Previously, I have been quite critical of the DSM-5 suggestion to introduce a new diagnosis–Minor Neurocognitive Disorder–on the grounds that it would create a large false positive problem and would lead to unnecessary worry and cost with no useful intervention. Even more ambitious and dangerous are the recently suggested diagnostic guidelines for Alzheimer’s created by a panel jointly sponsored by the National Institute on Aging and the Alzheimer’s Association. The proposal is a clear case of narrowly focused experts getting far ahead of the available technology to suggest what will be an enormously costly public health experiment with dire unintended consequences.
The goal of the proposed guidelines is laudable- to identify those at risk for Alzheimer’s even before clinical symptoms have developed and to intervene before the damage is done. The suggested guidelines would divide Alzheimer’s into 3 groups of ascending severity and clarity of presentation:
- Preclinical (ie, no symptoms, but positive laboratory findings)
- Mild impairment
- Classic dementia
The guidelines would recommend laboratory studies to make the diagnosis in the first 2 groups–either of which is currently considered an official diagnoses.
If we had well established diagnostic tools to identify preclinical and mild presentations, the guidelines would make great sense. Unfortunately, however, we do not yet have proven tests and guidelines that pretend we do are premature and reckless. Laboratory studies for Alzheimer’s are of recent vintage, tested only in small selected samples, will probably have huge false positive rates in the general population. Moreover, they are expensive and carry medical risks. None is near ready to be used in routine clinical practice– particularly in the general population.
To make matters worse (and the suggested guidelines even more ridiculous), there is no effective treatment for Alzheimer’s in any of its stages. So finding out that you are (only possibly) at risk for Alzheimer’s would provide little or no benefit — but would create needless worry, testing, treatment, expense, risk, and insurance and disability issues. The attempt to provide early identification with fallible tests and no effective treatment serves no useful purpose and can cause great harm not only to individuals, but also to public health policy. Scarce health dollars should not be wasted on what would amount to a frivolous public health experiment. First, let’s do the research necessary to prove the tests are sufficiently specific and to find medications that work.
How could such a bad idea be forwarded by renowned experts sponsored by august organizations? I have written on the tunnel vision of experts in any given area and their natural enthusiasm for pushing the boundaries of their disorder of interest. No doubt the premature emergence of these guidelines results from the great frustration we all feel at the slow pace of development of diagnostic and treatment tools for Alzheimer’s. Most of us expected there to be a well established laboratory test by now, and drug discovery has also been disappointingly slow. My guess is that the guideline makers hope to jumpstart the field by highlighting the potential of early identification. But this is definitely putting the cart before horse. Guidelines that will have great influence on how people live their lives and how the country will spend limited health care dollars must follow well established science and an inclusive public policy debate, not lead it.
I am convinced from my experience with experts that they act from naïve good faith that expanding their field of interest will be good for patients. They tend to be blind to false positive problems and societal costs because they are not trained to think in these terms– not because of conflicts of interest. But such naïve goodwill does not motivate the corporations that market drugs and diagnostic tests. There will be an explosion of testing and treatment if these guidelines are approved, much or all of it unnecessary and expensive—and some of it downright harmful. The medical/industrial complex will have a field day.
The suggested guidelines for Alzheimer’s are not yet official –so there is still hope. Given the great impact they will have on public health policy, they should not become official until there is a wide public policy debate with input and monitoring that reaches beyond the narrow group of experts in the field. Decisions on Alzheimer’s are too important to patients and public policy be made exclusively by experts on Alzheimer’s.