Am I cognitively impaired?

Barts-MS rose-tinted-odometer: ★★

Last Wednesday I chaired a debate about the following case scenario, who many of you may identify as being very close to home. Professor Dawn Langdon, a neuropsychologist, made the case for testing cognition against Professor Nikos Evangelou, a neurologist, who said no we should not assess this patient’s cognition. 

What would you want if this patient was you?

A 48-year commercial solicitor with early secondary progressive MS is having increasing problems coping at work due to cognitive issues. He is worried that he may have to stop working. He has had MS for 16 years and was originally treated with interferon-beta and was subsequently switched to DMF 5 years ago because of local tolerance issues around injection site reactions and severe lipoatrophy. Although his last MS relapse was more than 10 years ago, his neurological functioning has deteriorated over the last three to four years with reduced mobility, bladder and bowel problems and sexual dysfunction. He has also been depressed. He is currently on oxybutynin, sildenafil and citalopram in addition to DMF. His most recent MRI showed three new T2 lesions and increased brain volume loss compared to his last MRI done 18 months ago. 

Would it help in the management of this patient if you knew he was cognitively impaired; i.e. would you refer this patient for a formal neuropsychological assessment?

Although Professor Evangelou won the debate, i.e. he swung the vote from 13% to 28% in his favour, the majority of attendees wanted this patient to have a formal cognitive assessment. Do you agree?

The cognitive assessment should simply be an extension of the neurological examination, i.e. another functional system. In other words just as we like to know if our patients have weakness in a limb we need to know if they have cognitive impairment in one of their cognitive domains. This can help in so many ways. 

  1. Prognostically, poor cognition predicts a poorer outcome. Knowing someone has a poor prognosis may nudge both the neurologist and/or patient to a higher efficacy therapy, i.e. to flip the pyramid.
  2. Assessing disease activity, i.e. worsening disability or cognitive relapse. This could trigger a treatment switch, for example in the patient above Prof. Evangelou suggested switching this patient onto siponimod. 
  3. Helping in diagnosis, i.e. dissemination in space. Cognition is another anatomical space and it may provide the neurologist with additional information.
  4. Diagnosing MS in patients with RIS (radiologically isolated syndrome); cognitive impairment demonstrates they have involvement of at least one functional system and if the MRI shows dissemination in time diagnosis could change from RIS to MS and the patient could be then started on treatment. 
  5. Risk assessment; patients with cognitive impairment are at higher risk of having accidents, in particular, motor vehicle accidents, poor adherence to medication, missing medical and other appointments and not being able to cope with their own self-care. It is well known that MS patients with cognitive impairment often need help with their financial affairs. 
  6. Targeted treatment; for example, referral for cognitive rehabilitation and the use of cognition aids.
  7. Review of medication; i.e. stopping or switching medications that may exacerbate cognitive impairment. For example, this patient needed his oxybutynin stopped or changed to a non-CNS penetrant anticholinergic (trospium) or to a new class of treatment (mirabegron). Many of the symptomatic medications we use exacerbates or worsen cognition. 
  8. Screening for depression and anxiety; patients with MS who are cognitively impaired may have comorbid depression and anxiety that may be exacerbating their poor cognition. 
  9. Medical retirement; knowing someone with MS has cognitive impairment may help make the case for medical retirement. Prof Langdon pointed out that cognitive impairment is a common cause for pwMS for underperforming at work. Instead of them being let go, or fired, knowing they have cognitive impairment may protect them under employment law. 
  10. Social services; knowing someone with MS is cognitive impaired can help make the case for extra or specific social services and support.

These are just a few examples of why it is important to assess cognitive impairment in routine MS practice. If you can come up with any more reasons please let me know. 

CoI: multiple

Twitter: @gavinGiovannoni                                              Medium: @gavin_24211

19 thoughts on “Am I cognitively impaired?”

  1. From a medical perspective I think there can only be any benefits in doing cognitive assessment.

    But in terms of impact on the rest of the patient’s life it can be an absolute minefield.

