Seventeen cents, four place settings and 150,000 Kentuckians

It took seventeen cents for me to begin to understand the often sad and frustrating reality of the approximately 150,000 Kentuckians living with dementia.

When I arrived at Christian Community Care in Corbin on Feb. 24, I had a vague understanding of what I would be doing. I had been told I would experience a simulated version of what a dementia patient experiences daily by participating in a Virtual Dementia Tour^®.

The objectives of the tour were simple. Wearing gloves, goggles, shoe inserts and headphones, I needed to complete five simple tasks once I was inside the simulator room. 

Once I had donned my ‘garb’, a facilitator guided me into the room and told me five tasks I was supposed to complete. 

The headphones I wore continually pumped ambient noise into my ears and fogged my brain. As the facilitator listed off my five tasks, I only managed to remember two. 

The first was to count out seventeen cents and place it in a change purse. 

‘Everything is so dark,’ I thought as I took a lap around the room to see if I could get my bearings. As I walked around, I spotted the lady who was in the room to make sure that I was safe but who was also present to make notes about how I reacted to different stimuli and challenges. 

I found a table with what appeared to have some shiny objects. 

I thought to myself, ‘I can’t really see what these circular objects are, but they have to be coins.’ 

I tried to think through what I would need to make 17 cents – a dime, a nickle and two pennies.

‘You know that nickels and dimes are silver,’ I reasoned with myself. ‘Which of these objects looks shiny?’ 

The light was so dim that even shiny versus not shiny was not an easy distinction to make. 

I began to panic as I realized that the task was becoming increasingly more difficult and frustrating the longer I stood in front of the table.

‘Calm down, and don’t panic,’ I coached myself. ‘You have eight minutes to figure this out.’ 

Inhale, exhale. Inhale, exhale. 

As I continued to control my breathing, I tried again to complete the task.

‘One shiny circle, two shiny circles. Okay, I have the shiny ones,’ I thought, while doing a short-lived happy dance in my head. As I tried to discern the dime from the nickle, I questioned, ‘Which looks bigger?’ 

‘I wish I had more light,’ I internally groaned. 

‘Um, okay, I think this is a dime,’ I said to myself. 

As my pride swelled at possibly completing another portion of the task, it was immediately squashed as I realized, ‘It looks smaller than the other coin, but wait, is that a nickel or a quarter?’ 

‘Just guess,’ I scolded myself. ‘Time is ticking and you know that the lady in the corner is observing your every move. Just pick a coin. She won’t see what you pick.’ 

I decided to use two different sized shiny coins and two dull coins hoping that by some miracle they would add up to 17 cents.

‘Where is the coin purse,’ I thought. ‘These gloves are really doing a number on my grip. Wait, are these two fingers sewed together? Why can’t I figure out how to open this purse?’

As my frustration increased, so did the number of internal scoldings I gave myself. 

‘Ugh!!! CALM DOWN!!’ 

My gloved hands fidgeted with the coin purse only to realize that I had spent time zipping up the purse that I had adamantly been trying to unzip. 

‘Okay, great,’ I thought. ‘I zipped the already unzipped purse, and I still don’t have the coins inside.’

I tried to calm my mind and think through the problem. 

Step one: figure out if the purse is zipped or unzipped. 

‘It is unzipped, so moving on.’ 

Step two: pick up the coins. 

‘Well, with these gloves, I can’t grip anything. Maybe I can nudge them into one glove using the back of the other since I can’t figure out how to move just one finger.’ 

Clink. 

I heard the ominous sound of a coin hitting the floor.

‘Dang it! It fell. Which one was that? Was it shiny,’ I began questioning. 

‘It doesn’t matter,’ I finally thought. ‘You need 17 cents, so just get a different shiny object and stick it in the bag.’ 

Step three: zip the bag. 

‘I can’t find the zipper. Why does this bag have a cloth zipper? A metal zipper would be so much easier to feel through these gloves.’ 

Clink, clink, clink. 

Frustrated at not being able to complete the task, I decided to just move on since I was working with a time limit.

The second task was to set a table with four place settings. 

‘Where was the table in the room,’ I pondered. I knew that there were several areas that had tables, but I couldn’t remember quite where the table with the plates was.

Once I located the table, I started trying to complete the task methodically.

‘Okay, what do you feel on the table,’ I tried to reason since my eyesight was all but useless. ‘Four plates and four cups. Great! I must just need to set these out.’ 

I almost immediately encountered a problem; the plates were thin and were stuck together. 

‘Is this a trick’ I asked myself. ‘Are there really only three plates?’ 

‘Just keep trying. You have got this. Calm down. Breathe,’ I coached. 

‘I feel like I am in a Dr. Seuss book – one plate, two plate, red cup, blue cup,’ I sang in my head to distract myself. 

Finally, I finished setting out the cups and plates. 

‘Well, darn,’ I exclaimed. ‘What were the other three tasks that I was supposed to complete?’

I remembered the facilitator saying something about five tasks, but with the headphones and the noise, I couldn’t hear exactly what he said my tasks were. 

‘Well, I think I see a laundry basket,’ I reasoned with myself. ‘Maybe one of the tasks was to fold the laundry.’ 

I internally groaned, ‘This has fixed it boys, I can’t grab a hold of anything I need to, but when I want to grab one sock, I apparently pull out every object in the basket.’  

I paused to regroup. 

Inhale, exhale. Inhale, exhale. 

As I began gently pulling out one item at time, I tried to determine what I was trying to fold. 

‘I think these are towels. I will fold th … aghhh.’ A siren had come through the headphones. ‘What was that noise? Is that a police siren? Why is it so loud?’

