Experiment in empathy: Discovering what it’s like to live with dementia


Monitor staff

Published: 07-11-2023 7:01 PM

Clouded vision. Constrained fingers. Muted sounds of static, laughter and indistinct voices.

Attendees of a free training program at Granite Ledges of Concord altered their senses to experience a taste of life with dementia. The event, organized for caretakers and families of dementia patients, simulated common symptoms of the syndrome.

Granite Ledges, a private senior living health care facility, has hosted dementia experiences for almost two years.

“We started hosting them as a training for our staff to give them the tools and empathy to help support the residents in the best way,” said Lindsay Gonzales, director of community relations at the facility.

Several patients and staff members attended the most recent outreach session. They entered a room off the main lobby and perched on plush armchairs as Kathy Turcotte, the dementia program director, prepared them for the experience.

Turcotte passed around props that simulated different effects of the incurable disease. She called the items “disabilities.”

Bags of dry rice inside shoes illustrated impaired balance and gait. Two layers of gloves – one pair of rubber gloves with kernels of corn in the fingers and another pair of thick gardening gloves layered on top with fingers taped together – simulated a lack of mobility. Earplugs dampened hearing, and sunglasses with blurred lenses gave the experience of impaired vision.

As attendees donned their disabilities, nervous laughter filled the room.

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“That is not comfortable, oh my gosh!” exclaimed Shannon Lepage, a recreation assistant at Granite Ledges, as she tied her shoes.

“I do not like that,” said Mary Patten, a licensed nursing assistant, as she put on the darkened glasses.

Turcotte explained the experiment. Attendees would complete a series of tasks, including writing a check, sorting silverware, putting on clothes, organizing pills and using a walker. The tasks simulated the daily household activities that become challenging with the onset of dementia.

The group then shuffled down a hallway toward the site of their experiment, bumping into counters and holding the wall for support as they walked.

They entered a dark room. Recordings of laughter and voices blared from a portable speaker in the corner. With no further instruction, Turcotte told them to find a station and begin.

John Leggett, a resident at Granite Ledges, sat at a table with a pile of clothing. Although he had been instructed to get dressed, he instead began to fold the clothes, disoriented by his altered senses. Later, standing at the silverware station, he said, “I don’t have a clue. I can’t see anything.”

After the experience, Leggett said he had felt most frustrated by his impaired vision. “Blindness was so disabling that everything else was like, ‘Who cares?’ ” he said. “It’s an interesting experience to be deprived of something.”

Lepage agreed. “You don’t realize how much of their senses go,” she said of dementia patients. “You take yours for granted.”

For some, sorting pills and writing checks, the tasks that tested fine motor skills, were the most challenging. Small avalanches of plastic pills fell to the ground each time someone attempted the task.

Others were distracted by extra stations meant to draw their attention away from the assigned activities, like coloring books and playing cards. Lepage sat at a table with a coloring book and crayons and scribbled outside the lines, unable to see the page in front of her.

Turcotte flicked the lights on and off sporadically throughout the 30-minute experience. The sudden bursts of light startled the attendees, often causing them to drop what they were holding or bump into walls. Patten said it made her dizzy. Turcotte explained that the distractions were meant to induce the overstimulation and paranoia that dementia patients often feel.

Before the experience, Turcotte had asked attendees the first words that came to mind when they thought of dementia. Sad and scary were the overwhelming responses. In a group conversation after the experience, she asked how their perspectives had changed.

“You’re losing, little by little, a sense, how to eat, how to go to the bathroom by yourself,” said Lepage. “And now you’re grumpy, you’re getting mad, your senses are overloaded.”

Turcotte nodded.

“The patients know that they don’t know what’s going on or what they’re supposed to do, but they’re aware enough that they want to hide it from you,” she said. “They just want to disappear.”

Leggett offered his new perspective.

“Some of what the patients experience daily must be rather like a bad dream,” he said. “It’s a lot like being lost.”

Turcotte explained that feeling lost is common among dementia patients.

“Imagine you go to bed tonight, you wake up and you don’t know where the heck you are,” she said. “You don’t know where you are, what you’re supposed to do, you don’t have any money, you don’t know who to call, you can’t communicate with anybody. That’s kind of what it’s like for our residents.”

The job of caretakers and family members, Turcotte said, is “to give patients their dignity and help them feel human.”

“They’re still them, no matter how far along in the disease they are. We just have to get in there and find them.”