Six Minutes with Dementia

A few months ago, I participated in a virtual dementia tour given by one of the local assisted living facilities. In this simulation I had to step into the shoes of a person with dementia for six minutes. Now, six minutes may not seem like a very long time, but to me, it was. Prior to entering the simulation, I was asked questions about how I was feeling that day (I was fine) and if I had ever experienced neuropathy or problems with my memory (the answer was no). I can now admit that I thought to myself “they are asking a lot of questions; how hard can this actually be?”

The staff then provided and clothed me with several materials that mimicked certain symptoms that someone with dementia would display. Some of those materials included smeared goggles, spikes in my shoes, and a heavy glove on my dominant hand. Afterwards, they put me in a dark room and gave me headphones which sounded off loud, obnoxious, and random noises at any given time. My vision, hearing, and sense of touch were all impaired as I attempted to complete a task list posted on the wall. To make it even more difficult, a staff member was positioned in the room to write down observations and whisper cues in my ear. Yes! I said whisper. Can you imagine that? There was no way that I could hear everything he said on top of the headphones and strange noises, but I digress.

As I walked around the room experiencing utter chaos, I kept asking questions like “Is this over? Can I go now?” It was the longest six minutes of my life. To make matters worse, I had an allergic reaction to the pollen outside of the building, so I could not contain my itchy eyes, runny nose, and habitual sneezing. This was the perfect storm! The staff member in the room whispered several cues with one of them being to put on a white shirt. To this day, I am still convinced that there was no white shirt!!!

After leaving the room, I was directed into another room where I was given a sheet with a list of observations made by staff. One of the observations, to my surprise, was that I mumbled to myself several times. I do not remember that. In addition to that, they verified my questions of “is this over,” and “Can I go now?”

The virtual dementia tour will be forever engraved in my mind as I continue my work with seniors. The reality is that those with dementia cannot simply “turn off the noise.” They cannot walk out of their situation back to normalcy and everything they once knew. This is their new normal. As a geriatric care manager, I have worked with many seniors who suffer from various forms of dementia. This disease affects so many and makes life seem unbearable for not only the patient but also their loved ones.

I felt compelled to not only share my experience but give a glimpse of what someone with dementia may be going through. Although we may never feel everything that they are feeling, we must have compassion and understanding for those affected by this disease.

In my field, I often speak with family members and healthcare professionals who just do not understand the magnitude of the disease. Some of the things I hear from family members are: “Mom is so stubborn, she does not listen, “Dad is showing off because there is company today,” “It is so frustrating to have to keep repeating myself.”

The truth is that maybe Mom isn’t stubborn and there is a possibility she wants to listen but just does not understand what you are trying to say. Yes, maybe Dad is a little more anxious because his company is too much stimulation for his brain. Of course, I know it is frustrating to have to keep repeating yourself, but they may forget. It is all a part of the dementia process.

As a caregiver, it is important to get connected with others who may be going through the same thing. Join a local caregiver support group or get connected with your local Alzheimer’s Association. Get all the information you can to learn about this disease and the effect it has on everyday life.