Should We Drop “Dementia” from the DSM-5?

     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, Americal 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!

About Dr. Allen Power

G. Allen Power, MD is Eden Mentor at St. John’s Home in Rochester, NY, and Clinical Associate Professor of Medicine at the University of Rochester. He is a board certified internist and geriatrician, and is a Fellow of the American College of Physicians / American Society for Internal Medicine.
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19 Responses to Should We Drop “Dementia” from the DSM-5?

  1. Laura B says:

    I like “cognitive disability” better than “dementia.” It certainly would be a lot easier to explain to people the difference between Alzheimer’s disease and dementia! But I agree that any change needs to take place through collaboration, with thought given to the impact on the person with “xyz” cognitive disability, on diagnosis, on WHO gives the diagnosis (if it’s delisted from the manual altogether), to the impact on fundraising for the various associations of diseases that cause cognitive disabilities, to the media, the government… right now there is some impetus to creating national strategies to deal with “dementia” but would there be the same impetus to creating national strategies to deal with “cognitive disabilities?” Would a move to such terminology create islands of all the organizations that deal with the individual “dementias” ?

    I definitely don’t like the terminology of the DSM — way too wordy and a killer for any media efforts targeted to reduce stigma. In addition, a “minor” neurocognitive disorder might be seen as just that — minor — and not dealt with in a serious way by the practitioner.

  2. Mira Karell says:

    As a layperson I would just note the danger of removing meaning in the attempt to remove stigma. I used to understand “manic-depressive” immediately; it took me awhile to learn that “bipolar disorder” is the modern term. So sterile, for the average person anyway.

    “Cognitive disability” would seem to apply to a lot of different problems.

    I like “forgetfulness.” Doesn’t sound very clinical but that’s a point in its favor!

  3. Liz Angel says:

    Hi everyone, although this is my first post on this site, I have been reading changing ageing stories and posts for some time from Australia. I am always very interested to hear people’s ideas and appreciate the way it makes me question my own thoughts and ways of working. I was wondering if the term ‘cognitive impairment’ might be less stigmatizing still to ‘cognitive disability’. It is my impression that an impairment is less disabling than disability but has essentially the same meaning. Even though the impairment is chronic and disabling it still does not have that feeling attached to it that says ‘disabled’. Happy to hear others thoughts! Liz Angel

  4. Davina Porock says:

    I agree entirely with the viewpoint that dementia is not a good name since there are connotations of madness, insanity and even demons. I also agree that Alzheimer’s is very stigmatized and extremely dominant creating a situation where other causes of dementia are not recognized. So …to the task of finding a new name. Neuro-cognitive impairment seems just a little bit redundant – neuro AND cognitive? Forgetfulness is only one of the issues for the person with dementia so is not comprehensive enough. I think I am probably going to fall into the camp of cognitive impairment as an umbrella term.

    Under cognitive impairment comes all sorts of primary and secondary impairment though from congenital developmental delays to acquired brain injury to organic brain disease… so is it accurate enough for good communication of the problems at hand?

    On the other hand, there is a lot of inaccuracy in diagnosis in general. Diabetes for example – we know what that means but it covers a number of conditions and is somewhat stigmatizing. Cancer – we think we know what that means but it covers an extensive multitude of conditions and is also a stigmatized term. So maybe cognitive impairment is ok as an umbrella term. We may have missed the boat though with DSM-5 (notice the loss of Roman numerals too!) coming out early next year.

    I think we should all review Jesse’s blog on the medicalization of dementia/Alzheimers’s.

  5. Mimi DeVinney says:

    Liz voiced my thoughts about “cognitive disability”. “Cognitive impairment” seems gentler. Maybe “progressive cognitive impairment” would capture the spectrum of levels of ability. “Forgetfulness” doesn’t seem to do justice to the damage caused by advanced dementia. How about “cognitive perception syndrome”?? The public seems inclined toward “syndromes”.

  6. The problem with any of these labels is that people hear them and then interpret the label in their own biased way. Failure to see the specific difficulties the person is having can prevent understanding of both compensatory and remedial strategies that can help. If you know the person has short term memory loss you know you need to find practical ways to work around it. If the person has problem solving difficulty or problem focusing or word finding problems you know how to work with them in a practical way. You then tend to see the rest of the person in a more wholistic way. It is more like seeing that a person limps or has hearing difficulty or cannot see at night. It is at least partially the vague and frightening unknown about dementia that contributes to both the bias and stigma as well as largely hopeless attitude about dealing with it. The more we understand what IT really is, the better chance we have of using behavioral, remedial, and compensatory strategies effectively.

