Life Partners of RRMS Patients Experience High Strain Even in Early Disease Stages, Study Finds

Cognitive and neuropsychiatric problems caused by relapsing-remitting multiple sclerosis (RRMS) — such as memory and processing issues, depression, and irritability — are the main source of strain among life partners of MS patients with mild disability, a study finds.

The study, “Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis,” was published in the journal Multiple Sclerosis and Related Disorders.

Caregivers play an important role in the lives and treatment of those living with MS. They not only provide daily assistance with MS patients’ personal care and mobility, but also help them do leisure activities and cope with the disease.

However, providing this positive support can be a heavy burden, causing extreme fatigue and depression for the caregiver. That ultimately can lead to reductions in the quality of care given the MS patient.

Most studies addressing caregivers’ health problems have focused on patients at more advanced stages of the disease with more severe disability. That means there is little information on the burden experienced by life partners of MS patients during the early disease stages.

To evaluate potential factors for caregiver strain caused by RRMS, researchers in the Netherlands asked both patients with mild disability and their life partners to complete specific questionnaires. The person with MS was employed or had worked at a paid job in the previous three years.

The analysis was conducted as part of the MS@Work study, a three-year prospective observational study being conducted in the country with the support of the National Multiple Sclerosis Foundation.

From 222 patients who participated in the study, the team included data from 173 patients with RRMS (79% female; mean age of 42.8 years) and their life partners.

Results showed that the median level of caregiver strain was a score of 4 on the Modified Caregiver Strain Index (MCSI), with scores ranging from 0 to 21, out of a maximum of 26. Using a score of 7 as a cut-off value, indicative of “burdensome situations occurring ‘sometimes’ or ‘always,’ ” the team found that 24% of the life partners had above-average levels of caregiver strain.

The three types most frequently reported were: other demands on the caregiver’s time, the need to make changes in personal plans, and the need to make family changes. Physical strain, feeling overwhelmed, and work adjustments were experienced less frequently.

Life partners of MS patients who did not have a paid job at the time of the study reported higher levels of strain than those who were employed.

Analysis showed significant links between a higher level of caregiver strain and the patient’s poorer neurological and cognitive functioning. These included greater physical disability, decreased mobility and leg function, and slower information processing speed. The age and fatigue levels of the person with MS were also associated with the caregiver’s burden, with higher strain linked to older patients with greater fatigue.

In an interesting finding, some personality traits of the MS patient — specifically, higher neuroticism and lower conscientiousness — were associated with higher caregiver strain. Lower conscientiousness is generally associated with a lack of impulse control and poor organization, while higher neuroticism is linked to less stability and greater congeniality.

“Based on these findings, we can confirm the hypothesized association between higher caregiver strain on the one hand and more cognitive and neuropsychiatric problems on the other hand,” the researchers said.

These findings highlight the importance of early identification and treatment of cognitive and neuropsychiatric problems in people with MS, but also the need to create awareness of the strain on caregivers.

“As the caregivers’ wellbeing is extremely important for their continuing role in assisting the person with MS, it is important to routinely assess caregiver strain in life partners of persons with MS,” the researchers concluded.