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5 siblings worry about developing Alzheimer’s like parents

February 2, 2019

GREELEY, Colo. (AP) — The living room lights flick on, drawing Julianna Nelson awake in the early hours of the morning.

From her spot snuggled beside her daughters on the pull-out couch, she can hear her grandmother. She’s angry.

Who are you? What are you doing, her grandmother demands to know, in my house?

Nelson springs out of bed, confused. Grandma, she says, it’s me.

What do you mean?

I’m going to stay with you, Nelson says.

Her grandmother’s behavior began changing before this night. There were times when she would forget where she was driving. She was once in a car crash. It’s why Nelson and her daughters were there to help.

And now, on this night in the late 1990s, her grandmother doesn’t recognize Nelson. The family doesn’t know yet, but she has Alzheimer’s disease.

Her grandmother is neither the first nor the last in this Colorado family to suffer from the degenerative brain disorder. Five family members across at least two generations of the family have had Alzheimer’s disease. And a sixth family member, Nelson’s great-grandmother, was diagnosed with what was called “forgetfulness” before her death in 1976.

Alzheimer’s eats away at memories and thinking skills, robbing a person of who they are as they eventually lose the ability to speak, swallow or move on their own. The disease has mystified doctors and scientists who have yet to find a specific cause or a cure.

Now both of Nelson’s parents are living with the disease, leaving her and her four siblings wondering: Am I next?

Double diagnoses

Nelson’s father was the first of her parents to be diagnosed with Alzheimer’s. Her mother’s diagnosis followed a year later in 2016. Then her grandmother, after living more than a decade with the disease, died in 2017.

Nelson’s parents, Tony and Josie Sanchez, each are in the early stages of Alzheimer’s.

Tony, 73, still drives. Josie, 75, lives in a nursing home, in part because of other health problems and the need for dialysis several times a week.

It’s fairly rare to have two parents with Alzheimer’s disease at the same time, doctors and advocates say. But in recent years, high-profile couples, including Denver Broncos owner Pat Bowlen and his wife, Annabel, have made headlines for their dual diagnoses.

“Obviously, a family that has two parents with Alzheimer’s disease is facing this kind of problem in a double way,” Huntington Potter, director of the Rocky Mountain Alzheimer’s Disease Center, says of the emotional and financial toll that the disorder has on families. “It’s bad enough having one parent.”

Both of Nelson’s parents watched one of their own parents succumb to Alzheimer’s.

Tony feels closer to his father, knowing they had the same disease. And while her mother may have forgotten loved ones in her final years, Josie says, her death was peaceful.

“She just laid down and died,” she says. “It wasn’t tragic. It wasn’t awful.”

Now they worry about what their own diagnoses mean for their five children.

Tony believes he knows which of their children will get Alzheimer’s. It will be Nelson, he says, because she’s the most like him.

“I do not want my children to have to get this at all,” Josie says.

Known (and unknown) genetic links

There is still much doctors and researchers don’t know about Alzheimer’s.

Scientists have been unable to pinpoint an exact cause of the disease. However, they have determined that lifestyle factors and genetics play a role.

Age is one of the biggest risk factors. Those who reach the age of 85 have about a 50 percent chance of having Alzheimer’s, Potter says.

“It is the disease of the aged,” he says.

Alzheimer’s is a diagnosis with no cure. It’s likely there won’t be one for decades, as even treatments designed merely to slow the progression of the disease largely have failed clinical trials. At best, a new treatment to slow the disease will be brought to market in about five years, Potter says.

An absolute cure for Alzheimer’s, he says, is “too optimistic.”

It’s also unclear how Alzheimer’s passes from one family member to another and how likely family members are to develop symptoms.

“We don’t fully understand why,” says Alison Quinn, a clinical pharmacy specialist with Kaiser Permanente Colorado. “There’s a potential genetic risk, genetic link. We don’t know about all of the different genes at play.”

One known genetic risk factor is a variation of the apolipoprotein E, or APOE, gene. The APOE protein, which carries cholesterol, is found in cells throughout the brain and in blood.

The gene comes in different forms, including ApoE4, which is known to increase the risk for Alzheimer’s.

A person who has two copies of the gene, one from each parent, has a twelvefold increase in the risk of developing the disease, Potter says.

Yet while it is a risk factor, having a copy of the ApoE4 gene does not mean a person will develop Alzheimer’s. Likewise, a person can get the disease without having the gene.

Doctors often don’t perform genetic tests for Alzheimer’s because “we just don’t find that it’s very predictive,” says Dr. Jonathan Woodcock, clinical director of the Rocky Mountain Alzheimer’s Disease Center at the University of Colorado’s Anschutz Medical Campus.

A looming disease

In 2016, Josie gave her son, Jason, an over-the-counter 23andMe genetic testing kit as a birthday present.

When he got the kit, Jason decided to use it to also test for health risks. Among the test options: late-onset Alzheimer’s disease.

“I don’t know if I’d want to do that,” says his eldest sister, Michelle Raimer, 50.

The siblings don’t need something to tell them they have Alzheimer’s disease years before there’s even a hint of it appearing, she says.

“What different would we do with our lives?” Raimer asks.

Already, Alzheimer’s disease looms over the siblings.

Nelson, 48, says she believes three of the five siblings ultimately will be diagnosed with the disease. She has told her kids to not be surprised if, eventually, some of them start to get sick too.

Raimer catches herself forgetting a word or her train of thought, and it reminds her of her mom.

“But I do honestly think, you know, when you get older, you do lose capacity of memory . so I don’t know if it’s my own excuses I’m making or if I am having symptoms,” she says. “I don’t want to think about it, you know, at this time.”

Cindee Gierhart, the youngest, has started thinking about putting money away to help pay for long-term care. She is 45.

Jason, 46, knows the DNA test can’t predict or render an Alzheimer’s diagnosis, but he was curious.

So he took the test. The results show Jason has at least one variant of the ApoE4 gene, meaning he has a higher risk of developing Alzheimer’s disease.

The results haven’t changed how he lives his life — so far. But knowing them, Jason says, gives him an opportunity to prepare while the family hopes doctors find a way to slow the disease’s progression.

“Just like I tell my dad, we’re always hoping for the best and preparing for the worst,” Jason says.

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