  7. Hello, when someones are different from you, the majority of yous, the yours look for a short hand way of pointing out the diffferences as if the map was all the territory. Rathere than trying to understand the differences and focus on the sameness the yous do just the opposite. Convinced they can’t understand somone who is crazy, half empty, in the midst of the long good bye, the yours put a lot of effort into looking for the differences (they call them deficits) and in fact they keep a chart of the differences between others and themselves. And, if they have lots of letters after their name other with less letters start to adopt these deficit lists as their own.

    Whatever map we come up to describe the differences lists of the various forms of you know what it is still never going to be the territory, and certainly not ever ever (which is a very, very long time) going to capture all the territory.

    My belief is that medicine and psychiatrists live in this reductionists world where everything has a knowable first cause, and a way to alter through drugs that first cause event. This of course has never been true, and never will. So they devote a good deal of their time creating words about words, maps about maps.

    The real issue for us all is realizing that everyone is different and everyone is the same, both at the time time. And then establishing loving, mutually supportive relationships, and in the case of folks with apparent differences/disabilities enabling relationships the humanize both the giver and the receiver.

    Richard

    • Dr. Allen Power says:

      As always, eye-opening, Richard. Thanks so much for taking time out of a hectic week to add your wisdom to the commentary!

      I have also had a lively discussion on FB about the post, so with the responders blessing, I will copy-and-paste the thread here. I invited Schlegel Village’s Jennifer Carson to chime in with “WWFD” – “What Would Foucault Do?”, but my friends Jim Clare from Rochester and Laurie Calhoun from Chicago joined in as well:

      Jim: I grew up in an extended farm family. Two of my great aunts as they aged, developed a condition that the family usually described as “forgetfulness”. It was accurate, and seemed more gentle than describing the ladies as suffering from dementia

      Laurie: Dementia, to me, implies age and disrepair and the ongoing spiral of memory loss. Cognitive disability suggests hope via drugs or therapeutic intervention. either way, mental illness is so misunderstood by the culture. I don’t even like to call these mental tendencies illnesses. Untreated, perhaps. But sensitivity disorders for sure. And how are they different from an untreated broken arm? Well, insurance doesn’t cover much. Thanks Al!!!!!

      Jennifer: Al, you’re too funny, but you asked for it, so here are my first two sentences of WWFD: What Would Foucault Do? After exposing the cultural and historical relativity of the DSM, Foucault would critique its modernist knowledge claims, shining a light on how defective identities are constructed though classification, dividing, and self-subjectification practices. According to Foucault, today’s struggles “revolve around the question: Who are we? They are a refusal of a scientific or administrative inquisition that determines who one is.” (p. 331).

      Laurie: Can defective identities and “who are we” be the same? I would argue.

      Back to Jennifer: Laurie, I think that is often the case. But here’s our (postmodern) hope… Foucault teaches us that modernist forms of rationality, which serve to construct bodies of knowledge such as the DSM, “reside on a base of human practice and human history; and since these things have been made, they can be unmade, as long as we know how it was that they were made” (Foucault, 2000b, p. 94). I think there is some freedom in straying afield of identities determined by human sciences. Am I in hot water yet? I’m not saying human sciences aren’t useful to some extent, but I take their knowledge production with a grain of salt. This could be why I am 40 and still haven’t graduated. ;-)

      Laurie: Thanks Jennifer. I too believe that the language in science and the effort to classify can miss the mark, as identity is an interaction between self and surrounding.

      Jim’s back: hey you guys…I’m harkening back to Al’s blog for a second. Words are powerful by themselves, and never more so, than when they carry a stigma. That said, I favor the notion that the sciences should welcome new ways to define a condition as understanding of the condition expands. Where possible, that should include sensitivity to the impact of the word or phrase, among lay folk like me.

      Jennifer responds: I agree, Jim. That’s why I like Al’s understanding of ‘dementia’ as “a shift in a person’s perception of his or her world” (2010, p. 78). (Ooh, a citation of my book! ;)

      And Jim: Yes, I think so Jennifer. Al’s careful choice of words, imbues the definition with empathy, and further, at least for me, his definition diminishes any possible attachment of stigma to the circumstance. (Thanks so much, Jim!)

      Thanks, all, for your comments. I think Foucault and Richard Taylor might agree, but I’m not as knowledgeable as the rest of you.

      As you can see, FB can be much more than funny pictures of cats…

    • Thanks Richard – spot on. I would say that lessening stigma involves more than changing words. You have to change the underlying norms and social realities that the language is connected to. Where biomedical reductionism remains a primary means of defining and distinguishing the normal and the pathological, and where people make distinctions between each other based on things like productivity, ability & etc, I do not think changing the name of a disorder will lessen stigma for very long.

