Anger, frustration: What it was like to take a 5-minute dementia simulation

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After retiring from full-time teaching, I started volunteering at our local hospice, where monthly training enhanced our experience working with larger populations. One of these workouts was called the Virtual Dementia Tour, a replica of the dementia experience for those of us with our minds still intact. Having had a front row seat for my mother’s dementia years before, I wondered how they could simulate this. I made fun of myself. But I said yes, I would attend.

We were told we arrived with a staggered schedule, a trio every 20 minutes. We have completed a short questionnaire: Do you feel able to perform simple tasks? Yes. In the last 10 minutes, have you found yourself pounding? Have negative thoughts? Talking to yourself? Are you looking for articles? No, no, no and no.

“Tip up,” said the woman leading the experiment, handing me plastic insoles to put on my shoes.

“Oh!” I said. “What part of dementia is this?”

“Neuropathy: Nervous Pain,” he explained.

He then gave me special dark glasses, headphones, a large, awkward glove for my dominant hand, and a less awkward glove for the non-dominant hand. He put a small device in my pocket that contained the soundtrack of my headphones, and then walked me a short distance to the room.

A cacophony of background noise

If I hadn’t been guided by my arm, I would have run into the walls. He could only see through the top of his dark glasses. Every step hurt. I wanted to sit right there and pull out the thorny insoles. So fast, I was willing to give up.

Inside the room, things got worse. It was dimly lit, cluttered, claustrophobic. Another volunteer / test subject wondered about limited space. In a corner, a man sitting in a chair taking notes. My guide fired up a list of instructions, of which I heard very few. He hadn’t been paying much attention and had no warning that he was about to say something important.

The headphones gave me a constant cacophony of background noise: radio announcer, static, other people’s conversations, a phone ringing loud, a distant siren.

When the other volunteer was driven outside, a phone rang again on my headset. This part of the test? Am I supposed to find a phone and answer it? I stood still, feeling conspicuous. The man was watching. The soles of my feet screamed.

I remembered an instruction: “Find a jacket and put it on.” I pulled a jacket out of the closet and forced my awkwardly large, gloved hands up my sleeves. In my headphones, a door closed and I jumped.

There had been an instruction to set the table for four, but the only table was a roll-up hospital tray, too small. There was a plate, cutlery, napkin and cup, and I put them in the right positions, but that was putting a table for one.

Tasks seemed impossible

Were any of the tasks intentionally impossible? Does every task feel impossible for people with dementia? Are all instructions delivered too quickly and are obscured by background noise? My mom, whenever we were together, had repeatedly asked me to slow down.

I voiced my doubt: “Prepare the table four? ”

The man in the corner did not answer. The needles stuck to my soles.

Come in. There was something about changing batteries. I saw two D-size batteries scattered among other gadgets on the nightstand. But without a flashlight.

“The batteries,” I said, “but there’s no place to put them?” He wanted us to laugh at the absurdity of it all, but obviously he wasn’t part of my team.

Anticipating the next volunteer, I asked, “Do I have to take off this coat now so that it is in the next person’s closet?” Silence. That was a reasonable question! When he didn’t respond, even knowing he had been told not to, I felt bewildered and invisible.

When the door opened and another volunteer was driven inside, I took off my coat while the guide embroidered instructions.

“I couldn’t hear you,” the new recruit shouted. “You can repeat?” But the woman ignored me, grabbed my arm and took me to the lobby, where she picked up her glasses, headphones, gloves, and tortuous insoles.

“Good release,” I said.

“It was only five minutes,” he said. “A short version because it is a great group. You’re usually there for 12 minutes. “

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Answers to the experience

In the “After” room, the participants expressed their indignation:

  • “After leaving and closing the door, I felt an immediate paranoia.”

  • “I was so frustrated! She wouldn’t repeat the instructions!”

  • “I was determined to achieve this and I felt defeated. I realized we had been prepared to fail.”

  • “I felt angry!”

Paranoid, frustrated, defeated, angry: practically my mother during her eight years of dementia.

Then they returned our questionnaires, with the notes that the silent boy had taken:

  • Whispering to herself

  • Speaking very loudly in the middle of the room

  • It looks very uncomfortable

Empathy for my mother’s suffering

I came out that day more amazed at the effectiveness of the workout. Each of the “reverse accommodations” alters or hinders one of the five senses.

The glasses simulate a variety of age-related vision disorders, including macular degeneration. Headphones create a background noise typical of an assisted living facility, but also a random noise generated by a dying brain, which contributes to the inability to distinguish between the sounds we need to pay attention to (such as the whistle of a teapot) and the sounds we need. ignore (another resident’s phone rings). Uncomfortable gloves affect dexterity and coordination.

Related: Dementia and Alzheimer’s disease: how to detect and prevent them

Not all people with dementia have all the symptoms, but training gives you as much as possible. Totally fair. After all, we still had our brains, the knowledge that this was a test, the ability to analyze the experience, and most importantly, after five miserable minutes, the freedom to leave the room.

I wish my mother had left this room.

I had never had trouble imagining the horror of your brain betraying you. I thought my mother had every reason to be irritable. But it wasn’t until me sense dementia, lived for five minutes confusion, helplessness, frustration, invisibility and pain, which could really empathize.

Unfortunately, it was too late for me and my mother. I toured 10 years after his death.

More than three million people from 20 countries have experienced the tour, but had never heard of it.

Read below: ‘Who will take care of you when you grow up?’ Childhood Retirement Planning answers the questions we should all be asking ourselves

For anyone caring for a person with a cognitive decline (parents, spouse or assisted living residents), this Virtual Dementia Tour is a game changer. You will doubt that such a condition can be simulated. You’ll make fun of me, just like me. But I guarantee you won’t laugh after walking in his shoes

Melanie Bishop has published fiction and nonfiction in the New York Times, Huffington Post, New York Journal of Books, Glimmer Train, Sailing, and more. She is a professor emeritus at Prescott College, Arizona, where she taught for 22 years. She is currently an instructor at Stanford Continuing Studies. Her youth novel, “My So-Called Ruined Life” (Torrey House Press, 2014), was one of five finalists for the John Gardner Fiction Prize. Bishop provides instruction, editing, and training through Lexi Services. More information with her website.

This article is reprinted with permission from© 2022 Twin Cities Public Television, Inc. All rights reserved.

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