Cognitive difficulties in MS are a major interest and challenge to people with MS, their family, friends and health professionals. There is a problem with the words used in this space. “Cognition” isn’t an everyday term and isn’t really a good label for the memory and concentration problems that people with MS can experience. But I do not feel that we should reach for “dementia” to fill this vacuum.
I do not support the use of the term “dementia” routinely in MS. The majority of people with MS I speak to don’t want to be labelled as having a dementia. Most people’s experience and understanding of dementia is of a rapid general deterioration of mental faculties, in elderly people, with intact physical function, and painfully obvious, severe failings in speech and memory, in cleaning and organising the house, in safety and family roles. There is often a shocking lack of awareness of these mental frailties. The drugs available offer only a brief slowing of progress to nursing home care. Whereas MS is a life-long disease, typically from early middle age, with cognitive difficulties that are initially hard to detect at casual observation. For many people, good function can be maintained for years. The disease-modifying drugs available are at least moderately successful and there is now an expanding armamentarium of more effective medication.
Gavin Giovannoni, who has generously (and possibly bravely) invited me to post these thoughts about “dementia”, has lobbied hard for the use of the term in the context of MS. He has recently published a manifesto “Should we rebrand multiple sclerosis a dementia?”.
Gavin’s argument rests on the criteria in the Diagnostic and Statistical Manual of Mental Disorders (DSM). This is a weighty tome published by the American Psychiatric Association which attempts to classify various mental conditions by describing them and giving them a number. Gavin quotes the fourth edition, published in 2000.
In fact there is a more recent 5th edition published in 2013. Dementia is no longer a classificatory term, now having been replaced by “Neurocognitive disorders” (NCDs), “in which impaired cognition has not been present since birth or very early life, and thus represents a decline from a previously attained level of functioning”. However, “the term dementia is not precluded from use in the etiological subtypes in which that term is standard”. So not for use in MS then. DSM-5 does have a term specifically for MS cognitive difficulties: “Major or Mild Neurocognitive Disorder due to Another Medical Condition”.
I don’t think that the DSM classifications are really helpful to people with MS, or those that love them, or those that have a professional role to treat and support them. But two middle aged professors arguing about terminology won’t get us very far. What matters is that the MS community knows that people with MS are likely to experience difficulties with memory and concentration. And that these will have significant negative impacts on their life and ambitions. That the particular pattern of slowed information processing speed and reduced memory is hard to pick up at work, in conversation, or in clinic consultations (one study showed that neurologist were at chance at detecting cognitive impairment at clinic visits). That cognitive performance level is linked to the structure and function of the brain (obvious, you’d think) and that as the brain atrophies, a normal ageing process that MS accelerates, so cognition starts to decline.
There is a list of things that people with MS can do to help protect their cognition from the ravages of MS,. These are all of the (boring) positive lifestyle choices that can be so hard to action. Less (or better no) smoking, less (or better no) alcohol, regular exercise, maintaining a healthy weight, being prescribed optimum disease modifying medication and taking it by the numbers, being prescribed optimum treatment for all other diseases (especially cardiovascular and diabetes). Particularly for cognition, regular challenging mental activity helps maintain clear and fast thinking.
The NICE Guidelines (2014) require that people with MS have an annual cognitive assessment and that cognition should be fully discussed with them by MS clinic staff. I am involved in a project to set up six UK centres as first implementers of BICAMS, a brief cognitive assessment that can be given by MS Nurses, with the aim of making annual cognitive assessment routinely available throughout the NHS.
Health professionals need to ensure that people with MS are fully appraised of these facts and entitlements. These health professionals should support people with MS by ensuring that their disease(s) management is optimal. All the way through the levels of the health system and all the way through the MS disease journey, there should be a commitment to fight against the ravages of MS and cherish cognition.
More information:
- http://www.stayingsmart.org
- Jeffrey Gingold. Facing the Cognitive Challenges of Multiple Sclerosis Demos 2011
- Jeffrey Gingold Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis Demos 2008
- Yael Goverover et al., “Impact of multiple sclerosis on daily life”. Ch in Changes in the Brain: impact on daily life. Eds Chiaravalloti, Goverover Springer 2017
A group of us who are trying to progress knowledge about cognitive difficulties in MS have formed the International MS Cognition Society. Health professionals and scientists interested in learning more about cognition in MS, and sharing their work, should attend the IMSCOGS meeting, 7-8 June 2017,
If you are a person with MS, or care about someone with MS, and would like to help us design research projects and materials that can best help people with MS with cognitive difficulties, please send your contact details to d.langdon@rhul.ac.uk. This is not a recruitment message to take part in trials, just to help us design the experiments. We will send more information when you contact us and you can decide whether to take part or withdraw at any point.
