I Had Dementia for Five Minutes: Here's What I Learned
Taking a Virtual Dementia Tour made me realize just how painful and frustrating my mother's experience with dementia had been
This piece received a Gold Award from the 2023 National Mature Media Awards.
After retiring from full-time teaching, I began volunteering at our local hospice, where monthly training furthered our expertise working with older populations. One such training was called the Virtual Dementia Tour, a replication of the dementia experience for those of us with minds still intact. Having had, years earlier, a front-row seat to my mom's dementia, I questioned how they could simulate this. I scoffed. But I RSVP'd, yes, I would attend.
We were told to arrive on a staggered schedule, a trio of us every twenty minutes. We completed a short questionnaire: Do you feel capable of carrying out simple tasks? Yes. In the last ten minutes, have you found yourself pacing? Having negative thoughts? Talking to yourself? Searching for items? No, no, no, and no.
"Pointy side up," said the woman leading the experience, handing me plastic insoles to put in my shoes.
"Ow!" I said. "Which part of dementia is this?"
"Neuropathy — nerve pain," she explained.
Then she gave me special dark glasses, headphones, one big and awkward glove for my dominant hand, and a less awkward glove for the non-dominant hand. She put into my pocket a small device containing the soundtrack for my headphones, and then she walked me a short distance to the room.
A Cacophony of Background Noise
Had she not been guiding me by the arm, I would have bumped into walls. I could only see through the top of the dark glasses. Every single step hurt. I wanted to sit down right there and take out the thorny insoles. So quickly, I was ready to surrender.
I wanted to sit down right there and take out the thorny insoles. So quickly, I was ready to surrender.
Inside the room, things got worse. It was under-lit, cluttered, claustrophobic. Another volunteer/test subject was bumbling about the limited space. In one corner, a man sat in a chair, taking notes. My guide fired off a list of instructions, very little of which I heard. I had not been paying close attention and had no warning that she was about to say something important.
The headset was feeding me a constant cacophony of background noise — radio announcer, static, other people's conversations, a loudly ringing phone, a distant siren.
As the other volunteer was led out, a phone rang again in my headset. Is this part of the test? Am I supposed to find a phone and answer it? I stood still, feeling conspicuous. The man watched. The soles of my feet screamed.
One instruction I remembered: "Find a jacket and put it on." I pulled a down jacket out of the closet and forced my awkwardly-large, gloved hands into the sleeves. In my headset, a door slammed, and I jumped.
There had been an instruction to set the table for four, but the only table was a rolling hospital tray, too small. On it were a plate, silverware, napkin and cup — and I put them in the correct positions, but this was setting a table for one.
Tasks Felt Impossible
Were some of the tasks intentionally impossible? Does every task feel impossible to those with dementia? Are all instructions delivered too rapidly, and obscured by background noise? My mother, whenever we were together, had repeatedly asked me to slow down.
I vocalized my doubt: "Set the table for four?"
The man in the corner was unresponsive. Needles poked into the bottoms of my feet.
Onward. There had been something about changing batteries. I saw two D-sized batteries strewn among other artifacts on the bedside table. But no flashlight.
But it wasn't till I felt dementia, experienced for five minutes confusion, helplessness, frustration, invisibility, and pain, that I could truly empathize.
"Batteries," I said, "but nowhere to put them?" I wanted us to laugh together at the absurdity of it all, but he was clearly not on my team.
Anticipating the next volunteer to come through, I asked, "Should I take this coat off now so it's in the closet for the next person?" Silence. This was a reasonable question! When he didn't answer, even knowing that he'd been instructed not to, I felt discounted and invisible.
When the door opened and another volunteer was led in, I took off the coat, as the guide barked instructions.
"I couldn't hear you," the new recruit shouted. "Can you repeat?" But the woman ignored her, took my arm, and led me into the hall, where she collected the glasses, headset, gloves, and torturous insoles.
"Good riddance," I said.
"That was only five minutes," she said. "A short version because it's a big group. Typically, you're in there for twelve minutes."
Responses to the Experience
In the "After" room, the participants expressed their outrage:
- "After she left and shut the door, I felt immediate paranoia."
- "I was just so frustrated! She wouldn’t repeat the instructions!"
- "I was determined to ace this and felt defeated. I realized we’d been set up to fail."
- "I felt angry!"
Paranoid, frustrated, defeated, angry: pretty much my mom during her eight-year "tour".
Then they gave us our questionnaires back, with the notes the silent guy had taken:
- Mumbling to herself
- Talking very loudly in the middle of the room
- Appears very uncomfortable
Empathy for My Mother's Suffering
I left that day most surprised by how effective the training was. Each of the "reverse accommodations" tamper with or hamper one of the five senses.
The glasses simulate varieties of age-related vision disturbance, including macular degeneration. The headset creates typical background noise of an assisted living facility, but also random noise generated by a dying brain, which contributes to an inability to distinguish between sounds we are meant to pay attention to (such as a tea kettle whistling) and sounds we need not heed (another resident's phone ringing). The awkward gloves affect dexterity and coordination.
Not every person with dementia has every symptom, but the training gives you as many 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 mom could've left that room.
I'd never had trouble imagining the horror of having your brain betray you. I believed my mother had every reason to be cranky. But it wasn't till I felt dementia, experienced for five minutes confusion, helplessness, frustration, invisibility and pain, that I could truly empathize.
Sadly, it was too late for me and my mom. I did the tour ten years after she died.
Over three million people in twenty countries have experienced the tour, yet I had never heard of it.
For anyone caring for someone in cognitive decline — parent, spouse, or residents of assisted living — this Virtual Dementia Tour is a game changer. You will doubt that such a condition can be simulated. You'll scoff, like I did, too. But I guarantee you won't be laughing after you take that walk in their shoes.