Study Focuses on Caregivers and Their Often Ignored, But Key, Role in Treating MS

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Caregivers of MS patients

A new study from France delves further into the life of multiple sclerosis (MS) caregivers and how they are perceived by MS patients, physicians, and the caregivers themselves. The report, EVASEP: A Noninterventional Study Describing the Perception of Neurologists, Patients, and Caregivers on Caregivers’ Role in the Support of Patients Suffering from Multiple Sclerosis Treated with Subcutaneous Interferon Beta 1a, appeared on Aug. 1 in the journal Multiple Sclerosis International.

Caregivers play an important role in the lives and treatment of people with MS, but research does not often focus on their role.

The investigators, led by Cecile Donze of the Functional and Physical Readaptation Medical Service, in the Group Hospital of the Catholic Institute of Lille,  studied patients with relapsing-remitting MS (RRMS) who had been treated with subcutaneous interferon-β-1a (IFN-β-1a) for more than two years.

The team questioned 100 neurologists about their perceptions of the role of caregivers, and gave a study questionnaire to 151 people with RRMS and 151 caregivers.  The researchers designed the questionnaires specifically for individuals in each of the three groups.

People in all groups — caregivers, RRMS patients, and neurologists — felt the caregiver’s most crucial work was in providing moral support and helping the patient fight the disease. Moral support was ranked particularly high by caregivers themselves, given an importance above that expressed by those with MS and neurologists, a difference that was statistically significant. Caregivers also felt that their role in helping patients to fight MS was more important than neurologists did. Access to knowledge about MS and available MS treatments was considered to be less important among those providing support than it was by the people with MS themselves.

“There are many unmet needs in the perception of the role of caregivers for people with MS which need to be addressed to deliver the most effective care package for patients and to support the needs of the support provider,” the authors wrote.

Overall, caregivers play an important role that is valued by patients, physicians, and the caregivers themselves, although exactly what they do is not necessarily agreed upon or always recognized.

The authors emphasize that the caregiving role can be difficult, noting, “Partners have to cope not only with the presence of the disease but also with the unpredictability of its prognosis, which includes the possibility that their partner may become severely physically and cognitively impaired.”

Caregivers can ultimately have a reduced quality of life and an increased risk for mental health problems. Acknowledging the caregivers’ role and providing support can be a critical aspect of MS, one that is not often addressed.

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  1. Linda Moran says:

    Study assessing role of caregiver support for treating MS is significant and worthwhile. I suggest a study to evaluate the role of of organized religion as a treatment for MS this is an overlooked opportunity to study and document faith and its impact on people who have MS.

  2. Lorraine says:

    Whenever I read an article like this, it leaves me feeling ‘mis-assessed’ as a caregiver. I don’t know if it’s just my particular situation or whether the issue I face is being hidden under the guise of ‘cognitive impairment’.

    What I face, and what caused me to send my sick partner packing (though I still care for him daily), I cannot see as anything less than sociopathic behaviour, possibly brought about by damage to the frontal lobe. Here, I am talking about complete lack of empathy, self-absorption, inappropriate social behaviour, lack of remorse, giving past events a dark interpretation, being very quick to misinterpret words or actions, etc. If he were not incapacitated by his MS, I would be afraid to be around him. Not being able to hit me, which he clearly wanted to do, he verbally abused me on a regular basis, often in front of our young daughter. I just didn’t get it: how could you treat the person who is trying their utmost to make your life a bit more bearable so terribly.

    And yet, when we were first faced with his illness, neither his GP nor his neurologist made any mention of symptoms of this nature. When he went to his GP for depression, the GP explained to me that it was understandable that, given his situation, he would be depressed. Yet, I always felt there was more to it than that. After that, the symptoms listed above, which had already emerged before the diagnosis, became increasingly worse. No explanation or support from the professionals.

    It was only after 8 years of this, when I couldn’t handle it any longer and started making arrangements for him to move out, after he was assigned the support of a ‘coach’ specialised in acquired brain impairment, that I was given the first indication that these behavioural changes were, at any rate, not uncommon symptoms of MS.
    We have now lived apart for 2 years and I am so glad that I made that move. His behaviour is increasingly disruptive and it is now acknowledged by everyone helping him that this has arisen due to the brain damage caused by his MS.

    This is what caregivers need to be told and where they need support. If we had known from the beginning that my partner’s behaviour was a symptom of MS, it may not have made a difference to him; however, it would have made a world of difference to me.

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