The Psychological Toll of Early Onset Alzheimer's Disease


Lisa Carbo knew something was wrong. The former registered nurse from Metairie, La., began experiencing difficulty in remembering how to perform various functions at her job. Multitasking became harder. Eventually she was written up for poor performance, prompting her to seek medical help.

Carbo was diagnosed with early onset Alzheimer's disease in November 2007, at the age of 53.

Before her Alzheimer's diagnosis, Carbo had plans for her golden years. "I hoped to semi-retire, spend the rest of [my] life with someone, continue to be productive, travel," she said. "I love animals, I had planned to do a lot more volunteering with animal shelters."

Her diagnosis changed everything: She lost her job and her boyfriend left her. "All those hopes and dreams are smashed. They're all gone. It's like everything that you planned on for your life is gone."

Fortunately for Carbo, she was able to find help to deal with the depression brought about by her diagnosis. She began taking antidepressants and started seeing a therapist.

Dr. Gary Small, director of the UCLA Center on Aging, said that many patients in the early stages of disease, like Carbo, become anxious or depressed.

"They see what's happened to others with this diagnosis," Small said. "There's a sense of dread. It's like getting cancer, but in some ways it's worse.

"You're robbing people of their minds, what defines their humanity. I think it's a terrifying prospect for most people."

And because it generally strikes people who are in their prime, early onset Alzheimer's is often a source of distress, said Dr. Murali Doraiswamy, division head of Psychiatry and Behavioral Sciences at Duke University in Durham, N.C.

"For them, it can be very devastating," Doraiswamy said. "It can be almost like telling them, I don't want to say 'a death sentence,' but many of them take it very severely."

Carbo, for one, had an idea of what lay ahead for her. She is a caretaker for her mother, 77, who also suffers from Alzheimer's. She has seen the toll it has taken, as her mother is now weak, incontinent of urine, and requires a walker.

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"One of the hardest things is to watch my mom decline knowing that that's what's going to happen to me," she said. "It's like looking in a mirror and being terrified."

Early Onset Alzheimer's: Making the Diagnosis

Carbo said her diagnosis at a relatively young age caught her by surprise.

"It was like a rug pulled out from underneath [me]," she said. "Even as a nurse, I hadn't seen any cases of early onset Alzheimer's. I'd never taken care of anyone like that."

Neither was Alzheimer's the first guess of Carbo's doctors. When her work performance began to falter, Carbo spent the next six months undergoing a battery of tests -- including MRIs, spinal taps, blood work, and neuropsychological testing -- before doctors finally made the diagnosis.

Dr. Kenneth Langa, associate professor of internal medicine at the University of Michigan in Ann Arbor, said it is not unusual for a relatively young person who has memory difficulty to have many tests before receiving a diagnosis of early onset Alzheimer's.

"You'd want more evidence that that's what, in fact, is going on given the rarity of Alzheimer's disease in someone that young," Langa said. "On average, they would have more tests, and more expensive tests, and more elaborate testing than an older patient."

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