Dawn Langdon PhD
Professor of Neuropsychology
Director of Health and Medicine
Royal Holloway
University of London
Egham Surrey UK
TW20 0EX
E-mail: d.langdon@rhul.ac.uk
Twitter: @Dawnlangdon
Dr. Dawn Langdon, is Professor of Neuropsychology at Royal Holloway College. She is a neuropsychologist and health psychologist. Her research Interests include psychological aspects of MS; treatments protecting and rehabilitation of cognition. Royal Holloway College, is sort of the Ala Marta of MD, and is part of University of London, in the vicinity of the Queens House in Windsor.
Cognition problems in MS are definitely not dementia, anybody observing patients with real dementa/Alzheimer's knows that.Of course acute delirium/confusion can occur and is probably more likely to occur in the context of acute infection in a patient with MS who has some cognitive problems already… but for most people with MS most of the time dementia is not an appropriate term.
This blog, thanks to its protagonists, is the best on web. Allowing different points of view and commentary makes this such a valuable resource. Thank you ProfG and team, and guest posters.
Can I suggest you read my commentary to understand the 'rebranding MS a preventable dementia' campaign? The emphasis is on 'preventable'. The whole reason for the campaign was to make people aware of the hidden symptoms and the need for early effective treatment.
It is a laudable aim to facilitate good awareness of cognitive issues in MS and emphasise the need for early effective treatment. I think probably everybody embraces this aim. But what will people with MS hear from the label "preventable dementia"? It is of course possible in consultations to explain with time, questions and support. But the label "preventable dementia" shouldn't be thrown around or adopted routinely, because it could have really bad effects on family members' views of their loved ones, employment prospects, and credibility and confidence of people with MS.
The idea/strategy is to raise awareness of the issue (as "dementia" is a priority of the government) and to hopefully speed up early and effective treatment as cognitive issues in MS are undeniable and have been recognised far too late.
I agree with Dawn Langdon 100%. One should not use "dementia" term lightly, it is extremely stigmatising. Even geriatricians are careful about sticking this label – once the label is stuck, it stays there!Raising awareness about cognitive issues in MS (which can be tested, measured, followed up – the problems are there no doubt!), especially problems with memory, attention, distractability, ability to focus over time and so on… these are real issues.
I have PPMS and, as there is no treatment currently available to me, dementia wouldn't be preventable in my case. Reading yesterday's piece left me with a distinct unease about my future so I was heartened by Dawn Langdon's article. My daughter, who has worked with people with dementia and people with MS, does not see the correlation between them.
Very much agree with Dawn here – the term Dementia is an example of overkill, an abuse of a word that is appropriate in Alzheimers etc but not in MS. Many people with MS live normal lives and are unaware of cognitive problems – and neither are family members. If however they occur it is clearly important to recognise and manage in the best interests of patients and family. But to frighten people uneccessarily is not helpful and could leasd to avoidable issues for patient and family alike in dealing with the disease emiotionally, and in social situations, like getting or keeping employment. As a retired Consultant Psychiatrist diagnosed with a form of MS in my early twenties and now aged seventy two, after a successful career, I am so glad that I was not burdened with a Dementia label starting married life and my profession all those years ago!
THe Alzheimer's Society lists MS under 'Rarer Types of Dementia' and states that because the decline is not usually as severe as in other forms, it is more usual to describe a PwMS as 'experiencing cognitive difficulties' I can't help but wonder if we aren't playing with terminology too much in this debate. Whilst there does seem to be a range of dementias, or a spectrum, then the fact is they are all eligible for the application of the umbrella term 'dementia' More importantly the UK government is currently focussed on dementia and it is important that all its manifestations are catered for in any future plans for funding and resources. Flagging it up in the bold, even dramatic manner adopted by Prof G and the Bart's team, might possibly/maybe find it a place on the government agenda. We can but hope for those PwMS who are particularly struggling with their cognitive functioning.
I'm not comfortable with the term because it is stigmatising and nothing much can be done about cognition in MS. I certainly don't see the benefit on an individual level of having yearly screenings which merely record my declining abilities and send me on my way. The impact on my mental heath,the implications on my career, driving licence etc could be significant. On a wider scale yes if it gives people better access to effective treatment. Perhaps this is something the ABN can consider when underwriting treatment guidelines – correct me if I'm wrong but I don't think cognition is mentioned at all.
It is not all "doom and gloom", there are ways around problems if the problems can be noticed and acknowledged. And there are fixes that maybe do not work fast, but certainly add up to some benefit in the long run ( slow and boring lifestyle interventions). Then there is maybe more willingness to go with aggressive treatments if one can see that the upper faculties are being compromised. I have spent the last 5 days observing life in the MS infusion centre – and oh boy, there is still a lot of "slowly slowly let's try copaxone, then cycle through all interferons, aubagio and what not" going around.
