Navigating the world with dementia is difficult to imagine, even for caregivers. The UT Health San Antonio School of Nursing offers a variety of activities to guide visitors through that world, including a Virtual Dementia Tour. This initiative is part of the Caring for the Caregiver program.
Carol White is the director of the program, and she said the tour is designed to trick your brain into thinking it has limitations similar to those often experienced by people with dementia.
“You lose your peripheral vision, which is something that happens over time with some people with dementia. You don’t hear very well. You don’t understand commands well. You may have difficulty manipulating objects as you lose some of your motor skills,” White said.
They trick your brain by outfitting you with objects that will limit your senses and add distractions. Those on the tour will be given a pair of glasses, a pair of bulky, mismatched garden gloves with a few of the fingers sewn together, a pair of shoe inserts with several sharp points that will dig into their feet, mimicking peripheral neuropathy, and a pair of headphones playing static.
"Hi ladies. My name is Brandy,” said the tour facilitator. “What you're here for is a simulation just to kind of give you some idea of what people with dementia-Alzheimer's are going through."
The tour facilitator guides participants through getting dressed, and leads them to a room in which they will be asked to complete several simple tasks that each participant might do at home every day, but now they’re being asked to do them wearing what they facilitator calls “garb.”
She hands the participants off to another facilitator who lists their tasks. They cannot take off their headphones when he’s telling them what to do, so participants must strain to hear him over the static in their ears, and they must memorize the tasks. The facilitator does not give them the list, so participants must pay attention and try to remember everything said.
The list might include:
- Find the pants and put the belt through the belt loops.
- Take three pills out of two prescription bottles and put them in the cup.
- Clear the table.
- Write down seven things that are brown that you find at the grocery store.
- Set the clock for 8:50
And then they enter the room, and are hit by a wall of new sounds, including sirens colliding with the ever-present headphone static
Participants try to remember their tasks, and they try to complete them in eight minutes.
Doris Francis participated in December’s Virtual Dementia Tour because she’s trying to better understand her mom, who has Alzheimer's. While Francis is not her mother’s primary caregiver, she loves her and wants their interactions to be positive for both of them, and she wants to help.
After the tour, Francis said, “I didn't know what to expect but it blew my mind, I had no idea that some things were that severe for feeling and touch and sight.... just no idea it was that severe."
“You think you know and that you’re doing things right, you understand dementia might slow you down, but you don’t really realize what they’re feeling or dealing with that is slowing them down,” Francis added.
Sharon Overmeyer did the tour with her sister, Sandra McMillan. They share caregiving duties for their mother, Mary.
"Oh my gosh, that was amazing,” Overmeyer said. “Very frustrating for me, though. I can understand why it's frustrating for her."
McMillian added, "You find yourself talking to talking to yourself trying to realize, 'He said to do this first, then this.’ And I find that I was doing it all different. So, I understand what she's feeling."
White said empathy is what this exercise is all about.
"What we hear commonly when people debrief after going through that, I'm going to have a better understanding of what my loved one is going through," White said.
Francis, Overmeyer, and McMillin signed up to take the tour, along with several workshops on caring for someone with dementia, at the UT Health San Antonio School of Nursing website. White encourages anyone who’s interested, whether they know someone with dementia or not, to take the tour.
Nearly 400,000 people in Texas are living with dementia, and most of their care is coming from unpaid caregivers, usually family members. The department of state health services says more than 1.4 million Texans were acting as unpaid caregivers in 2017.