Medicalization of the mind: The changing Alzheimer's guidelines

Diagnosis and misdiagnosis of Alzheimer's Disease

Posted Aug 24, 2010

Over the past year, the diagnosis and treatment of Alzheimer’s disease (AD) has moved to the forefront of the medical establishment and, in turn, the media.  In Spring 2010, the National Institute on Aging (NIA) and the Alzheimer’s Association brought together three workgroups to provide recommendations for changes to the diagnostic criteria of AD and a memory condition known as mild cognitive impairment (MCI).  The workgroups made recommendations to create a diagnostic category of “preclinical Alzheimer’s disease” in addition to MCI to define changes that occur prior to a diagnosis of full-blown AD. These recommendations were presented at the 2010 Alzheimer’s Association International Conference on Alzheimer’s Disease (AAICAD) in July in Honolulu. The proposed changes can be seen here. However the workgroup’s recommendations regarding the diagnosis and treatment of AD have raised outcries from numerous fronts questioning the workgroup’s conclusions.

Itself a controversial diagnosis, MCI is a descriptive term used to refer to a set of symptoms in people with increased risk for Alzheimer's disease. By no means do all MCI cases change from MCI to AD (only 10-15% progress to AD per year). With the proposed changes, before the appearance of any behavioral or cognitive symptoms a person could receive the dire and potentially inaccurate, name of "Pre-Clinical Alzheimer's Disease."

The press has recently publicized that these proposals suggest that biomarkers be used as the sole diagnostic tests for detecting Alzheimer's disease (see Vemuri et al., 2010). These proposals include detecting abnormal levels of neuroproteins in spinal fluid and PET scans to identify markers in the brain known as amyloid plaques. Needless to say, these tests are not generally available to diagnosticians because they require specialized equipment. What's more, the accuracy of spinal fluid tests ("spinal taps") to predict clinical signs of AD is unknown. Furthermore, spinal taps are invasive and themselves can cause discomfort or harm to the patient. Medicalization of the diagnosis of Alzheimer's disease implies that such invasive tests provide infallible diagnoses-- a claim that is far from legitimate. Researchers and clinicians in the National Academy of Neuropsychology are mobilizing a response to this change in diagnosis as are psychologists specializing in aging.

This July, the National Institute of Aging and the Alzheimer’s Association co-sponsored the International Conference on Alzheimer’s Disease.  Reports from the conference contained a “consensus” statement which concluded that physical and mental exercise as well as diet control are ineffective in preventing Alzheimer’s.   However, this was not a consensus because it was not a unanimous conclusion and the statement contradicts previous scientific studies which suggest that exercise and dietary intervention strategies are beneficial in the early stages of the disease.

If the AAICAD recommendations are followed, a scenario can emerge in which individuals with mild memory symptoms are subjected to expensive and harsh biomedical testing with methods that are themselves not proven to provide reliable or valid diagnoses. In fact, they could be given this testing even if they have no symptoms if it is concluded that they are genetically at risk. Then there will be nothing the patient can do but wait 5, 7, or 10 years for the “inevitable” to occur—the development of increasingly severe symptoms and death from the complications of the disease. But these biomarker tests have questionable accuracy, so the outcome is not inevitable. Some people will never get symptoms of the disease despite living in fear with the diagnosis for years. 

Well, there is one thing the patient can do according to these recommendations. Take the medications that the pharmaceutical companies are promoting as "treatments." Aricept, for instance, which is widely advertised on television commercials as a way to stave off the deterioration of the disease, is one such supposedly therapeutic agent. Unfortunately, the scientific evidence to support these medications is not compelling (e.g. Farlow et al., 2010). If they work at all, it is only for a short time and even then do not lead to complete remission of symptoms even temporarily. Furthermore, they carry with them uncomfortable side effects that may warrant against their use. (Note: ginkgo biloba won't help you either).

Why are respected organizations providing consumers with this unfounded advice? To find out, just "follow the money." The Alzheimer’s Association and even the National Institute on Aging are partnered with the pharmaceutical companies. It is the pharmaceutical companies who help support many of the Alzheimer’s Association and NIA studies, as can be seen for example here, (scroll down to “Study Funding”). In the Vemuri et al. (2010) study, funding was provided by the Foundation for the National Institutes of Health which coordinates private sector funding including some $27 million from major pharmaceutical companies including Eisai, makers of Aricept.  

