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Kafkaesque Government Guidelines on Dementia

How the U.S. National Institute on Aging got it wrong on dementia

In 2011 the National Institute on Aging published a series of guidelines on dementia. They argued for biological determinism, where an organic disease causes dementia. The new insight—they argue—is that we can see the early changes before there are any signs of the disease. There might even come a time when you have the disease but not suffer from dementia itself. Which brings us another Kafkaesque moment from the government. The guidelines are an oversimplification and simply wrong.

Dementia is not one disease, and it might not even be a disease as much as a set of symptoms—perhaps a syndrome. What is interesting about these guidelines is how they were skewed in order to leave out the psychology of the disease.

The guidelines proposed an early, preclinical stage with no symptoms, followed by a middle stage of mild cognitive impairment and a final stage of Alzheimer’s disease dementia. The fear mongering might be implicit but not completely unpredictable. Associating mild cognitive impairment with dementia, where more than a quarter of older adults report some issues with memory, is an unconscionable bad science (correlation is not causation) and shows unscrupulously lack of moral or ethical standards.

In real science there are other such prodromes—early symptoms—for dementia, only one of which is memory lapses. An early symptom is depression. In the guidelines depression was completely left out. There is no mention of depression.

In 2010—before the guidelines were published—Meryl Butters and her colleagues from the University of Pittsburgh and the University of Toronto, Canada, reviewed 23 studies that followed around 50,000 adults in their 50s for five years. They found that depressed patients were more than twice as likely to develop vascular dementia and 65 percent more likely to develop Alzheimer’s disease than those who were not depressed. More recently, Deborah Barnes with the University of California, San Francisco similarly looked at 13,535 members of a health maintenance organization Kaiser Permanente—and found that older adults who suffered depression earlier on in their middle age, were three times more likely to develop vascular dementia.

We find these early symptoms with other brain diseases as well. The fact that we find similar early symptoms of depression for Parkinson’s Disease is a significant indicator that depression is a serious early symptom. In a review of 14 studies encompassing 1500 patients, AM Gotham from the University of London estimated that just under half of people with Parkinson’s had earlier symptom of depression.

In the guidelines there is also no mention of the role that white matter has in dementia and how cognitive training is the only effective intervention reported so far. Daniel George (Penn State) and Peter Whitehouse (Case Western Reserve University, Ohio) both champions of the psychology of dementia, argue for a more social and intergenerational approach to addressing dementia. This is an exciting agenda. Instead the guidelines represent a dying proposition of biological determinism that exclude social and environmental factors as reflected in the emerging science of epigenetics and neuroplasticity.

Garrett MD & Valle RJ (2014).A Methodological Critique of The National Institute of Aging and Alzheimer’s Association Guidelines for Alzheimer’s disease, Dementia and Mild Cognitive Impairment. Dementia: The International Journal of Social Research and Practice. DOI: 10.1177/1471301214525166 

© USA Copyrighted 2014 Mario D. Garrett

Mario Garrett, Ph.D., is a professor at the school of social work, San Diego State University.

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