July 7, 2016 -- A diagnosis of Alzheimer's disease is devastating enough. A diagnosis at a relatively young age adds another dimension to the illness.
Early-onset Alzheimer's strikes less than 5% of all people with the degenerative brain disease. But the death of legendary college basketball coach Pat Summitt, who was diagnosed at age 59, has turned a new spotlight on the issue.
Here are a few commonly asked questions about early-onset Alzheimer's.
How common is it?
About 5.3 million people were estimated to have Alzheimer's in 2015, and it’s the sixth-leading cause of death in the U.S. But only 200,000 of those people were diagnosed with the disease before age 65, according to the Alzheimer’s Association.
What are the warning signs?
Alzheimer’s is a progressive and irreversible disease that attacks nerve cells in the brain, causing memory loss and damaging thinking skills. It can develop in people as young as their 40s. When it does, "symptoms may not start with typical memory loss,” say Jagan Pillai, MD, PhD, a cognitive neurologist who works with Alzheimer’s patients at the Cleveland Clinic. Pillai says it’s sometimes mistaken for depression or other psychiatric disorders at first.
“It may be changes in mood or behavior, or changes in judgment or organizing skills,” he says.
Although early-onset Alzheimer's is rare, people under age 65 shouldn’t dismiss memory problems, says James Hendrix, PhD, director of global science initiatives at the Alzheimer's Association.
“It could be there is some other reason people might be having memory issues at that stage of life,” he says. “Some of those could be treated, so they shouldn’t be afraid to address it with their physicians. They should seek out health-care professionals who really understand memory issues and cognitive issues and get those addressed.”
How is it treated?
All Alzheimer’s care focuses largely on managing the increasing toll of the disease and the effects it has on a patient’s life. There are five FDA-approved drugs on the market that can slow down Alzheimer’s symptoms, but nothing yet can roll back the effects of the disease, Hendrix says.
What causes it?
While researchers don’t fully understand the causes of Alzheimer’s disease, the biggest risk of the early-onset type is found in people with a strong family history of the disease. Researchers have identified gene mutations that cause the disease in a small number of people, and others that indicate an increased risk, Hendrix says.
Several studies are underway in hopes of learning more about those genetic links and applying that knowledge to new treatments, he says.
How else does early-onset differ?
It often gets worse more quickly than the disease does in older people. Sometimes, other family members have to quit their own jobs to become full-time caretakers, Hendrix says. And younger, more active patients who find themselves diagnosed with early onset Alzheimer’s also may be more likely to feel depressed, frustrated, or powerless as a result of their condition.
When it strikes people young, Alzheimer’s can upend jobs, retirement plans, and savings. Families find themselves reorganizing their lives, applying for disability payments, and making arrangements for long-term care, Pillai says.
“People under 65 are often still working, and the nature of the disease causes significant changes in their lifestyle,” he says. Because of that, “it becomes very important and at the same time challenging to get the diagnosis right,” he says.
Many of those diagnosed with early-onset Alzheimer’s are at the peak of their careers. Summitt, for instance, was the most successful Division I basketball coach in the history of college basketball, with a career record of 1,098-208. She led the University of Tennessee women’s basketball team to eight NCAA championships before announcing her diagnosis in 2011.
“It is not easy for anyone to stand up and admit that they have Alzheimer’s disease or dementia, especially someone who is known for their strong mental capacity, as Pat Summitt was,” Hendrix says. “So we at the Alzheimer’s Association really respect the courage that it took for her to stand up and make this public admission, and we also know that has likely helped a lot of people.”
What are the prospects for future treatments?
The most promising research focuses on how to detect the disease earlier and stall its effects, Hendrix says. Brain scans can detect the buildup of protein fragments and tangles suspected of killing the brain’s nerve cells, which may allow doctors to start treatment early.
But current drugs work only on healthy cells. Once large numbers of neurons are damaged or destroyed, the drugs are less effective in slowing down the symptoms, Hendrix says.
“What we need are drugs that will prevent the decline, prevent the loss of those neurons,” he says. “That’s where the field is heading now.”