If you could walk in the shoes of your loved one with Dementia for a day, would you do it? Halcyon Hospice and CannonWood Village in Tiger, Georgia invited caregivers to do just that. Family members, Hospice nurses, Social Workers, Chaplains and Assisted Living Facility staff all came out to brave the virtual tour, stumbling headfirst into the world of dementia.
The Virtual Dementia Tour (VDT) is a hands-on, experiential workshop created for anyone looking to gain a better understanding of the physical and mental challenges of those with Alzheimer’s Disease and related dementias. Alzheimer’s disease is the most common form of dementia – the loss of intellectual function, among people aged 65 or older. There are approximately 35 million Americans age 65 and older and more than 5.4 million suffer from Alzheimer’s disease. Symptoms affect not only cognitive functioning but also psychological functioning.
The tagline for the VDT “your window into their world” is the best way to describe the experience. Maitland LaForce, Chaplain donned goggles, gloves, shoe inserts and headphones as Halcyon Hospice certified VDT presenter Tami Dedels explained the purpose of each accessory used to simulate what it’s like to have dementia.
Goggles mimic the effects of macular degeneration and glaucoma. Gloves, with two fingers on each hand taped together, simulate the effects of arthritis. Kernels are placed in shoes to give the feeling of neuropathy. Finally, ear buds are used to deliver an onslaught of distracting noises.
Once participants are prepped with sensory altering equipment they are placed in a chair and asked to wait until someone comes to retrieve them. “This isolation time is an integral part of the experience,” Tami Dedels said. “We try immersing you in the feeling of aloneness. We tell you not to talk, we walk you down the hall, and have you sit by yourself for a few minutes because it makes you feel alone. We’re sort of ordering you around in a nice way, but we’re not very engaging either.”
Prior to going inside a room similar to an apartment suite, participants are asked to complete five tasks in 12 minutes. The seemingly simple tasks given were a challenge for LaForce to complete: Find three pair of pants, find a tie and put it on, clear the table, fill a glass of water, and write a letter to your family.
Like most who took the tour, LaForce couldn’t complete all the tasks. He wandered around the suite trying to recall the last two tasks, mumbling to himself, and ultimately gave up in frustration.
“It was very confusing,” he said. “I felt lost and frustrated. I thought the sounds coming from the earphones of sirens and alarms were real.”
LaForce took the tour because he cares for his mother-in-law with dementia and supports Halcyon Hospice’s patients and family members as a Chaplain.
In the debriefing room, participants share their thoughts on their experience after having gone through the tour. Mentioned was a caregiver who came into the facility for the tour with a negative attitude and left with a new perspective.
She sobbed as Dedels told her “You are a different person than I met 15 minutes ago.” “I know it,” she cried. “I know the mistakes I’ve made with my mom. I get it and I understand.”
As she walked out of the facility she ran into another caregiver who had just experienced the tour and the two talked and shared ideas, comparing their moms and situations.
Other tour-goers mumbled or ran into walls in the suite. In short, they looked like people with dementia, most of them undergoing a paradigm shift of understanding upon completion of the tour.
Comments during debriefing included: “It teaches me not to expect more than my mom can do”, “The experience lets you know dementia in the biblical sense”, “I need to be more patient and go slower with dad”, “Limiting choices and reducing stimuli is essential for those living with dementia.”
The goal of Second Winds Dreams, the producer of the VDT, is to improve communication and care by allowing caregivers to identify with and understand their dementia patient’s or loved one’s behaviors and needs. Hopes are that with a better understanding, it creates an environment that supports the disease and reduces confusion.
P.K. Beville, the Georgia geriatric specialist who invented the tour, researched what happens inside the brains of dementia sufferers and fashioned the simulation using the results. She believes people need to understand the dementia experience.
“People really do need to walk in the shoes of someone in order to help them,” she said. “They need to step outside their comfort zone.”
According to Second Wind Dreams, the results of multiple tours have produced the following findings:
- The average person completed 2.5 of the five tasks assigned in the time allowed
- 84 percent experienced an increase in vital signs during the tour
- 40 percent gave up
- 25 percent made negative self-statements
Beville said the tour generally fosters empathy and is now offered in 14 countries and five languages.