It’s often said that if you want to gain some perspective on how a person lives his or her life, you should take a walk in their “shoes.” And though I’ve probably heard this saying too many times to count, only recently do I appreciate its lesson in empathy, particularly when trying to fathom the plight of living with dementia.
I came close to that feeling this past week at LeadingAge’s Annual Conference & Expo in Nashville with the Virtual Dementia Tour (VDT), a program carried out by a not-for-profit organization called Second Wind Dreams. Essentially, the VDT simulates what it feels like to have dementia, recreating similar sensations experienced by those with cognitive impairments. The intent is to provide caregivers an inside window to better assist them in understanding the behaviors and needs of their patients, family members or loved ones.
I personally haven’t had much firsthand experience with dementia, so when I was asked if I wanted to take the Virtual Dementia Tour while wandering the expo floor, I agreed, if only to catch a glimpse.
The tour’s about to begin
A staffer sat me down in a chair, asked me to sign a form that resembled a waiver and prompted me to fill out a short questionnaire that asked if I currently felt capable of carrying out simple tasks, whether I felt relaxed, if I think people with dementia get the care they need, and if any of the following characteristics applied to me in the last 10 minutes: pacing, negative thoughts, talking to self, following others, searching for items and difficulty understanding directions.
Being in Nashville less than 24 hours and trying to navigate a conference venue big enough to be the Tennessee Titans’ second home—not to mention lugging around a messenger bag stuffed with my laptop, various chargers (phone, computer), a personal journal and a plethora of vendor swag—I circled every which one of those characteristics.
Once all the paperwork was complete, the aforementioned staffer then handed me a pair of clear plastic insoles to place inside my shoes “to create a feeling of discomfort” when walking, she said. After placing them inside my shoes, I immediately understood what she meant. Not painful by any means, but with each step I could feel little pegs poking my heels making it discomforting to walk.
A pair of crinkly saran gloves came next, and on top of those a pair of thick gardening gloves. Doubling up on the hand gear would simulate the affect of arthritis, I was told, which many seniors live with on top of having dementia.
Now it was time for the head gear—a pair of seemingly natural sunglasses, only instead of blocking out the sun, they blocked out much of their wearer’s peripheral vision to create blurred, tunnel-like eyesight. Vision severely impaired, the staffer placed the final garb on my head: a pair of noise-canceling headphones that added another element of disorientation to the senses. The pre-recorded track of static noise, murmurings of unintelligible conversations and the occasional hair-raising door slam or passing ambulance siren would supplement the utter confusion and disarray I’d feel soon enough.
Completely decked out like some sort of displaced construction worker, the staffer took my arm and led me back behind a sheer black curtain. The tour was about to begin.
Weird things are happening
“Put on the white sweater. Write a three-sentence letter to your family. Set the table for four…” was all I could hear her telling me through the jumbled noises pumping through the headphones. Three relatively easy tasks, no? That’s what I had initially thought until actually acting upon them and forgetting the rest of the activities I was directed to do before she disappeared behind another curtain.
Sifting through a trunk of clothing was nearly impossible while wearing the eyeglasses, but after ransacking the pile of clothing for what seemed like an unreasonable length of time, I opted for a black sweater. Next task: write the letter.
Though it sounded simple enough, no one had revealed where I might find a pen and some paper in the room. Despite its small size, the area where the tour was being carried out—not much bigger than a 20×20 room—seemed unsettlingly large, however, after some wandering and picking up various blurred objects in hopes of making sense of them through the glasses, I finally found a box full of notepads, pens and envelopes. Trying to discern a notepad from an envelope, I must have looked like some primitive species having seen these objects for the first time.
I heard the staffer’s voice in my head: “write a three-sentence note to your family…” Instead, I scribbled one to my girlfriend as best I could while wearing the dual sets of gloves, the bulkiness and tightening plastic around my fingers making holding a pen a challenge in itself before even trying to write. It read:
Weird things are happening. I may be home late tonight. Don’t wait up.
Once the letter had been written, I pawed around with the gloves trying to fold the paper so that it would fit inside an envelope. Done and done. On to the next one—task three: set the table for four.
