What does it feel like to be a person with dementia?

MIDDLEBURY — You know those moments when you’re interacting with another person and they respond in a way that totally shocks or surprises you. “What were they thinking when they did that?” you say to yourself.
Have you ever wondered what it would be like to step into their shoes in that moment, to catch a glimpse of what might have motivated their action or emotion?
Well, the Residence at Otter Creek is offering an opportunity for people to experience a sliver of what it may feel like to have dementia.
Through a simulation routine led by Resident Engagement Director Courtney Allenson, in about five minutes a family member, caretaker, or friend can gain valuable insight into the many obstacles a person struggling with dementia may face. This awareness helps that person’s surrounding community act with compassion and patience, rather than frustration and haste.
My husband’s late grandmother suffered from dementia and for several years before her death we watched as she slowly lost memories, lost her place when recounting stories, lost track of time, lost motivation and eventually lost the will to carry on. It was a devastating condition to witness and though the family tried to treat Gram with love through the end it was confusing and frustrating nonetheless.
So naturally, when the opportunity arose to experience the dementia simulation, I jumped at it.
Allenson was waiting for me in an empty room at the Residence at Otter Creek’s Middlebury facility with several chairs and a table with a bunch of props on it. Julie Fuller, a staff LNP who specializes in dementia care, was there too, observing the experience for the first time and curious how someone in my position would respond.
I sat in one of the chairs and listened as Allenson explained the routine. First, she handed me a small rubber rectangle that was flat on one side and had spikes sticking out of the other side. I was to place it inside my shoe — spike side facing my foot. This spikey insole was meant to distract in a similar manner as everyday foot pain, neuropathy or arthritis often does for elderly people. Ouch.
Next, I was given a pair of large cotton gloves. According to a handout Allenson gives at each of these simulations, arthritis is part of daily life for up to 80 percent of the population over the age of 65. Dexterity is often compromised, as is feeling and function.
Then came the glasses. As someone who has never had trouble seeing (or even been to the eye doctor) putting on a pair of oversized glasses painted on the inside with dark purple nail polish almost made me instantly panic. I strained to see anything through the brush strokes in the paint and realized I could only make out rough shapes rather than defined objects. But again Allenson’s handout said 75 percent of people over 65 have a visual impairment of some kind.
To top it off, Allenson told me she had a recording of voices talking that she would be playing through headphones I would wear through the rest of the simulation. She would put the headphones on and then we would begin.
Before she hit play she handed me a medium-size tote bag and told me this was my hoarding bag and that for the rest of the demonstration she would refer to me as Mrs. Smith. People suffering from dementia have a tendency to collect items that they feel they might need again and hoard them for the future. Only they can’t remember exactly what they were and lack the organization to keep them straight.
Allenson hit play on the recording and suddenly it sounded like I was in the middle of a large and loud crowd. But before I could settle into that she started yelling at me:
“Mrs. Smith, hi, how are you? How are you today, Mrs. Smith? Are you ready to go? Let’s go, stand up, Mrs. Smith, and let’s go over here. On our way, Mrs. Smith, can you find your keys in that purse of yours? Oh, and while you’re at it there’s a deck of cards in there and I need the queen of hearts. Find the queen of hearts I really need that.
“Please hurry and find you keys, Mrs. Smith. Oh, Mrs. Smith, I’ll also need you to find the yellow string in there and tie it in a knot. A nice tight knot, please, Mrs. Smith. Make sure it’s a good knot that’s tight. Have you found your keys yet, Mrs. Smith? Come on, we’re getting late. Can you walk any faster, Mrs. Smith, we’re going to be late. Where is the queen of hearts, Mrs. Smith? I thought I asked you to find the queen of hearts! Mrs. Smith, your keys! Have you not yet found your keys in that purse yet. Gee, Mrs. Smith, I need you to hurry up and find those keys…”
And on it went! Meanwhile I was fumbling around in the hoarding bag, frustrated by the scattered deck of cards but unable to locate the keys (if they were even in there) or the queen of hearts. I did manage to find the string and tied it in a knot, but caught the end of one of the oversized gloves and suddenly had my finger tied into the knot, which did not help matters. My foot was starting to tingle with the spikey insole in it and I was starting to feel dizzy from the concentration it took to ignore the voices in my ears and obstructed view while trying to listen as hard as I could to the directions. I admit that I stopped moving at one point and after I found the string I gave up on the queen of hearts or the car keys. Focus on one thing and get it done, I told myself, then move on.
Simulation, success.
Within about a minute I had developed one of the most common coping strategies that people with dementia turn to and had made a choice about what tasks I was not going to be able to complete and which I could focus on. It was frustrating and annoying and for me, of course, what I wanted to do was tear off the glasses, or the gloves or the headphones, pull the annoying spikes out of my shoe and go through that scattered bag and add a little order!
But I knew that for me it was just a minute. For me they were just gloves, just glasses and just headphones that could (and would) come off and leave me functional again.
For a person with dementia, it’s not so easy.
“Until it’s actually happening to you, it’s hard to really understand what could be so overwhelming and hard,” said Allenson. “The simulation is a powerful tool for helping people understand the situation. As a caregiver, it really helps you pare down and think about what needs to be communicated.”
Fuller agrees and says the simulations have helped change the community around the Residence for the better.
“It absolutely changes the experiences people have with others and helps us understand what they’re going through,” she said.
The caregivers gain a better understanding of what residents who have dementia might be capable of absorbing and responding to at any given time. Allenson says dementia patients really only absorb one in about four words and it’s generally the first and last words of the sentence. She says knowledge like that, in addition to this simulation, helps caregivers choose their words carefully and act more slowly with dementia patients. They reinforce a more simple message with other forms of communication like gentle touch to help reinforce a message, rather than repeating words over and over.
   COURTNEY ALLENSON, RESIDENT engagement director at the Residence at Otter Creek retirement community, explains how people with dementia can’t absorb all the information thrown at them, so caregivers need to choose their words carefully and act with extra forethought. 
The Residence offers the dementia simulation to the public on the third Thursday of every month during arranged events. Participants are set up with the kit and walk through the routine with Allenson or someone else from the Residence staff just as I was. Family members, caretakers, friends, colleagues or peers can participate and Allenson says just about anyone could benefit from the exposure.
The exercise is also part of a greater training program for dementia offered to nurses and other caretakers through the Residence at Otter Creek.
Most of the programs were developed by Joshua Freitas, Reflections and Engagement manager with LCB, the company that owns and manages the Residence at Otter Creek. Freitas is considered an expert on dementia care and is the author of “The Dementia Concept,” a manual for how to improve the lives of those living with dementia. With LCB, Freitas travels to the company’s various locations and trains people like Allenson who can continue the programs he builds within the individual residences.
The goal, of course, is to educate people like me — who maybe haven’t paused to really consider the many compounding challenges that someone with dementia would be facing — about how to extend an extra bit of compassion and love and sympathy to other people living different realities.

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