Care Partners Offer Critical Insights into Cognitive Symptoms of Multiple Sclerosis

Engaging care partners in doctors’ visits can give a more complete picture of cognitive impairment related to multiple sclerosis.

Even before Nicole Lemelle was diagnosed with multiple sclerosis (MS) at the age of 25, her now-husband, Tommy, had already noticed a decline in her physical abilities and vision. Eventually he started to notice her cognitive decline. She would get lost on the way to her nursing classes at Louisiana State University – a campus she knew well – in their hometown of New Orleans. She would forget conversations, professors’ names and words for everyday objects.

“At first, she dismissed it as ‘absent-mindedness,’ but it got worse, and I could tell something was wrong,” Tommy said.

Nicole’s cognitive struggles are relatively common in MS – up to 60% of people with MS experience symptoms of cognitive impairment. Cognitive problems come from the physical damage MS does to brain tissue, including in the grey matter.

“I always thought MS was just physical,” Tommy said. “The cognitive changes came as a surprise.”

The early signs of Nicole’s cognitive impairment were critical to the treatment recommendations provided by her doctor, but these early signs can be hard for people with MS to fully grasp.

Better MS Care Through Multiple Views

Mary Bailey, M.D.

MARY BAILEY, M.D., FROM THE MANDELL CENTER FOR MULTIPLE SCLEROSIS AT THE MOUNT SINAI REHABILITATION CENTER, MAKES SURE TO INCORPORATE CARE PARTNER INPUT IN TREATMENT PLANS FOR PEOPLE WITH MS.

In 2010, Nicole experienced a rapid progression of her MS symptoms, leading Tommy to quit his job as a bookstore manager to become her full-time care partner. This role allows him to offer her clinicians his point of view on her day-to-day struggles. And sometimes, his perceptions differ from hers.

With cognitive deficits, researchers have found that care partner insights can have a stronger correlation with assessment results than the person with MS’ self-judgment.

That shouldn’t discount the patient’s perceptions, but rather add to it, according to Mary Bailey, M.D., a neurologist at the Mandell Center for Multiple Sclerosis at the Mount Sinai Rehabilitation Center, Hartford, Conn.

“People with MS are often aware they may be experiencing cognitive impairment to a certain degree,” Bailey said. “But cognitive changes can be overlooked by doctors because patients may not always notice those gradual changes and therefore not report them during a visit.” The reason for this lack of awareness can be due to many things. For example, concomitant symptoms such as depression and anxiety are common symptoms experienced by MS patients that have a connection to self-reported measures of cognitive function.

Bailey makes sure to ask care partners like Tommy for their thoughts during every medical visit. They can fill in information gaps and pick up on symptoms the person with MS might not. Observations from both the person with MS and their care partner can give a far more precise picture of their current cognitive and physical challenges, which in turn helps healthcare professionals provide the best recommendations. For instance, when Tommy relayed that he’d noticed Nicole had difficulty using a spoon, her occupational therapist recommended a lighter one with a different shape, which improved her independence.

Cognitive changes can be overlooked by doctors because people with MS don’t always notice those gradual changes.


Celgene Caretaker

Solutions to Help Cognition

Researchers are exploring a variety of ways to manage cognitive impairment in people with MS. Recent studies, for example, suggest there may be benefits to cognitive rehabilitation using established memory retraining methods. Keeping the mind active may also help.

“When it comes to managing the cognitive impairment in MS, clinicians can help patients in a multitude of ways. Patients are often interested in activities like computer-based brain training to help strengthen and maintain cognition,” Bailey said.

Nicole, for example, likes to read and to challenge herself with an app that has brain games for memory, math and vocabulary – activities that have helped keep her mind sharp, according to Tommy. “I notice a difference on days that she reads or spends some time with the app,” he said. “I think it helps her focus.”

Doctors can also offer patients practical strategies to help compensate for cognitive changes, including improving organization and leaving extra time to learn and practice new activities.

Staying Vigilant

TOMMY LEMELLE IS A FULL-TIME CARE PARTNER FOR HIS WIFE, NICOLE, WHO HAS MS. HE REGULARLY COMMUNICATES WITH HER CARE TEAM TO KEEP THEM INFORMED OF ANY CHANGES IN HER COGNITIVE FUNCTION.

TOMMY LEMELLE IS A FULL-TIME CARE PARTNER FOR HIS WIFE, NICOLE, WHO HAS MS. HE REGULARLY COMMUNICATES WITH HER CARE TEAM TO KEEP THEM INFORMED OF ANY CHANGES IN HER COGNITIVE FUNCTION.

Cognitive issues in multiple sclerosis are much more subtle and harder to pin down than physical symptoms. “If there are subtle cognitive changes, I don’t always notice because I get used to seeing it every day,” Tommy said. In turn, he gathers additional observations from loved ones and Nicole’s physical therapists and shares those changes with her doctors.

Bailey emphasizes engaging the care partner in her consults, but she also knows firsthand that caring for someone with MS can be emotionally and physically tiring. Her father has MS with cognitive impairment and her mother is his care partner. Her mother’s input is valuable not just at the doctors’ visits, but also at sessions with physical therapists, psychologists and other health care professionals.

While it is valuable and important for the care partner to be involved in visits with the MS provider, Bailey recommends care partners share a list of concerns and observations with the   other members of the patient’s care team at the start of each visit and then, if desired, leave until the session is complete. This approach allows their loved one with MS to have one-on-one time with the practitioner, while the care partner gets an opportunity to rest.

“Being a care partner is a job you do out of love,” said Bailey. “I see a ripple effect through entire families, and that’s why it’s important to protect the care partner and make sure they are taken care of too.”

To learn more about the importance of brain health in MS, read “Shifting Focus Up Toward Brain Health in Multiple Sclerosis.”