Stolen years

Alzheimer's is edging into midlife with diagnoses that upend the lives of victims and loved ones otherwise in their prime

January 04, 2009|By Stephanie Desmon | Stephanie Desmon,stephanie.desmon@baltsun.com

Kent Bugg came home from work one day a couple of years ago to learn that his wife, Dorothy Frohder, had abruptly retired from her job as a middle school guidance counselor.

The woman with four degrees realized that she just couldn't do the work anymore. She could no longer use her computer properly. There were other hints of something amiss. She had stopped keeping track of the money she was spending. She couldn't find the words for simple things.

On May 19, 2007, Frohder learned that what her husband had been attributing at times to a thyroid problem, at others to just plain aging, was really Alzheimer's disease. She was only 56 - seemingly too young to be diagnosed with this devastating illness of the very old.

Frohder, who lives in Anne Arundel County, is part of what appears to be a growing number of Americans with early-onset Alzheimer's, as many as 200,000 people in the United States, according to the Alzheimer's Association. Most people who get Alzheimer's are older than 65, with the majority in their 70s and 80s. But a small percentage are being diagnosed in the prime of their lives, when they have jobs and even young children.

"We're seeing more and more people in their 40s and especially in their 50s and early 60s with more serious memory problems than we've seen before. And many of them turn out to be Alzheimer's," said Dr. Constantine G. Lyketsos, chair of psychiatry at Johns Hopkins Bayview Medical Center.

He doesn't know why he is seeing more younger patients - it could be because baby boomers are pushing through this age group or there is a greater awareness of the disease. There aren't hard numbers, in part because Alzheimer's is notoriously difficult to identify, particularly in the middle-aged. It is not the first disease that comes to mind for this age group, and doctors often chalk up slips in memory to stress or depression. With Alzheimer's, Lyketsos points out, the brain slowly rots.

Doctors don't fully understand what causes Alzheimer's, early onset or otherwise, or why some people get it and others do not. Some genes have been linked to the disease. One dominant gene is believed to account for up to 10 percent of early-onset Alzheimer's, so if you have that gene, you will get the disease.

More is being learned, but there is no cure. Some medications may alleviate symptoms, but there is nothing to slow or stop progression of the illness, though not for lack of trying. Currently there are more than 100 medications in clinical trials.

Typically, Alzheimer's appears when people are in their mid- to late 70s and 80s. By age 85, there's a one in three chance of getting Alzheimer's disease, Lyketsos said. If you are between 65 and 75, there is a less than 1 percent chance. Early-onset Alzheimer's is even rarer. In Maryland, the Alzheimer's Association estimates there are just 3,200 people with early-onset Alzheimer's and another 5,000 or so with premature dementia.

"I've heard it said that Alzheimer's kills the brain of the patient and the heart of the family," said Carol Wynne, a nurse practitioner who runs an Alzheimer's Association support group for families dealing with early-onset disease. "It's very hard to watch - and as a society, we aren't set up to deal with them."

Kent Bugg and Dorothy Frohder met in 1982, on Halloween night when she was dressed in a homemade pumpkin costume and he was just dressed. He was a 22-year-old part-time college student and trucking company worker, and she was a 32-year-old high school guidance counselor in Georgia.

Despite their age difference, Bugg was drawn to care for her even back then, taking her out for a steak dinner on their first date. "I thought she was so skinny she needed meat on her bones," he recalled. Five years later they were married. They filled their lives with friends and family and work and travel. By day, Frohder became more and more accomplished at work, even spending a year running the guidance department for the Prince George's County schools. In her spare time, she would do exquisite needlepoint and crochet work.

Until she could do none of those things anymore.

In the spring of 2007, when she went to an annual checkup, the nurse noticed something amiss as Frohder tried to get out a word but could not. The doctor was concerned, too. She sent her patient to see a neurologist. He ordered an MRI and did some simple mental and memory tests. He diagnosed Frohder with Stage 1 Alzheimer's disease.

"I was dumbfounded," Bugg said. "It was hard to speak."

A year later, another doctor told them she had more advanced Stage 2 disease, her condition clearly deteriorating.

"This is happening too quickly," Bugg said. "Time is not on our side. It's our biggest enemy."

For now, Dorothy doesn't seem like an Alzheimer's patient. Her blond hair shows only hints of gray, her pale skin just beginning to show wrinkles. She gets around with ease, strong enough to help rake leaves in the backyard.

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