For months, the rumors swirled: Something was amiss in DeKalb County’s clerk of court office.
Linda Carter, the Superior Court clerk for a decade, was often absent. She wasn’t meeting with judges. Her top deputies were making decisions. Then she suddenly resigned.
The reason was a secret that Carter had guarded for months, perhaps years. At 59, she suffers from early onset Alzheimer’s, and her fear of public exposure was so great that she and her staff worked together to conceal evidence of her illness, according to court papers.
Carter went public when she filed suit to get her job back, saying members of her staff tricked her into leaving her job last spring. But thousands of other workers who suffer from the illness will quietly try to hang onto their jobs, attempting to keep up their performance while becoming increasingly bewildered.
“With the aging of America and people working longer and longer, there’s a lot more of this coming,” said Dr. Allan Levey, the chairman of neurology at Emory University School of Medicine and chair of its Alzheimer’s Disease Center.
Levey said the workplace has not come to grips with the problem, and social stigmas about the disease prevail.
“There are situations we have with patients who don’t try to hide it,” Levey said. But many, if not most, “don’t confide in their bosses or co-workers because they fear they will be terminated.”
The Alzheimer’s Association estimates 5.4 million people have the degenerative disease that kills nerve cells in the brain and robs victims of cognitive abilities. About 500,000 of the people with dementia are less than 65 years old. Roughly 200,000 of them have Alzheimer’s.
As baby boomers age — and economic upheaval keeps people in the workforce longer — the issue of how to deal with employees with dementia and cognitive impairment will continue to be kicked around the nation’s courtrooms and boardrooms.
In the lawsuit filed by Carter against Debra DeBerry, a former assistant who took over the clerk of court office, Carter says she was tricked by subordinates into quitting the $127,000-a-year job that she could, largely, still perform.
Carter’s legal team said the Americans with Disabilities Act protects her, noting “federal law prohibits discrimination against individuals on the basis of their disability.” The ADA is a civil rights law that forbids discrimination against those with disabilities and requires an employer to provide “reasonable accommodations” to allow those people to work.
Both Carter and DeBerry declined to be interviewed.
In her legal response, DeBerry argued Carter “was mentally unable to perform the position’s necessary job responsibilities. To keep the office operating, Clerk DeBerry and deputy clerks assumed and performed plaintiff Carter’s job responsibilities.”
Frankie Swindle, who runs a courier service and is running for the clerk’s position next year, said in an interview that Carter had not been seen publicly for years.
“She did not show up for the candidate debates in 2008; that was strange,” said Swindle, who worked for 20 years at the courthouse. “She had some folks covering her butt. Someone in this office knew and they let it go on without talking to other public officials.”
But the matter “came to a head,” DeBerry said in her court response, when a TV reporter came to the office asking questions about Carter and demanding to see her.
Carter said her associates knew she was “suffering from a temporary episode of dementia” and slipped her a piece of paper they presented as a “routine document” that needed her signature. It turned out to be a resignation letter, she said.
But DeBerry states in her response, “Faced with the possibility of her mental infirmity exposed to the public,” Carter met with her and other longtime employees asking what she should do. “Ultimately, Carter decided to resign to avoid the embarrassment of having her mental condition publicly exposed.”
Carter and the county are negotiating a settlement payment.
But while cognitive disabilities are covered under the ADA, the progressive nature of Alzheimer’s makes it more difficult for employers to devise “reasonable accommodations” to help employees with the disease, experts say.
If an employee is in a wheelchair, companies can widen bathrooms and build ramps, said Mike Splaine, former advocacy and state policy director for the Alzheimer’s Association.
“But when you have a progressive, degenerative disease, it’s hard to come up with workarounds that will last for long,” Splaine said. “You have to ask for accommodations. You have to be brave enough to say you have the disease.”
He said there have been discrimination lawsuits concerning Alzheimer’s “but no one tracks them, not even the Alzheimer’s Association.”
Paula Pelissero, who heads the human resources department for the Alzheimer’s Association, said the ADA covers people with dementia and cognitive disabilities. But, she said, if a reasonable accommodation cannot be found, then a worker may not qualify to keep working.
Employees and employers must “look at the essential function of the job” and determine how the duties can be performed. She cited the example of a teacher who was having problems setting up Power Point presentations but could still teach, so a co-worker set up the technology for her.
According to the National Council on Disability, reasonable accommodations for someone with dementia might be setting up flexible hours, providing written work instructions to follow, arranging “supportive, understanding supervisors” to work with employees, setting up counseling, changing duties and minimizing distractions.
“But at some time, you’ll have to leave the workplace,” Pelissero said. Hopefully, she said, the employee will be able to qualify for some sort of long-term disability.
“If you have a diagnosis and meet with your employer and you know your rights, you’ll have a better outcome” for getting job accommodations or onto disability, she said.
Miles Hurley, an Atlanta lawyer who is a member of the National Academy of Elder Law Attorneys, has handled two cases with workers who came down with dementia and were trying to set up some sort of settlement with their companies. Both were executives, one in his late 50s, another in his early 60s. One got his pension. The other is negotiating for a disability.
He said Social Security last year added early-onset Alzheimer’s to the “compassionate allowance” program to fast-track benefits.
But still employees often hide their disease.
“I’ve seen it in cases where people will do everything they can to mask it, but someone higher up catches it because there is an error or something goes amok,” Hurley said.
Alister Bazaz, a banking executive, said his wife, Cecile, was a certified public accountant who carved out a successful career at SunTrust until things like computer passwords and filing expense reports online kept tripping her up.
“It really started showing up in the workplace; people would say, ‘She’s not herself,’ ” said Alister Bazaz. She kept falling behind at work and went in one Saturday to catch up. Later, she came home and couldn’t remember why she went in.
Soon, she received the devastating diagnosis: early on-set Alzheimer’s. She was 51.
“Three years ago, she was an executive at SunTrust,” Bazaz said. “Today, she can’t read, can’t write, can’t use a PC.”
The couple has started going to Alzheimer’s meetings, Cecile is in an experimental drug program, and Alister has spent a lot of time researching and talking to other about the disease.
Those who have Alzheimer’s often notice the first signs in the workplace, with its increasing technology, Alister said. But many are loath to let on they have a problem “because the young people who are so technologically savvy are nipping at their heels,” he added
Cecile Bazaz and her husband went public with her diagnosis, got long-term workers’ disability, then convened a farewell party with her co-workers.
He’s never regretted that decision.
“It was better than skulking off into the background,” he said.
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About Alzheimer’s
In recent months, singer Glen Campbell announced he has Alzheimer’s disease and will perform a farewell concert tour. And University of Tennessee women’s basketball coach Pat Summitt, who is 59, announced she has early onset Alzheimer’s but will continue to coach with the help of her assistants.
Health coverage for those 55-64 with disabling cognitive impairment:
-- 26 percent had Medicare
-- 29 percent had Medicaid
-- 35 percent early retirement or spouse’s job
-- 29 percent no health insurance (Note: Some had health insurance from two of these sources)
Source: University of Michigan Health and Retirement Study
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