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Health Information Without Warning: Coping With Early-Onset Alzheimer's Disease

After Jane Pole was diagnosed with Alzheimer's disease three years ago at age 51, she and her husband Ron found comfort, camaraderie, and even humor in Without Warning, Rush's group for people with early onset Alzheimer's disease.

"We know there are two ways of looking at the situation, either dismally or with a grin," Ron says. "In Without Warning, we find reasons to laugh, no matter how grim it is. Life is a gift, and you can't bemoan the fact that Jane has Alzheimer's. Life changes, that's all."

Jane is one of the nearly 500,000 people in the United States who have early onset Alzheimer's disease—that is, who develop the illness before they reach age 65. Although the memory loss and mental confusion the disease causes is devastating at any age, it presents a different set of challenges for people with early onset Alzheimer's and their families. Rush University Medical Center in Chicago created the Without Warning group to help them address these challenges, give them a sense of connectedness and find a sense of purpose.

Rush created the group in response to a request by Marty Bahr, who is now 57 years old and was diagnosed with Alzheimer's disease in his early 50s. He felt out of place in support groups made up of elderly people and wanted to be able to meet individuals with Alzheimer's who were his own age.

"He kept talking about the fact that early onset is so different from having Alzheimer's when you're older," explains Bahr's wife, Laurie. "When you're in your 40s or your 50s and you contract the disease, your circumstances are different—there are different challenges, needs and concerns."

While elderly Alzheimer's disease patients are past retirement age and may have adult children to look after them, individuals with early onset Alzheimer's are in the middle of their careers and often are caring for their own young children. The loss of memory, comprehension and reasoning ability the illness causes means they'll eventually have to give up their jobs and child-rearing responsibilities, creating a financial and emotional strain for their family.

Individuals with early onset Alzheimer's also may live another 15 to 20 years. "People with early onset are going to have to plan for the disease for a long time," observes David Bennett, MD, director of the Rush Alzheimer's Disease Center. "For spouses as well, it has a different impact on your marriage in the middle of life than when you're old."

There are 300 to 400 individuals with early onset Alzheimer's disease among the approximately 2,000 patients being treated for the illness at Rush, some of them as young as their early 30s. "It's hard to believe that people are so young and could actually have a disease that we generally think is for the elderly," says Pam Smith, education coordinator for Rush Alzheimer's Disease Center, who organizes the Without Warning group. "It's harder to get the diagnosis. A lot of time these people go through numerous physicians because the doctors can't believe they have Alzheimer's."

In addition to Smith, the Without Warning team also includes Danielle Arends, RN, director of nursing in the Rush Memory and Aging Project; nurse practitioner Anna Treinkman, CNP; social worker Susan Frick; and music therapist Nancy Swanson.

The Without Warning group began meeting in April of 2004 and currently includes 17 individuals with early onset Alzheimer's disease and their caregivers. "Compared to what we started with, the number of people we have now is remarkable," Marty Bahr says.

Read more about the Without Warning program and early-onset Alzheimer's disease in: "Without Warning: A Shared Bond".

More Information at Your Fingertips:

  • For information on medical research initiatives for people with memory problems, visit the Rush Alzheimer's Disease Center home page.
  • For information on medical services for older adults, visit the Geriatric Services home page. Or call (800) 757-0202.
  • To learn more about our a free health and aging membership program for older adults and the people who care for them, visit the Rush Generations home page. Or call (800) 757-0202. Rush Generations can help you with your goals for vital, healthy living.
  • Looking for a doctor? Call toll free: 888 352-RUSH (7874)

Please note: All physicians featured in Discover Rush Online are on the medical faculty of Rush University Medical Center. Some of the physicians featured are in private practice and, as independent practitioners, are not agents or employees of Rush University Medical Center.

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Without Warning: Coping With Early-Onset Alzheimer's Disease

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