    From preventing patients from driving, who would otherwise be reasonably safe; to forcing them to retire because they are seen as a “potential” liability;
    to diagnosing them with comorbid mental health issues which massively increase or even prohibit certain types of medical insurance and travel insurance and home insurance and life and long-term insurance.

    The insurance implications alone are onerous. People with families in France and Spain and elsewhere in the EU can be prevented from traveling to see them if they do not have adequate health cover. The diagnosis of MS related depression or anxiety or cognitive decline could be enough to render the insurance more expensive than the trip itself and effectively prevent PwMS from having proper contact with their loved ones. And as this pandemic has shown, we can do plenty by Zoom but actual human contact is so important and something we all miss so much.

  2. I am definitely convinced of the benefits of cognitive assessment but am intrigued about the case against! Can we be told that too please?

  3. I think this is vitally important. I have very little physical disability but I was finding work harder to manage. This made me very anxious. I also was constantly thinking about it which was distracting in itself. It was only when I went to a NeuroPsych that I was able to pinpoint the issues and understand what parts of my cognition were intact and what had been affected. This greatly reduced my anxiety. I also have practical steps to manage myself eg. regular breaks. This gave me the confidence to start a Masters course part-time, which I combine with being a Mum.

  4. Prof G,

    I would love to know the NHS hospital which offers all these fantastic add on tests and services (I assume with no delays). My annual appointment (usually every 18 months because of rescheduling the appointment) consists of 15 mins max with the neuro who asks “how have things been since I last saw you?” I usually mention a few Prof Gisms eg “smouldering MS”, “viral hypotheses” and get s shrug of the shoulders. If I’m luck I get 10 mins with the physio who does the EDSS check. The neuro may offer an MRI eg “it’s been a while since you’ve had one, so we’ll try and get you one before the next appointment”. There is never an offer of physical therapy (on the NHS). There is certainly no offer of a formal cognitive test.

    But I’m not sure the case in your post is a matter of flipping the pyramid. What change in treatment would really change this patient’s prognosis? HSCT? I would guess that it’s smouldering MS that is driving the patient’s progression and leading to the cognitive impairment. But, as of now, there is no licenced therapy to address smouldering MS.

    Before you head off into the sunset, please could you do a post on where we are with potential trials of therapies for smouldering MS. I’m sure some readers of the blog are keen to sign up to any such a trial/s rather than wait for years and years before any therapy gets approved and available for prescribing.

    Have a good Easter break.

  5. If I was that patient (and I will certainly be), I would want to be on the highest efficacy treatment, be it siponimod or anything else.
    The rest of the debate is less relevant in my view…

  6. The combination of medications he is on would make even an Einstein cognitively challenged. Oxybutynin in particular. These would skew the results.

    1. I agree with cognitive assessments, but this case is definitely in need of a comprehensive medication review before any long term decisions regarding future e.g. employment etc are made. Maybe be cognitive assessment before and after med review.

  7. Personally I had worst brain fog, dizziness and other side effects in my life (roughly 6 months before first obvious M symptoms…) from Escitalopram (like clockwork 1h after taking it for 8-10h, then it would lessen). It also gives nasty sexual side effects so are we sure we are treating MS or adverse effects from the medication cocktail?

  8. Add 5 years to your case scenario, and you have pretty well described me. I feel that my physical deterioration is well supported and managed by medication and using physical aids. I feel blessed that the MS team looking after me will have any future physical deterioration covered. By this I mean that I know they cannot stop my further decline, but I know where to turn to as the progression moves on. I held a professional position and after discussion with medics and my employers, we took the grown up, consensual decision to medically retire 2 years ago. At that point I was, still am, categorised at 8.0 EDSS. Cognitive failing is my big fear. It’s the doubt that is always in my mind. I struggle sometimes, grasping for the right word choice, the “it’s on the tip of my tongue’ scenario. Publicly I laugh it off as old(er) age. But privately I do wonder if it’s something more MS sinister. I would happily submit to an annual detailed, formal cognitive assessment, if this was going to guide treatment methodologies to try to stave off issues earlier in any deterioration of cognitive function. I do not subscribe to the ostrich with its head in the sand POV. As a pwMS, please count me in. David

