It's always there. Lurking around the corner. In the back of my mind.
Alzheimer's. Will I get it?
The disease, responsible for 75 percent of dementia cases, leads to nerve-cell death and tissue loss throughout the brain. Over time, the brain shrinks dramatically, with nearly all of its functions affected.
According to the Alzheimer's Association, there are five Food and Drug Administration-approved medicines that help treat the symptoms of Alzheimer's but none that prevent or cure it.
I fear falling victim to this awful disease because for me, it's all relative.
My grandmother had it in the early 1980s, but back then we attributed her confusion to "hardening of the arteries." One day I discovered that bringing out boxes of old family photos would stimulate and engage her. It would draw out the grandmother I knew. But once the photos were put away, she'd slip away again. As time passed, bringing out the photos became less and less effective.
My aunt, who was childless, developed Alzheimer's beginning a little more than a decade ago. About nine years back, she agreed to move to Little Rock and into an independent living center; but she soon became paranoid and suspicious of my intentions. Before her death, she moved from one city to the next as a succession of other relatives attempted to help her, only to be spurned.
This spring, my sweet mother was diagnosed. Still living in her own home near me, she is not combative, and not driving, cooking or wandering. Yet. But I'm bracing myself.
As for me, I figure three strikes, I'm out. It's just a matter of time before Alzheimer's comes calling, right?
Not necessarily, said Dr. Mark Pippenger, an associate clinical professor of neurology and director of the Walker Memory Center at the University of Arkansas for Medical Sciences' Reynolds Institute on Aging.
Who's most at risk?
"Someone with a first-degree relative -- a parent, sibling or child -- who's had it," he said. "Grandparents wouldn't count if the patient didn't have an immediate relative who had it."
Which brings me back to my being at risk. And angst-ing over it.
"We've got a lot of people who come in who believe they are at risk for getting Alzheimer's and want to be tested," said Pippenger, who has been working with dementia patients since completing his fellowship in 2001 at the University of California, Los Angeles. "The problem is trying to identify and recognize the bio-markers -- things that can begin as early as in our 20s but won't become symptomatic until we're in our 70s or 80s."
Many of the patients Pippenger sees have Alzheimer's. There is no blood test for diagnosing the disease or any medicine to prevent it or cure it. There is good evidence that the disease begins 10 to 15 years before people are diagnosed, he said, explaining that brain scans of people with no symptoms have shown pathological evidence, including a buildup of protein plaques and tangles.
But, he said, the medicines used to treat people that show symptoms are helpful and can slow a patient's decline. Those drugs are donepezil (Aricept), galantamine (Razadyne), memantine (Namenda), rivastigmine (Exelon) and tacrine (Cognex). So the search is on for tests that will pinpoint Alzheimer's earlier.
The only screening tools available -- cognitive assessments -- can't diagnose dementia until people are already showing signs of confusion or memory loss. But they do spot those people.
Am I one of them?
STATUS CHECK
I've interviewed Pippenger about Alzheimer's before, but recently I made an appointment for a different interview: one with a test. Gulp.
The Montreal Cognitive Assessment (MoCA), a 10-minute oral and written test, was created by Dr. Ziad Nasreddine in Montreal in 1996 to test for mild cognitive impairment and early Alzheimer's disease. Before then, the Mini-Mental State Exam (MMSE), an eight-minute test in use since 1975, was the standard screening for memory disorders used by primary care physicians.
Neurologists believe the MoCA test is more discerning. "It's very accurate and very important," Pippenger said of MoCA.
The 30-point, one-page MoCA assesses several cognitive abilities. For instance, visual spacial abilities are tested by asking the test taker to copy a three-dimensional cube and draw a clock with hands pointing to a certain time.
I lost one point in the clock drawing for not making sure the hour hand was noticeably smaller than the minute hand.
The test also had a section for naming animals in drawings and a section that tests memory in which the subject immediately repeats a series of five words. I was advised to remember those words.
Another section tests attention with a list of digits being repeated first in forward order and then in backward order, followed by a list of letters read aloud during which the patient must tap his leg whenever a certain letter is said.
Next I had to subtract the number seven beginning at 100. (A math test? No one told me there was going to be math. My weakest subject in school ...) Of three possible points, I scored two.
After that, my language ability was tested by having me repeat two spoken sentences and then asking me to name as many words as possible that begin with the letter F.
Next came a test for abstraction. I had to talk about the similarities between a train and a bicycle (both modes of transportation) and a watch and a ruler (both used to measure).
BUT WAIT ... THERE'S MORE
A test in delayed recall followed. Remember those five words? Pippenger asked. I remembered four, dropping my score on that section from a possible five points to four. But prompted with a hint, I remembered the fifth one as well, earning me a check mark -- but no additional points.
