4 minute read
What dementia feels like
Understanding and supporting those with dementia
by Shawn Ryan
The tasks were simple ones. Put on your pants. Buckle your belt. Easy-peasy.
And it would have been for Hannah Smith. But the goggles on her eyes made everything fuzzy and gave her double vision.
Bulky gloves made it near impossible to feel anything.
Shoes had spiky lumps in them, making it hard to stand or walk.
Headphones blared noise and people's voices were lost in the din."
I put on the pants backwards. I didn't see where the belt buckle was. It was so hard, and it's embarrassing, but it's so humbling to see that it's hard to even do simple daily tasks that you've done your whole life," says Smith, a fifth-level student in the School of Nursing at the University of Tennessee at Chattanooga.
Donning the pants was just one task she had to attempt during the Virtual Dementia Tour, something all first-level students in the School of Nursing must undertake. The goal is to give students an idea of the challenges people with dementia face every day. In the exercise, which lasts eight minutes, students are given several tasks to complete—or try to—while wearing all the devices on eyes, hands, feet and ears at the same time. The purpose is to imitate what it's like to have dementia.
"It really gives you a greater understanding of how difficult it is to live with dementia and be so frustrated because this is something you've been able to do always. This is your daily routine, your daily life. That's kind of sacred," Smith says.
Some students have come out of the exercise crying, says Kristi Wick, assistant professor and Vicky B. Gregg chair of gerontology in the UTC School of Nursing. It can be an overwhelming experience to live as someone with dementia, even for a short period of time, she explains.
"Many people report profound sadness and/or grief because they know or have cared for a person living with dementia and this experience provides a new understanding of the challenges dementia presents," she says.
"This is especially true for primary caregivers as they reflect on their experiences. There may be feelings of guilt or wishing they had known earlier how to help their loved ones.
"In addition, some people report thinking about their own mortality as well as their own health and wellness along with their personal plans or desires related to aging successfully."
When the exercise is completed, students discuss the experience with someone trained to deal with such issues "to allow time and a safe space to process these feelings and to recognize ways they can provide support in future clinical practice or as a caregiver," Wick says.
Valerie Rutledge, dean of the College of Health, Education and Professional Studies, took the Virtual Dementia Tour two years ago. Her father had suffered from dementia and is one of the reasons she took the tour.
"That was an important part of my decision in addition to wanting to see what the experience might be with regard to our faculty/staff and students," she says. "I think the end result for me was clarification of some of the confusion and mixed signals that can occur when the sensations and input become overwhelming.
"Sympathy and empathy are critical to being aware of how much a person's behavior can be changed. In many ways, it is not only a physical/virtual experience, but it is also a lesson that allowed me to 'walk in someone else's shoes' and grasp the various types of reactions that result from dementia both for the person affected and for those who are friends/ family/caregivers."
Prior to his Virtual Dementia Tour, Peter Nguyen, a third-level nursing student, had worked with dementia patients in a hospital during his first semester. Some were difficult; some refusing to cooperate; some being combative.
"It was really frustrating," he says. "Why won't they let me put on a blood pressure cuff? Why can't I take their vitals? It was something that I didn't really understand."
The dementia tour completely erased those questions, he says.
"It was enlightening. It makes sense why they're so agitated and frustrated, and why they just can't really cooperate. It really opened my eyes and made me feel for them."
A Brock Scholar in the Honors College, Smith currently is having a personal experience with dementia. A year after being diagnosed, her 82-year-old grandmother is quickly descending into it, she says.
"My grandmother loves to cook for me, and that's something that's really difficult for her to do now," Smith says.
The Virtual Dementia Tour not only made her be "a better granddaughter," Smith says, it has helped in other ways.
"It has helped me be a better nurse, a better human being. I think it helps you have more empathy for people in general, not just people with dementia, but people who suffer with illnesses or things that you might not necessarily see when you look at them. I think it helps with patience and kindness and just being a better person."
—Hannah Smith
