The Psychological Toll of Early Onset Alzheimer's Disease

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."

Coping With Early Onset Alzheimer's Disease

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.

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