Pharmaceutical companies have long been behind the hype surrounding the prevalence data for Alzheimer's disease. Their influence plays out indirectly through the Alzheimer's Association. The most recent report of the Alzheimer's Association from March of 2010 claims that there are 5.5 million Americans suffering from "dementia." Supporting data for these prevalence figures come from studies funded by the Alzheimer's Association—which as I showed above in turn has close ties to pharmaceutical companies. Though the Alzheimer's Associations in many communities provide valuable services, this self-promotion on the part of the national organization leads many skeptics to question the Association's motives if not their evidence. In addition, their rhetoric reinforces the view in the mind of the public that aging inevitably brings “senility.”

The National Institute on Aging itself was criticized as far back as 1998 by the U.S. Government Accountability Office (then called the General Accounting Office) for providing inflated estimates of AD’s prevalence in the U.S.  

There are good scientific reasons to question the report’s conclusion. Its own fine print states that many of the “5.5 million” have dementia due to other causes than Alzheimer's disease, though this nicety is usually lost in press reports. One of the most significant of these other causes is vascular dementia related to cerebrovascular disease. And how do we prevent many cases of cerebrovascular disease? Diet control and exercise are just two of these preventative methods. These methods can also contribute to the treatment of cognitive effects of depression in older (and younger) adults. Remember, the consensus statement discounted the value of such approaches.

Many unconventional approaches are also being shown to have beneficial effects even with patients suffering from advanced cases. These include humor, art therapy, art appreciation (see below), and dance and music therapy.

What can you do to stop the medicalization of your mind and the chances that your occasional memory slips will require you to have a spinal tap?

1. It's time to start getting the word out. Publicize to your family, friends, and colleagues. Please consider tweeting this blog post.

2. Don't take medical advice at face value. Read the fine print. Read the critiques. Wait until the evidence is in before you follow any recommendations-- often, as happened with an experimental drug being developed by Lilly recently, clinical studies show few, no, or even ill effects.

3. Challenge your own physicians. Don't accept a diagnosis of Alzheimer's disease based on a simple test performed by a family physician in his or her office.

4. Seek psychological assessment and treatment. If you or a loved one are experiencing symptoms of what you think may be Alzheimer's disease contact your local or state psychological association for referrals.

5. Write to your congressional representatives. The cost of these medical procedures and medications are astronomical and will contribute immeasurably to our nation's mounting health care costs. You can also contact the U.S. Senate Committee on Aging.

6. Request that a health care professional send comments directly to the Alzheimer's Association now.

At the August meeting of the American Psychological Association, groups of concerned psychologists from the fields of cognitive aging, neuropsychology, and clinical psychology have started to band together to construct a response to these efforts to medicalize the mind. We won't have the rich backing of the pharmaceutical companies to make our case. But be assured that we will be getting the word out, loud and strong.

Follow me on Twitter @swhitbo for daily updates on psychology, health, and aging. Feel free to join my Facebook group, "Fulfillment at Any Age," to discuss today's blog, or to ask further questions about this posting. 

Copyright Susan Krauss Whitbourne, Ph.D. 2010

Follow me on Twitter @swhitbo for daily news on psychology, health, and aging. Visit my website at www.searchforfulfillment.com for more resources. Check out the Weekly Focus for more background on today's blog topic. 

 

Susan is the author of 15 books including her most recent book, "The Search for Fulfillment."

Copyright Susan Krauss Whitbourne, Ph.D. 2010

Artists for Alzheimers. 

Farlow, M.R., Salloway, S., Tariot, P.N., Yardley, J, Moline, M.L., Wang, Q., Brand-Schieber, E., Zou, H., Hsu, T., Satlin, A.(2010). Effectiveness and tolerability of high-dose (23 mg/d) versus standard-dose (10 mg/d) donepezil in moderate to severe Alzheimer's disease: A 24-week, randomized, double-blind study.Clinical Therapeutics, 32,  1234-1251.

Gilstad, J. R., & Finucane, T. E. (2008). Results, rhetoric, and randomized trials: The case of donepezil. Journal of the American Geriatrics Society, 56, 1556-1562.

The Hearthstone Foundation.

Shabahangi,N., Faustman,G., Thai, J.N. and Fox, P.(2009). Some observations on the social consequences of forgetfulness and Alzheimer's Disease: A call for attitudinal expansion,Journal of Aging, Humanities, and the Arts, 3:1,38-52. To link to this article: DOI: 10.1080/19325610802652044

Vemuri P., Wiste H.J., Weigand, S.D., Knopman, D.S., Trojanowski, J.Q., Shaw, L.M., Bernstein, M.A., Aisen P.S., Weiner, M., Petersen, R.C., Jack, C.R. Jr; Alzheimer's Disease Neuroimaging Initiative. (2010). Serial MRI and CSF biomarkers in normal aging, MCI, and AD. Neurology, 75, 143-151.


Zeisel, J. (2009). I'm still here: A breakthrough approach to understanding someone living with Alzheimer's. New York: Penguin/Avery.