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."
Even some doctors are hesitant to make the diagnosis, experts said.
"It has been said that because there is no cure physicians don't want to go to the trouble of coming up with a diagnosis and leave with the families with this new label," said Dr. Gisele Wolf-Klein, director of geriatric education for the North Shore LIJ health system. "But we don't have cures for a lot of diseases that we deal with.. . . I think in many ways it is incumbent upon the physician to come up with a diagnosis that will explain some of the patient's symptoms."
Wolf-Klein said it's also important to get an early diagnosis so that the patient can be started on drug therapies that can slow down the progress of the disease.
"What I tell my families is if I can slow down the progress so that mom is not that much worse a year from now than she is today, would that be all right for you?" Wolf-Klein said. "And of course families are delighted with that."
But many physicians are untrained in diagnosing Alzheimer's or even in the nature of the disease itself, Wolf-Klein said.
"The medical schools are so overwhelmed by the demands of the curriculum that geriatrics is often relegated to the back burner," Wolf-Klein said. "They could go through four years of training without ever having had a lecture on Alzheimer's disease. So when they move on to their residency problem, they just have absolutely no insight as to how to proceed with a diagnostic work up and the management of a patient with dementia."
Even the methods which doctors use are limited, experts said. Many begin their assessment of cognitive skills with a 30-point test known as the Mini-Mental State Examination (MMSE). The questions include asking the patient the date, to count backward from 100 by sevens and to copy a drawing of two interlocking pentagons.
Although this test has become the de-facto standard first-step in diagnosis, it can be inaccurate, said Jennifer Manly, associate professor of Neuropsychology in Neurology at the G.H. Sergievsky Center and the Taub Institute for Research on Alzheimer's Disease and the Aging Brain at Columbia University.
"The problem with it is . . . people who are culturally different don't do well on it and it has nothing to do with whether they are demented or not. People who have lower education - nothing to do with whether they are demented or not," Manly said. "People who are culturally in the dominant culture, people who are well-educated, they all do well on that test, even if they have dementia. As a screening measure it's not very sensitive but it is very specific in the people who it's meant to be administered to - well-educated, white, older people."
Doctors and patients alike need to have an understanding that this test is not intended to be a complete diagnostic tool but simply a screening measure, Manly said. "The standard of care is a full neuropsychological test battery and that really is the best thing to do if you have worries about your memory," Manly said.
Tests such as the MMSE can be useful to begin that initial dialogue about dementia, experts said, and it's one of the tools used in the Alzheimer's Foundation of America's National Memory Screening Day. During this event - which takes place on Nov. 17 this year - various sites around the country offer free, confidential memory screenings to those concerned about memory loss.
"If we start this process earlier, it makes the whole course of the illness easier," Vogel said. "If they're not so confused and they're not so threatened and they start to accept and find the right caregiver or we find the right program, the rest of this journey is far simpler."
To find a site for National Memory Screening Day: http://www.afascreenings.org/