NOVEMBER 14, 2008
When Alzheimer's Hits at 40
Early-Onset Sufferers Juggle Children, Job and Dementia
By SHIRLEY S. WANG
WSJ
Brian Kammerer, the 45-year-old chief financial officer of a small hedge fund, called his wife one day from a cellphone in the men's room of his Manhattan office building. A colleague had just asked him for something, he whispered, but he had no idea what it was.
"It clicks and it holds papers together," he said.
"A stapler?" Kathy Kammerer asked.
"I think that's what it's called," he replied.
Soon after that exchange in early 2003, the father of three was diagnosed with Alzheimer's disease, capping nearly five years of uncertainty and fear about his increasing forgetfulness and difficulty with language.
While most people who get Alzheimer's are over 65, Mr. Kammerer is one of about 500,000 Americans living with Alzheimer's or other dementias at an atypically young age. Alzheimer's takes a long time to develop -- usually, it isn't diagnosed until 10 years after the first symptoms appear -- but more Americans are identifying it early, thanks in part to aggressive screening programs pushed in recent years by groups including the Alzheimer's Foundation of America, a national alliance of caregivers. The disease can be especially torturous when it creeps up on those in their 30s and 40s. As these patients move through Alzheimer's early stages, they are forced to cope with the dread of not knowing what is happening to them, often in the years when they're raising young children and building financial security. As the disease progresses, there are slip-ups to cover, appearances to keep up. When these "early onset" Alzheimer's sufferers are finally diagnosed, they face hard questions -- whom to tell and when, and what these divulgences mean for their jobs and health insurance.
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In 1998, Mr. Kammerer started complaining of ringing in his ear. He sometimes felt dizzy, Mrs. Kammerer recalls. Other times he gave his wife a look as though he didn't understand what she had just said. The Kammerers sought out a neurologist, who suggested Mr. Kammerer get a magnetic resonance imaging scan of his brain. When the MRI results came back, they didn't look normal, the neurologist told the Kammerers. The doctor was unable to give them a diagnosis, however: He couldn't say whether there was something wrong, Mrs. Kammerer recalls, or whether Mr. Kammerer's brain had always looked that way. Had they even suspected Alzheimer's, it would have been difficult to diagnose. Doctors look for patients or their families to report a collection of symptoms -- such as forgetfulness, social withdrawal and difficulty planning or finishing complex tasks -- that worsen over years. (The dizziness and ringing ears Mr. Kammerer experienced aren't generally considered symptoms.) Currently, Alzheimer's can be diagnosed conclusively only by autopsy.
(snip)
That year, at age 40, Mr. Kammerer was named a Chief Operating Officer of DLJ Mutual Funds, a Donaldson Lufkin division. His new responsibilities included presentations to the board of a Wall Street firm of 11,300 employees. Within a year, Mr. Kammerer was struggling more often with words, a symptom of the disease called aphasia. But, always gifted at math, he showed no sign of having trouble with numbers, a key part of his job. To compensate, he worked into the night, when colleagues weren't around. He increasingly called his wife from work, reading her memos he had written to make sure they made sense.
(snip)
Mr. Kammerer didn't consider leaving the work force. His kids were all under the age of 12. There were many more years of private-school and college tuition to pay. But he began to lower his sights. Returning home from a positive interview for a prestigious job -- running a European company's U.S. operations -- he told his wife: "You know, Kathy, I don't think I can do this." Instead, he sought out lower-level financial-industry jobs that wouldn't require him to work closely with others. He wrote out cue cards to take with him on interviews and changed the topic when he didn't understand what an interviewer had asked. In 2002, he landed a position as chief financial officer at a small hedge fund, called Clipper Trading Associates, a position that involved managing the fund's accounting and administration but not making trading decisions.
(snip)
One evening in 2003, after yet another test, a type of brain scan called a positron emission tomography, Mr. Kammerer's physician called. Sitting in their bedroom, Mr. and Mrs. Kammerer got on separate phones to listen in. "Mrs. Kammerer, I have some terrible news," she remembers the doctor saying. "I believe your husband has Alzheimer's." Mrs. Kammerer dropped to her knees. She recalls that her husband didn't understand what was going on and told the doctor, "You have to hold on, something's wrong with my wife." They locked the bedroom door so the children couldn't walk in. After Mrs. Kammerer explained to her husband that he had been diagnosed with a form of dementia, they sat quietly. "Your life kind of flashes before your eyes," she says.
(snip)
By then, Mrs. Kammerer says, it was clear to her and her husband that he had deteriorated too much to try to find another job. Mrs. Kammerer went back to work as an office assistant in the District Court in Hempstead, N.Y., providing the family with a small income and health insurance... Mr. Kammerer's private disability insurance policy, which he took out in the '90s, added several hundred dollars to their monthly Social Security payout and Mrs. Kammerer's court salary. Mrs. Kammerer says her husband's care costs $5,000 to $6,000 a year in co-payments on top of what their insurance covers. The costs are likely to escalate: Mr. Kammerer stays home while his wife is working and the kids are at school. In-home care, or a nursing home, would cost more. Mrs. Kammerer says she hopes that day is still years away. Mrs. Kammerer wrestles with when to take responsibilities away from her husband. He still has his driver's license, though he doesn't drive anymore. The plan is to have him sit in the passenger seat and supervise Patrick, now 16, as he learns to drive this year.
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