Early Onset

Early Onset Dementia - What is it?

Young-Onset Cases On the Rise, Experts Report
from Alzheimer's Association Newsletter, Winter 1993

According to doctors, the number of diagnosed cases of younger people with Alzheimer's disease (AD) is increasing, striking people at the peak of their career and childrearing years.

"While most people are diagnosed in their 60s, 70s and 80s, an increasing number are being identified in their 40s and 50s," says Leonard Berg, M.D., chair of the Association's Medical & Scientific Advisory Board, who refers to younger cases as "young-onset" or "early-onset" AD. Various estimates place their proportion at anywhere from one to 10 percent of all people with AD -- or from 40,000 to 400,000 people in the U.S.

Young-onset AD is not a new phenomenon. It's been around long before Alois Alzheimer discovered the debilitating brain disease in 1906. But in recent years researchers have made dramatic progress in their understanding of the nature and symptoms of Alzheimer's disease, contributing to the increase in diagnosed young-onset AD.

"We have a much better idea of the clinical picture of the disease compared to just 10 years ago," says Dr. Berg. "Because we're able to make a more accurate clinical diagnosis of AD, we now recognize it more readily in younger patients." A definitive diagnosis of Alzheimer's disease can only be achieved through examining brain tissue during an autopsy. As diagnostic techniques have improved, more older people are being diagnosed, as well, says Berg.

Another reason for the rise in young-onset cases: increased public awareness of AD. "Alzheimer's disease was not exactly a hot topic 20 years ago," says Berg. "But today, AD ranks with cancer and heart disease in terms of awareness and concern for getting the illness." A recent survey conducted by The Gallup Organization for the Alzheimer's Association found that one in three people say they know someone with Alzheimer's disease, and many are concerned about getting it.

The social toll of early-onset

The behavioral symptoms of AD are much the same no matter what the person's age. But the middle-aged person with AD is different from the older patient.

Unlike the older-diagnosed person who's approaching or past retirement, the younger person is often faced with having to quit his or her job early and resign from family responsibilities all too soon.

"There can be much more disruption to the family," says Casey Durkin, program director with the Cleveland Area Chapter, which currently runs two early-stage family support groups. Some of the participants in the groups have young-onset AD.

"Family members of the person struggling with progressive and irreversible memory loss may be confronted with issues of loss and role confusion much earlier than they had anticipated. The spouse, in particular, is faced with feelings of loss associated with companionship and partnership.

"Children, regardless of age, can withdraw, become angry, or at times even feel embarrassed. In some cases, the parents of the person with Alzheimer's disease are still living, and they may have to consider a caregiving role."

Hilda Pridgeon, a founding member of the Alzheimer's Association, knows first-hand the emotional and financial devastation of a young-onset diagnosis. She became her family's primary wage earner when her husband, Alfred, began showing signs of the disease at age 47. At the time of his diagnosis, she had a 12-year old son and two children in college. Alfred died 15 years later.

"It was a very difficult time," says Pridgeon. "It was a complete role reversal. I had to take on new responsibilities and carry through with the development of my family.

"When you're young you think 'One day I'll retire and enjoy the good life,"' says Hilda. "Nothing could have been more unexpected than my husband's young-onset diagnosis.

"Once we accepted his diagnosis, some other families and mine began to work to form one of the Alzheimer's Association's first chapters. It was good to be involved in a positive way about such a negative experience."

For more information on young-onset Alzheimer's disease or the Alzheimer's Association chapter nearest you, call 1-800-272-3900.

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