Sensitivity Training for Caregivers: 'Virtual Dementia Tour' Starts as a Living Nightmare

A caregiver seeks to understand more about what life is like for a person living with dementia

Caregiver, patient expert
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Please wipe this mess off of my face. Please!

Don't go so fast, I can't swallow! I'm not ready for a drink yet!

Is this bite going to be hot or cold?

Sweet or bitter?

Pureed meat or pudding?

Please wipe my face!

There was an opportunity in town that, as a caregiver, I couldn’t pass up. It was one of the early sensitivity training programs for caregivers at Bethany Homes, a care facility near my own home. This sensitivity training program is mandatory for their staff, but they allow other care homes to use it as well. My role as an elder care columnist gave me a pass to take part in the course. What I didn’t know was that they would make me their pet target.

What sensitivity training isn’t

Sensitivity training cannot simulate the actual experience of living with dementia and isn’t intended to do so. No training can replicate the anxiety, fear, possible delusions, and other wrenching experiences that people living with dementia face, nor can these programs fully help us understand their pain over all they’ve lost. The programs do not simulate dementia. What they can do, however, is ratchet up our sensitivity about what it’s like to be unable — even temporarily — to control our environment. To be at the mercy of people who don’t necessarily know us well enough to care about us.

When done properly, these programs will help us understand helplessness, confusion, frustration, degradation as well as playacting can. These programs address physical and mental health, so caregivers of people living with mental health issues could certainly benefit, too.

My nightmare begins

After some intake paperwork, including a test that asked about my perceptions of dementia care, I was asked to move to another chair and told I could no longer talk. The woman asked for my eyeglasses, then placed green, bug-eyed goggles on my face. The goggle lenses were foggy, with dark circles in the center to simulate macular degeneration. The area surrounding each dark spot was cloudy.

She covered my ears with ear phones emitting jabbering background noise, rather like a muted radio talk show. She poured un-popped corn into each of my shoes to simulate the pain of arthritic feet and bunions. Another woman pulled gloves with popcorn-filled finger tips over my hands, then taped together three fingers on each hand. I felt as though I was, bit-by bit, being entombed.

The first woman led me to dimly lit room and told me that I had five tasks to complete: find a necktie and hang it around my neck, pair up six sets of socks, set a table, draw pictures of my family and name them, and find a belt and put it on. I gingerly found my way into the darkened room, thinking that I could ace this. The first thing I focused on was a bed piled with what looked like sheets and lumpy linens. I started there, trying with my handicapped hands to dig through the pile of cloth.

I could see a necktie shape. Then another. And another. I was already becoming disoriented. I didn't know if I was supposed to just put on one, or all that I found. There was a woman in the shadows, one that I hadn’t noticed, observing my behavior and taking notes. I remembered that I wasn’t allowed to talk so I couldn’t ask her any questions. I put on three neckties. I kept digging, trying to feel and see socks. At first I'd just find one of each pair (just like the dryer, I thought). Finally, I dug up a couple of pair. By then, I'd forgotten how many I was supposed to match. Voices from the earphones were so annoying — they distracted me from concentrating on this simple task.

I remembered clearly, however, that I was supposed to draw pictures of my family and label them. There was a bedside table and a light-colored spot. Yes, paper. I fumbled around and found a pencil, then clumsily drew three stick figures on the paper and tried to write names. I couldn't feel the pencil well and it was difficult to hold with my numb, nearly immobile fingers. I couldn't see any of my drawing or writing but I made some squiggles on the paper and moved on.

No acing this test

I was getting nervous. I've always been an "A" student. I needed to ace this test. The table! Yes, I was supposed to set (or was it clear?) the table. The napkins and plates were red and fairly easy to see. The plastic utensils were white. There were some plastics cups. I piled up the paper plates, then put the napkins on the plates, then added "silverware." I could feel the woman looking at me and I wanted to ask where to put the stuff, but I couldn’t talk. I was so immersed that I really felt that I couldn’t. Finally, I just placed all dinnerware in the far corner of the table.

Then what? I wandered around. I looked at everything. I wracked my brain. It had seemed so simple when the woman at the door named my tasks, but I knew now that the voices had distracted me. There was something else but I couldn’t remember.

They’re messing with my mind!

The woman in the shadows spoke. "You're doing fine,” she said. "Just two more tasks to complete."

I don't remember if I was startled into speaking or if I was just thinking, but my response was, "Two? I've done four. I had five. She's saying six. Two more? Is she trying to trick me?"

I felt imprisoned by time. I just wanted this over. I no longer needed an "A."

I spotted a chest in a corner. On top was a pitcher and some drinking glasses. I fumbled around and carefully threaded my gloved and taped fingers through the pitcher handle. I knew that this wasn't my task, but I also knew I should do something — anything — to prove I wasn't failing.

I poured some water in a glass. Should I drink it? I was thirsty. What if it isn't water? What if it isn't even meant as part of this training? What if it's toxic? I put the glass down. When will this be over? When? Six minutes? They are lying. They are playing with my mind.

I stood still, eyes roaming the room, trying to concentrate. I struggled to look around those horrid black circles, through the cloudy lenses, into the darkness. What am I missing? This is an eternity.

Doing what I’m told

Finally, the woman in the shadows spoke: "Your time is up,” she said. The door to the brightly lit hallway opened. A different woman came through the doorway and grasped my arm. She led me into the hall. Someone from behind took off my confusion earphones and put on another pair. The voices in my head were gone. Now, all sound was muffled.

"We're going up some stairs," the woman told me. Grabbing my elbow, she guided me as I hesitantly felt my way up one flight of steps. I had to bump my toes into the riser of each step then shuffle up. She was going too fast. Should I tell her my feet hurt? She's going too fast! I'm afraid I'll fall. We got to a landing, turned, and I stumbled my way up another flight. We went through a door.

Follow the rest of my experience to see how it evolves — for better and worse.