My eight minutes as a dementia patient
THE WORST part was the spikes inside my shoes.
Or maybe the worst part was the dimness, my world reduced to shadows.
Or the prickly static and loud banging that crowded out the sounds I really needed to hear, such as the instructions of the woman who had placed me in that darkened room, where I was trying to match socks, though my fingers couldn’t feel.
Why was I there? What was I supposed to do? Whose socks were these?
I knew what was happening in the larger sense: I was at Brightview West End, a senior living facility in Rockville, Maryland, participating in a training session for caregivers of dementia patients.
The Virtual Dementia Tour, which has trained people at thousands of facilities across the United States, aims to increase empathy for dementia patients by showing them what it feels to walk in their shoes - their painful, destabilising shoes.
“Once the headphones are on, you won’t be able to ask any questions,” said Albina Misini, director of Brightview West End’s dementia care section, as she placed them on my head. Through goggles that rendered everything dark, foggy and yellowed, I could kind of see her mouth move; she was giving me instructions to do something. But thanks to the cacophony of voices, clanking and other sounds, it was confusing trying to communicate.
The door closed behind me. I edged toward the bed. Each step drove plastic shards into the bottoms of my feet, so I pitched forward, walking unsteadily, to
I didn’t know where I was going! I couldn’t see you. You left me so I didn’t know, and I saw someone on the bed. I was scared. — Hannah Asuakyi, a resident assistant at Brightview
lessen the pain.
I turned to the dresser, where a stack of plastic plates stood beside napkins, cups and some plastic cutlery. It seemed reasonable to lay a place setting. But my mind was spinning. Fork on the right? No, on the left, next to the knife. How long since I’ve set a table? The knife goes with the spoon. Oh, wait, the napkin . . .
But hold on - why was I even setting the table?
I later learned this impulse to arrange and straighten things is common as people with dementia try in vain to master their environments - as were many of the reactions that I and the other trainees had during the tour. Its developer, P.K. Beville, started thinking about how to better serve older patients in the 1980s while working as a psychological evaluator of nursing home patients.
Over two million people in 20 countries have taken the Virtual Dementia Tour since 2002, at care facilities, home health-care organisations, state agencies, colleges and universities, according to its website. About 3,000 have purchased the components so they can give their own tours.
“After eight minutes during the tour, we began to see some of the behavioural responses that we actually see in a memory care unit,” Beville said.
Trainees wear goggles that imitate the loss of peripheral vision associated with dementia; they also mimic the effects of cataracts, macular degeneration and yellowing that are common as one ages.
The tour is constantly being updated. Beville is working on adding a temperature component, because people with dementia have trouble interpreting whether their surroundings are hot or cold, and a video that imitates the frightening visions experienced by people with Lewy body dementia.
After my eight minutes in the training room, Misini removed my headphones, and relief washed over me. Afterwards, watching trainees go into the room two at a time, I was struck at how much their actions and body language - and no doubt mine as well - resembled that of dementia patients: the unsure shuffle, the dazed expression, the sudden barking out of a disembodied word.
Before the tour, Hannah Asuakyi, a resident assistant at Brightview, had been telling me about a patient who thought she saw someone in her room, which made her afraid to sleep there. Fifteen minutes later, Asuakyi herself was taking mincing steps down the hall, reaching out for the wall to steady herself. Without the gear, I noticed things I hadn’t seen the first time. A strobe light sent intermittent white flashes across the room. A sign on the wall listed some instructions, but they were missing words and printed in varying font sizes.
Asuakyi stayed glued to the wall until Misini led her out and removed her headphones. Then she started laughing. “I didn’t know where I was going! I couldn’t see you. You left me so I didn’t know, and I saw someone on the bed. I was scared.”