I Thought I Had MS, Not Dementia?!?

As if being diagnosed with MS isn’t enough of a shock, one leading expert has suggested that the disease should be ‘rebranded’ as a form of dementia. Professor Gavin Giovannoni is concerned that brain changes associated with MS aren’t being addressed early enough, and wants the disease regarded alongside other forms of dementia such as Alzheimer’s and Parkinson’s – which are currently high on the political agenda given their growing impact on society.

You’re probably thinking, ‘but MS isn’t anything like Alzheimer’s or Parkinson’s!’ – and you’d be right. The cognitive decline seen in MS seems to be far milder than in those diseases, for starters. That said, MS can seriously affect thinking, with memory, concentration and problem solving most commonly impacted. Dementia is a frightening word, but it actually just refers to these types of changes – which can occur in a number of conditions.

A Change of Strategy

Professor Giovannoni’s point is that changing perceptions of the disease would shift the emphasis from managing physical symptoms to preventing the brain changes that can occur from the outset. In one study of individuals with the beginnings of MS but no physical symptoms, over 25% already showed signs of mental difficulties, such as problems with concentration or memory. Unfortunately, this damage is irreversible, hence the calls for earlier effective treatment. Prevention is better than cure, after all.

Cognitive issues have a huge impact on quality of life when it comes to MS. In Europe, 50% of people with MS are unemployed within 10 years of diagnosis – and rates of employment decrease dramatically long before the condition causes physical disability. This suggests that cognitive factors, fatigue and mood all play an important part in preventing people from staying in work. Let’s face it, it’s hard enough concentrating in meetings without having to contend with mental exhaustion and memory issues.

Social Stigma

For many people with MS, however, the dementia label is a step too far. Firstly, not everyone with MS experiences significant mental difficulties. There’s also the fact that viewing MS as a form of dementia could cause social stigma, not to mention seriously affect work prospects for people living with the disease. ‘I may or may not lose my marbles’ isn’t exactly something you want on your CV!

Negative connotations aside, a shift in perspective could definitely attract new interest in the disease. Indeed, at the G8 Dementia Summit in the UK in December 2013, international politicians, leading experts and senior industry figures all pledged to increase funding for dementia research, with the aim of identifying a cure by 2025. If MS was reclassified as a form of dementia, the disease could receive the same focus.

Rebranding any disease is a controversial idea. One thing’s for sure, however – debate and discussion about how to tackle MS can only be a good thing in terms of raising its profile and encouraging more research.

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Jamie Tripp Utitus
Written by
Jamie Tripp Utitus
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