instructions and moved into a simulated living environment. They’re given five seemingly mundane tasks while the headphones play a carefully engineered soundtrack of disruptive, disorienting sound effects.
The effects have been nothing short of astounding, Beville says.
“I’ll be darned they turn into a person with dementia,” she says. (Told you she was a Southerner.) “They wander the same, they pilfer through things the same, they ask for help even when they’ve been instructed not to.”
‘My Heart Was Beating Fast’
The experience is horrifying, Duvall says.
“I jumped and screamed, and then I realized that someone was sitting in the corner monitoring me and taking notes,” he says. “My heart was beating fast, my breathing had increased, and then it hit me—this is what my father must have gone through for several of the last years of his life.”
And that’s entirely the point, Beville says.
“The only way you can get people’s attention is to jerk ’em up good,” she tells me. “If you’re going to treat someone with dementia, then you owe it to him or her to walk in their shoes, even if it’s just for eight minutes.”