The exam concluded with questions on orientation -- I recited the day's date, month, year, day of the week and said where I was (place and city). I got all of that right except for the date (journalists always seem to be thinking and working several days ahead), which cost me a point: I scored five out of six.
The test gives a free point to patients who have less than a high school education, but I have a college degree.
The test typically takes 10 minutes; mine took seven.
Those scoring 26 and above are considered "normal," while "mild cognitive impairment" falls in the 20-to-26 range. Those who score below 20 usually have some degree of dementia, Pippenger said.
I scored 26 out of a possible 30. Not stellar, but not impaired, either.
"You can see how anxiety undercuts the test," said Pippenger, who didn't seem concerned about my score. Self-consciousness can interfere, he said, noting that he has a patient with a learning disability who typically places in the high teens. But once, when some student doctors observed his test, he scored an eight.
"If a patient scores normal on the MoCA, you can just about guarantee they are totally normal and there's no real use in doing any scans," Pippenger said, adding that most of the patients he sees are reassured by that.
TRYING TO FAIL
The other end of the spectrum? "I've seen people who've intentionally tried to fake it," he said. "Some go online and read up about the test and how to fail it."
Why would someone want to be diagnosed with a mental illness? Besides those who've been charged with crimes and are trying to avoid serving time?
"Possibly they are beginning to struggle at work as their bosses want them to use more modern technology, such as using computers more, and they're looking for a way to get out of having to do so," Pippenger suggested. "If they can get a diagnosis of dementia, they can go on disability or retire early."
But those trying to feign the illness will be caught, he said. "We know they are faking if they score too low because, thanks to random chance, even a demented person will get some questions right; no one will get every question wrong," Pippenger said. And forensic neuropsychologists are trained to detect those who are faking mental illness.
OTHER TESTS
Although the MoCA test is protected by copyright, the exam and the instructions for giving it are free and accessible to those in the medical field at mocatest.org. It is offered in 35 languages or dialects and includes three alternate forms in English. In addition to the original MoCA test, there's an alternate version that is slightly different and another, similar test called the Saint Louis University Mental Status Examination (SLUMS). Both tests are copyrighted but free for medical technicians to use.
"For some patients, we do a three- or four-hour neuropsychological testing; it's basically like a MoCA except it's more involved and detailed and it's three or four hours of it, and it's very expensive," Pippenger said. "It's only used when it's not possible to make a diagnosis with the MoCA test -- not for young people who test normal."
While the MoCA testing costs about $200 to $300 for the one-hour office consultation, the more detailed, three- to four-hour testing, which includes a neuropsychologist's interpretation of results, costs about $2,000.
WHAT ABOUT GENETIC TESTS?
Only one genetic test reliably identifies gene mutations associated with the familial form of Alzheimer's, a rare type accounting for about 5 percent of cases. It's also possible to be tested for a gene variation linked to late-onset Alzheimer's, apolipoprotein E (APOE).
Priscilla Pittman, program director with Alzheimer's Arkansas Programs and Services in Little Rock, said some of the caregivers she has met through her organization have expressed a desire to have genetic testing done on themselves.
"But we don't encourage that because there currently is no cure," she said. Available genetic testing is not "an exact science," she added. "There are people who have Alzheimer's, but they don't have the genes the scientists are looking for."
Pippenger agreed. "People come to see us with their test results in their hand and are convinced now they're going to get Alzheimer's," he said. But "a lot" of the people who don't get Alzheimer's do have the genetic variation, and a lot who do have Alzheimer's don't have the genetic variation.
Another biological measure for Alzheimer's is shrinkage of the hippocampal area of the brain, which can be seen on center brain scans, "but that test is also not very accurate, and we don't rely on that," he said. "In the future, we're going to see the spread of PET [positron emission tomography] scans to look for the development in the brain of amyloid plaques and Tau proteins," which some researchers have thought cause the disease.
"But the accuracy of these tests is very poor," he said.
Other tests can include a CT (computerized tomography) scan or, rarely, an MRI (magnetic resonance imaging), Pippenger said. While many doctors think an MRI is better than CT scan for ruling out something that can cause dementia, research suggests MRI is not superior to a CT scan, is expensive and more uncomfortable for the patient.
"Of the two, the CT scan is probably the best test to make," Pippenger said.
For now, the pen-and-paper cognitive assessment with a numbered score like that given by the MoCA is the standard test.
"It's been shown to have an extremely high sensitivity. It's earlier to report, and patients can be retested to see if they've gotten worse."
ActiveStyle on 07/13/2015