Use careArticle link

Getting Medical Professionals to Take MS-Related Cognitive Decline Seriously: A Caregiver’s Guide

When multiple sclerosis (MS) is involved, cognitive decline can be overlooked or dismissed as ‘just part of the disease’ or mistaken for fatigue or mood changes. This article helps you, as a family caregiver, recognize the signs of MS-related dementia and advocate effectively with healthcare providers. You’ll learn concrete steps, exact phrases to use, and how to prepare so your loved one’s cognitive challenges are taken seriously and properly evaluated.

Key points

  • MS-related dementia is often missed because cognitive symptoms are blamed on MS fatigue or ‘brain fog.’ You must advocate for a thorough evaluation.
  • Document specific incidents of cognitive decline in a log. This is your strongest evidence for the doctor.
  • Frame the doctor visit as a checkup for independence, not a dementia evaluation, to reduce your loved one’s resistance.
  • Bring a one-page written summary to the appointment. Hand it to the doctor at the start to ensure your concerns are heard.
  • Do not accept ‘It’s just the MS’ without testing for reversible causes like infection, medication side effects, or depression.
  • If the doctor dismisses you, ask for a referral to a specialist (neuropsychologist, geriatric psychiatrist, memory clinic) and seek a second opinion if needed.

Why MS-Related Dementia Is Often Missed or Dismissed

MS-related dementia is a form of mixed dementia, where brain changes from MS (lesions, atrophy) combine with other dementia pathologies like Alzheimer’s or vascular dementia. Because MS itself can cause cognitive symptoms—slowed thinking, memory lapses, trouble multitasking—providers may attribute everything to MS fatigue or ‘brain fog’ without exploring whether a separate dementia process is also underway. This is especially true in early and middle stages, when changes are subtle and can be masked by the person’s usual coping strategies. Many clinicians lack specialized training in dementia, and as one source notes, ‘many providers get their training on dementia care just from all of a sudden the people coming into their practice now seem to have dementia.’ This means they may not recognize the distinct pattern of MS-related cognitive decline or know how to differentiate it from other causes.

The Caregiver’s Role as Advocate and Documenter

You are the expert on your loved one’s daily life. Medical professionals see them for brief appointments, often when they are on their ‘best behavior’—a phenomenon sometimes called the ‘Johnny Carson effect.’ Your detailed observations are critical. As one resource advises, ‘you want to sit on your word processor and type out for your doctor all the cysts and all of the different incidents when you saw your relative or your loved one behave in a way that showed these signs of dementia.’ This written record helps the doctor ask targeted questions and conduct a more effective evaluation. It also counters the tendency of some providers to minimize concerns, especially if they feel uncomfortable or unsure. Remember, ‘just because somebody has a fancy title or fancy initials behind their name, it doesn’t mean they know more than you’ about your loved one’s experience.

What to Expect from a Proper Evaluation

A thorough assessment for MS-related dementia should include a neurological exam, cognitive testing (like the MoCA or neuropsychological battery), brain imaging (MRI to see MS lesions and atrophy), and a review of all medications (since some MS drugs or symptom treatments can worsen cognition). The goal is to identify reversible contributors—such as a urinary tract infection, medication side effects, depression, or sleep apnea—that can mimic or worsen dementia. As one source emphasizes, ‘don’t accept that this is just dementia when there has not been any exploration or evaluation of other causes.’ If the decline was abrupt, that’s a red flag for a treatable issue like infection or stroke. You have the right to ask for a referral to a specialist, such as a neurologist with expertise in MS and dementia, a geriatric psychiatrist, or a memory clinic team.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Start a symptom log: For two weeks, write down specific incidents of cognitive trouble—for example, forgetting a familiar route, struggling to follow a conversation, or losing track of a task mid-way. Note the date, time, what happened, and what you observed.

  2. Gather medical records: Request copies of recent MRI reports, neurology notes, and any prior cognitive screenings. Ask each specialist to share records with the others.