  8. The timing of your comments is quite astounding. Just yesterday I was at a ‘dementia’ conference and less than an hour into it I had to leave: the continual use of the word ‘dementia’, coupled with words such as ‘epidemic’ and ‘crisis’, was too painful to me. See, when I think of our elders who are forgetful – and to me forgetful also refers to forgetting some of our consensus behaviors and language use, not just memory loss – I think of names: Mary, Nick, David, Nancy, Tom, Bill. I think of how funny they are, how they make me slow down, how they push me to remember to smile, not to take life so seriously, to investigate more fully the question of Who I am. Yes, Foucault and Richard and Al and others are right: There exists a refusal of a scientific or administrative inquisition of asking such a question with all the depth and humanity it demands to be asked.
    You see, forgetfulness is a gift and there is a cure for it: I change the way I look at people who are forgetful, including myself. We live in a perceiver-dependent world where I create the world in which I live, where I ‘see’ what I have been taught, inculcated, really, to ‘see’ in a way that is reductionistic, that looks for shorthand labels rather than descriptions. I am part of this system myself, I do it myself.
    I will try to write more about this in the future but was so excited to see this post that I wanted to respond while sitting here with my early morning cup of tea wishing I could forget how jam-packed my day is with meetings and tasks to do.

  9. Very thoughtful post Allen. I want to give it some thought and maybe respond on my blog. In the meantime, I wrote a post on the DSM-5 changes about a year and a half ago when they were first proposed for the h-madness blog that you might be interested in looking at: http://historypsychiatry.com/2010/03/19/dsm-v-continuing-the-confusion-about-aging-alzheimer%E2%80%99s-and-dementia/

    I think the main points of difference are that 1) I’m less sanguine about reducing stigma over the long term by changing terminology. Where underlying social realities marginalize people and do not change, stigma will eventually catch up to any terminology you care to use. And 2), I also see the DSM changes as connected to the increasingly frantic drive in the field to early diagnosis and treatment. The new DSM categories are pretty frankly designed to facilitate that.

    What are the implications for person-centered care of a widespread early PET screening for amyloid to detect putative prodromal dementia states, followed by diagnosis and early pharma treatment?

    • Dr. Allen Power says:

      Great points, as expected, Jesse. You are absolutely right about stigma, which is the cloud that overlies all this parsing of language and “staging”. I see that this is exactly why my post went back and forth so much–because it’s only words until our attitudes and deeds reflect a true paradigm shift. It’ll probably be a long time before the DSM lists dementia (or anything else) as a “postmodern social construct”, but it’s worth talking about!

  10. Cheryl says:

    As a person with Partial Seizure lumping together the minor and major neurocognitive disorders doesn’t seem like a very good idea. There are to many other neurocognitive disorders besides Dementia and Alzheimer’s Disease to compensate for. Do we get to change our name to?

  11. Susan Troyer says:

    Only four weeks after returning to my home in Chicago, I found Dr. Power’s November 29th blog post, seeking reactions from readers regarding the removal of the word “Dementia” in the DSM-5. The timing prompts me to post this reflection as part of a personal rite of passage. I appreciate Nader’s words (posted above) which eloquently and simply capture the essence of my experience.

    In a 1998 return to my hometown to offer support to our parents after Mother’s diagnosis, I overheard a private and very profound conversation. Dad, gently and poignantly encouraging Mother: “There’s nothing wrong with you. You just don’t remember.” Following the diagnosis one year earlier, everything – yes, everything! – had already changed overnight. Without a manual or a role model to serve as a guide, Dad was, in his own way, making a life-affirming statement: “You are a person. You are not a disease.” Our unspoken mantra became, “It’s about dignity.”

    To me as a lay person, the word “Dementia” was less stigmatizing than “Alzheimer’s.” Except in communicating with medical professionals or to explore the services available in the region, I rarely used either label. Why? After we had isolated the “state-of-the-art med” as the cause of Mother’s anorexia, nurtured her back to her previous weight, and explored alternatives for her care, these labels were oppressive and dehumanizing. And in subsequent years, we fell through the cracks in qualifying for all services except for hospice in the end stage. So, these words (“Dementia” and “Alzheimer’s”) did not serve us in any way.

    With support from family members, I re-located my work so that I could be close. In response to the over-medicalization, we threw open the windows and turned our modest duplex into a bright, sun-filled, flower-filled, and intentional place of well-being. Music-as-medicine. Nutrition-as-medicine. Laughter-as-medicine. Photography-as-medicine. Storytelling-as-medicine.

    Mindful of due diligence, we met with specialists in the early years to be sure we weren’t “missing anything.” And, we punctually checked in for routine primary physician appointments. By a certain point in the early years, our main question became “why?” for each med. Under physician care, the layers were finally peeled away and both parents became almost totally med-free.

