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

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 [email protected] 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.

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6 comments

  1. Heidi says:

    But what is done to support the caregivers? I’m a caregiver for my Dad who has emphysema. I have MS. All I get from the local council is phone calls saying his garden needs attention, have I sorted out a cleaner yet etc. These studies are all well and good but what is done to help in light if them?

    • Chris Wassenaar says:

      My mother is ,82years old she prepares food. Does the washing of all my clothes. Takes care of all domestic issues.

  2. Concerned Caregiver says:

    I am a caregiver for my wife who was diagnosed with ms 20 years ago. I do a majority of the housework and prepare every meal. This is a great responsibility and I also consider it to be an honor. Sometimes when discouraged I remind myself that parents of young children (toddlers/infants) have similar burdens. I’ve deducted that I’ve prepared over 10,000 meals over the last six years, then I reminded myself that moms and dads do the same thing day in and day out. Dr Phil said sometime last month that you can’t be a caregiver and lover at the same time, but, I ask you once in the bonds of marriage and your spouse’s health deteriorates, what choice is there? Vows have been made, and I intend to keep them. Rare in today’s society, but I hold marriage as a sacred institution. The heartbreaking thing for me is helping dispense medication that have dozens upon dozens of side effects that are similar to MS symptoms!! Also, these medicines that attack the body instead of heal it, seem to not be effective at all! Why prescribe something that causes dizziness, fatigue, tremors, cognitive loss, liver or kidney failure, etc… (I could go on and on) to someone that is fighting some of these very same conditions already? And when I suggest using more natural remedies to my wife and her neurologist, they look at me like I’m speaking in an alien language. How’s that for strain! Once the patient can barely lift the pills (6-8) to their mouth daily, I believe it is time for another approach! If you have made it this far please pray that my precious wife will be receptive to treatments that heal instead of harm. And why do doctors prescribe opiates! DMT medications that originated as mold repellents for fabrics! Also, if a medication is truly beneficial, why give the patient a steak dinner to tell them about it? Lets please work together to help those with MS. Current medications are not impressing me very much. “Let food be thy medicine” Hippocrates

    • Nancy says:

      God Bless you! I have RRMS and my working self-employed husband does as well as he can. Your feelings sound so much like what I see in him. When we married, almost 22 years ago, I’d just been diagnosed a couple of years earlier. He wanted to be married; he still does. You are wonderful to hold to your wedding vows. We’re also doing our best to do the same. Thank you for this post.

    • Hege says:

      I have MS and i feel the same way about medication as you do. If you contact me [email protected], i can tell you my story of how ive changed for the better.
      Medication made me feel worse, and it also made Catch any kind of sickness anyone near me would have.
      Hege

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