What Does Dementia Feel Like?

As a caregiver for my Father who was diagnosed with Alzheimer’s in 2004, I wanted a front row seat into his world. I wanted to see what he saw and experience what he experienced so I could better understand his reality. So last week I went to the heart of Atlanta during my lunch break for a Virtual Dementia Tour, a research-based experience by Second Wind Dreams that enables people to walk in the shoes of someone with dementia.

 

It was five minutes I will never forget.

 

I was instructed to place my hands in oversized gloves that had the index and middle fingers sewn together and to wear what looked like sunglasses. A sheet of prickly plastic was placed in each of my shoes and headphones were placed snugly over my ears. Once the headphones were turned on, I heard what seemed like two different radio talk shows airing at the same time. It was constant chatter and too loud for me to block out. I could see nothing out of the sunglasses but blurry objects I knew to be people in front of me. I had no peripheral vision.

A woman led me by the hand down the hall into a dimly lit room. There were six or seven tables set up with objects on them and a rack of random clothes stood to the left. Someone sat in the back of the room, noting my every movement. The woman who had led me by the hand read from a sheet of paper. She seemed to be giving me instructions, but I couldn’t make out what she was saying. I heard the words “coat”, “purse” and “batteries.” When she finished, I told her, “I can’t hear you.” But she just walked away, leaving me to figure things out for myself.

 

Another participant had started the tour about three minutes before me. She was moving from table to table, picking up objects. The thought crossed my mind that I could just follow her lead, but what if we’d been given a different set of instructions? I decided to walk around the room and try to make out what was on each table. I found an assortment of towels, purses, hand mirrors and turquoise-colored fabric boxes of frisbees, plastic utensils and batteries. After a minute there was a loud siren in my headphone set. It startled me and at first, I wondered if I had walked to a table that was off limits. Eventually the siren stopped but two minutes later another startling sound rang out.

I knew this tour would last only a few minutes, but those minutes seemed like an eternity. The prickly plastic inserts were killing my feet, so I just leaned on a table and shifted my weight from one foot to the next. The woman in the back of the room who had been recording my every movement came up to me and tried to encourage me to go from table to table and look at the objects.

 

“I couldn’t hear the instructions,” I told her, “so I don’t know what I’m supposed to be doing.”

 

Mercifully, she told me I could end the tour and take off the awkward paraphernalia. Then I was led to a debriefing room where the creator of the tour asked us questions and explained the purpose behind each obstructive accessory.

 

Gloves ~ The index and middle fingers of the gloves were sewn together because one part of the human brain sends instructions to those two fingers and the thumb, while another part of the brain sends instructions to the pinkie and ring fingers. People with dementia often have problems picking up things like utensils because one part of their brain is communicating effectively but the other part has deteriorated and cannot send instructions effectively.

 

Glasses ~ People with dementia lose their peripheral vision so they cannot see anything or anyone approaching them on either side. The glasses were also designed to mimic macular degeneration since many elderly people lose their vision.

 

Inserts ~ The prickly inserts symbolized the constant pain that plagues many people with dementia (not necessarily foot pain. It could be an abscessed tooth, joint pain or lower back pain.) This pain inhibits their ability to perform simple tasks and results in irritability and frustration. Since people with dementia often cannot effectively communicate, their pain goes undiagnosed and their coping behaviors are misinterpreted.

Headphones ~ The human brain processes hundreds of sounds every day in a matter of seconds. But when someone develops dementia, their brain’s ability to process these everyday noises is greatly impaired. The result is a constant chatter in their ears and startling sounds like sirens or clanging pots cannot be easily identified or dismissed.

 

When I was first led into the room and given instructions, the woman just walked away. I was left to try to figure out everything on my own. It was extremely frustrating and very isolating. What was I supposed to be doing? This is exactly what people with dementia feel when given a task and then left to fend for themselves.

 

As I thought about this in the debriefing room, I couldn’t hold back the tears, thinking of the times I had given my Dad instructions and then left him alone in a room. I had no idea that asking him to pick out a baseball cap to wear that day could leave him feeling frustrated and abandoned. I also didn’t realize that approaching him from the side, rather than facing him head on, would cause him confusion.

 

As I processed this experience, I wondered what would have helped me in that room. What would have lessened or eliminated the isolation and frustration I felt?

 

When I was first being led by the hand into that room, I had support. Someone to guide me. Someone to lean on so I could manage the prickly plastic inserts better and save my feet from so much pain. I had never met this woman before in my life. But that didn’t matter. I didn’t care that she was a stranger. She offered me her hand and I took it.

 

The support she gave me cost nothing except her time. Time is an enormous commodity in our western world but each one of us is given the same amount every day. We see our 24 hours as valuable but what about the 24 hours of a person with dementia? Isn’t it worth giving a few minutes of our time to lessen the isolation and frustration they feel?

I learned a lot from this experience. Taking a virtual walk in the shoes of someone with dementia taught me that the greatest need they have and the greatest gift I could give them is patient, loving support.

 

It was five minutes I will never forget.

8 thoughts on “What Does Dementia Feel Like?”

  1. Wow! I have always wondered what my father-in-law is feeling, and thinking… what his life is like now that he has dementia. Thank you Angie. This is so insightful.

  2. Angie, I went thru this virtual dementia experience at Grace Arbor when Robin Dill did a caregiver training program. It was enlightening and I did exactly what you did. Because I could not understand the instructions I had no idea what to do so I stood in one place and rocked from side to side, foot to foot…..
    Thanks for sharing your experience and reminding me of mine.

  3. Angie, this was an amazing article! I read it twice. It was so interesting to me and allowed me to experience some of what my father experienced. Thank you for these articles!

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