Understanding life through the lens of dementia and alzheimer's


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Understanding life through the lens of dementia
By STEVE KNIGHT/The Lufkin News | Posted: Monday, August 19, 2013 1:30 am
Nothing could have prepared me for what was about to happen.
I met with representatives of MRC PineCrest Retirement Community in Lufkin to experience the Virtual Dementia
Tour, a program created by P.K. Beville, a specialist in Geriatrics and founder of Second Wind Dreams, that
demonstrates the physical and mental challenges facing those with dementia, which includes Alzheimer's disease
and other illnesses that reduce a person's ability to perform everyday activities.
"The solution to Alzheimer's disease today and in the foreseeable future is in developing a better and more
personal understanding of the day-to-day challenges facing those with the disease," Beville said in a statement in
the Atlanta-based non-profit organization's website. "The Virtual Dementia Tour program is the tool that makes
that understanding possible. America is asleep at the switch waiting for that magic cure for Alzheimer's disease
that is still decades away. We need to take stock of the here and now and develop a deeper understanding of the
minds of those with the disease. The Virtual Dementia Tour program truly sets the standard for creating greater
awareness of Alzheimer's and sensitivity for those with dementia."
I got my initial lesson in understanding the disease the hard way.
April Turner, MRC PineCrest's director of assisted living, first asked me to put corn kernels in my shoes to
simulate neuropathy, which comes from the result of nerve damage, often causing weakness, numbness and pain,
usually in the hands and feet. I was also asked to put on gloves also containing corn kernels. Three of my fingers
in the right hand where taped together to simulate arthritis, then two fingers in my left hand were taped. I then put
on a pair of yellow-lens goggles with tape placed in the middle of each lens to simulate macular degeneration, the
leading cause of vision loss in people 60 and older. The goggles also were designed to simulate yellowing of the
eyes and the loss of peripheral vision.
Turner also told me I would be observed by herself, Executive Director Amy Thomas and Director of Clinical
Admissions Amanda Scarborough.
But wait, there's more.
Headphones were then placed over my ears, playing a compact disc that included indistinguishable voices, as well
as telephone rings, sirens, door slams and other everyday sounds. It was unintelligible.
I was told before the headphones were placed that I would receive instructions to perform specific tasks. However,
once I put the headphones on, I couldn't hear any instructions - maybe a word or two. I had no idea what to do.
The world suddenly begun to close in on me. I couldn't see. I couldn't hear. The feeling of helplessness was
overwhelming. As someone who lives alone, I'm used to doing everything for myself. Suddenly, I couldn't do
I was asked not to reveal what the tasks were - I would hate to deprive anyone else of the experience - but I can
tell you these were everyday tasks that you and I take for granted. I would not have been able to write this story if I
still had those gloves on.
Understanding life through the lens of dementia - The Lufkin News: Local & State
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My only relief was knowing it would end soon. But for millions of people with Alzheimer's and other dementias,
there is no relief for them or their families, friends and caregivers. According to the Alzheimer's Association, one
in eight older Americans has Alzheimer's disease. It's ultimately fatal.
At the end of the session, I was asked how I felt. Angry. Disoriented. Frustrated. Helpless. Confused. A little
embarrassed. Should I keep going? I was so startled that I nearly forgot to take photographs for this story.
I then sat down with the MRC PineCrest representatives to talk about what happened and why they use the
"There are a couple of endgames that we have when we do this," Turner said. "We do it for a family or community
member, and it's mainly educational for them. We want to be the resource for education here in the community.
We want to make sure we can communicate all of the resident's needs to their families through education and
For staff members, she said, the program is used for educational as well as empathy training. It's also used a part
of the hiring process for new employees.
"You can tell which employees are going to care and we which ones aren't," she said. "You have some that choose
not to do anything. They'll ask, 'Is my time up yet?' You've got some that don't know what to do any they're
confused. They'll say some things - sometimes bad language - and do things, but it's good training for them. It's
good empathy training because that's what we specialize in. The Virtual Dementia Tour allows us to get the right
caregivers for our residents."
Thomas said they observe all different kinds of reactions during the demonstration.
"They may act as if they know," Thomas said. "Some will just shut down and not say anything. With the noise,
some dementia residents hear things. They hear talking and there's a lot going on inside their head that we don't
know about. The siren, telephone and door slam are typical environmental noises they will here when they are
living in their home. They'll hear the telephone. They'll hear the dumpster or the door bell and then they get
Some of these environmental sounds were louder than the surrounding noise which scared me a bit. It was
disturbing. Thomas talked about my reaction to the sounds.
"You were probably distracted and caught a little off guard," she said. "That's typical behavior of a dementia
resident. The purpose of you not hearing all of the information was so you could have the experience of a dementia
resident. Even though a dementia resident may hear the instructions, they couldn't process it. You were literally
living the life of a dementia resident. You were sitting there thinking, 'I know I'm supposed to do something, but I
don't know what it is.'"
With dementia residents, Thomas said, it's important to repeat directions several times, but also to show them how
to perform the task.
"They don't always understand what you are saying," she said. "If you show them what to do, they can understand
the action. You have to show them. In a dementia resident, they may hear it, but can't process it. That's why we
Understanding life through the lens of dementia - The Lufkin News: Local & State
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