Video: Alzheimer’s offspring confront their own risk

By JoNel Aleccia Health writer
updated 10/13/2008 9:25:24 AM ET 2008-10-13T13:25:24

For adult children of patients with Alzheimer’s disease, the diagnosis can be devastating — and not just because of what it means for their parents.

Along with concerns about caregiving and grief over the loss of the mother or father they knew, there’s another, more private fear: What if I get it, too?

“I think about it all the time,” said Julie Winokur, 44, a videographer from Montclair, N.J., who chronicled her father’s decline into dementia (on this page) and its effects on her family. “It’s a terrifying thing to me.”

But even as scientists say they may be getting closer to predicting who may develop the mind-robbing disorder, thanks to new research into biomarkers, heredity and genetics, many children of people who suffer or died from the disease say they wouldn’t want to know.

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“My feeling is I’d only want to know if there’s something I can do about it,” said Winokur.

Right now, that’s not the case, Alzheimer’s experts concede.  There’s virtually no known cause, no cure and no prevention for the disease that causes memory loss and mental deterioration and affects some 5.2 million people in the U.S. and some 27 million people worldwide.

“I don’t know of anything that has been documented to prevent the onset of this disease,” said Dr. Thomas Bird, a neurologist and Alzheimer's disease researcher at the University of Washington in Seattle. “The advice you get is the advice you’d give to anybody to live a good, healthy lifestyle: Watch your weight, watch your blood pressure, eat a balanced diet.”

Recommendations for ways to predict the disease are even more vague. Perhaps 5 percent of Alzheimer’s cases are caused by a rare genetic mutation responsible for early onset of the disorder that usually strikes after 65. For the rest, scientists have proposed analyzing everything from blood, saliva, skin cells, urine and brain scans to detect early signs of the disorder, with no irrefutable results.

Even the most reliable marker of risk, the apolipoprotein E-e4 gene, known as ApoE4, doesn’t determine for sure whether a person will develop Alzheimer’s. Many people with the gene do get the disease, but many don’t, prompting most experts to advise against screening, Bird said.

That leaves offspring of one or both parents with dementia in limbo, focusing on doing anything they can to stave off Alzheimer’s, even when there’s no clear agreement on what that might be. That can range from working crossword puzzles and gulping antioxidants to engaging in new forms of physical exercise, techniques suggested — but not proven — to prevent the disease.

“We’re being much more vigilant about our exercise,” said Karen Moldt, 54, of the oldest of five siblings in Cary, N.C., who were “shell-shocked” when their father was diagnosed with Alzheimer’s four years ago. “One of my brothers who is right-handed started doing things with his left hand.”

Genetics, heredity boost risk

Still, recent research into genetics and heredity suggests that children like Winokur and Moldt have reason to worry.

Just this summer, Dr. Piero Antuono and a team of scientists at the Medical College of Wisconsin reported that healthy offspring of Alzheimer’s patients who carry the ApoE4 gene show declines in brain function that are detectable long before any clinical symptoms appear.

And last spring, Bird and a team of researchers at the University of Washington revealed that children with two parents who have Alzheimer’s disease are far more likely to get the disease themselves.

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In the study of 111 families in which two parents were diagnosed with Alzheimer’s, more than 22 percent of the adult children also developed the disease. That compares to about 13 percent expected in the general population, according to the national Alzheimer's Association. The risk rose with age, affecting 30 percent of children older than 60 and nearly 42 percent of those older than 70.

“I pretty much though that my odds of getting it had to be higher than anybody walking down the street,” said Gayle Dorman, 63, of Tacoma, Wash., a study participant who lost both parents to Alzheimer’s a decade ago.

Increasingly, families like Dorman’s are confronting what neurologist Dr. Daniel I. Kaufer calls the “double-parent dementia dilemma.”

“The way I convey this to children is that it’s a double whammy,” said Kaufer, who directs the Memory and Cognitive Disorders program at the University of North Carolina School of Medicine. “They have the burden of care and the burden of risk.”

Oh my god, I hope this doesn't happen to me’
Coping with that burden isn’t easy for family members confronting their own future, said Dr. Zoe Lewis, a palliative care specialist and author of a new book, “I Hope They Know: The Essential Handbook on Alzheimer’s Disease and Care.”

“It is literally the collective fear of anyone, anywhere: Oh my god, I hope this doesn’t happen to me,” Lewis said.

As patients watch their parents spiral downward, often over several years or even decades, they can't help but wonder whether that's the fate they face.

"The fear is that you'll lose your mind and you won't be treated well," Lewis explained.

That fear permeates daily life, making children vigilant for signs of dementia, said Dorman. “For me, it’s pretty scary when I forget where I parked my car. I think, ‘Here it is, here I go.’”

Winokur said she quizzes herself constantly, testing to see whether she remembers people’s names and what they were wearing.  

Many children of parents with dementia say they’ve considered confirming their risk by being screened for the ApoE4 gene — and then rejected the idea. “Right now, I don’t know if I’d want to know,” Dorman said.

Others, however, think the information could be valuable. “You could just plan better. If you have a ticking time bomb, you’d want to know, wouldn’t you?” said Mike Sanchez, 37, of Santa Ana, Calif. His 82-year-old father has had Alzheimer’s disease for more than a decade.

Most children of dementia patients are able to put their fear in perspective, said Bird, the University of Washington researcher whose own mother died of Alzheimer's disease.

"I know that I'm at risk for it. Everybody who gets older is at risk. My risk is higher than average," he said. "But I don't feel there's anything more than I could do than I do to prevent it. I don't worry about a disease that I can't prevent."

But at least one son of an Alzheimer’s patient had his worry confirmed in the worst way: By developing signs of the disease himself.

“Within the last nine months, when I try to think of a word, I draw a blank. I’ll know I’m looking for a word and can’t find it,” said Francis, a 59-year-old mechanical engineer from South Carolina who watched his mother succumb to the disease.

He asked to be identified only by his middle name because he hasn’t told his children or his employer that he likely has early-onset Alzheimer’s disease. He has begun taking donepezil, popularly known as Aricept, one of a handful of drugs aimed at slowing cognitive decline.

Francis is clear that he does not want his wife and grown children burdened by his disease. He said he wouldn’t think of asking them to care for him at home if the disease gets worse.

“If it happens to me, I will probably divorce my wife, become indigent and let the government take care of me,” he said.

That’s a stark contrast to Winokur, who said the care she provided keeping her father at home should serve as a model for her children.

“I would really pray that by example, that’s just something you can expect,” she said. “I would definitely want to stay at home. I fulfilled what I would want.”

Researchers like Antuono, who also lost his mother to Alzheimer's, expect to have a reliable treatment for Alzheimer's within a decade.

"In 10 years we'll have an intervention that willl compress the first symptoms of the disease all the way to end," he said, noting that it likely will make the disease a chronic condition, but will not cure the disorder. "A cure to get rid of this altogether? That might be left to the next generation."

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