Sunday, 1 March 2015

MS as a Dementia.. its all in a word

Westervelt HJ. Dementia in Multiple Sclerosis: Why Is It Rarely Discussed?Arch Clin Neuropsychol. 2015 Jan 24. pii: acu095. [Epub ahead of print]

Cognitive deficits in multiple sclerosis (MS) have been well studied in decades of MS research. Severe deficits are acknowledged, but the frequency is minimized in the literature, and there is a striking lack of discussion of the presence of a dementia state in MS. 

Never one to avoid controversy, ProfG has termed MS as the "shredder" and a "dementia" and has been heavily chastised for this. 

Although MS is often described as a movement problem, it is being increasingly realised that cognitive deficits can be among the earliest symptoms described in people with MS and can be reasonably common.

In this article it argues that whilst some doctors may use“dementia” interchangeably with “cognitive impairment,” its use in circles of MS is relatively rare. One reason, may be that “dementia” is often thought of as being associated with ageing or the aged and is often used among lay people as being synonymous for Alzheimer's Disease.  


Another factor, which likely contributes to the lack of identification of a dementia state in MS is the growing and intense distaste for the term itself. Whilst the label was not intended as derogatory, over time the pejorative connotation has taken hold, and overshadows the intended medical meaning. People do not like to be labelled.
It is argued that replacing the term “dementia” may ultimately be a short-lived prospect. Terminology for conditions affecting intellect, cognitive capacity, psychological well-being, or behavioural control seems ultimately doomed for pejorative misuse in the vernacular, such as  
“imbecile,” “idiot,” and “moron” were once medical terms that became corrupted over time and it would be unthinkable for a neuro to refer to their patient as an "Imbecile". 

It was suggested that descriptive terms that can be shorted to non-catchy acronyms may fare best in regard to avoiding lay corruption (e.g., varying degrees of MS-Associated Neurocognitive Disorder =MSAND).

What do you think?

20 comments:

  1. With MS we have to deal with a huge list of grim symptoms. We see images of people in powered wheelchairs, photos of an MS shrivelled brain, stats on the high levels of unemployment, high levels of divorce, a life which will be shorter that the average. Give all of this, many MSers have to deal with anxiety and depression. It's not surprising that we become frustrated that Prof G keeps referring to dementia - another gift from this grim disease. How do you expect us to respond? When we react you always mention the need for honesty, not seeing the disease through rose tinted glasses etc. when i was diagnosed over a decade ago the neuro just referred to e disease as an autoimmune disease which targets the myelin - sugar coated? May be. But I'm a lot more anxious about the future having followed this blog. Too many researchers are doing too much navel gazing. Too much time spent debating the names of symptoms (cognitive impairment or dementia). Surely research should be focused on what are the mechanisms which are destroying MS brains and how can these be stopped / reversed. The work you are doing on an anti-spastic treatment is excellent. Please focus more on this sort of research. It gives me hope. The message that MS will also give me dementia gives me no hope as there's nothing I can do about it (until the research community can serve up some neuroprotective therapies).

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    1. I have too agree with you. Where is the hope? No deadlines / timeframes are ever given as to when the good times will come. Charcot project now seems to be delayed - i was hoping to hear something at the next research day. I don't want to chastise Prof G for using dementia or shredder, but what good does it do me. I still have to continue with my life as best I can. If a fellow human being fell in the lake, the Prof G approach is to shout out "you lungs will fill with water.. Your brain will be starved of oxygen...." I need someone who will throw me the life jacket, call the emergency services and then jump in an pull me out. For too long too much research has been focused on what researchers want to research not what MS patients want. I like the reference to navel gazing. We really need more doers than thinkers in MS research.

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    2. To be fair, even if someone threw you a life jacket, Prof G would be standing on the side telling you to drown rather than risk using it, as it's not been through a double-blind randomised controlled trial against a pair of armbands. :-)

      Jesting aside, I do agree it would be cool to get some kind of update on the blog around what to expect and when (i.e. a timeline of key studies in progress and when they'll be reporting).

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    3. If we knew what to expect, we wouldn't bother doing the trials.

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  2. I objected to promoting the use of dementia to describe the neurocognitive impact of MS because I believed it could be interpreted negatively by employers / others and further damage employment prospects. That's not to say I want to stick my head in the sand about the long-term prognosis of MS if left untreated and it's vitally important for all neurologists / CCGs etc to understand the importance of treating early.

    Dementia as a word carries huge emotional baggage amongst the non-medical population. Using MSAND rather than dementia might seem like semantics but I agree that it might not be misused or misinterpreted in the same way as dementia.

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  3. ... and, perhaps additionally, research on what enables people to live positively with ms would be interesting. in psychology, we have moved away from a deficit-oriented approach to an idea of "positive psychology", looking at peoples strength and abilities to deal with difficult life issues. of course, with something like ms, it makes sense to research and deal with negative effects of the condition. but participating in online patient groups, I get a feeling that resilience is a trait perceivable in people with ms also and that it contributes to overall quality of life and perhaps even a little to the state and development of ms - so if such personality traits or abilities could be discovered and strengthened, that would be very useful, also.

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  4. I think the disease should identified by what it is which is multiple sclerosis. Dementia is a progression of cognitive changes due to aging. I think that the cognitive results of dementia and MS might share some features but they are not the same process. This is why dementia and Alzheimer's disease are not interchangeable (today) as it has been recognized that Alzheimer's has a different mechanism.

