Cognition and MS

“I find I’ve experienced degrees of cognitive decline - names, dates, and words I need to finish my sentences, evaporate on occasion. I’m no longer able to juggle multiple tasks and I’m becoming overwhelmed easily and impulsive at times." -Eric, diagnosed with MS in 1996 

Cognition refers to how we think, remember, communicate, and learn. Changes in cognition can occur in over 50% of adults and 30% of children living with MS.^1,2  

The most common cognitive changes or symptoms are:  

• Slower information processing speed 

• Difficulty remembering information 

• Challenges with other cognitive functions may occur¹  

Cognitive symptoms can interfere with work, school, home life, finances, relationships, attending appointments, or taking medications. Recognizing cognitive symptoms early can help a person and their healthcare providers identify strategies to manage cognitive symptoms and improve outcomes.  

It’s important to discuss cognitive symptoms with an MS healthcare provider because cognitive changes may not be recognized by the person living with MS.

Cognitive challenges due to MS may be explained by underlying changes in the brain.³ MS is a neurological disease that causes lesions in the central nervous system, which includes both the brain and spinal cord.   

When lesions occur in the brain, they can interrupt connections, leading to slower information processing speed and disruption of normal cognitive functioning. The size of the brain (brain volume) also decreases in people living with MS faster than with normal aging.⁴ 

The number and strength of the connections between brain cells are called the active brain reserve. The active brain reserve refers to the brain’s capability to stay strong and flexible, even if there is damage caused by MS.  

The brain can repair and strengthen connections to build up the active brain reserve however when enough brain reserve is lost, cognitive symptoms may get worse. Partial or complete recovery of the cognitive symptoms may occur in some people. For example, improvement in cognitive symptoms may occur following an MS relapse.  

It's critical to recognize treatable factors that may influence  
the active brain reserve and cognitive symptoms such as: 

• Fatigue 

• Mood symptoms (depression)  

• Anxiety 

• Sleep deprivation 

• Infections (for example, a urinary tract infection may be associated with worsening cognitive symptoms) 

• Stressors (including major life events or trauma) 

• Prescribed medication (including medications used for treating other MS symptoms)  

• Other substances (alcohol and drugs) 

• Unhealthy diet or insufficient nutrients 

• Other health conditions (sleep disorders, other psychiatric conditions, thyroid disorder, stroke, etc.) 

Memory or recall problems are reported often. People with MS typically have greater challenges learning and remembering new information. For example, a person may remember what they did for their 18^th birthday, but may not remember the details of a recent conversation. Most people with less severe cognitive symptoms can learn strategies that help with memory challenges.  

Slowed information processing speed refers to the time it takes for individuals to take in information, whether it is spoken or written. A person needs to make sense of it, respond, and/or create a new memory. Processing can be challenging when the information presented is multi-step or when there are distractions, such as a loud or busy environment.  

Attention includes the ability to stay focused on a task over time or do more than one task at a time. Doing more than one task at a time divides our attention and is more challenging. An example of multitasking or divided attention is walking and talking on the phone at the same time. Tasks can be especially difficult to complete when distracted.  

Reasoning, insight, and problem-solving abilities refer to how a person analyzes, identifies, and solves a problem. For example, a person must first be aware they have a tendency to leave the stove on by mistake to be able to create a plan that will ensure safety in the home. In everyday life, good insight into one’s challenges and how to address them is essential to safe independent living and productivity.  

Visual-spatial abilities include the ability to recognize objects accurately and to draw or assemble things. Visual-spatial abilities involve everyday tasks such as driving, finding one’s way around, locating items in your home or a grocery store, or packing a suitcase. 

Verbal fluency difficulty in people with MS is often described as a “tip-of-the-tongue” phenomenon, where an individual wants to say a word, that’s on the tip of their tongue, but they just can’t think of it. Slowed information processing speed can also contribute to delays in finding the word you want.  

Cognitive symptoms may not be obvious to the person living with MS or others. Cognitive symptoms often happen slowly over years or decades. Cognitive symptoms may worsen during an MS relapse or may even begin before an MS diagnosis. People without any physical disability may still experience cognitive symptoms.  

Identifying cognitive symptoms early on can help a person develop strategies to manage the symptoms in their daily life. Close friends or family may notice cognitive changes before the person living with MS.  

