Symptom Management

 

Cognitive difficulties are common symptoms of multiple sclerosis. It’s estimated that 60 percent of people with MS experience problems with short-term memory and have trouble sustaining concentration and attention. Some experience cognitive decline later as their disease progresses, others experience changes early on because of the location of a lesion, and some never do. It’s only been in the last two to three years that neuropsychologists have been able to identify the specific, distinct ways in which cognitive decline occurs within MS. As a result, some cognitive rehab clinics now exist that provide a more radical and broader approach to treating cognitive issues. Large research pilot studies are now underway to document these effects.
 
As a psychologist, I had few, if any, treatments or resources available to my MS patients for cognitive difficulties until recently. That changed when I met Dr. Rita Carroll of Main Line Rehab in the Philadelphia suburbs where I practice. I was excited to learn she had developed a program working one-on-one with persons with MS in their homes to either prevent or delay cognitive decline. Her program is providing exciting, new opportunities to treat cognitive problems and is changing how we think about and cope with MS. I invited her to share her impressions and experience with the MSFocus community in the following discussion.
 
Miriam: You know, Rita, it’s estimated that 60 percent of folks with MS will experience cognitive difficulties, and yet, I find MS practitioners rarely discuss it with people with MS. There was an unintentional attitude of ‘If there is no treatment to offer, why talk about it?’ And it is terribly misunderstood. Because people with MS can be very expressive and not struggle with communication, they don’t appear the same way as do others with diseases that affect thinking.
 
Rita: You’re right. Some studies are showing it might be as many as 75 percent who experience cognitive issues with MS, but most people do not know about that aspect of MS. Cognitive problems can have a profound impact on the person with MS and their family, as well. The person with MS may not understand why they are forgetting things, or having difficulty following conversations and planning their day. Coupled with that, family members are confused by changes in behavior and don’t realize that cognitive changes impact behavior and function. These changes can be frightening, overwhelming, and often overlooked by medical professionals.
 
Miriam: As a rehabilitation specialist, what are the typical ways you see MS affecting thinking and memory?
 
Rita: Mostly we see an effect on concentration, focus, memory, and executive functions. Concentration and focus are essential to pretty much anything a person does, so strong attention skills are very important. If there are problems in this area, then every other cognitive skill can be impacted.
 
Memory impairment can be more than just forgetting a shopping list or instructions from a supervisor at work. It can be difficulty holding information in your head long enough to do something with it, such as remembering the cost of your latte at Starbucks long enough to pull out the cash to pay for it.
 
Then there are executive functions. Problems with executive functions can influence planning, organizing, adaptability and problem-solving. These skills are essential for successfully functioning in everyday life.
 
Miriam: So how exactly would one know if they are experiencing cognitive decline? And does it typically occur as the disease progresses?
 
Rita: Sometimes the person with MS is aware of the change in thinking. It may take longer to get things done, or they may get feedback at home or at work that they didn’t do what was asked, or they simply forgot something. Perhaps there are difficulties with routine banking, or trouble figuring out how to solve a household problem. Sometimes people with MS have issues with keeping appointments and multitasking. These are some of the common complaints that signal cognitive problems. And these kinds of things can show up suddenly and wreak havoc on how a family functions.

There can be huge variations in the way cognitive dysfunctions show up and the progression of the disease. The potential for a corresponding cognitive decline is different for each person. As the disease can affect various parts of the brain, each person is likely to have a different set of cognitive problems depending on where lesions in the brain are located.
 
Miriam: Should everyone get neuro-psychological testing? Are there other ways to assess this?
 
Rita: Neuropsych testing is incredibly helpful when it’s available. It helps to document very specific cognitive abilities. When a neuropsych test is done well, it identifies areas of cognitive strength and weakness and can be very helpful if a person embarks on a course of cognitive rehabilitation or just wants to know what their cognitive deficits are.

Functional assessments can be an even more powerful tool. Cognitive rehabilitation specialists can evaluate function in the home and community to tease out the cognitive issues that directly affect function. Interviews using formal and informal measures can round out the assessment.
 
Miriam: So is there real help?
 
Rita: Absolutely. Cognition and function can be retrained through home- and community-based cognitive rehabilitation therapy. CRT has been an integral part of rehabilitation for people with head injuries for decades. There is a growing body of evidence that CRT can be an effective tool for improving cognitive skills and that these skills can be generalized to apply to a variety of settings.
 
