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Dementia Live changes sympathy to empathy

Program helps first responders learn how to interact with people with Alzheimer’s disease

NORTH CHICAGO – It begins as a low hum. Gradually, however, the voices grow to a dull roar until they almost block out the commands being called above them. 

“Sort the Skittles into groups of three.”

It sounds like a simple command, but the bulky, rubber garden gloves the participants are wearing make it difficult to handle the tiny candies. The glasses make it hard to see, too: The specially designed glasses reduce the participants’ field of vision to a murky haze. 

Still the voices roar. Then the commands come more rapidly.

“Draw a circle on your pad.” “Write your name.” “Sort your [playing] cards by colors.”

The Dementia Live Experience at the North Chicago Fire Station 2 lasts less than 10 minutes, but it is enough to instill the overwhelming sense of frustration and confusion people suffering from dementia or Alzheimer’s disease feel on a regular basis. 

Mike Steiner is the owner of Right at Home, an in-home care and assistance company in Grayslake. Right at Home specializes in providing assistance for people with Alzheimer’s and other forms of dementia among other services. Steiner also is a founder of the Dementia Friendly Community Coalition.

After witnessing firsthand the stress family members face when caring for a loved one with Alzheimer’s, he decided to find a way to help ease that stress and got certified to become a Dementia Live Experience coach. 

“It’s enlightening to folks,” Steiner said. “They say it changes sympathy to empathy because now you truly understand.”

Steiner’s workshop is composed of two parts: the Dementia Live Experience, followed by a presentation on how to approach and interact with people with dementia.

“I tell people the brain is changing,” he said. “You’re not going to be able to pull them back into your world. So you have to change yourself to get into their world. And there are a lot of tools out there and instructions and ways to deal with that and get into their world.”

Steiner first rolled out his workshop to the police and fire departments of Grayslake, followed by the Grayslake library and other local businesses. When Mayor Rhett Taylor heard about the program, he got involved as well and worked to create Resolution 860, declaring Grayslake the first dementia-friendly community in Illinois. 

Word is spreading about Steiner’s work, and North Chicago is the next community to get involved. 

Reid Mammoser is the medical officer for the North Chicago Fire Station 2 and met Steiner after he discovered his mother-in-law was diagnosed with Alzheimer’s. The Dementia Live Experience for him was “eye-opening.”

“We [first responders] encounter people with Alzheimer’s and dementia on a daily basis, so I think it’ll help us understand what they’re going through and be able to give them the best care we can possibly give them,” he said. 

Mammoser is working to coordinate additional workshops for first responders from other cities. The Waukegan Fire Department already has expressed an interest in hosting a workshop with Steiner. 

Julie Pettinato is an individual, couple and family therapist based in Grayslake and works with Steiner in these workshops. In her presentation, she emphasizes several ways to interact with and redirect a person with Alzheimer’s or dementia, particularly in situations where the person may be agitated, confused, frustrated or even physically confrontational.

The key phrase, she says, is “Tell me about it.” 

Alzheimer’s is the sixth-leading cause of death in the United States. The risk factor for developing the disease is aging, which means everyone is at risk – particularly those older than 65. As the disease progresses, it dismantles the part of the brain that can create short-term memories, which can cause people to tell the same story over and over again – or ask the same question multiple times. 

Rather than insisting you’ve heard a particular story already, Pettinato suggests replying with “Tell me about it.” 

This way, Steiner adds, confrontation, confusion or agitation is avoided and the person feels he or she is contributing to the conversation rather than being a burden.

“What’ll happen is many do understand that they should remember, but they don’t,” he said. “So because of that, they will feel ashamed and they’ll just clam up and be quiet because they know their brain isn’t working right. Or they’ll get angry and argue and it’s a no-win situation.”

According to Pettinato’s statistics, collected from the Pew Research Center, one in nine people 65 or older has Alzheimer’s today. Given that every day 10,000 people turn 65, Alzheimer’s is a rapidly growing problem in the United States. Pettinato adds that “by 2025, $1 in every $6 for Medicare will be spent on the care of some type of dementia.”

Until a cure can be found – or at least a breakthrough to slow the progress of dementia – Steiner said he plans to continue his workshops and hopes to create more dementia-friendly communities throughout Lake County. 

“It’s not just helping the person with dementia in this case,” he said. “It’s helping the family. It’s helping the family members be advocates to help their family members as well as others.”

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