  9. A decade in to my MS, I am very aware of cognitive deficits that have accrued. I had one formal diagnostic appointment some years ago, but I confess I have resisted taking further tests – not simply because it is acutely distressing information to hear but also because, having gathered the depressing data, the clinician is unable to offer anything that might help, so what has been achieved?
    I would happily submit to further tests for research purposes, (on the basis that i didn’t have to hear the result), so it might help future treatment for others. But from a patient’s pov there aren’t really therapeutics that might follow this info, and I can’t see anything I would gain from knowing how badly my brain is failing if there’s nothing anyone can do to help.

  10. Cognitive assessment isn’t easy.
    It is also anxiety provoking for the “subject “.
    Limping is bad. Losing Self is Catastrophic.
    The Doctor should establish early on that cognition can be affected.
    Not to Scare patients, but to Reassure all is going well.
    Especially people who live alone without supports.
    Offer Strategies, OT consult to help in our daily routines.

  11. I like the idea in principle, but in practice it’s a ludicrous suggestion from a resource perspective. I have no planned follow up for my ms anymore, I wasn’t told this would become the case but I haven’t been offered an annual appointment and I haven’t had a routine appointment with an ms nurse for 18 months either. I’d prefer you guys to just get the basics right.

  12. The benefits of a cognitive assessment seem to outweigh the disadvantages to me. Granted, the full range of insurances become either costlier or harder to access, but there is merit in an assessment IF it results in higher efficacy DMTs or protection at work.

    It makes more sense to me, although I sympathise with Splinno. Not everyone wants to know how they’re performing cognitively. Is it likely to become common practice in the care of pwMS, adding as it would to the cost of monitoring patients? I would welcome the opportunity to ask for a test.

    Having had what I strongly believe were tw0 MS provoked depressive episodes, I never want to be in that position again. Everyone will have a pov on depression, but I believe it was linked to cognitive decline in MS and thus brought depression on. Nothing I have ever experienced is worse than depression.

    Other factors affecting cognitive decline can include polypaharmacy and fear. If the last thing you want is to be squeezed out of your job, or to feel you are “on the scrapheap” your responses will be different form those who want out of a stressful career with dignity and a decent pension. I had the latter need and fought my own way out of an increasingly demanding job with the help of my union.

    1. Very well said and sound advice Kit!
      I feel fortunate to be in a somewhat similar situation of having union support, a pension, and disability retirement options. All benefits earned through military then public government service. Having these “options” is one of the positive thoughts I try to focus on, when my MS tries to beat me down.
      I must admit, considering a disability retirement has been difficult….. emotionally (only 40yrs old). “Maintaining Dignity” is a good way to describe the feeling or should I say fear.
      Nevertheless, in my situation, having formal cognitive assessments regularly performed provides the documentation needed to apply for disability benefits. As many commentators have stated, receiving a cognitive assessments can be associated with various risks, which must be carefully considered.
      At a minimum, I always strongly encourage newly diagnosed to obtain a baseline cognitive assessment for comparison at a future date (for better or worse).

  13. There is scholarly, third-party, cited current literature that oxybutanin worsens memory.

  14. I think cognitive assessment can be valuable if the individual wants it. I worry results can be used against people in employment situations thus caution is important. Having said that I requested an assessment and was relieved to know that I was performing averagely. I wonder what my baseline was a couple of years ago so I don’t know if I have declined. So I think I am a fence sitter. Case by case driven by the individual.

  15. I totally agree that he has cognitive issues. I ‘ve had MS since December 2005. I had to quit my job as software engineer in 2019 ssince I suffered very noticable deterioration in my cognitive abilities.

  16. Assessments, even routine ones, are a large part of the cognitive picture true. As a PWMS, I believe it is important to also bring the support person for the PWMS into the appointment. This can help acknowledge, identify and assist in articulating for and to the PWMS. This will also support coping skills, and lost and unidentified cognitive challenged moments. Without this insight, cognition difficulties can be missed, ignored and a in general, remain a moving target. I am after a good record of assessment and usable coping strategies for the PWMS and their support person to rely upon and conveniently reference. Obvious, perhaps, but often overlooked., I suggest.

