Multiple sclerosis: Patients’ cognitive dysfunction ‘on the radar’
By Kate Johnson
John DeLuca, PhD, alternates between frustration and motivation as he talks about cognitive rehabilitation in multiple sclerosis (MS). As a neuropsychologist and senior vice president of research and training at Kessler Foundation in West Orange, N.J., he is a world-renowned expert, making his simple take on the topic particularly appealing.
“In some respects, it comes really clear to me,” he said in an interview. “Patients have a problem. You have to listen to what the problem is, understand the problem, assess it, and then do something about it.”
Thirty years ago, neurologists didn’t believe that cognitive impairment was a manifestation of the disease. It wasn’t on the radar. Now they are starting to listen but don’t feel they know what to do.
In 2018, Dr. DeLuca, who is also a professor in the department of physical medicine and rehabilitation and of neurology and neurosciences at New Jersey Medical School, Newark, headed up an expert panel that recommended routine cognitive screening, monitoring, and intervention for individuals with MS (Mult Scler. 2018 Nov;24:1665-80). Yet despite an estimated two-thirds of individuals with MS experiencing some form of cognitive impairment, the recommendations are still rarely a part of MS care, said Dr. DeLuca.
“Thirty years ago, neurologists didn’t believe that cognitive impairment was a manifestation of the disease. It wasn’t on the radar. Now they are starting to listen but don’t feel they know what to do.”
There are many reasons for that inertia, some of which he dismissed impatiently: “[They say] ‘I don’t have the time to do an assessment (which, by the way, takes 5 minutes), I can’t get paid, and I don’t have the staff.’ Those are very common complaints, to which I say: ‘so you’re not going to do anything?’ That’s just not a good answer.”
Now, his tone switches from exasperation to inspiration. “The answer is, well, let’s find out what we can do. That is a good question, and I’m happy with that question. But sometimes we can’t even get to that one,” he said.
The question of what to do about cognitive impairment may seem daunting to many neurologists and patients, especially in the context of a degenerative disease, but Dr. DeLuca passionately resists that it is a futile effort.
“MS is a degenerative disease, but not all aspects of it are degenerative,” he said. “With cognitive rehabilitation, we can see improvement. Using neuroimaging, we can see that these changes correlate with changes in brain activity. Areas that were involved in brain activity before adapt and make new connections with other areas.”
Dr. John DeLuca
In a recent review, summarizing the literature in this area, Dr. DeLuca and colleagues pointed out that the vast majority of cognitive rehab in MS has focussed on learning and memory (Nat Rev Neurol. 2020 Jun;16:319-32). In this domain, approaches developed by his own team, such as the Kessler Foundation’s modified Story Memory Technique and the Kessler Foundation Strategy Based Techniques to Enhance Memory, are producing results. But what sort of results?
“When you think about the influence of cognition on life, it’s virtually everything,” he mused. “So, what do you pick to demonstrate a cognitive improvement?” Some skeptics argue that patient-reported improvements are subjective, but he dismisses that too. “The whole idea of rehab is to help the patient today. And if I can help the patient today, then I’ve been successful.”
That’s not to say there isn’t objective proof of the benefits of cognitive rehab. In fact, this approach has a long history of success in patients with other conditions.
“Cognitive rehabilitation has been around for decades – it just hasn’t been for MS,” he said. “What we’ve done at the Kessler Foundation is – we’ve taken proven techniques that have been shown to improve learning and memory, proven techniques that have been shown for decades, sometimes with more than 100 years of research, to improve learning and memory, and we said, well, we know that persons with MS have problems in learning and memory. So, let’s see if we can take these proven techniques and apply them to the benefit of people with MS. And we have shown that these techniques can help persons with MS who have cognitive symptoms.”
We’ve been able to show in some of our work that these maladaptive connections are actually associated with worse performance. So, it’s not just making connections that is important, it’s the type of connections, the quality of connections, the strength of the connections.
credit: Science Picture Co/Science Source
Dr. DeLuca’s research interests are in cerebral mapping and functional imaging – techniques that can demonstrate how MS changes the brain and how such changes can be modified. Imaging evidence of brain atrophy and how it correlates with cognitive decline are the types of concrete outcomes that many scientists, including those at the Food and Drug Administration, seek to assess the impact of disease-modifying MS drugs. But thus far Dr. DeLuca said that drugs hold little promise for preserving or restoring cognitive function in MS – and the modest brain changes they produce take years to show up on imaging. He is more excited about quick fixes that can have profound benefits for patients.
“When you do cognitive rehab over a period of 6-12 weeks, there’s not going to be any change in brain atrophy. But what you do find is change in functional status of the brain. … That is, you can show the areas involved in learning and memory, such as the hippocampus, actually creating more connections with other areas of the brain that are involved in memory.”
Sometimes the brain makes new connections to compensate for ones it has lost, but sometimes such “reroutes” are not beneficial, a phenomenon known as maladaptive compensation. “We’ve been able to show in some of our work that these maladaptive connections are actually associated with worse performance. So, it’s not just making connections that is important, it’s the type of connections, the quality of connections, the strength of the connections.”
But even clinicians who recognize the toll that cognitive impairment takes on their patients feel unequipped to address the problem. Again, Dr. DeLuca’s advice is refreshingly simple: “You don’t have to do the cognitive rehab yourself. You don’t even have to find someone to do it. Just refer to a rehab hospital.”
But he acknowledged that, outside of major cities, there is a shortage of specialists in MS cognitive rehab, and on top of that, “insurance companies will do everything they can to not pay.” These barriers will diminish with time, he predicted.
In 2012, Dr. DeLuca and coauthors published a Consortium of Multiple Sclerosis Centers consensus statement on the need for screening, assessment, and treatment of cognitive dysfunction in MS (Int J MS Care. Summer 2012;14:58-64). In that paper, they reported survey results showing less than half of health care respondents had a formal cognitive screening protocol for MS patients. That finding was reflected 6 years later, in the National MS Society 2018 panel recommendations for cognitive screening and management. “Still, most clinics do nothing about it – don’t even assess it. It’s still the issue,” he said. And yet, he is optimistic.
“It’s very interesting, the history of cognition in MS, where, in the very beginning, there was an understanding that there was a cognitive problem, but by the turn of the 20th century, there was a whole movement in neurology to say, this is not part of the disease – it’s just part of being depressed or something else. That didn’t turn around until the 1980s, when some of the neuropsychological literature was showing that there are actual problems. And neurologists weren’t reading that literature and didn’t believe it until 20 years ago. So today, the patients are still complaining, and the neurologists are at least listening where they didn’t before.”