Visibly startled, I immediately looked up only to notice what appeared to be a strobe light in the corner. 

‘Wait, why is that light flashing in the corner? Has that been doing that the whole time? What is happening,’ I thought. 

My brain knew that I was in a simulation, but the rest of my body decided everything was much too real. I was beginning to experience sensory overload. 

‘Jennifer, calm down. It is just some noise and light,’ I thought, trying to calm myself. 

‘Drown them out and focus on folding the towels.’ 

My anxiety was exacerbated by the external stimuli, so as I folded the towels by using both hands to move one corner at a time, I thought, ‘But wait, am I even supposed to fold the laundry?’

I couldn’t remember what the facilitator had said, so I just kept folding.

‘Okay, laundry is mostly done. I am not even going to attempt to fold the socks into pairs. I’ll just lay the matching socks out together and move on,’ I thought trying to convince myself that now was not the time to be a perfectionist.

My progress came to a screeching halt as I thought, ‘Wait, why is there a random sock left over? Did I drop one?’

My brain wanted to loose my lips and let out my loudest scream possible. 

‘WHY IS IT SO DARK!’

As my frustration peaked, I felt something touch my arm.  

“Hey, come with me,” said the facilitator. 

The man who had originally brought me into the room was touching my arm, gently pulling me towards the door.

I was overjoyed that my eight minutes were finally up. 

‘Why is he walking so fast,’ I internally groaned.

The inserts they put in my shoes prior to me entering the simulation felt like I as walking on freshly laid gravel. The points jabbed into the soles of my feet, and no matter how I walked, I couldn’t seem to find any relief.

Already frustrated, I wanted to scold the facilitator and tell him, ‘Slow down, man!’

Once I was next door, I was helped into a chair. 

“I am going to start removing your garb,” a lady said.

She started by taking off the headphones. Finally able to hear normally, she lowered her voice and calmly narrated, “I am going to take the glasses off while trying not to pull your hair.”

“Oh, you’re fine,” I told her, even though everything was very much not fine. 

“Once I remove your gloves, we need you to fill out the survey that is laying on the desk,” she continued. “I will let you take the inserts out of your shoes.”

I tried to joke as I leaned over to take off my shoes, but I was still frazzled. 

“You are a journalist. Pull yourself together, Jennifer,” I continued to mentally scold myself. “It was just a simulation.” 

Just a simulation

Thankfully for me, it was just a simulation. For eight minutes, my senses were distorted, and I could no longer trust them. Sight, sound, touch – all of them were wrong. 

The room was far too dark and the goggles only made the limited light seem dimmer. My peripheral vision was gone, so when the facilitator touched my arm to get my attention, I had no clue he was there. 

My ears couldn’t hear what I needed them to nor differentiate between the ambient and important noises I was so desperately listening for. 

My feet were on fire from walking with the inserts, and my hands were utterly useless as the gloves inhibited my dexterity. 

The physical impairments not only limited my physical function, but they also took a toll on my thought process. 

Upon entering the simulation, no one said I couldn’t turn on a light, but I never looked for one. Several times throughout the whole process, I kept thinking that I wished there was more light, yet I never thought to find a light switch. 

It never occurred to me that a properly set table would have more than just plates and cups. Frankly, I was just happy that I had managed to separate the plates and cups enough to get them laid out. I never thought to check a drawer for silverware or napkins. 

Taking off the garb

While I was in a simulation, approximately 150,000 Kentuckians live through similar ailments on a daily basis. 

After eight minutes, I knew I would get to take off the garb and walk out of the room with all of my senses intact, but for those who are diagnosed with dementia, death is the only way for them to metaphorically take off their garb.

Dementia has no cure, no vaccine, and no long-term treatment.

Of the estimated 150,000 individuals suffering from some form of dementia in Kentucky, only about 75,000 have an official diagnosis. 

Care partners struggle to help and provide for the patient in ways that they need. 

To shed light on the issue, groups, like Christian Community Care in Corbin, have partnered with Second Wind Dreams® to teach their staffs what it is like to metaphorically, and for eight minutes physically, step into the shoes of individuals afflicted by dementia using Virtual Dementia Tours®. 

There are numerous types of dementia, with the most well-known being Alzheimer’s disease. 

Virtual Dementia Tour® specialists train facilities on how to administer the tours to other groups to raise overall awareness about the struggles afflicted individuals face and to promote empathy amongst caregivers and the public. 

Lessons learned

At the end of the tour, participants are asked to complete an exit survey. During a debrief meeting following the tour, many of the medical personnel who participated revealed they had answered the final survey question, paraphrased as – what did you learn, by stating that they learned to be more patient with the individuals in their care. 

My answer was a bit different. 

I don’t work in a medical setting, so I answered the question by stating that I learned to recognize that everyone is doing their best, and sometimes that means my best and some else’s best may look very different.

This is a lesson that I have been taught and tried to put into practice so many times. That day, I tangibly saw the results of someone, me specifically, doing their best and having nothing to show for it. 

Completing the Virtual Dementia Tour® increased my empathy for individuals living with dementia, but it also increased my empathy for people in general. 

My experience highlighted that while each person may face the same circumstances, we each bring a different set of physical, mental, and emotional attributes to those situations. 

The tour was a reminder that my best ‘looks better’ in my eyes because I know that I am using all of the resources that I have, and I am fortunate to have more physical, mental and emotional resources than many others.

When I ‘walked in the shoes’ of someone with dementia, I realized that my standard for comparison was jaded and artificial because I can’t always see the attributes others are trying to use to solve the same problem. 

It was a good reminder that we, as humans, are so critical of others even though we have no idea what it would be like to live a day in the life of someone else.