“The winningest coach in NCAA history.” Some variation of that phrase is featured in the first line of all Pat Summitt’s obituaries — and I read scores of them. Indeed she was. But as impressive as that feat is, it might not be the most enduring legacy left by the longtime head coach of the University of Tennessee Lady Vols.
Summitt very publicly took on the Alzheimer’s demon the way she glared during a basketball game. In doing so, she may have helped shift attitudes about Alzheimer’s in the workplace.
It was the summer of 2011 when Summitt courageously disclosed her devastating diagnosis in a video.
Many people have gotten fired before their diagnosis, because they couldn't do their job.
— Beth Kallmyer, Alzheimer's Association
“Throughout my career, I’ve always made it a point that my life and our basketball program were an open book,” she said in the video, as she sat on her couch with her dog in her lap. She explained that a visit to the Mayo Clinic revealed early onset dementia, Alzheimer’s type. She was 59. “I plan to continue to be your coach, and for that reason, I will be relying on my outstanding coaching staff like never before,” she added.
Summitt never considered stepping away from her job.
“There’s not going to be any pity party and I’ll make sure of that,” she told The Knoxville News Sentinel at the time.
Summitt remained head coach for eight months —right through March Madness.
In April 2012, she transitioned to head coach emeritus. In her new role, she wouldn’t pace the court managing the chaos of a top-tier college basketball game. Instead, she would sit on the bench and focus on individual player development. She remained crucial to the team.
“Pat is still Pat,” said assistant coach Dean Lockwood at the time. “When she booms out a comment — a coaching piece to somebody, it’s very well heard and received. She flashes that stare and those eyes.”
Overcoming a Stigma
Of course, Summitt wasn’t the first person to grapple with Alzheimer’s in the workplace. When the news broke, human resources company Harris, Rothenberg already had reported a 100 percent increase in calls related to Alzheimer’s at work between 2009 and 2011. Summitt’s announcement further raised awareness.
“When someone like Pat Summitt, the winningest coach, comes out publicly and says ‘I have Alzheimer’s,’ people think ‘if it can happen to her, maybe I can talk about it,” says Beth Kallmyer, vice president for constituent services for the Alzheimer’s Association. “When a famous person like Pat Summitt or Glen Campbell says ‘I have Alzheimer’s,’ it normalizes it and allows people to go talk with their doctor. Especially with the baby boomers aging, there are more people reaching the age that is the greatest risk for the disease.”
Kallmyer compares today’s Alzheimer’s to cancer in the 1950s and 1960s.
“There is a stigma around it, people don’t want to talk about it, there’s no effective treatment and people are afraid,” she says. At work, she concedes, there is a reluctance to come forward and disclose any cognitive impairment for fear of being fired. “Many people have gotten fired before their diagnosis, because they couldn’t do their job,” says Kallmyer.
Detection in the Workplace
I know about this kind of thing from personal experience. My dad, Lefty Harris, was vice president of sales for a company that manufactured innersoles when he began to experience cognitive decline 30 years ago. I’d always wondered what tipped off folks in the office that he was slipping. This week, one of his former colleagues told me.
As the quintessential traveling salesman, my dad spent most of his time on the road. For years, he would drive from Massachusetts to Maine every other week to call on shoe factories. He knew the route like the back of his hand, as the cliche goes. Then one day, he called the boss from Maine to say he didn’t know how to get home. They sent a car for him.
Thus began the odyssey so many families experience into the slow, inexorable disappearance of the person they love. In retrospect, we figured out that my dad had established coping mechanisms before the Maine incident.
“If you ever saw the dashboard of your dad’s car, it looked like a pin cushion because your dad would pin notes all over the dash as reminders,” says John Clayman, who was the owner’s son and a young executive at the company when my dad began to lose his skills.
This came at a time when the shoe business was leaving New England and moving overseas. Dad’s company was transitioning from a manufacturing company to more of a marketing company. “It required a different type of selling than your dad was used to and he was struggling with some of that,” Clayman recalls. “He couldn’t remember the names of a lot of the things we were selling. I just didn’t see what was going on until we learned your dad had dementia.”
And then came this confession 23 years after Dad’s death: “I wasn’t as understanding as I should have been, which is a big regret,” Clayman said.
But Dad was lucky in one respect: The owner of the company, Henry Clayman, was devoted to him. His son John said it was a very paternalistic firm.
“My dad believed as long as your dad wanted to work, he would have a place at the company. Once everyone knew Lefty had Alzheimer’s, we were going to accommodate him as long as he wanted to work, even if it meant just showing up. That was our way of handling it. It was woefully inadequate, but I don’t think companies at the time were in a position to know better,” says Clayman.
Disclosing a Diagnosis
These days, some companies are much more proactive. Alan King, CEO of the human resources firm Workplace Options, told HR Magazine that “a manager’s responsibility is to engage. If an employee is making errors he’s never made before or stopped showing up for meetings, something that goes on for a period of time, these are examples where there may be issues.”
The Alzheimer’s Association Early Detection Alliance provides a toolkit that lays out possible early warning signs among employees.
If an employee has been diagnosed with early onset dementia or believes he is suffering from some kind of cognitive impairment, he can disclose it to his employer. According to the Americans With Disabilities Act, then, if the employer has 15 or more employees, it’s required to determine if reasonable accommodations can be provided to help the employee perform the essential functions of the job. And since 2010, the Social Security Administration has added early onset Alzheimer’s to the list of its Compassionate Allowance conditions, giving those with the disease expedited access to Social Security Disability Insurance and Supplemental Security Income.
Some five million Americans over 65 are living with Alzheimer’s; 200,000 are under 65 with early onset Alzheimer’s. Given that many aging boomers are working longer, the numbers of those in the workplace with the disease is likely to increase significantly. To raise awareness and push for added funding for research, the Alzheimer’s Association has created a group of advisers — people in the early stage of the disease — to lobby Senators and Representatives on Capitol Hill.
“When they meet members of Congress face-to-face and say, ‘What are you going to do for us? We’re living with the disease,’” says Kallmyer, “that takes advocacy to a whole new level.”