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SUNDAY,
APRIL 12, 2009 | NEWS, ATLANTA
The World According to Alzheimer’s
Alpharetta woman develops Virtual Dementia Tour so others
can see what it’s like
By
Diane Loupe
The voices in your head sound like a bunch of radio stations that aren’t
quite coming in clearly. Your vision is blurry, small spikes are pressing
into the soles of your feet, and your hands fumble as you try to pick
up a glass, fill it halfway and drink from it.
You can't remember what you were doing and the other people in the room
don’t help. Suddenly, you’re startled by an earsplitting siren. Then a
voice tells you to set the table.
Welcome
to the world of dementia, populated by more than 4.5 million Americans
over the age of 65. Symptoms include becoming easily agitated or suffering
memory loss, as well as an inability to perform simple tasks or control
emotions. Dementia can be caused by stroke and Alzheimer’s disease. According
to Alpharetta psychologist P.K. Beville, most people suffering from dementia
or Alzheimer’s are cared for at home by family or friends who may have
little training and less understanding of what their loved ones are experiencing.
Beville doesn’t have dementia, but she’s got the next best thing: a virtual
passport into the world of dementia, courtesy of a kit she calls the Virtual
Dementia Tour.
Beville spent more than 20 years working with people in long-term care
facilities and noticed a lack of empathy from caregivers toward those
struggling with Alzheimer’s and dementia.
"How arrogant is it of us to sit back and decide what is good for
patients with dementia, and what they need to do or don’t need to do?"
asks Beville. "And sometimes medicate them for doing things that
we view to be outside of the norm?"
So Beville decided to develop a "way to create a hands-on experience
that mimics what research shows us andwhat observation over the years
shows us to be normal for a person with dementia."
Beville developed a kit designed to simulate the physiological changes
in the brains of people with dementia. The kit is relatively simple: a
pair of swim goggles with the vision obscured by a small circle; a thick
pair of gloves; and shoe inserts with small plastic spikes. A volunteer
puts on these items and then listens to a CD and tries to follow the instructions
she hears.
Constantly bombarded Lamar Chesney, an executive vice president with SunTrust
Bank, and his wife took the Virtual Dementia Tour after caring for Chesney’s
father, who suffered from dementia.
"It’s painful to walk. It’s painful to focus your sight," says
Chesney. "You are constantly bombarded by relevant and irrelevant
noise. You have to sort through what is relevant in life to be able to
function."
Experiencing the tour was "deeply enlightening," Chesney says,
because it helped him understand that his way of doing things "differs
dramatically from someone who was in that state." When he told his
father to go into the bathroom and prepare to take a bath, Chesney often
found the older man bewildered.
"No wonder he got upset and angry," Chesney says. "He didn’t
know how to do things."
Chesney learned, through the tour and other educational materials, that
a person with dementia needs such tasks broken down. "You have
to give examples of what you need to do to take off all of your clothes,"
says Chesney. "Take off your shirt. Lay your shirt down here. Take
off your shoes. Put your shoes here."
In Beville’s kit, gloves and goggles provide a facsimile of the fading
vision and arthritis common among the aged. The plastic spikes digging
into your feet simulate peripheral neuropathy, or numbness and tingling
in your hands and feet. But it’s the confusion tape that brings the message
home.
"People with dementia and Alzheimer’s complain that they hear sounds
that they can’t make sense out of, and bits and pieces of things, and
they respond inappropriately," says Beville. "You see them standing,
shaking their head, touching the sides of their heads."
The cacophony of the tape is bewildering, with barely discernable noises
interspersed with a few commands and startling loud noises from telephones
or sirens. Most people learn to screen out irrelevant noises; someone
living near a train track learns to ignore the sound of trains, for example.
But studies have shown that the brains of people with Alzheimer’s or dementia
have lost this ability, so that the sound of a door slamming or a loud
voice startles them.
More than 10,000 professional caregivers have gone through a similar Virtual
Dementia Tour designed for
groups. The individual kit, selling for $50, is designed to be used at
home. All proceeds from the sale of the kit benefit Second Wind Dreams,
a project founded by Beville to fulfill the wishes of residents of nursing
homes and assisted living facilities. Last year, Second Wind Dreams helped
an 84-year-old former All-Star pitcher meet President George W. Bush,
former owner of the Texas Rangers.
Caregivers can do other things to learn about the struggles of Alzheimer’s
patients, says Ginny Helms, vice
president of services and public policy for the Georgia chapter of the
Alzheimer’s Association. A new novel, "Still Alice," by neuroscientist
Lisa Genova, describes a 50-year-old woman's sudden descent into early-onset
Alzheimer’s disease. Helms says the novel puts the reader in the shoes
of someone with the condition.
Similarly, the Virtual Dementia Tour is a valuable tool, especially for
caregivers, says Helms, who went through the tour herself. "What’s
really interesting is to try to accomplish your assignment with goggles
and headsets on," says Helms. "I was very frustrated and just
wanted to say ‘forget it.’"
Buckhead banker Chesney took the tour after his father passed away, but
he says it would have helped him be a better caretaker if he had taken
it while his father still lived.
"It would have made me much more patient, much more understanding,
and would have changed the way I would have interacted with him,"
says Chesney. "I encourage anybody who has a close relative or friend
who has dementia to at least take the time, the 15 minutes, to experience
it. It will change your life and the way you interact with other
people." SP
For more information:
http://www.secondwind.org/virtualdimentiatour.html
VDT
for Groups 
VDT for Individuals/Families