The Psychological Toll of Early Onset Alzheimer's Disease

Lisa Carbo was diagnosed with early onset Alzheimer's at age 53.

May 12, 2009, 6:38 PM

May 13, 2009— -- 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."

Unlike the traditional form of Alzheimer's, which occurs in the elderly, the early onset type first produces symptoms prior to age 65. Estimates indicate that only 1 to 10 percent of Alzheimer's patients have the early onset form, and because it is relatively rare, there is often a delay in making the diagnosis, said Erin Heintz, a spokesperson for the Alzheimer's Association.

How Alzheimer's Disease Changes Plans

Doraiswamy said an Alzheimer's diagnosis forces a person to attend to practical matters. After breaking a diagnosis and starting a patient on medications, he counsels patients and families on safety issues and advises family members on how to deal with behavioral problems, like wandering and suspicion.

A person with newly diagnosed Alzheimer's should complete a will and advanced directives, as well as putting plans in place to protect financial assets, said Dr. Jeffrey Lyness, associate professor of psychiatry at the University of Rochester School of Medicine and Dentistry in New York.

"It is important to sooner rather than later deal with end-of-life planning," Lyness said.

Prior to her diagnosis, Carbo had begun saving money for her retirement and started a romantic relationship, as her husband had died a number of years before.

But her focus shifted to more mundane, sobering tasks after she learned of her diagnosis.

"I'm now trying to make a different plan," she said. "A plan that includes having a terminal illness, that includes losing your mind, losing your identity."

There are a variety of resources available to help patients with Alzheimer's and their family members, including the Alzheimer's Association, support groups, and Web sites.

Since she was diagnosed, Carbo has coped by trying to help improve the lives of others with Alzheimer's. Currently, she is one of 12 early stage advisors, who, based on their experiences living with the early onset disease, provide input and advice to the Alzheimer's Association. In addition, she founded a local Alzheimer's support group and helped write a pamphlet to make it easier for others with early stage disease to be diagnosed.

Lisa said doing these things is important for her because it helps her maintain her identity.

"You become almost non-human... but most of us with early stage still want to be productive, still want to be part of society. We still want to live."

Dr. Donald Royall, chief of the Division of Aging and Geriatric Psychiatry at the University of Texas Health Science Center in San Antonio, said that in addition to beginning medications and providing psychosocial counseling, it is also important for patients to enroll in Alzheimer's disease trials. While current medications only help treat symptoms, Royall said there is hope that future drugs might help slow down or stop the progression of the disease.

Making the Best of Early Onset Alzheimer's

Carbo is currently a subject in an Alzheimer's drug study. She is also participating in another study designed to assess a GPS device that helps people monitor the location of a family member with Alzheimer's, as they are prone to wandering and getting lost.

In the meantime, Carbo, now 55, said she plans to continue her work with the Alzheimer's Association and do things she's always enjoyed, like reading and socializing with friends.

While these activities can present challenges Carbo -- for example, she sometimes experiences difficulty maintaining her attention during a conversation in a restaurant -- they have helped her deal with her depression.

Today, she no longer sees her therapist.

"I had a little bit of a pity party and it was time to move on," she said.


Do you want to know more about Alzheimer's symptoms, risk factors, tests or treatment? Visit the OnCall+ Alzheimer's Center to get all your questions answered.

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