By Elias Kerby, Elder & Disability Law Clinic Student, Fall 2016

“Dementia does not rob someone of their dignity, it’s our reaction to them that does.” This quote by dementia and Alzheimer’s care expert Teepa Snow speaks volumes about the hidden suffering of those living with one of the most common disabilities among the elderly – dementia. One of the biggest hurdles to overcome in improving the quality of life of any disabled individual is understanding their obstacles and their experiences so you can best give them the respect and dignity they deserve.

I used to work at a hospital, and my boss would always refer to the Sylvia Plath poem “The Eye-Mote” when trying to explain what dementia patients who are unable to communicate really want. The poem, which is about Plath’s own extended hospital stay where she was unable to move or speak, shows the experience of being trapped in a body from the patient’s side. She spends weeks lying in a hospital bed, aware but locked in, unable to communicate her needs and stuck passively watching as caretakers and visitors shape the world she lives in. My boss would point to a specific line and say that it crystallized the needs of those living with dementia – “What I want back is what I was.”

That hospital required caretakers had to go through an exercise known as the “simulated dementia experience,” which was meant to give them a taste of what life with dementia is like. I went through the simulated dementia experience, and would recommend something similar to anyone who works with dementia patients.

First, rubber gloves are taped to your hands to simulate a lack of feeling and dexterity. Then, popcorn kernels are put in your shoes to reproduce the fibromyalgia of just moving around. You receive goggles that block out certain colors and have randomly appearing blind spots, as well as headphones that play a random selection of noises – cars honking, the phone ringing, music from your youth – everything having to do with your senses and experience of the world becomes chaotic and unpredictable.

After you’re suited up, a caretaker reads you a list of instructions for cleaning up your room at a care facility and getting ready for bed at night. Of course, you can’t hear him because your auditory hallucinations are too loud. He then leads you into your room, which is dark and messy with random flashes of light and strange sounds coming from places they shouldn’t. You know you’re supposed to be doing something, but not sure what, so you look to the printed instructions on the wall – which at this point you can’t read because the letters are jumbled up or missing. Time goes by, you surrender because trying to figure out what you’re supposed to do is futile, and you feel frustrated at your inability to act. Eventually, the caretaker comes back, sees you have not gotten ready for bed, and yells at you for not doing what he said.

From the caretaker’s point of view, he took you to your room and gave you simple instructions to do things you’ve done a thousand times before. He thinks he’s given you all the instruction you need but is unaware of how difficult everything is on your side of the equation. Without exercises like this, the hospital caretakers might make the same mistakes the caretaker in the simulated dementia experience made, and which caretakers of dementia patients do make all the time. Situations like this give rise to much of the vulnerability dementia patients feel, where the difficulty of daily life is made worse by our inadequate response to their needs.

The Elder & Disability Law Clinic is devoted to the dignity, care, and respect of dementia patients and seeks to promote a fuller understanding of the experience of living with dementia. Every person is deserving of being treated with dignity, and dementia patients are often at their most vulnerable. Treating dementia patients without understanding their condition can make them feel like they have no dignity, which should never be the case. The EDLC is committed to promoting informed care practices so that every caretaker can have the resources they need to be well-equipped in caring for their dementia patients.