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 Dementia is no longer a classificatory term, now having been replaced by “Neurocognitive disorders” (NCDs), “in which impaired cognition has not been present since birth or very early life, and thus represents a decline from a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.
- 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 firstname.lastname@example.org. 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
University of London
Egham Surrey UK
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.