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Living with dementia

In an effort to help caregivers gain a glimpse into the world of dementia, Arden Courts hosted a "Virtual Dementia Tour" on Tuesday at the Blue Mountain Health System Bowmanstown Medical Plaza. The program was developed by Second Wind Dreams, a nonprofit organization in Georgia. About 20 people attended.

Jennie Rose Serfass, a certified dementia practitioner and business development specialist for Arden Courts in Allentown, explained that people with dementia "have an unmet need they can't communicate with you." She said there are more than 100 other forms of dementia. Alzheimer's disease is one of the most prevalent."Every behavior has meaning," Serfass said. "It's up to the caregiver to figure it out."I decided to take the tour and see for myself what dementia is like. It's designed to cause sensory overload.The first part is a questionnaire to help the tour guide gauge the level of frustration and stress a caregiver is feeling before beginning the tour.Next, the participant is asked to place flexible-plastic shoe insoles with little points on them in his or her shoes, and then slip on the shoes. The insoles are like those mats with points designed to grip the surface of the ground it sits on. The points are supposed to give the wearer a sense of what neuropathy in the feet feels like. Just the feeling of the points against the bottom of my feet made me want to stay seated, but that wasn't going to happen.Then comes the hands. On the dominate hand, they ask the participant to put on a thick glove with stiff fingers that barely move. Dexterity? Gone. The purpose is to replicate the loss of movement due to arthritis.On the other hand, I wore a glove covered in a bumpy surface on the inside. It's meant to be similar to neuropathy in the hands. I was so preoccupied by the loss (for all intensive purposes) of my right hand to much notice the left.Eyesight was next to go. I was given a pair of sunglasses with the outer edges darkened, a black circle like a washer in the center. The space between the two was bumpy. The darkness on the edge represented tunnel vision; the black, washer-like circles simulated cataracts, and the bumpy surface was macular degeneration.Asked to stand, I was led into the kitchen area of the conference room. My feet hurt pressed against the pointy insoles. There was no way to avoid putting all of my weight on at least one of my feet.In the dimly lit room, which was meant to replicate diminished vision, I was asked to complete several simple tasks. After the first four, I lost count of the rest that I was asked to do, and I couldn't ask questions, because people with dementia often lose the ability to speak or convey their thoughts accurately.The tasks had to be completed within five minutes. Go!A tape recording of a cacophony of noise was turned on. People talking over each other, sounds in a city, jumbled conversations, none of it made any sense. None of it was distinguishable, except for a jarring fire siren that blared out of nowhere.Unlike people with dementia, I still have my mental faculties, so I was able to disconnect from the noise and focus on the tasks I was told to do. I also had another advantage in this challenge, I don't have the aches and pains that dominate the joints, so I could still move about pretty quick.Even with all of my advantages, I found completing the tasks difficult. Fumbling around was - well - embarrassing. The loss of being a capable, productive person was frustrating.Serfass said she has had people say afterward that they final understand why their father couldn't hold a fork, mother wore mismatched clothing or buttons were left unbuttoned.What were the tasks I was asked to complete?Set a place setting for two people, draw a clock with the time showing 10 minutes after four, put on the white sweater and count out 17 cents. There were more, but that was all I could remember.I did almost everything I could remember being asked to do, except for the white sweater. I couldn't find it. I felt around for it, because I couldn't easily distinguish between the white surface of the counter top and white objects. It was tucked inside a cabinet.Serfass said it's important to tell people with dementia where things are located.The five minutes seemed much longer, because the pain in my feet and the feeling of disorientation were so distracting. The first thing I did was take out those shoe insoles but even after 20 minutes, I could still feel the points on the soles of my feet.

These items are used for the Virtual Dementia Tour to help people to understand what those with dementia experience. KRISTINE PORTER/TIMES NEWS
Arden Courts in Allentown has a room set up to look just like it would in someone's home in order to illustrate through the Virtual Dementia Tour the difficulties of daily life. PHOTO PROVIDED