Up until recently, most of the CRT for people with MS has been conducted in the rehab hospital or clinic setting. This is great, but CRT can be so much more effective and relevant when provided in the person’s own home and community. As skills are developed and practiced in a variety of ways, and strategies are fine-tuned, the person has the opportunity to immediately put them into practice in the real world, and receive instant feedback or cueing from the therapist to improve performance. Also, as the person makes progress, there is typically a level of hopefulness restored. This helps to boost confidence, and promotes community access and engagement.
 
Miriam: What exactly is cog rehab treatment? What can it do? What’s involved? When should one start it?
 
Rita: Cognitive rehabilitation is direct retraining of skills lost or altered due to a disease or injury. The goal is to improve cognition, compensate for deficits, and restore function. This is accomplished through education, skills training, strategy development, functional application, and building awareness.
 
CRT promotes neuroplasticity, which is the brain’s ability to reorganize its structure, function, and connections in response to internal and external stimuli. It also helps to improve cognitive reserve, which is believed to be protective against cognitive decline.
 
Also, CRT can complement the effectiveness of medications, and it can build awareness, confidence, and hopefulness.
 
A lot of the CRT being provided right now is computer-based, but this really should only have a small role in the CRT session that ideally includes real life strategy and skill development and application in many settings. CRT should be uniquely tailored to the person’s abilities, goals, environment and support system. This isn’t about running someone through a program. Rather it is about seeing each person as an individual with unique needs and creating a personalized course of treatment. 
 
As for when to start, people often start after the cognitive problems have significantly affected their relationships, household management or work. Some people with MS are beginning to start CRT before they experience cognitive decline, as a way to strengthen cognitive skills before issues show up.
 
Miriam: What’s unique about your treatment program – Main Line Rehab – in the Philadelphia and Pittsburgh areas?
 
Rita: I think it’s the fact that we use evidence-based practices for CRT and services are provided in the home and community. We believe that cognitive rehabilitation is more effective and efficient when delivered in the environment in which the skills and compensatory strategies will be used – in other words, the person’s own home, workplace, and/or community. This produces strong, relevant outcomes for each person more quickly. A side benefit is that if the person desires, family members and other support people can be educated about the cognitive dilemmas that can arise with MS and also learn how to best support the cognitive rehabilitation process as part of a collaborative team.
 
Miriam: What can we expect to happen in the MS community with cognitive treatment for others?
Rita: I am hopeful that we will begin to see dedicated funding for cognitive rehabilitation. There is some limited funding available for CRT services through some state Medicaid waivers, and, of course, people can pay privately for these services right now.
 
Currently, we are receiving some funding for short-term services through the Greater Delaware Valley Chapter of the National MS Society.
 
We also received a grant to develop home-based CRT services that are specifically designed to meet the needs of the people with MS. Therapy sessions include skills training, strategy development, and functional application. As always, our model includes building awareness as a means for people to better self-evaluate and determine when skills and strategies are best applied.
 
One of the biggest issues right now is that CRT, for any diagnosis, is typically not paid for by medical insurance. Though there is a strong and growing body of evidence that CRT works, there has been little support for coverage on the insurance front. This situation is further complicated by the wide range of therapists who provide the services. The Society for Cognitive Rehabilitation acknowledges that providers of CRT may have education, psychology, speech, or OT credentials, and the Society offers a certification in cognitive rehabilitation.
 
Going forward, the priority will be to have these services available to all people with MS. Coverage through traditional medical insurance is a goal, and of course, therapists will need to receive specialized training to address the unique cognitive dysfunctions of people with MS.
 
Miriam: How would one go about learning if there are these resources in their own communities?
 
Rita: I do think that the word is slowly getting out about the need for CRT services and that the payoff can be huge. We have received wonderful feedback from the people participating in our grant, with many stating that they never thought they would be able to return to some of the activities they previously participated in!
 
The good news is that some medical specialists are becoming aware of CRT and may have some resources. And, of course, MS organizations like the Multiple Sclerosis Foundation, MSAA and NMSS may have access to resources.
 
Miriam Franco, MSW, Psy.D., MSCS, is a Professor of Sociology at Immaculata University and a clinical psychologist. She is an MS Certified Specialist and has published two research studies on the use of guided imagery to lower anxiety and injection anxiety with multiple sclerosis. She is on the Health Care Advisory Board of the MSAA and is a Health Partner with the NMSS.
 
Rita Cola Carroll, Ph.D., has worked in the field of cognitive rehabilitation for more than 34 years, initially in an acute rehab setting, and for the last 30 years as president of Main Line Rehabilitation Associates, a home- and community-based program serving Pennsylvania. Her primary mission has been to develop relevant and effective cognitive rehabilitation services for individuals with neurological diagnoses, including MS.