Why The Diagnosis Is Delayed

As the research below found 5 years ago, there is a significant percentage of caretakers who are told that their declining spouse or relative is just showing signs of normal aging. This happens for a variety of reasons: the defensiveness of the patient and unwilingness to be tested; the denial by patient and caretaker; the reluctance of the doctor to place the patient in what might be an interpersonally humiliating testing situation; and, often underestimated, the number of patients with strong educational and verbal ability backgrounds who are still above average on screening tests despite significant declines. The CANS-MCI tests were designed to avoid the resistance and to measure changes over time that discriminate between normal aging and the mild impairments most predictive of Alzheimer's, even in the highly educated.

It takes an average of 30 months from the time family members notice the initial symptoms of dementia for the person to be diagnosed with Alzheimer's, according to a study by Linda Boise, Ph.D., and colleagues at the Oregon Health Sciences University in Portland. The researchers conducted in-depth interviews with 244 primary caregivers and other close family members in order to understand why the diagnostic process takes so long. The single biggest reason, cited by 72 percent of caregivers, was that they knew very little about Alzheimer's disease, and for a long time simply did not imagine that the person's changing behavior and deteriorating cognitive abilities were manifestations of an illness. Half of caregivers said they thought the changes were a normal part of aging.

Here are selected other reasons for delay of diagnosis:

"I didn't know what kind of doctor to see" (44%).

"I felt overwhelmed by the increasing burden of caregiving" (42%).

"I didn't know how to explain the problems to my doctor" (38%).

"My doctor did not take my concerns seriously (29%)."

"I didn't have a chance to talk to the doctor in private (27%)."

"The doctor said my loved one's problems were a normal part of aging (25%)."

"I did not want to know that the illness was Alzheimer's (20%)."

The caregivers also said that during the period before the diagnosis, they became increasingly anxious as the person deteriorated. When the diagnosis was finally made, most caregivers said they felt relieved.

Source: American J. of Alzheimer's Disease April 19, 1999

Why is early diagnosis so important?