Mouse Doc ABN guidelines critic here http://multiple-sclerosis-research.blogspot.com/2015/06/abn-2015-guidlelines.htmlI'm tired of all things MS today. Tired of the labels, the symptoms and the general lack of urgency in treating such a bad disease. Labels change but the disease does not.
Ta I had forgot where I had done the alternative ABN coat of arms…with amphioxus
In my humble opinion the cognitive problems associated with MS are different to dementia. I have observed my grandmother's dementia and the cognitive problems from my mother and brothers MS. My own cognitive abilities have been impacted by MS; the neuro phys assessed that my abilities have been impact from 98 th percentile ( based on my GMAT score) to 'a bad day score' of 84 th percentile. It is like borrowing a slightly lower spec laptop from the spares bin whilst my regular machine was repaired. My gran was feeding the chickens in the nursing home, she was hallucinating. Nothing like I had observed with my mother. My brother gets worked up about small things; he'll only eat Ormo pancakes because a care assistant told him that they were good for him. I think that the decline associated with MS is different.
I know, when people go with dementia it is like they are on a different planet … :-). feeding chickens and talking to fine ladies wearing colourful ballgowns in the front garden :-). We should send prof G on a short trip to geriatric care to experience this eerie world 🙂
Here's to shattering this monster of a disease. Immense gratitude daily for the vital work expressed in this blog / exchange. As so well stated Dr. Langdon, the issues of memory and concentration, "the particular pattern of slowed information processing speed and reduced memory", are just NOT dementia.Dr. Giovannoni, Kudos for your work to address "preventable dementia' through early effective treatment. And so much more.
I am SPMS, EDSS 8.5, 9HPT around 90 secondsI had always learnt, until now, that cognitive impairment was related to visible (>4mm) lesions in my cerebral cortex. My visible lesions are T8/9 hence my disability.If anything my mental functioning (as evidenced by long and short term memory) is improving.
We can’t afford to be precious about labels. If regrouping under the dementia umbrella raises our profile in the eyes of the NHS then lets do that. The carrot is probably funding, but 4 years ago I asked the neuro for help with significant cognitive issues and was told there was none, I doubt dementia patients are turned away with that.‘Health professionals need to ensure that people with ms are fully appraised of these facts and entitlements.’ Comments like that are too far removed from the reality to be helpful. Under the care of the stroke department (misdiagnosis) I was visited by their care team at home. They came armed with leaflets, contacts, information and a folder to store it all in that was divided into sections with space for the people that would be caring for me to write notes. They were a godsend, very caring, I couldn’t have asked for more. Well, perhaps a correct diagnosis, but apart from that the care team was a slick operation that delivered. Migrating to neurology was akin to having the door slammed in my face.I am not confident in attempting paid work because my capabilities are inconsistent and I have recently had to scale down the volunteer work due to a flair of cognitive issues so it is pleasing, and encouraging, to learn of Prof L’s work, but I am not convinced that this post offers an effective argument against Prof G’s manifesto.In my experience, any step away from the ms label is a move towards better care.
And what can the guys who care for real dementia do other than state the facts? Very little.In MS there is some hope with the use of drugs to stop progression… and actually also some hope for a better functional outcome if the patient understands his/her problems better and learns some tactics to compensate.
Has there been a study of pwMS taking strong anticholinergics and cognition problems?How may pwMS take amitriptyline? even at low doses. The paper:Cumulative Use of Strong Anticholinergics and Incident Dementiastudy provides the strongest evidence that anticholinergic drugs may increase the risk for dementia in older adults. The drugs implicated are commonly used, estimated to be taken by about 20% of the older adult population for many conditions. They include popular antihistamines sold over the counter as sleep aids, such as diphenhydramine (Benadryl, McNeil-PPC Inc), or for allergy relief, such as chlorpheniramine; oxybutynin and tolterodine for overactive bladder; and the tricyclic antidepressants, such as doxepin or amitriptyline, even when used at low doses for migraine prevention or neuropathic pain. medscape.com/viewarticle/838788. Jan 2015.
I think any move towards adding yet another stigmatising label to MS is really counterproductive, as it will be used as yet another stick to beat us with, which is particularly galling when you don't have that particular symptom. How are we going to keep our intellectually demanding jobs when the media start reporting about how pwMS have dementia? Because they won't add any nuance, and the general public will take even less nuance from the reports – for example, I've lost count of the number of times I'm asked whether I'm having a "good" day or a "bad" day, or told I'll be getting my annual MRI scan soon, neither scenario is applicable to me, I have PPMS – but most people don't even know there are different types of MS, let alone that I don't have the common form.And I don't have memory or cognition problems at all – just mobility problems a-plenty.
Completely agree!