Here’s What To Know About Early-Onset Alzheimer’s

Everyone experiences memory lapses, but here's what happens when it's serious.

January 2, 2018
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Bill Gates recently announced he will invest $100 million to help find a cure for Alzheimer’s disease. The degenerative brain disease has struck several men in the billionaire tycoon’s family, as well as around 5.5 million Americans.

“My family history isn’t the sole reason behind my interest in Alzheimer’s,” Gates wrote in his personal blog. “But my personal experience has exposed me to how hopeless it feels when you or a loved one gets the disease. We’ve seen scientific innovation turn once-guaranteed killers like HIV into chronic illnesses that can be held in check with medication. I believe we can do the same (or better) with Alzheimer’s.”

As such, Gates is dropping half of the massive amount of dough into the Dementia Discovery Fund, a private group that is working on identifying new targets for treatments and attempting to “diversify the clinical pipeline.” The other $50 million is going to start-ups working on Alzheimer’s treatments.

“There are plenty of reasons to be optimistic about our chances: our understanding of the brain and the disease is advancing a great deal,” he wrote. “We’re already making progress—but we need to do more.”

Alzheimer’s is categorized into three types: early-onset, late-onset, and familial. More is known about late-onset and familial Alzheimer’s, although 13 percent of early-onset cases are familial. Early-onset occurs in people who are younger than 65 and is rare, accounting for only about 5 percent of the Alzheimer’s population. Those with early-onset also experience more of the brain changes that come with Alzheimer’s than those who develop it later on in life do.

Alzheimer’s Disease 101

Alzheimer’s disease is most commonly known for its devastating ability to wipe out the memory of those who have it. Over time, however, it will also damage the person’s thinking skills, leaving them unable to perform even the simplest tasks.

Discovered in 1906 by Dr. Alois Alzheimer, the condition also creates significant changes in a person’s brain.

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Dr. Alois Alzheimer (National Library of Medicine via the Bernard Becker Medical Library)

“Two abnormalities central to the disease are plaques and tangles,” says Heather M. Snyder, PhD and Senior Director of Medical and Scientific Operations at the Alzheimer’s Association.

“Plaques are formed by clumps of beta-amyloid protein that interfere with cell-to-cell communication in the brain. Tangles occur when tau protein in the brain—a key component in the brain’s transport system—twist into abnormal tangles, disrupting delivery of nutrients and other essential materials within the brain.”

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Beta-amyloid-peptide

“Researchers are working to better understand the precise role plaques and tangles play in the disease and how to prevent or slow their development.”

The damage begins in the hippocampus, the part of the brain that is responsible for holding onto memories. Over time, and as more neurons die, other parts of the brain are affected. Eventually, the brain can experience significant shrinkage and prevent people from engaging in simple tasks like eating.

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Plaque composed of beta-amyloid

Although it is listed as the sixth leading cause of death in Americans, the disease isn’t usually what kills. Rather, the complications that come with the disease are thought to cause death. For example, a person who is bedridden because of Alzheimer’s may develop a fatal blood clot. Weight loss and other complications can result in a weakened immune system, which can lead to problems that may end in death.

Symptoms of Early-Onset Alzheimer’s Disease

Alzheimer’s is the most common type of dementia, a syndrome that includes a combination of memory loss and the inability to perform simple tasks that is so significant it affects a person’s daily life. Alzheimer’s disease accounts for 60 to 80 percent of all dementia cases.

Early-onset Alzheimer’s differs from late-onset and familial in that it typically appears when a person is in their forties or fifties, as opposed to when they’re 65. And although memory loss and confusion happen to even the healthiest brains from time to time, it’s worrisome when it happens progressively more than usual.

But it’s more than forgetfulness that is a cause for concern.

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Other symptoms of early-onset Alzheimer’s include trouble with time and place, difficulty completing familiar tasks, challenges in planning and problem solving, trouble speaking, misplacing things, withdrawal, and decreased or poor judgment.

Who gets Alzheimer’s?

Unfortunately, when it comes to Alzheimer’s, just about everyone is game. However, genetics do play a factor. Your chances of getting Alzheimer’s, either early-onset or late-onset, are increased if you have a parent or sibling who is affected, says Snyder.

