Stolen Memories: Problems with diagnosis of younger-onset Alzheimer’s

  • A technician operates a General Electric MRI machine at a private clinic in Calgary, Alberta, in 2005. Canadian Press via AP file

Monitor staff
Published: 4/8/2018 10:11:21 PM

When a patient under 65 complains about memory loss, confusion and problems at work, it seldom leads to a quick, clear diagnosis of Alzheimer’s disease.

“They get told it’s a midlife crisis. They get told it’s depression. They get told it’s a normal part of aging,” said Robert Santulli, a psychiatrist at Dartmouth-Hitchcock Medical Center.

“It can take a very long time to hit a tipping point where things are bad enough where a doctor will say, ‘Maybe this could be early-onset Alzheimer’s.’ ”

One-third of the people with younger-onset Alzheimer’s who responded to a 2006 survey by the Alzheimer’s Association said it took them from one to six years to receive an accurate diagnosis of Alzheimer’s. Later studies by the association have estimated that as many as 50 percent of people of all ages with the disease never receive a diagnosis.

There is no simple blood test that can be used to detect the brain disease. Diagnoses are usually confirmed through a combination of neuropsychological exams, analyses of a patient’s family history and costly spinal taps, MRIs, PET and CAT scans to view plaques and tangles in the brain.

Meanwhile, because of this delay, younger people encounter problems at work as a result of symptoms.

“Families will come in to meet with me and I’ll say, ‘Are you still working?’ and they’ll say, ‘No, I got laid off, or, ‘I took an early retirement because I wasn’t sure what was going on,’ and lo and behold they realized later they had Alzheimer’s,” said Melissa Grenier, manager of the New Hampshire Alzheimer’s Association.

Because of the delay in diagnosis, it’s not uncommon for patients with early dementia to get fired, or move from job to job. Most patients displaying symptoms are not aware of it at the time, and it can be discouraging and frustrating.

“Usually, the person with Alzheimer’s is the last to know there are problems,” said Geoffrey Vitt, a New Hampshire attorney who has represented Alzheimer’s patients in cases against employers.

Patients who are aware of changes in behavior can be hesitant to let their employer know for fear that they could lose their job.

“If someone had to change their schedule or accommodations because they had cancer, we wouldn’t think anything of it,” Grenier said. “But somehow there’s still something intimidating about Alzheimer’s and people don’t understand it.”

If patients are fired before they received an actual diagnosis, they are no longer eligible for disability benefits from their employer. This can be a challenge in a disease that can cost families hundreds of thousands of dollars.

“If you’re talking about someone who is living paycheck to paycheck, and doesn’t have savings, throw dementia in, and they’re really swimming up a waterfall,” said elder law attorney David Craig.

(Leah Willingham can be reached at 369-3322, or on Twitter @LeahMWillingham.)

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