The Canadian MS Working Group⁵ and international experts⁶ recommend that screening for cognitive changes should take place at regularly scheduled MS appointments.  Before a medical appointment, people living with MS can ask those closest to them if they’ve noticed any cognitive changes and if they have, to write them down so they can share them with their provider at the appointment. 

The Symbol Digit Modalities Test (SDMT)⁷ is a tool the MS healthcare team may use to look for changes in cognition.^8,9 It's most helpful to do the test shortly after an MS diagnosis and then every 2-3 years later. Depending on what the test shows, some people may be referred to another healthcare professional for additional cognitive testing.   

Healthcare professionals who specialize in cognition include neuropsychologists, occupational therapists, or speech-language pathologists. Access to these specialists and the type of cognitive rehabilitation offered will be different depending on where a person lives. People usually need a doctor's referral for cognitive symptom management and rehabilitation services. Individual and family-centered services that focus on goal setting are most likely to improve cognitive functioning in daily life settings. Physiotherapists, exercise therapists, nurses, occupational therapists, home care workers, mindfulness coaches, or social workers may be involved in cognitive rehabilitation programs.  

Stress management, counseling, computer training programs, and assistive technology may be part of the treatment approach. For some people, written strategies are the easiest and best. 

Ask your healthcare team about cognitive rehabilitation strategies and services that could be most helpful for you. Family members may play a role as key support persons. Cognitive rehabilitation programs that are offered in group settings or virtually are also helpful in improving cognitive symptoms for some people.¹⁰ 

A neuropsychologist, who specializes in the brain and behaviour, may identify which cognitive areas are most affected, and which have the most strengths. They can also help identify other factors that may impact a person’s cognitive function, such as depression and cognitive fatigue. A person can experience cognitive symptoms even if cognitive testing does not show any problems.   

An occupational therapist may identify and provide recommendations specific to daily cognitive challenges (for example cooking or using an electronic device).

A speech-language pathologist may help identify and manage challenges with language and communication (such as problems with finding words).

There are no medications approved to treat cognitive symptoms in MS. Many medications have been studied in clinical trials for the treatment of cognitive symptoms in MS, but no single medication has consistently shown beneficial results.  

Starting an MS disease-modifying therapy (DMT) early in the course of MS may help delay the onset and progression of cognitive symptoms. However, MS disease-modifying therapies are not indicated for the treatment of existing cognitive symptoms in relapsing-remitting or progressive MS.

Healthy behaviours such as eating a healthy diet, exercising, going out socially, and doing activities that challenge your mind are important for managing, delaying, or possibly preventing cognitive symptoms from starting.  Different cognitive rehabilitation strategies alone or in combination may improve cognitive symptoms. Treatment plans will be different for each person, based on their treatment goals and the level of cognitive change they are experiencing.  Some examples of non-medication treatments include:  

• Being socially and physically active 

• Learning mental imagery techniques to improve memory 

• Using calendars and organizational strategies 

• Setting reminders 

• Involving care partners in establishing routines 

Cognitive rehabilitation is an approach to improve cognitive function through goal setting, new learning, or adaptation. Cognitive Rehabilitation strategies may include combinations of compensatory strategies and restorative strategies.  

Compensatory strategies maximize the use of existing cognitive skills for the best cognitive performance. An example of a compensatory strategy is using a grocery list. Compensatory strategies offer a different way to complete a task that’s become difficult.  

Restorative strategies require new learning and engaging in tasks that target areas of cognitive difficulty. Restorative strategies rely on the brain’s ability to recover or establish neural connections to complete cognitive tasks. Restorative strategies aim to increase the active brain reserve.  

It’s important to discuss cognitive symptoms or changes with your healthcare team. 

Individualized suggestions for your situation may be most helpful. 

General advice and tips are provided here for managing cognitive symptoms in everyday life. 

General Advice:

• Stay active by increasing your physical activity as you are able. 

  •  Exercise has benefits for mood, fatigue, brain health, and general wellness 

  • The Canadian Physical Activity Guidelines for Adults with Multiple Sclerosis provides recommendations for people with mild to moderate physical impairments. 

