Now I know what it feels like to experience dementia

By Correne Martin

For just seven minutes, I struggled. 

I couldn’t flip the newspaper pages or punch the tiny keys on the phone. I had to adapt when I couldn’t remove silverware from the drawer or pick up a pen from the table. My dexterity was weakened and I could hardly open the pet food container to feed my dog.

I saw people around me smiling and nodding, sometimes shrugging their shoulders and laughing. But I could barely hear what they said. 

My distant vision was poor and my peripheral vision was non-existent. To see and hear someone behind me, I had to turn my entire body around and face her—and even then, my senses were limited. 

The sounds I heard were chaotic. One conversation was happening in my left ear, and another in my right. The occasional blaring sounds like a train horn or building alarm were startling. 

I felt frustrated, annoyed, embarrassed, isolated. I wondered about asking for help, but I also felt determined to finish the tasks on my own. 

Ultimately, I was upset and just wanted to go home and sit in silence. 

This temporary encounter was bothersome to me. Yet, it was only seven minutes of my day. 

I don’t have dementia. 

But, for that short period of time, and in many ways, it sure felt like I did. 

I wore monocular glasses, sound-emitting headphones and knitting gloves. It was enough impairment for me to gain a greater awareness and understanding of the constant struggles affecting those with dementia. 

Dementia Live is a free simulation program for community members. Participants wear specialized gear in a safe setting and undergo a brief realistic experience with the challenges of living with dementia. Sponsored by the Aging and Disability Resource Center of Eagle Country-Prairie du Chien office, as well as Crossing Rivers Health and the AGE-u-cate Training Institute, Dementia Live was offered at the hospital April 25 and 26. 

I was part of a half-dozen others—mostly medical employees—who engaged in one of 10 simulations, which involved a scenario briefing and discussion afterward about how the activity made us feel. 

I was the last of my group to enter the room filled with individual tasks we were asked to attempt. Though, I couldn’t hear a word of the administrators’ directions, I tried my best and felt the determination they later said is common with dementia sufferers. Because of my ability to watch those in front of me interact, I somewhat sat back and observed, then followed. But I still felt aimless.

According to AGE-u-cate, dementia gradually diminishes a person’s ability to communicate. The person has more difficulty expressing thoughts and emotions, and more trouble understanding others, so behavior may become a means of communicating. 

“The brain is literally dying. They don’t know what noises are; it all sounds like a jumbled mess,” said Gina Laack, ADRC dementia care specialist. “It’s not just memory loss. It’s forgetting things and not seeing them how we see it.”

A few caregiving tips were discussed for those family members who need to recognize behavior changes and understand the root cause, which can be extremely helpful in learning to navigate them. 

Some tips include: 1) making eye contact, 2) speaking in a calm tone of voice, 3) listening with interest, 4) having short, simple conversations, 5) not arguing, 6) reminiscing, 7) observing to help determine abilities to perform daily tasks, 8) assisting as needed, and 9) ensuring self-care.

Laack said it’s important for caregivers to know resources are available and there are people who understand and can help. Contact the ADRC office at 326-0235 or visit the staff at suite 117 of the county administration building in Prairie du Chien. 

Also call (817) 857-1157 or visit AGEucate.com for more details about participating in Dementia Live or other training programs.