    So maybe the focus should be modifying the definition of what MS is which would include early cognitive decline due to a neurodegenerative process.

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    1. I'm inclined to agree with this comment and the next one. I think the risk of using dementia as a term in relation to MS caused cognitive impairment (of any degree) is that it will get lumped in with the other dementia types (e.g. Alzheimers and ischaemic brain problems etc ) and thus fly under the radar. Far better that it be recognised as being MS caused/related, as if there is to be any research on it, or any treatments developed to help deal with it then it needs to retain its own "identity", especially if it is shown that the underlying causative processes are different to the other types of dementia. If in the future treatments are developed from research relating to other dementia types but which have potential for MS related cognitive problems they can be specifically trialled for MS patients. Yes - I know that this could extend the availability of such treatments for MS patients by some years, but clinicians could always try them off-label for MS patients.

      If cognitive problems are caused by someone's MS then I'm fine with it being "labelled" along the lines of MSAND as suggested above by MD.

      Are there any protocols or guidelines for checking that cognitive problems in MS patients are actually caused by their MS and that they are not suffering from one of the other conditions which can cause dementia/cognitive problems?

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  5. Definitions :
    1.Dementia is a decline in cognitive function that impairs the ability to perform activities of daily living. Any cognitive domain can be involved, but memory is the most common.
    2.Mild cognitive impairment is a diagnosis made when a measurable cognitive problem does not lead to problems with activities of daily living.

    Now, take your pick... which one is the right description for most MSers. I do not doubt that for some people with advanced disease and severe cognitive problems 1. would be the right label. But so it is also for some older people without MS. For most MSers dementia is not the right term.

    So please stop making a mountain out of a proverbial molehill. The molehill is there, I don't deny its existence.




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    1. blurring the lines between MS and dementia doesn't do much good to anybody and can create more chaos medically.

      I think Prof G wants to capitalise on the dementia research which seems to be more advanced but although there seems to be an overlap due to neurodegeneration and aging those two diseases are not the same.

      I think the majority of MSers have mobility problems when they hit the progressive stage with cognitive problems rating far behind.

      Personally, I would rather have some mental fog than walking problems but unfortunately it's just not the case.

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    2. Everyone is different and my legs and cognitive impairment showed up around the same time. Its getting worse and to me it DOES seem like dementia

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  6. A rose by any other name would smell as sweet. Call it anything you want. With PPMS, I have issues with mobility and am not aware of any cognitive, memory or intellectual impairments so far. Thankfully. Perhaps I am well protected by becoming fluent in a second language, my study of science, playing a musical instrument, or all the green tea I drink. But I have seen the images of scars on my brain and I have looked this disease in the eye every day for a decade and a half, so none of the words or acronyms can scare me.

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    1. How many lesions do you have?

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    2. It doesn't matter in the least how many lesions you have in white matter, it's mostly in the gray matter and in fact starts there.

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    3. Surely the number of white matter lesions affects your cognitive function most? Do you not think so?

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  7. Cognitive problems have basically destroyed my career, and it would make people more aware of what MS really does if it was labeled a form of dementia. I think the daily living thing is a bit vague, and need a definition. If it means you can't do your job properly then that is daily living to me. Also I don't think a lot of Neurologist appreciate the ways in which MS cognitive changes can destroye someones career. I used to do research, but now I can't because I cannot concentrate or do enough work to keep up. Also, issues like anxiety and word finding stop me from public speaking, which is required for research. I only wish someone would find a solution to the MS cognitive problems. Wheelchair I could cope with, not being able to do what I love (research) is something I can't cope with.

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    1. Hear, hear.
      I need my brain to earn my living (albeit only part-time these days). I could still do this if my legs were totally stuffed (technical term!) although I'd need to move house to somewhere with no stairs/steps. If my brain becomes badly affected by cognitive problems then I become a bit of a lost cause - unable to work, and more of a financial burden on society if I can't work, and would find it extremely difficult to cope with knowing that my marbles are disintegrating. I've heard it said that people with Alzheimer's find the worst place to be is that in-between stage where you still have enough mental capacity to know that you are losing your mind. I don't want to go there - ever! By comparison, needing a wheelchair would be a relatively minor "inconvenience".

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    2. Same here, I was a dental assistant for many years. Cognitive, walking issues and continuous kidney infections are what put me out of my work but I hung on to the very end and just couldn't anymore. My boss held my job for about 2 months but just could not.

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  8. Cognitive deficits need to be addressed and acknowledged…………….IT IS WHAT IT IS. I wish we could continue to deny the reality of PPMS. I have a science background and I am so aware of my pre MS brain and now my over 30 lesion load associated with brain atrophy. I used to draw and paint beautifully but now I have extreme difficulty with motivation, apathy, brain fog and memory. Who wouldn't be depressed? And this is a normal response……. I hate it. But this is my reality and I know we do not want to scare the newly diagnosed with MS. I do not want to tip toe around this reality of neural degenerative problems……………because we have not definitively found a cause of MS or a cure? So sorry that this is a problem for many. I get it. I too, have problems with wrapping my diminutive brain around this. Please take care with this reality I mean no disrespect.

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  9. When I can no longer remember my own name, or who I am, then it will no longer be cognitive impairment but dementia - until then - happy days. From one old bird with cognitive function deficits.

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