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Familial Alzheimer’s, however, is a whole different ball of wax. Just like early-onset, familial Alzheimer’s is rare, affecting only about 2 percent of the Alzheimer’s population. It is the result of a mutation that affects one to three genes that are known to aid in the development of Alzheimer’s: PSEN1, PSEN2, and AAP. Those who have relatives with familial Alzheimer’s are just about guaranteed to inherit the condition, as well.

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Alzheimer’s is also more prevalent in certain groups, and researchers aren’t sure why that is.

“Current estimates indicate that African Americans are twice as likely to develop the disease,” Snyder says. “Hispanics are one-and-one-half times as likely. People living with Down’s syndrome are at higher risk, and two-thirds of Americans with Alzheimer’s are women.”

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Researchers are currently examining what mechanisms and underlying biology may be contributing to why the disease targets certain people, including genetics, and variations in health, lifestyle and environmental risk factors, she says.

Is genetic testing worth it?

Since medical professionals have identified which genes affect Alzheimer’s, it makes sense to wonder if genetic testing to determine if you will develop the disease is beneficial. The problem is that the tests don’t provide a definitive answer, says Snyder.

“Unless a person has familial Alzheimer’s that guarantees Alzheimer’s (2 percent or fewer of all cases), a genetic test will only indicate if someone is at greater or lower risk for the disease,” she says. “The Alzheimer’s Association cautions against routine genetic testing for Alzheimer’s disease risk until an individual has received proper counseling and understands the information necessary to make an informed decision, including the social and economic factors that could be impacted by having this genetic information.”

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In other words, you’ll need to ask yourself if finding out that you might have a greater chance of developing Alzheimer’s than the next guy does is worth the effect it may have on your life. Since you won’t receive a definite answer of whether or not you’ll have the condition, it may not be worth the what-ifs you’ll likely experience after receiving the results.

After the Diagnosis

Receiving a late-onset Alzheimer’s diagnosis isn’t a walk in the park. But finding out you have early-onset Alzheimer’s is typically worse.

It’s life changing, not only for the person receiving the diagnosis but for their loved ones as well.

Those with early-onset often begin experiencing symptoms while they are still working. This can create problems that people who develop the condition later on in life don’t usually have to worry about, says Snyder. They may find it gets increasingly difficult to perform their duties at the same level they did prior to the diagnosis and may also lose their jobs because of it.

As such, providing for their families, paying college tuition for children, and keeping up with the mortgage can become a struggle, particularly if the person with Alzheimer’s is the primary financial provider for the family. Because they are younger, they may not have the financial means to be able to retire. And since Alzheimer’s is a progressive disease, it only gets worse and worse.

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“It’s life changing, not only for the person receiving the diagnosis but for their loved ones as well,” Snyder says. “Following a diagnosis, it’s important for the individual and family members to educate themselves about the disease, available treatments, and care and support services that can help navigate current and future challenges associated with the disease, including the emotional aspects of coming to terms with a diagnosis.”

And although there isn’t currently a cure for Alzheimer’s, medications are available that can help to manage the symptoms. Participation in trials is also encouraged, as patients have access to treatment therapies that are in development that they may not otherwise.

What to do if you Think You May Have Early-Onset Alzheimer’s

Age-related changes in memory and thinking are expected. Experiencing them in your thirties, forties, or fifties, however, is a bit worrisome, and something you should definitely get checked out, cautions Snyder.

“Most everyone experiences occasional memory lapses, but when memory or cognition issues become more frequent and start interfering in your daily life—it’s important to be evaluated by a physician,” Snyder suggests. “Having trouble with memory does not mean you have Alzheimer’s. Many health issues can cause problems with memory and thinking.”

Joining the cause can help families facing the disease know they are not alone in their fight.

Thyroid problems, depression, drug interactions, excessive alcohol use, and certain vitamin deficiencies can all cause dementia-like symptoms, says Snyder. But the good news is that when the issues are caused by a treatable condition like these, the damage may be reversed.

Receiving an early-onset Alzheimer’s diagnose may seem like something you can’t come back from. Having a loved one find out they have it can also make your world feel like it will never be the same again. And although you may face challenges, you can provide hope by joining the fight against Alzheimer’s, says Snyder.

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“You can volunteer at your local Alzheimer’s Association office, participate in fundraising events such as the Walk to End Alzheimer’s and The Longest Day, advocate for more research funding, or sign up to participate in a clinical study as a healthy volunteer through the Alzheimer’s Association Trial Match,” she says. “Joining the cause can help families facing the disease know they are not alone in their fight.”

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