WEST FARGO — As a fourth grade teacher at West Fargo's Eastwood Elementary School, Tyler DeMoe is in the business of answering questions from inquisitive 9- and 10-year-olds everyday. But he deals with a big question he says "no one can answer."
If you could find out that you had a genetic mutation that would most definitely cause a devastating illness that you could do nothing to stop and would kill you in the prime of life, would you want to find out?
It’s a question Tyler and most of his family have had to ponder for more than 15 years, following the first indications that early-onset Alzheimer’s was about to change their lives forever.
In 2004, two of Tyler’s uncles, Brian DeMoe and Doug DeMoe, were diagnosed with early-onset Alzheimer’s disease, a brain disease which robs victims as young as 30 of their memory and often kills before the age of 60. It makes up only about one to two percent of all cases of Alzheimer’s disease. A short time later, Tyler’s aunt, Lori DeMoe McIntyre, was also diagnosed.
“It was rough,” Tyler said while sitting at one of his students' desks. “All of my cousins , our whole family — we’re all close, tight-knit, so watching their mom and dads slip away was hard.”
Brian, Doug and Lori all died in their mid-50s.
It didn’t come completely out of the blue. Tyler’s grandfather, Galen “Moe” DeMoe, died at the age of 58 in 1989. At the time, they weren’t sure what caused his death, but they would learn later it was early-onset Alzheimer’s — something Galen’s mother, Ruth “Wanda” Hubbard, also succumbed to.
All six of Galen and Gail DeMoe’s children were tested to see if they inherited the genetic mutation that 100% of the time leads to early-onset Alzheimer's. The results were devastating. Even though the odds each child would inherit the mutation were just 50%, five out of the six DeMoes got the bad news. Not just Brian, Lori and Doug, but Tyler’s father, Dean, and another uncle, Jamie. Only Tyler’s Aunt Karla was spared.
Karla DeMoe Hornstein told The Forum in 2015 that she was particularly devastated with Dean’s diagnosis, since unlike her other siblings, there was simply no indication he had any memory loss. Dean was even set to help Karla get their siblings’ affairs in order.
"It was a shock. We didn't see it with him. That was the most horrid day of my life. We were forced to remove him from the power of attorney," she said.
Tyler says while his dad is doing pretty well these days — at 57 he’s outlived Brian, Doug and Lori and even continues to work — signs of Alzheimer’s are there. He forgets things and frequently repeats himself.
“To the average person, you wouldn’t even know, but those of us who are closer to him see it,” Tyler said.
Tyler was concerned enough a couple of years ago that he left his teaching job in Phoenix to move to Tioga, where his dad was working in the oil fields.
“I enjoyed my job a lot, but I started thinking about the time spent away from my dad. How much time does he have left?” he said. “I just thought I should be here.”
As loved ones watch out for and care for Dean and Jamie, the focus starts to shift to the next generation of DeMoe offspring. Between them Brian, Karla, Lori, Doug, Dean and Jamie DeMoe had 13 children. Because Karla does not have the faulty gene, her two children don’t, either. That leaves 11 DeMoes in Tyler’s generation to ask, “Do we have the gene and if we do, do we want to find out about it?”
For now, Tyler’s answer is “no.”
Tyler said four or five of his cousins have found out for themselves. One cousin is positive, the rest have been negative.
Doctors know who in the DeMoe family has the gene because many of them are taking part in a world-renowned Alzheimer’s study in Pittsburgh, Tyler said.
For the past nine years, Tyler has made a trip almost every year to be studied, which includes getting PET scans and spinal taps. Researchers also look at how much plaque has built up in Tyler’s brain and give him cognitive performance tests.
“I think I’d rather have the spinal tap. Those brain tests wear me out,” he said with a laugh.
He said he could ask the doctors today to reveal to him whether he has the gene and they'd get him on the next flight to break the news one way or the other. But Tyler said he goes back and forth on whether to find out.
In her book “The Inheritance,” written about the DeMoe family, author Niki Kapsambelis writes, Tyler’s mother Deb “begged McKenna (Tyler’s sister) and Tyler to stay unaware. Having felt blindsided by Dean’s diagnosis, she wanted them to forget about the possibility of inheriting the mutation and live their lives as normally as possible.”
Tyler seems to be taking his mother’s advice.
“Some days I think about it and I assume I’ll have it, so I try to knock everything out, not like a bucket list sort of thing, but just try to make every day the best, make some good memories, leave a positive impact like with teaching the kids. That's kind of what my mantra is," he said.
Then there are other days and other thoughts.
“I think ‘What if I don’t have it and and I'm doing stuff I shouldn't probably be doing, wasting money on this trip or doing this.' I kind of go back and forth."
Those are all normal questions, according to genetic counselors who say you don’t really know what you’d want to know unless it happens to you. And in the case of early-onset Alzheimer's, only about 5,000 people around the world are affected.
Pierre Tariot, a geriatric psychiatrist and director of the Banner Alzheimer’s Institute, told the Arizona Republic fewer than half the people want to know.
“It’s a very, very personal decision,” he said.
Tariot said in a study he’s conducting in Colombia, the standard response is not to know, but he thinks that could change if and when new preventive therapies become available.
Tyler said while he tries to enjoy and embrace everyday, he also knows what could happen to him and how important it is to be prepared by getting life insurance and end of life documents in order.
“It kind of pushes all of that to the forefront much earlier than you would expect at my age,” he said.
Tyler said he might change his mind and decide to find out whether he has the mutation if he gets married and has children. But for now, he says he’s in a good place.
He thinks it’s worthwhile to continue being part of the early-onset Alzheimer's study whether he finds out his diagnosis or not.
“They can do whatever they want with me if it’s going somewhere or possibly leading to a cure,” he said.
Tyler also seems to be living by the words his dad told doctors and his wife when he first heard of his own diagnosis: “It’s not what you’re dealt in life, it’s how you deal with it.”