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 somewhere between one to six years to receive an accurate diagnosis of Alzheimer’s. Subsequent studies by the Alzheimer’s Association have estimated that as many as 50% of people of all ages with the disease never receive a diagnosis.
Unfortunately, there is no easy 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 can have issues at work because of the 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 time, it takes to get an accurate diagnosis, patients with early dementia frequently are fired or move from job to job. Most patients displaying symptoms are not aware of it at the time. As a result, it can be discouraging and frustrating.
The person with Alzheimer’s is usually the last to know that there are issues. Patients who are aware of changes in behavior can be reluctant to speak with their employer. They fear that they could lose their positions.
If patients are fired before they received an actual diagnosis, they’re no longer eligible for disability benefits from their employer. This can be difficult with a disease that can cost families hundreds of thousands of dollars.
Reference: Concord Monitor (April 8, 2018) “Stolen Memories: Problems with diagnosis of younger-onset Alzheimer’s”