What’s It Like to Live with Dementia?

By Robin Lacrimosa

On May 6, 2022, I did something I’ve been wanting to do for a long time. I completed the Virtual Dementia Tour (VDT®), a ground-breaking, evidence-based, and scientifically proven method of building a greater understanding of dementia.

The VDT uses patented sensory tools and instruction based on research conducted by P.K. Beville, M.S., a specialist in geriatrics and the founder of Second Wind Dreams®. During a Virtual Dementia Tour experience, trained facilitators guide participants outfitted with patented devices that alter their senses while they try to complete common everyday tasks and exercises. The VDT enables caregivers to experience for themselves the physical and mental challenges those with dementia face and use the experience to provide better person-centered care. The VDT® shows you what dementia feels like, how it affects the brain, and how you can provide better care for those living with dementia. The Cognitive Aging Research and Education Center at the Gerontology Department of the University of Georgia was responsible for bringing the VDT to Athens.

Unless you have dementia, you can only imagine what it is like for people living with the disease. We try to empathize, but I’ve never walked in their shoes so I can only imagine how it feels. Even though the tour lasted barely 30 minutes, it gave me deep insight into how a person with the disease is feeling.

Imagine living with dulled senses, confused perceptions, and the inability to communicate. That was part of the VDT experience. We were given headphones that made constant noise such as talking, sirens, music, and laughing. We wore thick bulky gloves, spiky inserts in our shoes, and special glasses that impaired vision. We were given a list of instructions to try and follow to complete five simple tasks while wearing the noisy headphones. It was hard to hear the list and focus on what the volunteer was saying.  We then had about five minutes to complete the tasks. You couldn’t ask for or receive any help.

At one point, I felt like something in my shoe was poking my foot, but I didn’t have the words to tell someone so they could fix it.

The time I spent in the VDT was a powerful reminder that how I felt for those 30 minutes is how a person living with dementia feels all day. When a dementia patient reacts negatively to you it might not have anything to do with you at all. They might have something uncomfortable poking their foot and they just can’t verbalize it.

One of the volunteers observed me mumbling, humming, and talking to myself. I had no idea I was doing this! “You were using the sound of your own voice to feel more comfortable,” the volunteer told me. “We need to allow this when people with dementia do it.”

I had no clue. At one point in the VDT, the fire alarm went off. It scared me quite badly, and I started to look for a way out. I was confused when no one else was reacting the same way I was! It took me several seconds to realize that the alarm was only in my headset. No one else could hear it. I realized that if I had dementia, I would be in a total panic hearing the alarm and trying to save people around me who weren’t reacting appropriately—not realizing that only I could hear the alarm. 

And don’t even get me started on trying to pick up playing cards off the floor! It was impossible and incredibly frustrating, thanks to the glasses we were wearing. They had smears and spots on them that obscured vision.

I believe the more closely you can relate to someone’s condition or experience, the more you can connect on a deeper level with them. 

That, in my opinion, is reason enough to attend a Virtual Dementia Tour.

Robin Lacrimosa is a Life Care Coordinator at Kimbrough Law, a Life Care Planning Law Firm with offices in Athens and Gainesville, Georgia.