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Delayed Alzheimer's diagnoses common, troubling

Jul. 8, 2013
 
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SACRAMENTO, CALIF. — Alzheimer’s is now the nation’s sixth-leading cause of death, with 5.4 million people affected. Even so, physicians can be slow to identify the disease in the elderly, despite the fact that old age is the greatest risk factor.

And doctors can be even more reluctant to diagnose people below the age of 65 who suffer from the rare, early-onset form of the illness.

“Honestly, it’s a routine thing that families in general try to get the person seen by a knowledgeable physician for more than a year, even a couple of years,” said neurologist Dr. Charles DeCarli, director of the UC Davis Alzheimer’s Disease Center.

The U.S. Centers for Disease Control and Prevention estimates that only 4 percent of Americans with the disease are younger than 65. But with the aging of the baby boom generation — and the coming Alzheimer’s epidemic, projected at 14 million cases by 2050 — the hard numbers behind that younger-onset percentage continue to rise.

Without timely diagnosis, people with Alzheimer’s lose valuable months when medications can most effectively slow their memory loss. The delay in diagnosis robs families of the chance to enjoy their time together and make financial and legal plans for the future.

Typically, experts say, families end up frustrated in seeking help, because primary care physicians aren’t looking for dementia in people still in the prime of life.

“Many providers find it hard to believe that someone so young could have dementia or Alzheimer’s,” said Elizabeth Edgerly, the Alzheimer’s Association of Northern California’s chief program officer.

“It’s really difficult. People in their 50s are misdiagnosed with bipolar disorder or depression or even midlife crisis. Or they’re told, ‘Of course, you have memory problems. Who doesn’t?’”

For many patients, diagnosis is delayed because a comprehensive assessment of dementia requires a detailed clinical history and neurological exam, said DeCarli. The process takes an hour, and most primary care physicians, who can see up to 40 patients a day in their practices, don’t have the time.

“It’s a challenge for primary care physicians,” he said. “I tend to see them adapting a number of strategies. When someone has memory complaints, they get a brain scan and get the patient on memory-enhancing drugs.

“The other strategy is to minimize the complaint until the situation gets more severe.”

Complicating the picture is the fact that dementia has other causes beyond Alzheimer’s: Pain medications, vitamin B12 deficiency, thyroid conditions, chemotherapy and some infections also can cause memory loss. So can diabetes and vascular problems.

The average person with dementia comes into contact with the health care system four times more frequently than patients without dementia, DeCarli said.

Beyond the health consequences and frustration, families of people with early onset Alzheimer’s also deal with the fact that delayed diagnosis forestalls the process of applying for Social Security disability payments.

“The travesty of not getting diagnosed is that people are alone. They’re alone, and they have no idea what’s going on,” Edgerly said. “ It’s very sad.”

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