Sticking Their Neck Out, Brewing up a Storm!

My title refers to the recent announcement by the Alzheimer's Association and the National Institute on Aging (NIA) of the National Institutes of Health (NIH) changing the criterion and the format for diagnosis of Alzheimer’s Disease. They are sticking their necks out and they are inviting a storm with this.

I am discussing this topic again as I did two days ago. It is so noteworthy and I congratulate the three organizations for their fortitude in making the change. What was done is described in the following quote taken from one of two articles I have posted on my Archive today

Currently, Alzheimer's therapies are in development that may be able to slow or stop the progression of the disease. By improving early detection and risk evaluation, we will better be able to test potential therapies and eventually prescribe them for people at increased risk. Ultimately, this approach envisions for Alzheimer's what is now common practice in cardiovascular disease, where early signs of risk – for example, in genetic markers or in blood cholesterol and/or blood pressure levels – can be treated to reduce the likelihood of heart attack or stroke later on

The two articles posted are:

            1.    

New Criteria for the Diagnosis of Alzheimer's Disease Published for First Time in 27 Years

2.     Caution urged over U.S. Alzheimer's guidelines

(Click on each to go to the Archive to read it)

 

The storm brewing is described it the second article, “Caution Urged.” That article describes at least one Canadian response to the change that is the same I have seen often in the U.S. when the topic of Earlier Detection Earlier Diagnosis is discussed.

The accelerating U.S. criteria might label and stigmatize people as Alzheimer’s sufferers who will never develop the disease, says Debbie Benczkowski, head of the Alzheimer Society of Canada.

The impact of the statement is manifested by the source. It comes from the head of Alz.Soc. in Canada. This same issue will be raised and debated in the U.S. as the public and professions realize the breadth and change that is in process here in the United States.

The argument revolves around this: Currently so much of our society in the U.S. have the impression that AD is the disease suffered by that fellow standing in the corner talking to himself, trying to find his way out. This is Stereotype; it is not all people who have AD.

There are so many in the Early Stages of the disease who are limited but well able to care for themselves with little or no help. They are the vast group named by the common reference: “You would never believe looking at him that he has AD!

It is this group that is short changed by the stereotype. In our coulter they receive no notice, worse they receive no concern. They are functional and left to their own with no programs. With programs, with help they are a group with whom much can be done to prolong their downward progression. Their cognitive acuity can be enhanced and their quality of life enhanced.

It is this group that is overlooked, they don’t fit the stereotype and the medical profession is slow to diagnose for fear that a diagnosis places a curse over them. Therefore diagnosis it too often overlooked or delayed to the point that little can be done for them. This is a loss, a loss for them and a loss to the community because the community must then face the cost of institutionalizing them as soon as they are financially devastated by paying it themselves.

So the question becomes, which is the better? Spare the patient from too early a diagnosis and protect her/him from the stereotypical classification, or forge ahead and live with whatever consequence because this will more likely stem the progression of larger numbers who can be treated.

This seems simple enough.

We should change the stereotyping of the disease, perhaps change the name putting Alzheimer’s out of the picture, do something to promote the understanding that all but those in the later stages of AD are not the incoherent lost mass that most believe all AD Patients to be. This is the easy part.

The harder and more perplexing part is this. A preclinical diagnosis, an early detection diagnosis statistically classifies the person receiving it as being at high risk or beyond risk.

This classification closes out all possibilities of changing or writing new health and/or long term care insurance, life insurance, and employability on current employment and any other employment.

It is this paradox needing resolution that keeps too many away from diagnosis now and will go to war with any change.

Is it possible to resolve the paradox?  If not which is the better option? This proposition raised by this paradox defies justice and equity!