Screening for Alzheimer's can be complex process

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Newsday.com

By DENISE M. BONILLA denise.bonilla@newsday.com

Quick SummaryThe only way to get a one-hundred percent accurate Alzheimer's diagnosis is an autopsy. But, experts said, using various diagnostic tests, an accurate assessment can be made 95 percent of the time.

The only way to get a one-hundred percent accurate Alzheimer's diagnosis is an autopsy. But, experts said, using various diagnostic tests, an accurate assessment can be made 95 percent of the time. The problem, according to experts, is that the majority of those with Alzheimer's are already years into the disease process by the time they receive a diagnosis.

There are several factors in this delayed diagnosis. One is that symptoms of the disease can be difficult to recognize and many attribute them to the normal signs of aging. Another is that even when symptoms are recognized, there exists a large amount of denial on the part of both the individual and their family members. Finally, experts said, even if the symptoms are recognized and acknowledged, many primary care physicians are largely untrained in the disease and may not check cognitive function or direct patients toward further testing.

"This is a very slow, insidious kind of illness, it starts off in a very subtle kind of way," said Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Program at Zucker Hillside Hospital in Glen Oaks. "I think when somebody's in the earlier stages of the illness, they have some awareness that they're not operating quite as they used to, but they're not ready to admit that something is really going on and they're holding on with both fists trying to control their lives rather than admitting that they're having some difficulty and looking for some assistance."

Because those in the early stages can "cover up" so well, it often takes family members some time to catch on to the changes brought by the disease. But denial plays a part as well, said Teepa Snow, a dementia care specialist and trainer based in North Carolina.

"There's still that, 'So what am I supposed to do?' They're looking for the magic silver bullet," Snow said. "They're looking for that, 'How can I make this go away? How can I make this better? Is there no cure?' And that's a really hard thing. They come often still wanting to know, maybe mom doesn't have it. Maybe this is just real bad forgetfulness."

But often, getting a formal diagnosis can be a tremendous relief, said Darlene Jyringi, program director of the Alzheimer's Disease Assistance Center of Long Island in Stony Brook.

"They think, 'I'm going crazy, something is wrong, I'm going crazy, I'm losing my mind," she said. The minute that the person is told that they have an illness that is causing the symptoms, it sort of takes that fear out of what's happening. 'Oh, there's a reason why it's happening, I'm not going crazy, I'm not losing my mind."

Still, some family members try to protect their loved ones from the news, which is a mistake, Jyringi said.

"Some family caregivers think, 'Well, if the person knows they have this disease they might give up hope," she said. "I think it's important if the person is able, especially for long-term planning. If the person is still in the early stage, they can have a say into what's going to happen to them down the road."

To find a site for National Memory Screening Day: