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Why the Alzheimer Diagnosis Tends To Be Incognito

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Alzheimer disease (AD) is the most common neurodegenerative dementia. It is also the sixth leading cause of death in the United States. Yet 6 out of 10 people with it don’t know that they have it because the Alzheimer diagnosis is missing.  The main reason for the latter is the failure of victims of AD to undergo the evaluation necessary for establishing the diagnosis.   

There are a number of reasons people with AD don’t undergo evaluation.  One has to do with the 3 different stages of the disease.  During the first or preclinical stage, symptoms are not present.  Therefore there is no reason to seek evaluation.  Other reasons lie within the psyche of the individual or concerned others. 

Another reason that individuals with a declining memory don’t see a doctor for the problem is because of the belief that forgetfulness is a normal sign of aging.  Others might think differently but when they point out their concern, denial sets in and reason heads out.

A common scenario is one in which a spouse or relative(s) notices a progressive decline in the memory of a loved one.  They point out there concerns, but each time they do the person with the problem becomes defensive and insists that nothing is wrong.  Of course, he or she rejects any notion of an evaluation for possible AD. 

Fear also tends to play a role in individuals not seeking evaluation for possible AD.  This is particularly true for the elderly whose main fear is loss of independence such as driving rights which tend to evaporate when the Alzheimer diagnosis surfaces.  There might also be the fear of how others will perceive them once the Alzheimer label is applied.

Probably more often than realized, people don’t undergo evaluation because of their forgetfulness.  They forget they forget.  Thus, they never mention the problem to their doctors.

In some cases individuals undergo an evaluation for forgetfulness. But the Alzheimer diagnosis might remain missing because the workup did not include the aspects necessary for making the diagnosis in that person.  Oftentimes, it is because the patient might mention a memory problem as an aside during a visit for something else.  In reality though the patient often needs a separate visit dedicated to the memory loss.  That way the doctor can get all the ducks in a row and act accordingly with respect to the evaluation.

Even a conscientious and appropriate workup will sometimes not yield a diagnosis of Alzheimer’s disease Alzheimer diagnosisbecause of the nature of the beast, if you will.  The absolute diagnosis of AD requires inspection of a section of brain tissue with a microscope.  That is because when Dr. Lois Alzheimer discovered AD he found some abnormal changes in the brain that are the hallmarks of the disease.  They are the presence of amyloid plaques in neurofibrillary tangles.  Unfortunately, proof that a person has these abnormalities in the brain entails a brain biopsy.  But nobody does them these days because of the low yield and risk of complications

Short of a brain biopsy there are other fairly reliable ways of making an Alzheimer diagnosis.  The history, physical examination and family history are helpful.  The neurological examination is particularly helpful when it includes the Mini-Mental State Examination (MMSE) – a questionnaire with some instructions for assessing cognitive function.  Patients who take the test register a score based on how well they do.  The maximum score possible is 30.  According to reports, the MMSE has a sensitivity of between 39% and 98%.  In conjunction with other aspects of the workup its reliability is fairly good.

Blood tests and scans of the brain are also helpful, but neither cinches the diagnosis of Alzheimer disease.  Rather, they help to exclude or establish other forms of dementia that might masquerade as AD.

The U.S. Food and Drug Administration (FDA) approved 3 special types of brain scans known as PET scans for evaluating patients with cognitive problems.  With respect to diagnosing AD they have a sensitivity of between 96% and 97% and a specificity of 100%.  But Medicare does not currently cover them.  Thus, perhaps the closest thing to a brain biopsy in terms of accuracy and reliability of results is not available to most patients because of the cost.

In some instances, even when the Alzheimer diagnosis is official, the victim and concerned others don’t fully comprehend the disorder for what it is, nor its implications.  One of the main reasons is a misconception of the term dementia, which in the mind of many, is distinct from AD.  They also believe it carries a more favorable connotation. What they often don’t realize though is that Alzheimer disease is not only a form of dementia, but the most common neurodegenerative type.  Healthcare providers sometimes unwittingly add to the confusion with their well-intentioned compassionate use of the word dementia as a euphemism for AD when communicating with patients and their family members.

At times patients create their own euphemisms for AD.  I remember a patient several years ago making an off-the-cuff reference to her memory as I was examining her during a follow-up visit for her high blood pressure and diabetes.  She then asked the question… “I don’t have old timer’s, do I?”  I shrugged off the question at the time. But in retrospect, she probably did.  If so, it wasn’t a normal sign of aging as I believe she perceived it to be.  I am not sure if “old timers” was a tongue-in-cheek alias she coined or if she really believed she had used the proper medical terminology.

The Alzheimer diagnosis is not incognito only when a person is living.  The mystery often follows one to the grave.  Autopsy rates have declined in the U.S. and many other countries around the world in recent decades.  As a result, the Alzheimer diagnosis is often missing from death certificates even though AD was the mode of departure.  I would venture to say that many elderly people whose death certificates don’t list the actual cause of death, in fact, died from AD.  In the minds of many of their loved ones the cause of death was old age.

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