Living with Dementia: A Caregiver’s Journey and Commitment to Educating

Saline resident Jim Mangi has been on the road to dementia for 16 years as a caregiver for his wife, Kathleen. After caring for her at home as primary carer for over a decade, Jim moved her to a memory care facility in 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 with Kathleen and his intense interest in understanding the disease and educating others puts him in a unique position to speak about it.

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

In his educational work, Jim encounters many people concerned about the genetic risk factor for Alzheimer’s disease. 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 doesn’t have a family history of Alzheimer’s, that doesn’t significantly reduce their risk.

“Disease is almost random, but not completely random,” says Jim. “We don’t yet understand what’s causing it. Brain scans and imaging show the parts of the brain where proteins clump together and kill the brain. But scientists have not yet understood why this happens.

As for the prevalence of Alzheimer’s disease, 2% of the US population is diagnosed with the disease.

“But the numbers are increasing 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 disease. A third of people over 85 have it. Life expectancy is about ten years after the onset of symptoms, but research shows that damage can begin ten or more years before symptoms appear.

When lay caregivers are taken into account, about 5% of the US population struggles with the disease. Too often, he finds family members ill-equipped to deal with such a devastating disease.

“We almost always start out being absolutely ignorant,” says Jim. “We don’t get any training on how to handle this. It scares us. »

Mangi advises family members to educate themselves about the disease, starting with the fact that the person with Alzheimer’s disease loses their short-term memory before their long-term memory. “It doesn’t work like it used to, and it doesn’t come back,” he says.

“They’re not picky,” says Jim. “It’s a biological problem. No amount of insistence will change biology. They do 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 to clump together. As the damage spreads, the cells lose their ability to do their job and eventually die, causing irreversible changes in the brain.

So what can we do when our loved one’s brain is deteriorating?

“We have a mantra when caring for someone with dementia,” says Jim. “Follow the flow.'”

For example, Jim recounts how Kathleen grew up in New York State and spent a few summers with her aunt. After moving to Michigan, they often drove around, enjoying the scenic countryside. As the dementia set in, Kathleen would occasionally point out the window: “There’s my Aunt Patty’s house.

Jim learned to go with the flow. “Well, it’s a beautiful place. I’m not sure if she’s home right now. Maybe we can stop and see her on the way home.

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

Hallucinations usually occur as dementia progresses, such as a sight, sound, sensation, aroma, or taste that does not exist. Jim recounts that once, while visiting Kathleen in Brecon, she became concerned about the roof of another building. He asked her why. She pointed to the window on the roof and explained that she was afraid that the men would fix it, that they would fall.

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

“Correcting her confuses her and disrespects her,” says Jim. “These men are in her world, and just as real as you and I are to each other. We have no way of convincing her otherwise. We can’t bring her into our world. And we can’t fit into her world perfectly because we don’t fully understand what she’s going through, all we can do is respect it.

Life expectancy after the onset of Alzheimer’s symptoms is 10 to 12 years. Kathleen was diagnosed 16 years ago. “She’s always been a great performer,” Jim says, smiling fondly. Photo by Doug Marrin.

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

Always eager to do more, Jim got involved in the national movement, Dementia Friendly America. The idea is to make communities more liveable for people with dementia. He brings it to Saline.

“It’s mostly about educating the public about the challenges that dementia creates for someone and finding ways to help them,” says Jim. “Be patient. Speak slowly. Ask one simple question at a time. Don’t tell them which aisle the thing is in. Take them there. This principle applies to all sectors of the community, designing the space to make it more navigable for someone with dementia.

Jim has partnered with Emagine Theater in Saline and a slew of popcorn sponsors to create a dementia-friendly cinematic experience. The first was on March 8, featuring “A funny thing happened on the way to the forum”.

All 55 attendees got their tickets and a goody bag at a designated welcome table instead of the automated kiosks. Inside the theater, a buffet has been set up. Attendance prizes were drawn. The show volume was lower than usual while the lights were on more than usual. Volunteers helped patrons get around during the show as needed. The film event was a huge success.

One comment that stuck with Jim is how visible a participant felt. For a few hours he wasn’t invisible, and it felt really good.

“We’re trying to get that stigma lifted because there’s absolutely no reason for anyone to feel ashamed in any way,” Jim says. “It’s a disease, not a shame.”

Two other films adapted to dementia are programmed at Emagine. “Singing in the Rain” on April 12 and “An American in Paris” on May 10.

For more information or to book a ticket, contact Jim Mangi at [email protected]

For more information about the Alzheimer’s Association, including local resources, visit https://www.alz.org/

For more information on saline suitable for dementia, visit https://www.dfsaline.org/