Living with Dementia: One Caregiver’s Journey and Commitment to Educate


The Memory Support Center is a licensed specialized community located on the campus of Brecon Village in a quiet residential neighborhood close to downtown Saline. Photo by Doug Marrin.

Saline resident Jim Mangi has been on the dementia journey for 16 years as a caregiver for his wife, Kathleen. After caring for her at home as primary caregiver for over a decade, Jim moved her into memory care at Brecon Village in Saline to ensure her safety and well-being.

Jim also volunteers for the Alzheimer’s Association, teaching free classes to the public. His experience caring for Kathleen and intense interest to understand the disease and instruct others places him in a unique position to speak on it.

Delineating the difference between Alzheimer’s and dementia, Jim explains, “Dementia is a general term that means having so much memory difficulty and other thinking problems that it interferes with daily life. Dementia is a general term for a range of disorders. Alzheimer’s disease accounts for around 70% of all dementia cases.”

In his educational work, Jim meets many people concerned about the genetic risk factor for Alzheimer’s. He explains that if a family member had the disease, there is only a slight increase in risk. But on the other hand, if a person has no family history of Alzheimer’s, it doesn’t markedly reduce their risk.

“The disease is almost random but not quite completely random,” says Jim. “We don’t yet understand what causes it. Brain scans and imaging show the parts of the brain where proteins are clumping and killing the brain. But scientists haven’t yet figured out why it happens.”

As to the prevalence of Alzheimer’s, 2% of the U.S. population is diagnosed with the condition.

“But the numbers are going up because the baby boom generation is getting older,” says Jim. “It usually affects people over 65.”

He explains that ten percent of people over 65 have Alzheimer’s. A third of those over 85 have it. Life expectancy is around ten years after symptoms appear, but research shows the damage can begin ten or more years before symptoms appear.

Once non-professional caregivers are factored in, about 5% of the U.S. population is dealing with the condition. Too often, he finds family members ill-equipped to face such a devastating disease.

“We almost always start out being absolutely clueless,” says Jim. “We get no training in how to deal with this. It scares the hell out of us.”

Mangi advises family members to learn about the disease, beginning with the fact the person with Alzheimer’s loses their short-term memory before their long-term. “It doesn’t work as it once did, and it’s not coming back,” he says.

“They’re not being difficult,” says Jim. “It’s a biological problem. No amount of insistence is going to change biology. They’re doing the best they can.”

According to the Alzheimer’s Association, the brain’s 100 billion nerve cells (neurons) connect to form specialized functions such as thinking, learning, and remembering. Alzheimer’s disease is the formation of abnormal structures called plaques and tangles that damage and kill nerve cells. These structures begin clumping. As damage spreads, cells lose their ability to do their jobs and eventually die, causing irreversible changes in the brain.

So, what can we do as our loved one’s brain degrades?

“We have a mantra when caring for someone with dementia,” says Jim. “Just ‘go with the flow.’”

For example, Jim tells how Kathleen grew up in New York state and spent some summers at her aunt’s house. After moving to Michigan, they often drove around, enjoying the scenic countryside. As dementia set in, Kathleen occasionally pointed out the window, “There’s my Aunt Patty’s house.”

Jim learned to go with the flow. “Well, that is a nice place. I’m not sure she’s home right now. Maybe we can stop in and see her on the way back.”

“You play along like it’s real,” explains Jim, “because that’s what’s real to her.”

Hallucinations commonly occur as dementia advances, such as a vision, sound, feeling, aroma, or taste that isn’t there. Jim tells of once, while visiting Kathleen at Brecon, she became concerned with the roof of another building. He asked her why. She pointed out the window to the roof and explained she was worried about the men fixing it, that they might fall off.

“Okay, I’ll be right back,” Jim told her. He left the room and came right back. “Sweetheart, I called the Saline Safety Department. They assured me that Acme Roofing has an excellent safety record. They said you can relax and enjoy watching them work.”

“To correct her confuses and disrespects her,” explains Jim. “Those men are in her world, and every bit as real as you and I are to each other. There is no way we can convince her otherwise. We can't bring her into our world. And we can't perfectly get into her world because we don't fully understand what she is experiencing. All we can do is respect it.”

Life expectancy after Alzheimer’s symptoms appear is 10-12 years. Kathleen was diagnosed 16 years ago. “She has always been a high achiever,” says Jim, smiling affectionately. Photo by Doug Marrin.

Jim tells of a  friend who hallucinates about bats flying about his bedroom at night. He knows it’s hallucinations, but it’s still frightening and upsetting. But his wife goes along with him and gets out the “Bat Begone” spray, which smells a lot like lavender water. “It works like a charm,” says Jim. “He’s happy because she respected his reality.”

Always wanting to do more, Jim has become involved with the national movement, Dementia Friendly America. The idea is to make communities more easily livable for people with dementia. He is bringing it to Saline.

“It’s primarily educating the public on the difficulties dementia creates for someone and figuring out ways to help them,” explains Jim. “Be patient. Speak slower. Ask one simple question at a time. Don’t tell them which aisle the thing is on. Take them there. This principle applies to every sector of the community, designing space to be more navigable for a person with dementia.”

Jim has partnered with Emagine Theater in Saline and a large popcorn bucketload of sponsors to create a dementia-friendly movie experience. The first was on March 8, featuring “A Funny Thing Happened on the Way to the Forum.”

The 55 attendees got their tickets and a goodie bag at a designated welcome table instead of the automated kiosks. Inside the theater, a buffet was laid out. Door prizes were raffled off. The show’s volume was lower than usual while the lights were up more than usual. Volunteers helped patrons navigate their way around during the show as needed. The movie event was a huge hit.

A comment that has stuck with Jim is how one attendee felt visible. For a couple of hours, he wasn’t invisible, and it felt really good.

“We're trying to get this stigma lifted because there is absolutely no reason that anybody should feel in any way shamed,” says Jim. “It's a disease, not a disgrace.”

Two more dementia-friendly movies are scheduled at Emagine. “Singing in the Rain” on April 12 and “An American in Paris” on May 10.

To learn more or reserve a ticket, contact Jim Mangi at

For more information on the Alzheimer’s Association, including local resources, visit

For more information on Dementia Friendly Saline, visit

I'm interested
I disagree with this
This is unverified