Simulator offers insight into living with dementia

The room was dark and blurry, and a constant trickle of pain radiated from my feet. I was being told some simple tasks to complete, but I couldn’t hear much of the instructions because of the other cacophony of noises blasting in my ears — the white noise of a television with lost signal, the jabbering of voices of intelligible words, and the occasional sharp siren that made me jump. I told the instructor I couldn’t hear, but all I got was, “You’re fine, go ahead.” Couldn’t she understand me? I had already been told that no help would be given, but I’d somehow already forgotten that.

I knew I had to fold some towels, so I began doing that. It had never been so difficult or taken so long to do something so simple in my adult life. My fingers, with their dulled sensitivity and fine motor skills, struggled over and over again to find the corners of the towels. One finally folded looked more like a lump of material than the normal crisp square I had aimed to create. I was frustrated and emotional. I didn’t know why, but I almost wanted to cry. The siren blared again; my hands, startled, lost grip of the towel.

This is as close as a person with a normal brain can get to experiencing dementia.

I don’t have dementia, but the Virtual Dementia Tour, created by P.K. Beville, a specialist in geriatrics with more than 30 years of experience and sold by her nonprofit Second Wind Dreams, has put me and more than 1 million people in the shoes of someone with the disease. The 10 minutes are unnerving and eye-opening. Many, including healthcare professionals, have said they could have never imagined that this is what life was like for a person with dementia.

Consulate Health Care, a provider of senior healthcare services based in Maitland where I experienced the simulator, brought the tour to its employees so that they can provide more understanding, compassionate care.

“We can teach a lot of knowledge, but you really need to experience it yourself to have the empathy for the people that we care for,” said Mia Manni, a registered nurse and vice president of clinical outcomes management for Consulate Health Care. “Everything I thought kind of shifted … it’s powerful.”

More than 5 million Americans are living with dementia; every 67 seconds another person develops Alzheimer’s, and one in three seniors dies with Alzheimer’s or another form of dementia, according to statistics collected by the Alzheimer’s Association. Women are more greatly impacted; they represent two-thirds of Americans living with the disease and there are 2.5 times more women than men working to provide the intensive 24-hours-a-day care for a loved one with Alzheimer’s.

The symptoms of dementia are incredibly disrupting to daily life. There’s memory loss, loss of problem solving and reasoning skills, and normal tasks — such as folding laundry — become almost impossible. Those with dementia experience confusion with time or place, changes in mood and personality, and have trouble joining or following a conversation.

The tour was created using Beville’s 30 years of clinical observation of people with dementia and how their caregivers respond to their behavior, and studies of brain scans to see where the damage was on dementia patients to determine ways to mimic that damage and create those behaviors in people with normal brains.

At the tour, participants enter a dim room with strobe lights flashing and are told simple tasks to complete — folding laundry and setting a table. Headphones pump in loud noises to block out all other sound to represent the loss of ability to differentiate each noise’s importance. For example, a television left on across the room would be equally as noisy as a person standing in front of them trying to talk directly to the person with dementia. Goggles darken and limit vision straight ahead and peripherally, gloves limit feeling in the hands and dull motor skills. Plastic prickly shoe inserts give the pain someone with dementia might be living with but unable to tell anyone about. A seemingly unhelpful person in the room pretending to not understand your question shows the real struggles people with dementia have communicating every day. It’s all disorienting.

The experience is eye-opening for healthcare workers, who, while they understand the clinical symptoms of dementia, have trouble relating those to treatments as they’ve never felt or experienced those symptoms themselves. The tour does that for them. Manni said she learned that changing an environment is more important to treating a dementia patient than trying to change the person or their medication. A bright room with low noise and simple furniture and a comforting touch can do wonders, she said.

“The behaviors of dementia patients, if you’re looking at the whole, can be catastrophic sometimes and easily misinterpreted, they can be angry for absolutely no reason that you can figure out, so to have people go through this and understand, this is why they’re angry … it’s very hard to put yourself in their mind and you can’t communicate sometimes,” Manni said.

Manni said that while watching Consulate employees go through the simulator, she saw her dementia patients. People with normal brains were wandering around lost in the room they had created for the simulator, sitting alone and covering their heads, getting upset when no one would help them, not completing the simple tasks they were given because they couldn’t hear or couldn’t remember what to do seconds later.

“When you look at a person going through the Virtual Dementia Tour and you overlay observing a person who actually has the disease, the behaviors are almost exactly the same,” Beville said.

That’s especially useful for researchers because the simulator experiencers can give insight into the disease by explaining how they felt or why they acted certain ways after a tour, something people with dementia can’t do.

The Virtual Dementia Tour used by Consulate Health Care is by nonprofit organization Second Wind Dreams. Find out more and purchase a kit at secondwind.org. For more information about Consulate Health Care, visit consulatehealthcare.com

Beville’s goal with the Virtual Dementia Tour is to reach all communities, from caregivers to grocery store workers, and give them an elevated social consciousness and awareness for those with dementia so that they can “age in place.” She would like people with dementia to remain a part of their communities for as long as possible, treated with understanding and patience. People with dementia can’t communicate that need, so she’s doing it for them.

“It’s our intent to help people connect with those who can’t speak for themselves,” she said.

Candice Beaty, managing director of Second Wind Dreams, has learned that there’s no use yelling at her grandmother, who has dementia. Yet that’s something anyone might do absentmindedly when questions and commands go unanswered. She can’t surprise her grandmother with a tap on the back or speak too quickly. She’s learned to look at her in the eye, talk slowly and pay attention when her grandmother speaks or asks a question.

“It got me to understand that I can’t make her understand me,” she said, “I have to understand her.”