Will New DSM-5 Diagnosis End 'Dementia' Stigma?

If one day I get diagnosed with Alzheimer's or another type of dementia, I don't want to be told that I am "demented," or that I have "dementia."

Dementia is a loaded word, one that carries with it the baggage of hundreds of years of gross associations and misunderstanding of the reality of the person living with the illness. Google the word "dementia" and you get right to its Latin root: originally meaning "madness," from de- "without" + ment, the root of mens' "mind." Similarly, "demented" is synonym with "mad," "crazy," "insane," "lunatic." An estimated 5.4 million Americans are currently living with Alzheimer's dementia, that's a lot of people unjustly deemed crazy... From calling those folks insane, to treating them as such, only a fine line that gets easily crossed, both at home and in institutions.

Recent attempts to be gentler and more accurate in the labeling of the condition have not been successful. "Memory care," the current, more politically correct way of referring to dementia care, fails to capture the full range of cognitive deficits associated with dementia -- deficits in the areas of attention, planning, decision-making, language, construction and visual perception, social cognition, learning and yes, memory also. Furthermore, for some dementias -- vascular, frontotemporal, Lewy Body, etc,, memory loss is not even the primary feature.

Hope is on the horizon thanks to the work from the DSM-5 task force, a select group of mental health experts responsible for updating the DSM manual. The Diagnostic and Statistical Manual of Mental Disorders (DSM) is the reference book used by medical and mental health professionals to diagnose Alzheimer's and other types of dementia. Proposed changes include replacing the "dementia" name in favor of the new term, "major neurocognitive disorder" (MNCD).

Along with the renaming is a more sound rationale for the criteria used to make the diagnosis. The DSM-5 task force says:

• This rewording focuses on decline (rather than deficit -- consistent with the requirement in the basic definition of an acquired disorder) from a previous level of performance.



• The previous criteria for dementia used Alzheimer's disease as their prototype and thus required memory impairment as a criterion for all dementias. There is growing recognition that, in other neurocognitive disorders (e.g., HIV-related cognitive decline, cerebrovascular disease, frontotemporal degeneration, traumatic brain injury, etc.), other domains such as language or executive functions may be impaired first, or exclusively, depending on the part of the brain affected and the natural history of the disease.



• The new definition, consistent with DSM-wide changes, focuses first on performance rather than disability.

I like that. Imagine being in the neurologist office now, and the doctor gives you a major neurocognitive disorder diagnosis. The blow is still going to be hard, but not as bad as being hit with the D-word. I find it heartening that the medical profession is finally acknowledging the pejorative or stigmatizing connotation of the word "dementia." The DSM-5 is scheduled for publication in May 2013.

While the transition to the new manual will take time, one can only hope that the new formulation of dementia as NCDP will be quickly embraced by key influencers in the heath care system: insurance companies, hospitals, geriatricians, psychiatrists, neurologists, primary care doctors, nurses and social workers. It will also be up to the media to broadcast the new wording and to explain its significance to the lay audience, particularly family members. One single word can go a long way towards removing some of the fear that is currently infusing the landscape of dementia care at home. The mental health of those with the diagnosis depends on it.

Ten, 20 years from now, we will look back and regard "dementia" labeling as one of our greatest acts of insidious cruelty.

For more by Marguerite Manteau-Rao, click here.

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Comments

[defortier]

08:43 PM on 04/13/2012

Between the few comments below, and the several I read where this was posted at LinkedIn, it is clear that confusion reigns even among those who are engaged with this topic. Dementia is not a disease, it is a description of a threshold of impairment, usually caused by a disease or medical condition. The DSM publication should take great care to clarify as much, regardless of which new name "the experts" choose. I know that many doctors offer "dementia" as a diagnosis but in reality, there must be a true, underlying diagnosis that is causing the impairment we describe as "dementia". I think the solution is to tell the patients what disease or condition they have (Alzheimer's disease, Parkinson's disease, stroke, Lewy Body, etc.) and let the terms of severity (mild cognitive impairment, dementia, major neurocognitive disorder) remain as "non-labels". We discuss similar topics thoroughly at the Brain Today blog: www.braintoday.com.

[Marie Marley]

04:51 PM on 04/07/2012

This reminds me of the change made years ago from "Manic Depression" to "Bipolar Disorder." That is certainly a good thing for people who have the disorder. I agree "dementia" has a stigma attached to it and being told you or a loved one is "demented" sounds horrible. The only possible problem I see is that I'm not sure that either "Major Neurocognitive Disorder" or the acronym, "MNCD" is going to roll off the tongue as easily as "dementia." It would be great if they could come up with a shorter name for it.

[Michael Roy Ames]

02:37 PM on 04/07/2012

Pretty much everyone on the planet knows what Alzhiemers Disease is... and most know what Dementia is. These are the labels we use and understand. Labeling something is not cruelty, it is the opposite of cruelty, it helps us understand what is happening. Changing the label won't change peoples' reaction to their diagnosis. Dementia *is* an awful disease, and naming it something different won't make it any less awful.

[winkpc20]

12:46 PM on 04/07/2012

My wife died last year after a more than 14 year battle with Early Onset Alzheimer's Disease, which is dementia. I have noted that many fear to describe their loved one's illness as Alzheimer's Disease. My view is that this recitance only serves to mask the enormity of the problem. When over half a million our country suffer from EOAD and over 5 million from AD, it is high time that federal support for research in this area is increased considerably. This research is currently very much underfunded and our country is not facing up to the terrible suffering and enormous cost caused by this disease. It is too late to do anything for my wife, but each of us (or one of our loved ones) could well be next. As with so many other things our politicians voice concern about the problem, but they fail to put the money where their mouths are.

[Vinivixen]

03:49 PM on 04/06/2012

Finally it boils down to semantics unfortunately - major neurocognitive disorder" (MNCD). . How does the lay person react to the condition? That's the moot point. You can label it how you want, finally it boils down to people's reaction