  17. Hi Prof G, having read your post and responses – I’m inclined to agree and disagree! It all boils down to each person’s circumstance. If you have a good Neuro `& MS team, along with a good support network at home – it might work carrying out cognitive tests, if a patient is concerned or you detect that the patient is showing signs. The measure of proving that the person has impairment might be arbitrary – e.g. age, other health issues, menopause, lack of sleep & already depressed/anxious along with knowing that this test could prove that their brain is shrinking “& their personality is slowing depleting – will affect the test & what’s it going to achieve! It could make matters worse (MS/depression) & take away that feeling that, what we don’t know can’t hurt us mentality! It also means that if it’s documented – legally I’m guessing folk will need to advise DVLA, work & friends & family! This can change everything in a person’s life – which could have a devastating impact on that person’s life – if they enjoy travel, driving, & getting by with their friends/family – who have learned to accept this person with MS & so what if they are a bit forgetful or their driving is a bit off (whose driving isn’t if you’re out on today’s roads!) Financially, it may cause probs with getting another job. Lots of employers play lip service to supporting their employees but in reality we all know that it wears off or just doesn’t happen – even if you have a Union. If it can springboard you on to a relatively high DMD – that’s great, but shouldn’t this be a choice anyhow for the pwMS – depending on their circumstance, tolerance & age and how long they’ve had the disease etc. When you get to your 50s with MS – the disease has a habit of causing you a few problems that interfere with work, again depending on what you do or circumstance – but in the main, along with age, other health probs that might or might not be linked to your MS & the constant fast pace of the here and now, tends to add a lot of pressure on you too! So, you need an extremely understanding employer & work colleagues – to continue to work at a rate as you did prior to MS or the expectation of the modern employer. If we had a crystal ball & could have retrained to a job that could be adapted to support you through to your old age with MS, that would be fab. We also need to be realistic & probably be self-employed to carry on until we can claim our pension – 67 plus in my case! The social & economic set up isn’t enough & in parts of the UK non totally inadequate! No one can live off the disability payment – if you live in London especially. The pros – for being given the cognition tests are for an individual to make that choice – regular appts should be mandatory, support in place if you are showing signs of decline, good solid support – not one that runs out after 6 wks – professional a must too! Understanding what will happen & things to do to try & offset some of the difficulties. Again, most importantly – a DMD that you can start almost immediately as TIME is not on our side. Access to support when on DMD (which isn’t the norm generally) & lastly, why in the hell isn’t this supported anyhow & offered as an important issue along with physiotherapy, medication support (regular & thorough checks on what meds you are taking to see if they could be causing probs) – & general check in with your journey with the disease is what we all deserve & it needs to be properly put in place. I still shudder to think it took me over a year to see a Neurologist, when I was suffering all sorts of symptoms that were extremely concerning for me `& my family! I would be interested in any studies & would volunteer myself too to go on any of them to help this initiative. I’m just concerned of how, what, when & to at least help set up some sort of patient review of the process. Your brain, mental health are as important as your physical problems, they’re all as one and should all be treated as one. The whole package is what someone with MS usually gets given – especially as you go through life, the disease just keeps giving. It needs to be treated part and parcel. 😊 Speech & language skill loss – can be helped. Diet & support with maintaining a healthy weight – needs more. Podiatrist- especially important. Regular (not just 6 wks) physiotherapy – can be extremely helpful & proven to give someone with MS the support they need to move & stretch. I could go on with all my thoughts about how someone with a neurological disease should be looked after, when diagnosed but I think you know too 😳. TIME, process, support & outside support are all crucial, especially if we go ahead with a cog test – BUT, if the findings are good – then this should be celebrated too! Vitally important to share the wins in life – especially at the mo! If an MRI shows no decline & comparison too – then to share this great news that this test shows no further decline – can be better news then any neuro medication prescription.

    All the best & I hope you all keep well & I look forward to lots more info & postings soon.

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