Multiple Sclerosis Takes a Physical and Psychological Toll on Caregivers, Too

Patricia Silva, PhD avatar

by Patricia Silva, PhD |

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MS caregiving

People caring for multiple sclerosis (MS) patients can have substantial physical and psychological health concerns, and their care can adversely impact their employment, according to research findings recently published in the International Journal of MS Care. The study is titled “Care Partners and Multiple Sclerosis, Differential Effect on Men and Women.

MS caregivers are defined as those who provide care for loved ones without compensation. Compared with care partners for other chronic conditions, MS caregivers are more likely to be men, young to middle age, parents of young children, and in the early stages of their careers.

Research assessing people caring for those with chronic diseases has associated caregiving to negative consequences on the care partner’s relationships, physical health, social life, and overall psychological well-being. Caregivers often change career paths, and a higher care burden is linked to a decreased ability to maintain paid employment, likely resulting from an increase in caregiving hours.

Tamara McKenzie, PsyD, and colleagues investigated the effect of MS caregiver stress on emotional well-being, physical health, and employment status using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry, a project of the Consortium of Multiple Sclerosis Centers. Since 1996 the consortium has maintained a voluntary registry of participants’ self-reported data obtained at enrollment and via semi-annual questionnaires.

Care partners of NARCOMS participants were asked to complete an online survey capturing demographic features, health status, caregiver burden (Zarit Caregiver Burden Interview), and the impact of caregiving on employment. Data analysis was performed on a group of 1,333 care partners. The majority were men (61.9%), with a mean age of 51.1 years. The mean Zarit total score was 24.6, indicating a mild caregiver burden.

The results revealed that in comparison with male care partners, female care partners had higher levels of stress and burden, and more medication use for mood/stress/anxiety disorders. The results also showed that male care partners were more prone to report physical concerns. Caregivers of patients with primary progressive MS (PPMS) reported a higher perceived burden, compared to partners of patients with secondary progressive MS (SPMS) and relapsing-remitting MS (RRMS). The researchers also found that during the past year, over 40% of care partners (559) had missed work due to caregiving obligations.

Based on the results, researchers concluded in their article, “future research should evaluate how to mitigate the adverse effects of caregiving and evaluate positive aspects of the role (…) There is a great need to further address the economic effects of informal care partners to gain a better understanding about what factors affect workplace absenteeism, the decisions to change jobs or reduce workload, and the financial impact of changes in employment secondary to the sex of the caregiver.”

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