A first-person look at dementia

With Ozaukee County’s population being one of the oldest in Wisconsin, and getting older, the specter of dementia is a growing concern for many local residents and their families.

To help teach family members, neighbors and other caregivers the realities of dementia, the Ozaukee County Aging and Disability Resource Center is sponsoring a series of “Dementia Live” workshops where people can experience what it’s like to suffer from symptoms of dementia.

“It’s an empathy-building experience,” said Sarah Prohuska, an ADRC dementia care specialist, who leads the workshops. “It’s designed to help family or friends understand what dementia is like, to help them improve their interaction with people who might be experiencing dementia.”

With 20% of the county already over 65, and growing, dementia is also on the rise.

According to the state Department of Health Services, there were 2,096 people in Ozaukee County suffering from dementia in 2020, up from 1,588 in 2015. That number is expected to nearly double  by 2024 to 3,715.

Prohuska held a preview of Dementia Live last week at Village Pointe Commons, a senior living campus in Grafton, in which three volunteers were put through their paces to learn what it was like to suffer from dementia.

Florence Van Cleave and Barb Sualey, both residents at Village Pointe Commons, and Kathy, who asked that her last name not be used, were outfitted with goggles that restricted their vision, headphones that constantly produced background sounds and occasionally startling outbursts of noise, and gloves that limited their dexterity.

Prohuska gave each of them, in rapid fire succession, a list of tasks to perform in 10 minutes, such as spell a word using Scrabble tiles, dial a cell phone, button a shirt and hang it up, write the name of three family members on a notepad, use a calculator or count out 37 cents from a coin purse.

When the trio completed, or tried to, their tasks, Prohuska interviewed them and asked how the exercise made them feel.

Inadequate, irritated, anxious, overwhelmed, were common responses.

“I’m glad it’s over,” Van Cleave said.

“I did all (the tasks) I could remember,” Sualey said.

Prohuska explained how the exercise showed what it’s like to have dementia.

“The directions were given to you rapidly on purpose to show how our normal rate of speech is too fast” for a person with dementia, she said.

“Take three seconds between tasks. If there’s a lot going on they may only pick up six out of every 10 words and as the list of instructions) progresses, only three or four words. I gave you way too much information.”

Because the three women couldn’t remember all the instructions, “there was lots of pacing and wandering around. You started to do what others were doing, even if it was something I didn’t tell you to do.”

The gloves simulated what it’s like to lose motor skills, like buttoning a button, signing your name, using a pen or pressing the buttons on a cell phone.

“That can be really challenging for them. And that leads to frustration,” Prohuska said. “When that happens they might just give up.”

As for the goggles they made things darker and restricted peripheral vision.

Older adults need more light and someone with dementia needs 60 times more light than younger people, Prohuska said.

There also are color contrast issues and the lack of peripheral vision occurs in the early to middle stages of dementia while tunnel vision occurs in later stages. Vision issues lead to more falls and they’re more easily startled.

Prohuska said the person with dementia is not in need of an eye exam.

“It’s not happening to their eyes. It’s happening in their brains,” she said.

The background noise from the headphones also shows how difficult it is for the person with dementia to tune out noise going on around them, especially when there are crashes, sirens or loud conversations.

“They lose the ability to tune out a lot of that noise going on around them and increases their startle response,” Prohuska said. “It sounds like it’s happening right there even though it’s outside. They can’t follow a conversation because everything is loud.”

Hearing aids can even make things worse, she said.

“This would have been immensely helpful to me when I was going through that with my husband,” Sualey, whose husband, Larry, had Alzheimer’s disease and died four years ago, said of the session.

“I found this immensely helpful,” said Van Cleave, who cared for her neighbors, a husband and wife, who suffered from dementia and have since died.

“You knew there was a stopping point” to the exercise, Prohuska said.

“Unfortunately, people with dementia experience these feelings every day for much of their day. They are in a situation they don’t have control over because of what’s going on in their brains.”

Dementia Live will be held from 9 a.m. to noon on Monday, May 13, at Village Pointe Commons, 101 Walnut Circle, Grafton.

The time will be divided into 30-minute slots, with up to four people assigned to each slot.

The deadline to register is Wednesday, May 8. Register by contacting Amy Jacobson at (262) 894-5394 or at ajacobson@capricommunities.com.

Future Dementia Live sessions will be held on July 24 in Mequon and in November at Lasata Senior Living Campus in Cedarburg.

For more information, visit the dementia care specialist website at https://www.co.ozaukee.wi.us/1206/Dementia-Care-Specialist.