The number of people with Alzheimer’s disease in their 40s or 50s could be underestimated

Guest Post by Paul Brandus

Could you develop this disease at such an early age? Your family history could be telling, medical professionals say

In the movie “Still Alice,” Julianne Moore plays a woman who is diagnosed with early-onset Alzheimer’s disease.

Last week, I watched a movie called “Still Alice,” starring Julianne Moore. It was disturbing and heartbreaking to watch.

Based on a true story, Moore (who won an Academy Award for her performance) plays a razor-sharp Columbia University professor who, at the age of 50, begins to get confused about things — getting lost on campus, fumbling for words, introducing herself to people she introduced herself to 10 minutes before, and so forth.

Concerned, she consults a neurologist, who delivers a lightning bolt: Alice has a rare, early form of Alzheimer’s disease, and that it’s genetic, meaning her children are highly predisposed to being afflicted as well.

Alzheimer’s? Age 50? Is this common? Perhaps more common than you think. Audrey Duarte, a professor of neurology at the University of Texas at Austin, tells me the Alice character developed “a variant of Alzheimer’s disease called Early Onset Alzheimer’s Disease (EOAD), which is diagnosed in people younger than 65,” and “can account for perhaps 5% to 10% of all Alzheimer’s disease cases.”

She emphasizes, though, that the common perception of Alzheimer’s remains true: “Most people who will be diagnosed are diagnosed in their late 70s or older.”

Could you develop this terrible disease at such an early age? Your family history could be telling, Duarte says, because it “seems to have a stronger genetic basis than later-onset cases.” In the movie, Alice, devastated at her diagnosis, apologetically tells her kids that they are at high risk for the disease.

Here’s what we do — and don’t — know: “Most people with Alzheimer’s are age 65 and older,” according to the Mayo Clinic. “About 1 in 9 people age 65 and older in the United States has Alzheimer’s disease. About 110 of every 100,000 adults between ages 30 and 64 have young-onset Alzheimer’s. For most people with young-onset Alzheimer’s, the cause is not related to any single gene. Researchers don’t fully know why some people get the disease at a younger age than others do.”

The quality of your sleep

Meanwhile, for the vast majority of those who will develop Alzheimer’s later in life — 90% to 95% of cases — emerging research could point to a link between Alzheimer’s and the quantity and quality of your sleep.

“There is compelling data from human studies showing that poor sleep quality, such as restless, fragmented sleep, in older adults predicts a greater risk of developing Alzheimer’s disease several years later,” Duarte says.

She also points to studies on rodents, and more recently humans, “showing that a single night of sleep deprivation causes an increase in the amount of beta amyloid in the brain. This is one of the pathologies in the brains of people with Alzheimer’s disease. So, while there is still much to be investigated, these results do suggest that good sleep is a potential preventative factor against Alzheimer’s disease.”

Does this mean you should get more time in the sack? Not necessarily. Some people need more, while others can function quite well on less. “And to make things even more complicated,” Duarte adds, “that number of hours might change over time or with the development of health conditions. What we can say is that, on average, very short sleep [less than 5 hours per night] and very long sleep [more than 9 hours] in adults is associated with worse health outcomes and cognitive decline. Sleep quality is also important. Sleep that is continuous without many waking episodes or movement is associated with better outcomes too.”

One problem with research into Alzheimer’s disease is a relative lack of data. We know the big picture: Nearly 7 million Americans are currently living with the disease, estimates the Alzheimer’s Association — a figure that will nearly double to 13 million by 2050. We know it is the fifth-leading cause of death among Americans aged 65 and older. We know that healthcare costs associated with Alzheimer’s could reach $360 billion this year — and could soar to nearly $1 trillion by 2050.

And yet, says Terrie Moffitt, a professor of psychology and neuroscience at Duke University, “the United States doesn’t keep a national health register of diagnoses. And even in countries that do keep national registers of diagnosis, such as New Zealand, Denmark, Norway, Sweden, these registers seriously under-count.”

Why is this? Because there is no cure for Alzheimer’s, medical professionals say. (There are, however, some treatments that may help to temporarily slow the progression of the disease.)

It’s certainly possible, if not probable, that the true number of Americans living with this terrible disease is also undercounted, she adds.

“More than 20% of older Americans have living situations where no family member would notice their symptoms,” she says. “They live alone, or in a rural area, or their children live in a different part of the country. Many families, especially families of color or low education, prefer not to take a patient to the doctor for diagnosis, so as not to upset them.”

Reluctance to seek medical help

Interesting observation, but perhaps people in more fortunate circumstances may avoid going to a doctor for a similar reason: No one, regardless of race or economics, wants to hear that they or a loved one has this frightening disease. And so we tip-toe around it, reluctant to touch this third-rail like issue. In “Still Alice,” Alice’s family seemed in denial until her behavior, and accelerating decline, made it all but impossible to ignore.

It’s for this reason that Moffitt suggests that the true age when someone may actually have Alzheimer’s (or its close cousin, dementia), may actually be much lower than we think.

Sometimes, she tells me, “the main reason for going for a dementia evaluation and diagnosis tends to be when adult children wish to make a change in their parent’s life and need a diagnosis recorded for that purpose,” she says. “To stop the parent from driving, to take over financial power of attorney, move the parent into a senior care facility,” and so forth.

“At that point, their dementia is usually very far along,” she adds. “And the parent is in his/her 80s. So you can see that the oft-heard observation that the median age of dementia onset is in the 80s could be late by a decade or two. In any case, dementia is a long and gradual process, it does not have a sudden onset where one day the person is well, and next day they are unwell.”

A decade or two? Could it be, then, that the median age for Alzheimer’s is really much lower than the common perception that this is an older person’s disease? That is a staggering question that needs to be answered.

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