Imagine yourself in a carnival funhouse. You step inside and the lights go dim. You can barely see what’s in front of you so you reach out your arms to feel your way along the walls, but this is no use. Beyond the strange tingling sensation in your fingertips, all you can feel are some large, unidentifiable objects. Suddenly the floor becomes uneven and you lose your balance. Trying to gain your bearings with limited sight and touch is tricky enough, but now it’s almost impossible to concentrate because you are constantly bombarded by a hodgepodge of random, jarring noises. Quickly realizing that this is not as “fun” as you had hoped, you struggle to make your way to the end and finally find the exit. You step out into daylight and onto steady ground, safely away from the chaotic madhouse.
But for those living with Alzheimer’s disease and other forms of dementia, like 79-year-old Lawanda Wilson, this scenario is all too real — it has become her life. Blane Wilson, whose mother is currently struggling with Alzheimer’s, participated in the “Virtual Dementia Tour” and was unable to complete simple tasks like clearing a table of dishes. “It’s unbearable. I couldn’t imagine living like that,” he says. “I knew that my mother was starting to lose her memory a little bit, but I never dreamed that it would be anything like this,” Blane Wilson said. “It was like you’re in a dream and you’re not waking up from it.”
Alzheimer’s, a progressive brain disease, slowly destroys brain cells, affecting one’s memory and eventually the ability to carry out simple tasks of daily life. About 5.3 million Americans currently live with Alzheimer’s and every 72 seconds, a new patient is diagnosed with the disease. Alzheimer’s symptoms make caring for patients with the disease difficult and often painful — particularly if the caregiver is a family member or loved one.
Even for the most sympathetic, loving caregivers like Blane and Georgia Wilson, it can be hard to truly understand the irritability, forgetfulness and distraction that beleaguer the victims of Alzheimer’s disease.
Experiencing Dementia Firsthand
P.K. Beville, a geriatric psychologist and founder of the nonprofit senior citizen advocacy group Second Wind Dreams, is trying to remedy this problem. She created the Virtual Dementia Tour, an experiential kit used to simulate the symptoms of age-related Alzheimer’s and dementia and to help caregivers better identify and cope with their patients’ behaviors and needs.
“Once you go through [the exercise] you find that most of the behavior patterns are actually coping strategies,” Beville said.
Here’s how it works: First the subject is fitted with gear that simulates the physical symptoms of age.
A pair of yellow-tinted goggles mimics the effects of eye diseases, like macular degeneration and glaucoma.
The subject then places dried corn kernels in their shoes and gloves, creating painful sensations like those caused by peripheral nerve damage.
Finally, the subject’s fingers are taped together, making it difficult to grasp objects and utilize their hands, as though the subject is suffering from arthritis.
Once the physical symptoms are manifested, the subject is ready to experience the cognitive effects of dementia, which can include memory loss, confusion, inability to concentrate, agitation and the inability to carry out simple tasks.
To create this mental disorder, the subject listens to something called a “confusion tape” through headphones — a constant loop combining environmental noises, static fuzz, sporadic loud sirens and beeps.
This cacophony helps induce a chaotic mental state, similar to what many dementia patients experience. Once the participants are all geared up, the experiment begins. Test administrators read a set of instructions to the participants, giving them five simple tasks to complete — set a table for four, brush your teeth, fold some laundry, etc. Even this is not as straightforward as it sounds: Test administrators intentionally read the instructions at the same volume as the “confusion tape,” so that it’s hard for subjects to even decipher what they are supposed to be doing.
Click the link to view the news report: Virtual Dementia Tour
Cynthia McFadden of “Primetime” agreed to try out the Virtual Dementia Tour, and joining her was Blane Wilson, whose mother, Lawanda, is fighting an ongoing battle with Alzheimer’s. McFadden was given a seemingly simple task — find a white sweater — but she said she couldn’t help being distracted by the incessant noises coming from her headphones. In order to stay focused, McFadden said, she had to start talking to herself. “Honestly, the thing that shock[ed] me the most is that I couldn’t remember five simple instructions,” she said afterwards. “It changed my understanding of what people with dementia face every day. “I mean, I’m the queen of multi-tasking. I can do anything, I can do 20 things at once, I’m a mom, I’m a, it’s very humbling,” she said. Wilson, who was unable to clear a table of dishes or successfully find a tie, was similarly frustrated by the experience. “It’s a deep sense of confusion. It’s unbearable. … I couldn’t imagine living like that,” he told “Primetime.”
Impeded by limited motor skills, blurred vision, and the incessant buzz of distracting noises, participants, like McFadden and Wilson, often exhibit behaviors that mirror those of Alzheimer’s patients, Beville said. They become frustrated with their inability to perform what they know are simple tasks, and unless they get help or guidance, they often resign in anger and defeat. The experiment has helped caregivers better understand the plight of their loved ones, a crucial weapon in the fight against Alzheimer’s.
Beville said she has administered the Virtual Dementia Tour to more than 10,000 professional caregivers, and has identified specific ways of improving care for a person with Alzheimer’s. She said that offering positive reinforcement and encouragement is essential for any caregiver. In several of her experiments Beville provided guidance by offering a pat on the back and saying, “You’re doing great.” By repeating this every four minutes, she found that the person remained calmer and was able to accomplish all of the tasks that were assigned. By learning how to better cope with the effects of Alzheimer’s, caregivers and family members might feel more equipped to manage and treat a loved one who is diagnosed with the disease,” Beville said.
“It is a way of giving people hope,” she said.
And in the battle against Alzheimer’s, a little bit of hope can go a long way.
By MARINA KATZ
June 30, 2009