  3. Frame the appointment as a wellness check for independence: Say, 'Let's check with the doctor to make sure we're doing everything we can to keep your mind and body working well.' Avoid saying 'dementia evaluation.'

  4. Write a one-page summary for the doctor: Type a brief list of your concerns from your symptom log, including the most troubling changes and how they affect daily life. Hand it to the doctor at the start.

  5. Use the 'ASK' method during the visit: Ask specific questions, Share observations, and Keep asking until you get clear answers. For example: 'I've noticed Mom is forgetting conversations within minutes. Could this be more than MS fatigue? What tests would help?' If dismissed, say, 'The change has been sudden. Can we check for infection or medication side effects?'

  6. Request a referral to a specialist: If the doctor is not comfortable with dementia, ask for a referral to a neuropsychologist, geriatric psychiatrist, or memory clinic. Say, 'I'd like a second opinion from someone who specializes in cognitive disorders in people with MS.'

  7. Bring a supportive companion: Bring a friend or family member to take notes and ask questions you might forget.

  8. Follow up after the visit: If tests are ordered, schedule them promptly. If the doctor says 'let's wait and see,' ask for a follow-up in 3 months and a clear monitoring plan.

What not to do

  • Don't use the word 'dementia' with your loved one. Mistake: Saying 'I think you have dementia' causes fear and refusal to see a doctor. Instead, frame the visit as a checkup to 'keep your mind sharp.'

  • Don't accept 'It's just the MS' without testing. Mistake: Letting the doctor dismiss cognitive changes without evaluation. Reversible causes like infection or medication side effects can be missed. Instead, ask, 'What tests have we done to rule out other causes? Can we do a cognitive screening today?'

  • Don't argue or get defensive with the doctor. Mistake: Raising your voice damages the relationship. Instead, use 'I' statements: 'I'm worried because this change is sudden. I'd feel better if we could check for a few things.'

Practical tools

  • Symptom Log Template

    Create a table with columns: Date, Time, Situation, What Happened, How Long It Lasted, Any Triggers (tired, stressed). Update daily.

  • One-Page Doctor Summary

    Single page with: loved one's name, age, MS diagnosis year, top 3 cognitive concerns, when changes started, current medications, and your specific request (e.g., 'Please do a cognitive screening').

  • The 'ASK' Script

    A = Ask: 'Could this be more than MS? What tests would help?' S = Share: 'I've noticed she forgot to take her meds three times this week.' K = Keep asking: 'I understand, but can we still check for a UTI?' Practice before the visit.

  • Medication Review Checklist

    List all meds (prescription, OTC, supplements) with doses and start dates. Ask the pharmacist or doctor to review for drugs worsening cognition, like anticholinergics or benzodiazepines.

  • Referral Request Letter Template

    Write: 'Dear Dr. [Name], Thank you for seeing [loved one]. Given the recent cognitive changes, I would appreciate a referral to a neuropsychologist or memory clinic. Please let me know if you need additional information.'

  • Post-Appointment Follow-Up Tracker

    Record: tests ordered and scheduled, medication changes, follow-up date, specific symptoms to monitor, and triggers for calling sooner (e.g., sudden confusion, falls).

Discuss with your clinician

Ask your loved one’s neurologist: ‘Could any of my loved one’s MS medications be contributing to cognitive decline? Are there alternatives with fewer cognitive side effects?’

Discuss whether a neuropsychological evaluation is appropriate to differentiate MS-related cognitive changes from a separate dementia process.

Ask about the risks and benefits of using dementia medications (like cholinesterase inhibitors) in someone with MS, as these are not typically studied in this population.

If a UTI or other infection is suspected as a cause of sudden confusion, ask for a urine culture and other appropriate tests before assuming the decline is dementia progression.

Discuss the possibility of a sleep study if your loved one has MS fatigue and cognitive issues, as sleep apnea can worsen both conditions.

Ask about advanced care planning, including a Medical Order for Life-Sustaining Treatment (MOLST) form, as recommended by the Alzheimer’s Association, to document your loved one’s wishes for future care.

Related guides

Sources