What Pat Summitt’s Death Can Teach Us About Early Onset Alzheimer’s

The news of Pat Summitt’s death continues to ripple through the sports world, but it also shines a crucial light on another community: those who are suffering from Alzheimer’s disease.

Summitt, who became the winningest coach in the history of major college basketball at the University of Tennessee, passed away due to complications from the illness, according to a statement from her family. And, sadly, that’s not uncommon. Rapid health deterioration is an inevitable outcome of Alzheimer’s disease that many medical professionals are working tirelessly to solve.

“Alzheimer’s is devastating to an individual and their family,” James Hendrix, director of global science initiatives at the Alzheimer’s Association, told The Huffington Post. “Win or lose with research trials, we’re committed to ending this disease one way or another.”

More than 5 million Americans suffer from Alzheimer’s, a condition that can cause memory loss, confusion, anxiety and other neurological issues. The illness is the sixth-leading cause of death in the United States. In 2015, the mortality rate reached an all-time high, resulting in 29.2 deaths per 100,000 people, according to the U.S. Centers for Disease Control and Prevention.

What makes Summitt’s diagnosis different

Perhaps the most surprising part of Summitt’s case was her age. The legendary coach was 64 when she died, an indication that she had what’s known as early onset dementia, Alzheimer’s type. This is different than the typical Alzheimer’s disease patient, who likely wouldn’t display symptoms until after age 65, according to James Leverenz, a neurologist and the director of the Cleveland Lou Ruvo Center for Brain Health at the Cleveland Clinic.

“The average age of onset is closer to 80 years of age, so onset before 65 is uncommon, but not unheard of,” he told HuffPost. “Younger onset patients can particularly struggle because they’re often still working and may have families that depend upon them. It’s a tragedy.”

Summitt was still working when she was diagnosed with the Alzheimer’s type of early onset dementia in 2011 at age 59, stepping down from her role as the University of Tennessee’s women’s basketball coach shortly after. She went on to become a leading advocate in the fight against the disease by creating the Pat Summitt Foundation as a way to inform individuals and caregivers about the effects of the illness.

Early onset only accounts for about 10 percent of people with Alzheimer’s in the U.S. The cause of the disease in people so young is generally unknown. In the majority of instances, early onset is identical in form to the more common cases of Alzheimer’s, and progresses approximately the same way as it would in older individuals.

However, some research suggests that people who inherit rare genes linked with Alzheimer’s tend to display symptoms when they’re younger, sometimes even as early as age 30, according to the Alzheimer’s Association.

What it means to ‘die’ from Alzheimer’s

Despite the former school of thought that the disease isn’t technically a cause of death, experts now argue that it has a direct effect.

“Usually, the disease becomes so severe that patients become bed bound,” Leverenz said. “They become more susceptible to infections, sometimes they stop eating. It is usually an infection such as pneumonia that actually causes the person to die, but they wouldn’t be in that position if they didn’t have AD.”

How researchers are combatting the disease

Scientists are constantly pursuing clinical trials for drugs that could help slow or prevent Alzheimer’s. Currently, researchers are exploring how to reduce specific amino acids and proteins in the brain that lead to the development of the disease, Hendrix said.

Alzheimer’s researchers have also looked into lifestyle habits to prevent the illness or help mitigate its effects after diagnosis. Behaviors like regular exercise, a healthy diet and social stimulation have been shown to help boost memory and help protect the brain against cognitive decline.

Look out for warning signs

The most glaring red flag that there’s an issue is memory loss, Leverenz says. While many people laugh off poor recall, it could be a signal that something serious could be occurring neurologically. Individuals should also pay attention to brain function overall.

“As the disease progresses, people can lose ability to make good judgments and decisions, and eventually have difficulty with speech,” Leverenz explained. “They also might have trouble doing complex tasks with their hands — not due to weakness — and interpreting visual information.”

If you suspect anything is wrong, it’s never a bad idea to check in with your physician. It’s crucial to be your own health advocate — no matter your age.