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Dementia tour fosters deeper understanding

POSTED: August 26, 2013 12:28 a.m.
Crystal Ledford/

Suzi Sanchez, left, gets Mary Jo Jones ready for the Virtual Dementia Tour on Wednesday at The Oaks at Post Road assisted living facility. The event offered a first-hand look at what those suffering from dementia experience.

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Imagine being placed in a small, dark room.

Besides the lack of light, your vision is impaired by dark blobs covering the middle of your eyes.

Someone appears in front of you, handing a list a tasks to complete. But you can only make out a few of the words she is saying due to the constant blaring noise.

She walks out and you’ve not caught most of the instructions she provided, but still must try to complete the tasks.

You think she said something about matching socks that are laying in a pile of laundry on the bed a few steps away. Then there was something about a neck tie hanging in the closet, and writing a note with paper and a pen on the bedside table.

There was more, but you just didn’t catch it. And you’re not even 100 percent sure about the socks, tie and note.

You take a few steps, in an attempt to get started, but each one is agony because it feels as if your shoes are filled with thumbtacks.

After reaching the bed, you start with those socks, but it’s slow going because you can’t feel your fingers. After a few weak attempts, you decide to move on to the note.

Holding the pen is nearly impossible, though, and you can barely see the paper, so you abandon this task too.

At this point, you’re so frustrated and confused, you decide to just stand in one spot, shifting your weight from one foot to the other, hopelessly trying ease the foot pain.

It seems an eternity, but finally the lady returns to the room and with one simple word — “time” — everything in your world can go back to normal. 

You remove the goggles covering your eyes, the headphones with blaring noise over your ears, the thick gloves on your hands and the plastic, spiked insoles in your shoes.

But for someone with Alzheimer’s disease or other types of dementia, that confused, frustrating and downright scary state is their constant world.

About 30 people from Forsyth County experienced that lesson first hand Wednesday night as The Oaks at Post Road assisted living facility welcomed the Virtual Dementia Tour presented by Crossroads Hospice of Atlanta.

Through an individualized sensory deprivation experience, people who care for those suffering from dementia gain a much deeper understanding of what their loved ones go through every day.

Gwenn Fox of Cumming and her sister, Gale McCarthy, who was visiting from Massachusetts, wanted to take part in the tour as a way of learning about how to properly care for their mother, who moved into a room at The Oaks a couple of months ago.  

“We had no idea what to expect going into this,” Fox said.

Both learned quickly and, like most people, found the experience enlightening.  

“I found it very frustrating. I didn’t like all the noise … I had a hard time focusing because of that,” Fox said.

Added McCarthy: “I couldn’t remember a lot of the tasks. I had that sense of fear that I couldn’t remember them all. And what I thought I was remembering, I wasn’t quite sure. So I just did nothing.”

Registered nurse Karen Trocel led a “debriefing” at the end of the tour, where she explained the purpose of all the facets.

The gloves are to feel what it’s like to suffer problems such as arthritis and poor circulation, while the goggles limit vision as cataracts and typical aging can.

The plastic insoles simulate the pain of neuropathy, or nerve damage, which often becomes widespread and severe in the elderly.

All that blaring noise — emergency sirens, ambient chatter, clattering and occasional booms — is to understand the way someone with dementia hears.

With the condition, the ability to filter out background noise is lost. As a result, focusing on just one voice is almost impossible.

Due to this, Trocel said those with the conditions typically catch about one out of every six words that is spoken to them. Therefore, a lot of repetition often is required.

Patients with the conditions also become overwhelmed quite easily, Trocel said, so when family members think they’re helping their loved one, they may in fact be hurting them.

For example, she said it’s not always a good idea to take an Alzheimer’s patient out of their normal surrounding since it can be confusing, just as it was for the tour participants when they entered that dark room.

“We think, ‘Oh, we need to take mom out to dinner to give her a new experience,’” Trocel said. “But when you get there, with all the noise of the people at the table next to you, the waiter coming over, the clattering of dishes, it’s all just too much.

“You need to ask yourself, ‘Am I really doing what’s best for her or am I doing what’s best for me?’”

Kris Copes, one of the tour presenters, said the experience is often life-changing for many of the participants, particularly those who have loved ones fighting the condition.

“Family members might do a lot of reading online so they understand the physical change that happens,” she said, “but this shows them what the experience is actually like, so I think it’s a major shift in paradigm.

“It’s upsetting to some people … but it’s also bringing together the idea that being a caregiver is one of the very most difficult things a person has to do. Even when they’re family member is [in a facility like this], it’s still an enormous responsibility because they’re still watching them, and frequently doing their laundry and things like that to care for them.”

For Fox and McCarthy, the tour was a great tool as they become caregivers for their mother, who is in the early stages of dementia.

“I think it’s very helpful and would be helpful for anyone who has a family member with dementia because people are insensitive,” McCarthy said. “A lot of times you think you’re helping, but actually you’re not.”

“Our dad had Alzheimer’s and he passed away 10 years ago,” Fox added. “We went through all this then, but you forget. This was a really good reminder, I think.”

 

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