    We had a long run together in our “alternative” lifestyle. I think our uncommonly common Dad was “on” to something. The longer they were together, the more precious became our experience in being with them. Care partners who worked with us over the years commented often on the level of gratitude which both expressed for all assistance. Each was able to do so until their final hours.

    I am reminded of a line from a gospel song, “Fear builds walls instead of bridges.” Words can create fear and stigma. Or, words can build bridges and support the journey.

    Looking back to the late-80’s, I now recall conversations with a friend, Dr. Carol Farran, Rush University, regarding her research on “Hope and Hopelessness.” In deep reflection, I now believe these conversations influenced me a decade later at the time of Mother’s diagnosis. I only know that from somewhere deep within, I knew with all my being that we did not need to cave in to the culture surrounding this dreaded diagnosis.

    With little time for on-line research in that “pre-google” era, I was receiving a publication from the local Alzheimer’s Association. A Spring 1999 article, quoting Dr. Bill Thomas, is still at my desk: “People with Alzheimer’s . . . don’t need their memories or communication skills to have relationships with others. . . . A major blind spot for Westerners in providing care is our view of Alzheimer’s as a terrible blow. . . . Other cultures view caregiving as an opportunity to honor their elders for ‘who they are now’ rather than viewing them as a corrupted version of what they used to be. . . . We need to transform the way we think about and care for our elders.”

    These affirming words, filled with hope, resonated deeply. What we need are more conversations which build bridges and support the journey and fewer labels which create fear and stigma. The DSM-5 change is liberating.

    In this season of amazing contrasts of light over darkness, I am grateful for the work of Carol (“Hope and Hopelessness”), Bill and Jude (EdenAlt.org), Peter and Danny (“The Myth of Alzheimer’s”), Al (“Dementia Beyond Drugs”) and others who are helping to transform the way we care for our elders.

    You were on the mark, Dad. . . . Alleluia.

    • Dr. Allen Power says:

      Thanks so much for your comments, Susan, and for sharing your Dad’s story.

      I am also attaching, with permission, a comment from my old college chum (and medical illustrtor extraordinaire) Kirk Moldoff:

      Al,

      I really enjoy your blog. It’s incredibly well written and insightful.

      The stigma of the word. When my Dad was first diagnosed with dementia, the image that immediately appeared in my mind was that of a naked man running through the streets with a meat cleaver. Dementia, demented, Dr. Demento…or characters Vincent Price would have played. These were my associations with the word. The word meant to describe his condition seemed to have nothing to do with his real state of mind or description of his condition. In fact, I probably called you to explain the difference between dementia and Alzheimer’s.

      Your blog went to the acceptability of the term and your advocacy of culture change. I thought of the word I most associated with being unacceptable today-mental retardation. A search for the term and words for it led me to a discussion of “The Euphemism Treadmill”, coined by Stephen Pinker in his 2003 book “The Blank Slate”. The euphemism treadmill describes “the process for the process whereby words introduced to replace an offensive word, over time become offensive themselves.” Mental retardation was the example he used.

      To think that mental retardation was a word introduced in 1895 to replace older terms such as moron, imbecile, idiot…terms usually only used by Moe, Larry or Curly today, but in their day used to describe severity and age of development.

      As for my Dad, his “dementia” has remained about the same. Now with an aide that helps him in the morning, the husband of my mother’s aide, his mind has stayed as relatively sharp as it was. He is done with most of the gorpy drugs you suggested taking him off of. Scott (his aide) often talks to him in French while he showers and shaves. My Dad responds and teaches him French songs he learned in school. I never knew that he’d studied it. On Veterans’ Day, all you have to do is mention the poem “Flanders’ Field” and he will recite it to perfection…”you know, it was mandatory when I was a kid to learn it”. Socially he is fine. Readily admits he has short term memory loss, but is happy as a clam. He is, as you suggested, more comfortable watching old movies where he knows the plots, so that’s what we get him. He does watch the news, and may not remember what was on it, but strangely in a day or two he does. Ask him his dog tag number, or rifle number from WW2 and he recites it immediately. It’s really pretty amazing. But not demented.

  12. Kate Swaffer says:

    Hello, I would like to say I would like to re-iterate, and agree with many of the comments made by Richard Taylor, and also wish to express the ‘vague’ annoyance I feel about the conversations by others ‘about’ us, so often ‘without us’. This takes away from the focus of improving the care of people living with dementia. The delays in diagnosis are unacceptable, and the medicalisation of dementia takes away from our personhood. I have been working hard to live well with a diagnosis of younger onset dementia, and suspect if we remove the word dementia from the DSM5, and from practice in general, we may well increase the stigma, not remove it.
    I’m very pleased to have found your blog through an online friend and new blogger. Thank you for your insights.

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