Bloomington, Indiana Estate & Elder Law Blog

Saturday, August 18, 2012

Virtual Dementia

The following post has been copied, with permission, from attorney, John Roberts, who practice in Longmeadow, Massachusetts.  His original post is located here.

When I read this I thought that this was a great idea that would allow others to experience the sensations and emotions experienced by a person with diminished capacity, perhaps even Alzheimbers' disease.  This type of "tour" might allow more empathy from loved ones and caregivers.  Here is Mr. Roberts post:

In July, I took a ten minute Virtual Dementia Tour that opened my mind and heart to the emotions that might be experienced by a person who has diminished capacity.

Have you have ever taken a guided tour that provides a cassette tape, illustrated book, or a live tour guide who directs your attention and helps you understand a new or unfamiliar place? The dementia tour is just the opposite.

The dementia tour used props and devices that made it difficult or impossible for me to walk and do simple tasks.

The tour began as the tour guide placed headphones over my ears. I did not hear the clear and confident voice of a tour guide. Instead, the headphones played distracting bits of conversations, sirens and noises, to simulate the mental confusion that goes with inability to process and sort out sounds and voices.

To simulate macular degeneration and loss of vision, my eyes were covered with yellow tinted goggles that has a solid black focal point that obscured the center of my field of vision.

The tour guide had me take off my shoes and insert plastic sheets with prickly spokes, to simulate neuropathy and loss of feeling in me feet.

The tour guide put thick plastic gloves with bumpy spikes on both of my hands, taking away my sense of touch, and any dexterity that I may have had.

These artificial impairments set me up for the indignity of dementia, and the very serious emotions that a person with diminished capacity has to deal with every day:

CONSTANT IRRITATION: I felt annoyed that my hearing and vision was being interfered with. Why couldn’t I see the full field of vision, and what I could see was obscured through a yellow filmy haze? But this was only the beginning.

ANGER: The tour guide gave me quick instructions of what I was supposed to do next: fold up a pair of socks, straighten up my dinner plate, brush my teeth, and several other tasks that I couldn’t hear through the cacophony that was pouring into my head from the earphones. Why wouldn’t she speak more clearly? I asked her to repeat the instructions, but she was too busy, and sent me into the assisted living room to begin my day.

FEAR: I can only imagine the panic I would be feeling if this demonstration was the real thing. Someone who should know and understand my needs has just taken ten seconds telling me what to do, and pushed me away.

FRUSTRATION: I fumbled with the pair of socks, and tried to remember what tasks the tour guide told me to do. How am I supposed to get through this if no one will help me? There is a sitter in the room, watching me to make sure that I don’t trip and fall and hurt myself. I ask her to help me remember what to do next. Without looking up from whatever she is reading, she just tells me “do the best you can.”

SADNESS: I know I could do some of the tasks, if only someone would prompt me, or give me just a little bit of time or attention. But no one does. I am alone in this semi darkness.

After 5 or 10 minutes of futility, the tour is over. I have a small understanding of the emotions experienced by the person with dementia, and a much greater understanding of the importance of our responses to the need for care. Joanne Koenig Coste wrote about this need for understanding in Learning to Speak Alzheimer’s. The Alzheimer’s Association has a booklet on activities at home that explains how to approach the person with diminished capacity. Psychologists and other experts have explained how to avoid the need for antipsychotic drugs that are often prescribed when the frustration, fear and sadness leads to erratic behavior. Links to all these resources are available here.

More information from attorney Roberts can be found here.

I will be talking to my local hospital and others about this and seeing if perhaps they could offer something similar.  I really think this could help family members and caregivers have a better understanding of what our loved ones who suffer from dementia experience.


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