Getting Help for Multiple Sclerosis Cognitive Impairment

Multiple sclerosis (MS) is a chronic autoimmune disease that affects the central nervous system. The disease leads to the breakdown of the protective covering around nerve fibers, which can affect the brain and body in numerous ways.

Over half of those with MS will experience changes in cognition, according to the National MS Society. Cognitive impairment affects our ability to think, remember, brainstorm, pay attention, concentrate, make decisions, plan and other critical things we need to function every day.

Having cognitive problems with MS is not typically like having dementia, stressed clinical neuropsychologist Peter Arnett, PhD. “That’s an important thing to convey,” he said. “Typically, people with MS will have problems with things like learning new information or processing things quickly. … But once a person with MS learns something, such as what they’re reading or watching on television or listening to a podcast, they’ll usually retain what they’ve learned, which is very different from dementia.”

Dr. Arnett is a distinguished professor of psychology and director of the neuropsychology of sports concussion and MS programs at Penn State University. He is also a past president of the National Academy of Neuropsychology.

In MS, cognitive challenges could show up at any stage of the disease, although the risk is greater the longer someone has the disease. “If the disease process is more in the spinal cord, you’re not going to see a lot of cognitive problems because the brain is the organ that mediates cognitive functioning,” Dr. Arnett explained. “But when you see a lot of MS activity in the brain, then the odds of a person experiencing cognitive problems are going to be greater.”

There are a number of medications and lifestyle changes people with MS can incorporate into their lives to help reduce symptoms, prevent progression and manage their disease. Currently, no medications or therapy can reverse any damage that has already been done, and there is no cure for MS.

Asking for a Comprehensive Evaluation

The National MS Society recommends a cognitive evaluation every year. This is where neuropsychology comes in. A neuropsychologist is an expert in how brain injuries or conditions affect the brain. Some neuropsychologists specialize in treating people with MS or similar diseases that affect the brain. These experts can help in two primary ways: by doing a comprehensive evaluation of how MS is affecting your cognitive function and then creating a rehabilitation program that could improve daily life.

Many MS clinics—particularly those affiliated with a large university and teaching hospital—have a neuropsychologist on staff or they can refer you to one. If you are not offered the option, tell your doctor you want to be referred to a neuropsychologist for a full cognitive evaluation. Some neuropsychologists offer telehealth.

Dr. Arnett recommended seeking an appointment early in the disease process—before cognitive changes become too disruptive. Earlier evaluations also provide a “baseline,” or an objective measure of what your current strengths and limitations are. This can help you and your health care team recognize if those change the longer you have MS or when you switch medications or dosages.

“Cognition is the most complex aspect of being a human being,” said John DeLuca, PhD, a neuropsychologist and senior vice president for research and training at the Kessler Foundation, a nonprofit focused on rehabilitation and research for people with disabilities. Dr. DeLuca is also a professor in the departments of physical medicine and rehabilitation and of neurology at Rutgers New Jersey Medical School and a past president of the National Academy of Neuropsychology.

Despite the critical importance of cognition, it’s not the role of your neurologist to focus primarily on your cognitive challenges. “To really get a sense if something is happening with your thinking and your cognition, you need a more fuller evaluation,” Dr. DeLuca said. “Some [MS clinics] will do a 90-second screening test of your processing speed, but even that is fairly rare.”

What a Neuropsychological Evaluation Includes

A neuropsychological evaluation will include a comprehensive interview about your lifestyle and health history. According to the London Neurocognitive Clinic in the UK, questions might include:

• What areas have you been struggling with?
• Do you have trouble remembering names, appointments or recent conversations?
• How often do you misplace things, like your keys or wallet?
• Do you find it difficult to stay focused on tasks?
• Are you easily distracted when trying to work or read?
• Have you experienced any trouble finding the right words or following conversations?
• Do you have difficulties understanding others or expressing yourself?
• Do you have trouble planning, organizing or multi-tasking?

The evaluation could take 3 to 5 hours and will include a series of tests to measure your cognitive areas like memory, concentration, language, visuospatial abilities, executive functioning and processing speed, which is how quickly you can receive something (reading, seeing or hearing), understand it and respond.

You will also be given questionnaires to measure things like depression, anxiety, fatigue and sleep.

Patients with MS often complain about their memory getting worse, but the problem often lies with their processing speed, Dr. DeLuca said.

“In general, patients tend to have problems early in the disease with slow processing speed, and that can have a variety of consequences,” he explained. “That would mean that they’re not learning as much information because their processing of that information is too slow to grasp everything. That’s where sometimes that leads to patients thinking that their memory is a problem, but their memory could be fine.”

These distinctions are important because it affects how each problem is addressed.

Dr. DeLuca aims to show his patients during the evaluation what their specific challenges are—and it may not be what they think. “Rather than me giving them a bunch of tests and telling them sometime later, ‘these are the results,’ I try to have them feel the difference, so they can see, for example, it’s more a processing speed problem, not difficulty in learning and memory. Simply understanding that really helps the patient.”

After Your Evaluation

After the comprehensive evaluation, the neuropsychologist will provide you a set of conclusions about your cognitive functioning. They can also work with you—and often your health care team—to develop a plan to address your specific struggles and improve your cognitive function. For example, if you are a college student having trouble with processing speed, you may want to record professors’ lectures to play back later at a slower speed and with the ability to pause and rewind.

Repetition can also be helpful, so you may want to ask family and friends to repeat something or write down information for you. The Job Accommodation Network outlines workplace accommodations that are supported by the American with Disabilities Act.

Some problem areas—like sleep or depression—can be modified in other ways, too. Depression, in particular, is quite common in MS, with about half of MS patients having clinically significant depression at some point, according to Dr. Arnett. His research team was a part of a Phase 3 clinical trial that showed an improvement in depression symptoms in people with MS who took part in an online self-guided cognitive behavioral therapy program. Participants went through 10 modules online in 10 weeks.

“What we found was there was a dramatic decrease in depression scores in the two groups that had the treatment compared to the control group (who was on a wait list for the treatment),” Dr. Arnett said. This was true for a group in Germany who took the German-language version, as well as three different regions of the U.S.

Over 50% of the participants’ depression got better after the treatment. The researchers want to now look closer at who benefited and who did not and why. There is a mental health therapist shortage in the U.S., and having an effective online depression program could expand access to care.

Another study from Dr. Arnett showed that people with MS who had significant chronic pain or cognitive issues were less likely to be depressed if they used better coping strategies. For example, it’s better to address stress in your life, like having a tough conversation with a co-worker, than avoiding the topic and the person altogether.

Many people with MS are resilient, with good coping strategies and no depression, he said. “There’s a lot to be learned from that. The more we learn about that, then we can help people who are having a little bit more difficulty and struggling more,” Dr. Arnett said.

Numerous medications and treatments are now available for people with MS, with several promising new drugs on the horizon. But managing cognitive challenges is a critical part of therapy to improve your day-to-day life.

“Neuropsychology has a really important role to play in the care and management of people with MS,” Dr. Arnett said. “We have a lot to offer in terms of helping people understand what can be kind of invisible deficits. … Neuropsychologists are good at making these things that can be really disruptive in people’s day-to-day lives more tangible. Neuropsychologists play an important role in, first of all, helping people to understand where their strengths and cognitive limitations might lie, and then helping them function better.”