With assistance, Summitt may continue coaching for now

Tennessee coach Pat Summitt's handling of dementia could well be her greatest legacy.
Tennessee coach Pat Summitt's handling of dementia could well be her greatest legacy. (DAVE MARTIN / Associated Press)
Posted: August 25, 2011

Jason Karlawish, associate director of the Penn Memory Center, was impressed when he heard that 59-year-old Pat Summitt had gone public with her diagnosis of Alzheimer's disease and that the University of Tennessee was letting her stay on as its women's basketball coach.

As the retirement age creeps upward and doctors get better at diagnosing dementia earlier in its course, increasing numbers of people will grapple with how to stay productive as their minds falter. Meanwhile, employers, families, and friends will need to figure out how to deal with workers who may still have a lot to offer but need support.

"We have to learn how to set up systems that will allow talented people to still contribute," said Karlawish, a medical ethicist. "She raises the general issue of how as a society we're going to live with and accommodate people with cognitive disabilities."

Summitt, who has won more games than any other college coach, said Wednesday that she was counting on her assistants to help her and take on more responsibility.

In an interview published in the Washington Post, she said she went to the Mayo Clinic after having increasing memory problems last season. Her team still managed a 34-3 season, but she realized something was seriously wrong when she couldn't remember an offensive call during a game.

In a video announcement, Summitt said doctors diagnosed early-onset dementia Alzheimer's type. Technically, Alzheimer's can be diagnosed only through a brain autopsy, but modern diagnostic techniques have improved accuracy while patients are still alive.

According to the Alzheimer's Association, 5.4 million Americans have the progressive, fatal disease, which attacks memory and other cognitive functions. Age is the biggest risk factor for Alzheimer's. Half of people over 85 have it and they account for 45 percent of those with the diagnosis.

Alzheimer's is considered early - or younger - onset if it starts before age 65. Only 200,000 people below that age have it.

In younger patients, the disease is more likely to have a strong genetic component. It also tends to progress more rapidly, although patients can live many years because their bodies are still strong. Alzheimer's typically kills people in about 10 years.

Mijail Serruya, a neurologist at Jefferson Hospital for Neuroscience, said he thinks most younger patients, especially those who are approaching 60, have the same kind of dementia as older people.

Local experts said there's no way to know how long Summitt can keep working.

In its early stages, Alzheimer's affects the newest memories. That means a coach might have trouble remembering the names of new players or recent events, while having clear memories of facts that were learned long ago, the doctors said.

But Alzheimer's is not just about memory. It also affects what doctors call executive function, the ability to make good decisions and organize thoughts. Patients can also have spatial problems or difficulty finding words.

People who are especially smart and extremely good at what they do can compensate for a long time and still perform better than young, healthy people.

"Eventually, the memory loss is going to be severe enough she won't be able to keep things coherent," Serruya said, "but that could be years away."

In the meantime, Summitt's staff can help her by writing things down and giving her reminders. She may have trouble making quick decisions during games.

Carol Lippa, a professor of neurology and director of the Memory Disorders Program at Drexel University College of Medicine, has many young dementia patients who still work. She said Summitt will still be valuable to players because of her personality, wisdom, and accumulated knowledge. Her staff would do well to back her up on administrative and financial duties. "That can leave a mess if no one's monitoring it," she said.

She sees help on the horizon. Current medications can slow progression in some people, but Lippa says vaccines and drugs that better target the clumps of amyloid that form in patients' brains are being tested. In the meantime, she said, Summitt may be able to slow the disease down by staying physically active and eating a healthy diet.

Marilyn Beiser, 60, of Hatfield, who was found to have Alzheimer's in 2009, wasn't able to keep working herself, but hopes Summitt can.

An accounting and finance manager, Beiser lost three jobs in the five years before her diagnosis. "People would sit down and train me about something and then they'd walk away and I didn't know what to do and I didn't know why."

The diagnosis made her feel better. "As horrific as the diagnosis was," she said, "at least I knew I wasn't lazy, I wasn't crazy, and I wasn't stupid."

Contact staff writer Stacey Burling at 215-854-4944 or sburling@phillynews.com.


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