Differentiating between an envelope and a notepad could have seemed like an elementary task compared to distinguishing a knife (plastic) from a fork or a spoon. But after some considerable inspection, which mostly consisted of holding each individual item as close to my face as possible, the fold-out table had been prepared so that a family of four might enjoy a meal, complete with knife, fork, spoon, plastic plate, cup and accompanying napkin.
Once this had been settled, I was sure that my time on the tour was nearing its end. The problem, however, was that I was almost certain there were more tasks to complete; I couldn’t remember after having concentrated entirely on the first few chores. I whirled around the room in search of the staffer who led me to this place, but she was nowhere to be found.
It was at this moment that I realized a woman had been standing in the corner of the room taking notes on a clipboard. Who knew how long she had been standing there, watching me pace the area searching for clothes, pens, muttering to myself as I tried to make sense out of simple everyday objects that had only recently begun to seem alien and requiring thorough investigation. Now and then she would glance up, observe, then continue jotting down whatever she was writing. Unsure how much time had actually passed since the tour began, I approached her to find out more.
“When does this end?” I asked. She smirked, looked up at me and said “you’re doing fine.”
Unfulfilled with her response, I searched the room again in hopes of jogging my memory into remembering additional tasks I was supposed to do. I had already put on a sweater, albeit a different color than I was directed, written a letter, set the table, yet I couldn’t remember the last set of tasks. Just then, the sound of a heavy door slamming shut jolted me upright. I swung around the room, to see where it might have come from only to remember that the room’s walls were entirely fashioned out of black curtains. Relieved, I decided to keep busy and began folding some of the clothes I had tossed around while in search of the sweater earlier in the tour. The staffer reappeared after I had folded several garments and led me through one of the curtains into another area.
The staffer sat me down into a chair across from an older woman who she handed some paperwork to before taking the headphones, sunglasses, gloves and black sweater off of me.
The woman welcomed me in a soft voice, introducing herself as a social worker with Senior Helpers, a Tennessee-based home care company that specializes in caring for seniors living with dementia. After discussing my experiences, she pulled out a sheet and indicated the observations her staff recorded.
Notably, the wandering, negative statements (when does this end?), subvocalization (talking to oneself), along with strange behavior—which her staff noted as me folding several towels and clothes for apparently no particular reason—had been pointed out to me as common observations a person would exhibit if they had dementia. She then demonstrated several techniques for caring with someone who has a cognitive impairment like Alzheimer’s, including positive reinforcement, giving them simpler tasks one-by-one rather than a list of chores, as well as cutting down on noise and distraction. Above all, one of the most important and easiest things someone can do whenproviding care for someone with dementia, she said, was being patient.
Patience can go a long way not only when caring for someone who has dementia, but for older adults as well, as displayed recently by staff at a Belmont Village assisted living and memory care community in Houston, Texas.
At Belmont Village Hunters Creek Senior Living Center, staff are simulating living life as seniors, equipping themselves with things like 40 lb. backpacks and bungee cords tied around their knees in efforts to experience mobility challenges that many of their residents live with on a daily basis.
The central mission of this exercise is to foster empathy and provide insight into how providers can improve the care they deliver to a population that has increasingly higher needs than ever before. In that sense, the Virtual Dementia Tour is no different, especially considering the financial impact conditions like Alzheimer’s already have, and can have, on the economy.
More than 5 million Americans currently live with Alzheimer’s in the U.S., running up a $214 billion tab for the nation, according to the Alzheimer’s Association 2014 Alzheimer’s Diseases Facts and Figures. With Americans living longer than ever before, these figures are projected to soar to as many as 16 million people living with the disease at a cost of $1.2 trillion by 2050.
And with no cure for this disease that seemingly strikes at random, enlightenment into the day-to-day struggles of living with dementia may be the best medicine, at least for now.
“When you walk in an elder’s shoes, the empathy and patience you will feel toward them is immediate,” is the statement written on the back of the pamphlet handed to me after completing the Virtual Dementia Tour.
I couldn’t agree more.
Written by Jason Oliva