Through their eyes
Simulation mimics stumbling blocks faced by Alzheimer’s patients
Icould barely see and it felt strange to walk. There were loud noises and no one around me was speaking clearly. I was unable to feel anything with my fingers and had difficulty picking up things. I was confused and frustrated. But then, I took off the ear buds, the goggles, the gloves and removed the inserts from my shoes. My life returned to normal. For just those few moments, I could have been one of those men and women that develop Alzheimer’s disease every 68 seconds in the United States.
I had been invited by the staff at Solana Willistown to participate in the Virtual Dementia Tour (VDT). One section of the retirement community in Willistown is a secured life guidance neighborhood that works with men and women with dementia.
The program was established by nonprofit Second Wind Dreams, its mission is “to change the perception of aging through the fulfillment of dreams and the offering of innovative educational opportunities to caregivers and communities.”
According to the brochure, VDT is “designed to give the participant an up close, hands-on experience that provides critical insight to those caring for dementia.” The brochure also notes that 50 percent to 70 percent of people with Alzheimer’s will exhibit agitated and sometimes violent behavior. The tour “gives a feel for why a person may get agitated.”
Cynthia Lilly is the national life guidance program director for Solana. She said the tour is offered in various parts of the country to professionals, family members and caregivers, anyone who would like to get a better understanding of what it is like to have the ramifications of dementia, and to increase understanding and promote education of the disease process.
Dementia is not a specific disease. It’s an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. Alzheimer’s disease accounts for 60 to 80 percent of the cases, according to alz.org, the Alzehimer’s Association website. It also notes that an estimated 5.2 million people had Alzheimer’s in 2013.
Sonya Thomas, the life guidance director at Solana Willistown, administered the tour.
She gave me plastic inserts with hard, pointed protrusions to wear in my shoes so I could experience the discomfort that some feel with arthritis and neuropathy. The swim goggles had yellow lenses with obstructions to mimic loss of peripheral vision, glaucoma, macular degeneration and other vision issues. I wore thick gloves simulating the loss of fine motor skills and sensory nerves. The ear buds and the loud music and sharp sounds blaring from them were to achieve a sense of confusion and loss of hearing. And to make it even more difficult, lights in the room were dimmed.
The tour comes with a set of simple tasks to be completed while senses are impaired. Thomas asked me to do five things: write a letter to my family, find three pairs of socks piled on the bed, fold three towels, find the ace in a deck of cards and find a belt and put it on.
Doesn’t seem too difficult, does it?
But with all the distractions, obstacles and Thomas speaking quickly and in a normal volume — and not repeating anything — I was only able to hear “family” and “ace.”
Lilly talked about why those administering the simulation talk so quickly.
“It’s to simulate confusion. When people develop Alzheimer’s one of the side effects is the inability to process language the same way and to express oneself the same way. Often when people are talking in a conversational tone, it becomes jumbled for people with Alzheimer’s. They speed up so you feel the frustration.” She also said that those with Alzheimer’s no longer can pick up cues from their environment.
Most people are surprised or shocked after they take the tour, Lilly said.
“One thing that everyone does (after the tour) is they want to know how they did. Losing one’s memory, it’s a fear for everyone especially as we get older. It isn’t a disease that anyone wants to have.”
She stressed that the tour is not set up to test if you have or will get Alzheimer’s, rather “the simulation is set up to make you feel frustrated. It deliberately does that so you can sense the frustration at doing everyday tasks. The deck is stacked against you and that’s sort of what it’s like for someone with dementia.”
No one completes all the tasks, Lilly said. I ended up completing only two of the five tasks.
“Suddenly they understand, empathy toward the frustrations that the individual with Alzheimer’s faces,” said Lilly referring to those who have taken the tour. “Once they walk in their shoes, they can feel very guilty and upset thinking they could have been more understanding.”