  • Consult a specialist with experience in MS and physical activity (such as a neuro-physiotherapist if available) if you experience barriers to safe or regular participation in physical activity.    

• Ask for help with mental health concerns. 

  •   Talk to your doctor about mental health resources in your community. Some communities offer individual support with qualified therapists or useful online or group programs. 

• Talk to your doctor about possible medication options to address mental health concerns.  

• Eat a healthy balanced diet and stay well hydrated. 

• Avoid excessive use of substances. 

• Manage other health conditions aside from MS (e.g., blood pressure, cholesterol, diabetes, etc.). 

• Incorporate mindfulness principles into your routine. Pay attention in the moment. Mindfulness has benefits for mood, fatigue, and cognition. 

• Use pacing techniques¹⁵ 

  • Keep an activity diary to learn your limits. 

  • Schedule complex activities during the part of the day when you feel the least fatigued. 

  • Take frequent short breaks throughout your day. 

• Improve sleep hygiene¹⁶ 

  • Wake up and go to bed at the same time each day. 

  • Avoid screens in the bedroom, and caffeine or alcohol in the later afternoon or evening. 

  • Spend time outdoors every day. 

  • Try a relaxation exercise before bed. 

• Educate family, friends, and colleagues about your situation; it’s okay to say “no” and let people know your limits. It is also okay to ask trusted people in your life to help you make decisions. 

Tips for Memory and Recall challenges:

• To assist with memory, try using a daily organizer, calendar, or electronic device. 

• Use alerts/alarms as reminders. 

• Use sticky notes in places that you cannot miss (coffee maker, car keys, door to leave the house/garage) to remind you; take the sticky note with you. 

• Set up a virtual family calendar to track everyone’s commitments. 

• Include family and friends' input into shared calendars through calendar invites. 

• Communicate via email or text to remember important events or appointments. 

• Have someone take notes or meeting minutes at appointments or meetings. 

• Ask if you can record appointments or meetings so you can review them at your own pace later. 

• Assign a particular place for storing frequently used items such as car keys. 

• Encourage family members and colleagues to return borrowed objects to their proper spots.  

• Make lists and include family members in the list-making. 

• Review lists as a family so everyone is aware of upcoming activities. 

• Use association strategies to help recall people and names (e.g., to remember a name, associate it with someone else you know or a famous person with the same name). 

Tips for Information Processing and Problem-solving challenges:

• Plan the most challenging cognitive tasks for the time of day when you experience the least amount of fatigue.  

• Cognitive fatigue refers to a temporary decline in cognitive functioning following a period of intellectual effort. Short rest periods will help avoid this form of fatigue.  

• Use the LEAP strategy: 

  • Listen actively (e.g., maintain eye contact when listening). 

  • Eliminate distractions. 

  • Ask questions about what was said. 

  • Paraphrase what was said back to the person who said it. 

• Focus on one task at a time.  

• Minimize distractions by turning off the ringer to your phone, email, and text alerts, turning off the TV or music playing in the background, and the radio while driving. 

• Consider using earplugs to minimize noise distractions when doing cognitive tasks. 

• Give yourself extra time to complete tasks that require concentration. 

• It may help to break up big cognitive tasks into smaller steps.  

• Ensure the person you are interacting with has your full attention so you can listen and process what they are saying to you. 

• When you encounter word-finding problems, don’t stress. Use another strategy. Use a different word. 

  • Take a deep breath and continue. 

  • Come back to it later in the conversation. 

• Create an “inbox” for papers or emails that need to be reviewed by you (for example bills to be paid, appointments to confirm, school notices, etc.). Check the “inbox” every day when it is quiet, so you can focus on that task.  

If you're experiencing challenges with cognition, reach out for support and talk to your doctor, and your family. 

For more information and support about cognition and MS contact an MS Navigator from 8am to 8pm ET, Monday to Friday. 

Phone:1-844-859-6789 

Email: msnavigators@mscanada.ca 

Acknowledgements
 
We kindly thank the authors of this resource, Dr. Jodie Gawryluk, Dr. Katherine Knox, Dr. Sarah Morrow, and Dr. Lisa Walker.  

Special thanks to members of our MS community for reviewing the resource, Amanda Fraser, Adam Groh, and Andrea Butcher-Milne. 

References 

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