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Should We Drop "Dementia" from the DSM-5?

By Dr. Allen Power

January 2, 2013

Editor’s Note: This blog, posted on changingaging.org on November 29, 2012 by Dr. Allen Power, is being reposted with permission.

I was recently asked if I would be willing to write a blog post about the American Psychiatric Association’s plans to drop the word “dementia” from the 5th edition of their Diagnosis and Statistical Manual of Mental Disorders, due out next May. The new manual will replace “dementia” with two classifications: “minor and major neurocognitive disorders”.

This announcement has caused a good deal of advance consternation, and an article by geriatric case manager James Siberski in the latest issue of AgingWell (http://www.agingwellmag.com/archive/110612p12.shtml) highlights many of these concerns.

As you might expect, I have a lot to say on the topic. Would it surprise you to know that I am not totally opposed to the concept? It is a very complex issue, so I will try to tease out some of the nuances here. I will start by describing what I think is good about the decision, then address some of the concerns that have been raised, and some lingering concerns of my own.

The APA decision to remove the word “dementia” was a response to concerns that the term was contributing to the stigma of the condition. According to etymologists, the earliest English usage was in the early 1500s, taken from the Old French word démence, meaning “madness” or “insanity”. At that time, insanity was a concept applied broadly, centuries before cognitive disorders were understood and separated from psychiatric illnesses. (We still struggle with that separation today—see below.)

Is there stigma attached to the word “dementia” in our society? Absolutely! We see it every day, in all walks of life (though I personally have seen more stigma attached to the word “Alzheimer’s”). A lot of the concerns raised about the new terminology have been centered on the potential effects of removing a word that is in such common usage throughout society. This is the first case where my feelings are decidedly mixed.

In theory, I strongly support the word change, because I am a staunch advocate of culture change and I believe that language choices help define our worldview. This makes any argument about word familiarity less convincing in my mind. After all, the majority of people use terms like “difficult behaviors”, but I would never let that fact stop me from avoiding the term in my own speech and trying to convince others to change their language too. So if the word “dementia” truly creates stigma, we should be equally insistent on changing it as well.

I also do not necessarily buy the argument that the DSM changes will increase the workload of most clinicians. My psychiatric colleagues are quite faithful in reporting the various DSM diagnoses and axes on their consultation notes, but I don’t know many internists or other practitioners who ever bother to do that. In my practice, I described diagnostic categories like schizophrenia, bipolar disorder, etc., but I never wrote out the official classifications, nor did the people with whom I practiced. (The fact that the DSM on my own office bookshelf is the 3rd edition—released in 1980 and revised in 1987—is a testament to how often I pull it out for reference.)

Furthermore, we are required to update medical classifications all the time. New scales, diagnostic criteria, and terminology are constantly appearing in the literature. So I don’t buy the doomsday predictions of the extra work that this might create. And the directive to try and distinguish different forms of dementia is really no more than what we already do.
My last supportive comment is that this is coming out of our national psychiatric association, which to me represents a major step forward in their thinking. I have seen a lot of stigma come out of this body over the years and I applaud their bold step in addressing a major aspect of stigma head-on.

But I do have concerns. The first is that there seems to be no coordination of decisions that are made on such a large scale and affect so many stakeholders. Mr. Siberski makes the excellent point that major organizations (Alzheimer’s Association, NIA, CMS, American Neurological Association, etc.) continue to parse out and classify “dementia”, apparently totally out of the loop of what APA is doing. Why can’t these groups talk to each other about such a huge issue? If we really want to remove stigma, then such changes need to be part of a more global movement to reform our language, one that has the support of many such stakeholders. (A shining example of better collaboration is the document of new dining standards for nursing homes, which was developed in conjunction with regulators, physicians, dieticians, culture change organizations, etc., before it was released.)

I also have issues with the classification itself. The use of “major” vs. “minor” neurocognitive disorder mirrors the way the DSM has long classified different types of depression. This can be problematic, however, when there appears to be such a spectrum of ability, rather than two clearly distinct categories. It almost suggests two different disorders, and as the AgingWell critique mentions, it ignores the concept of “mild cognitive impairment”. Once again, given all the work going on with neurologists around classification of MCI versus dementia, there should be more communication and collaboration here.

Regarding the actual terminology, I am as yet undecided. “Neurocognitive disorder” is, in my mind, less stigmatizing than “dementia”, but it doesn’t exactly roll off the tongue, particularly for the general public. If we want society to move away from the stigma of the word “dementia”, we need to give them an easier term to substitute than this.

I have been slowly moving away from using the word “dementia” myself—not so easy when it’s the title of my book! I often say “cognitive disability”—I like the mindset that comes with viewing dementia as a different ability, rather than a fatal disease. I sometimes say “forgetfulness” and have friends who strongly advocate for the term. I agree it’s far less stigmatizing and helps you see the whole person, though I also understand others’ objection that these conditions represent far more than simple memory loss.

But while I struggle with better language choices, there is a word in the new DSM that bothers me a lot more than any of these: and that is the simple word another. Each description of the neurocognitive disorders contains the caveat that the symptoms must not be “attributable to another mental disorder” (my emphasis). This revives the debate of whether dementia should be considered a psychiatric disorder at all.

Just today, British advocate (and person living with “whatever-it-is”) Norm McNamara posted the question to his Facebook friends as to whether dementia should “come under the mental health banner”. The majority of respondents said “yes”, but I continue to have concerns.

I have expressed before that seeing dementia as mental illness is one of the factors that leads physicians to treat the experiences of dementia in a similar manner to psychosis. This is a huge problem, because there is no neurochemical basis for using these drugs in dementia. The delusions of schizophrenia result from up-regulated dopamine activity, whereas in dementia, dopamine levels are generally low to normal. So dopamine-blocking drugs (i.e., antipsychotics) should not be expected to provide a similar benefit—why does no one talk about this?? Furthermore, one does not have to be “psychotic” to have a different experience of her surroundings, if normal processing pathways have been altered or lost. This “mental disorder” view is a big part of why we are mired in antipsychotic drugs to begin with.

At the same time, I am not advocating for dropping this family of conditions from the DSM entirely. If someone expresses something that seems abnormal to us, our reference books should list all possible causes, whether psychiatric or neurologic.

And just to muddy the waters a bit more (as Jesse Ballenger pointed out after a recent post), seeing dementia as neurologic illness can also lead to an overmedicalized view of people, so terminology and classification are only a part of the larger problem of stigma.

Confused yet? I am! This is tough stuff, but we must do whatever we can to not make life more difficult than it needs to be for people living with dementia and their care partners. If forced to summarize all of the above musings into a set of recommendations, I would suggest the following:

1) Rather than simply coming up with their own terminology, the APA should consult with other major organizations, to try and find some consensus. Lack of common wording is ultimately more confusing to the public than any one term alone.

2) We should continue to challenge the use of the word “dementia” (which is indeed stigmatizing), but do so in the larger context of a re-vamp of much of our language around the condition, moving toward a discourse that better reflects and centers on the whole person.

3) We should continue to include this family of conditions in the DSM-5, and keep it in the section that lists neurologic, rather than primary psychiatric illnesses.

4) Both psychiatrists and neurologists need to bone up on the extensive literature around person-centered approaches to dementia, to help them continue to evolve their views, language, and approaches.

This is the beginning of a new dialogue on cognitive disabilities. Let’s keep it up!