Drab clock at 10 or four. Find coat zipper put.
The instructions didn’t make any sense. Then again, nothing made sense through the garbled sounds running nonstop through my headphones.
Straining to see without my glasses through a pair of vision-reducing goggles, I nervously wandered through the room accomplishing what I could, given my circumstances. I was riddled with anxiety just trying to get through 10 minutes — and that was the point.
It was a condensed lesson in empathy. Living through just a few minutes of frustrating nonsense that those living with dementia face every day.
Never in my life have I felt more utterly frustrated and helpless. My heart ached to think of those I knew or loved that had struggled with dementia — this experience was theirs every day.
Having a relevatory reaction is one of the aims of the tour, presented at the beginning of May by Second Wind Dreams at Azura Memory Care in Stoughton, which was created to change people’s perceptions of dementia.
“I wanted to try to find out if there was a way, if the person experiences what it was like when the brain dies ... it would create some insight and they’d treat (dementia patients) differently — which is what happened,” said P.K. Beville, Second Wind Dreams CEO and founder and Virtual Dementia Tour creator.
Taking the tour
At the beginning of the experience my glasses were removed and I was given a pair of vision reducing goggles, shoe inserts that simulate neuropathy and over-sized gloves to mimic arthritis. That’s all in addition to the headphones, which expel a constant stream of noise.
Then I was taken into one of Azura’s apartments and told to “drab clock at 10 or four” and “find coat zipper put” — I think. I’m not quite sure because, to me, the instructions didn’t make any sense.
I did manage to make out at least two of the tasks and accomplish them, but I found myself wandering around trying to find other things to do.
Two other participants were in the room with me and I wound up doing some of their tasks.
Once the experience was over, the program observer — who had been taking notes during our tour — labelled me “the busy body” since I spent the time trying to do anything and everything.
I needed to have a purpose. That was probably the most profound realization of the experience for me.
Despite the circumstances, I needed to feel useful.
Looking back, I can see that motivation in the actions of those I’ve known with dementia when, at the time, what they were doing didn’t make any sense to me. Just as, to the casual observer, my actions during the simulation wouldn’t have made any sense either.
Why was I picking up socks, putting them very close to my face and putting them down? Why was I picking up a clock just to set it down again?
Those questions, along with many others, are some of many that caretakers might have on any given day.
Beville began the VDT program in 2002 and piloted it with nursing homes and assisted living facilities.
For close to 10 years VDT was used largely in health care settings before she opened it up to the public with a community edition.
The experience itself is the same, but it’s more personal and those community or family members are provided with additional resources, Beville said.
“After, I guess, eight to 10 years of doing the Virtual Dementia Tour mainly for health care, I found that the general public was very curious about what was happening,” she said. “They are the ones most blasted by this.”
Paula Gibson, Azura’s Regional Director of Communications and Engagement, is one such person whose life was greatly changed by knowing someone with dementia.
She leads VDT experiences because the tour affected her and opened her eyes to the realities that her father likely faced.
For the last three years of her father’s life, she was just the “pretty red head who came to visit him,” Gibson said.
During that time she stopped calling him “Dad” and started calling him “Jerry,” she added.
For participant Mary Grady, doing the tour was as much a personal act as it was a community focused one.
She attended the VDT ahead of the program going to St. Ann’s Catholic Church in Stoughton. Doing it ahead of time would allow her to know what was in store when the tour came to her church, but it was also a cathartic experience.
“My mother died with (dementia) 25 years ago,” she said. “This gave me an idea of what she was going through.”
The other participant that day was Christopher Johnson, who works for Brookdale Memory Care in Sun Prairie and decided to take on the VDT to help understand his residents on a deeper level.
He’d never done anything like the experience before and thought it would benefit him as well as those residents under his care.
‘Down to eye level’
Johnson said that he learns more and more about how residents feel and see the world all the time, but this could really help people know how to better interact with individuals with dementia.
“I think really the biggest thing is how we interact from normal person to normal person and we try to react the same way to people with dementia,” he said. “(But) we need to slow everything down and be clear. One of the things I’ve been doing is getting down to eye level and getting closer to them and going slower and smiling more.”
What the VDT program and Second Wind Dreams does, largely, is focus on the individual at hand.
Dementia affects everyone differently which is why it’s considered an “individual disease” and the forefront of the conversation needs to be on that individual’s case, according to Beville.
When caregivers and loved ones of those with dementia are able to experience what it’s like to be the affected person, it helps them realize that what could be perceived as “nonsense” is that other person’s attempt to make sense of the chaos.
People with dementia might not require certain medication to calm down, which might make them really drowsy, they might just need someone to take the time to listen even if it’s frustrating, Gibson said.
“They want to live not just exist,” she said.
“The instructions didn’t make any sense. Then again, nothing made sense ...” Amanda Finn,
on a Virtual Dementia Tour