Care Partners and Multiple Sclerosis

Abstract

Background: Caring for someone with multiple sclerosis (MS) can be a stressful experience that requires clinical attention. We investigated the impact of caregiver stress on the emotional well-being and physical health of the MS care partner using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. Methods: Care partners of NARCOMS participants were invited to complete an online questionnaire that captured demographic characteristics, health status, caregiver burden as measured by the Zarit Caregiver Burden Interview, and impact of caregiving on employment. Results: Of 1446 care partners who agreed to participate, 1333 had complete data. Most were men (n = 825, 61.9%), with a mean (SD) age of 51.1 (11.2) years. The mean (SD) Zarit total score was 24.6 (15.1), placing the overall group in the mild caregiver burden range. Compared with male care partners, female care partners reported higher levels of burden and stress and more medication use for stress/anxiety and mood disorders. Male care partners were more likely to report physical concerns. Care partners of people with primary progressive MS reported greater perceived burden than did partners of people with secondary progressive MS and relapsing-remitting MS. More than 40% of care partners (559 of 1288) had missed work during the past year owing to caregiving responsibilities. Conclusions: Care partners of people with MS have substantial physical and psychological health concerns and experience an adverse impact on employment. Future research should evaluate how to mitigate the adverse effects of caregiving and evaluate positive aspects of the role.

Measuring burden in caregivers of people with multiple sclerosis: psychometric properties of the CSI questionnaire

“…Caregivers of people with higher disability levels are more likely to suffer moderate to severe impact on their own health 11,14. Care partners of people with primary progressive MS reports greater perceived burden than partners caring for people with relapsing forms of MS 12. Patient perception of stigma is associated with greater informal caregivers’ burden 15.…”

“…Patient perception of stigma is associated with greater informal caregivers’ burden 15. Female caregivers have higher level of burden and stress as well as more medication use for anxiety and mood disorders 12. The unpredictable natural history of MS may also exacerbate caregiver stress 6…”

Psychological Shift in Partners of People with Multiple Sclerosis Who Undertake Lifestyle Modification: An Interpretive Phenomenological Study

“…These positive psychological changes translated into real life changes. Rather than the limitations of working opportunities that are frequently experienced by those in a caregiver role (Hakim et al, 2000 ; Bogosian et al, 2009 ; McKenzie et al, 2015 ), some partners had taken the opportunity to resign from stressful jobs, shift their location of residence to enhance their lives, adopt lifestyles that were mutually beneficial to both the person with MS and the partner and genuinely improve their own health, seemingly shifting from finding benefit through adversity to finding benefit from a new and challenging life that they had actively chosen.…”

Assessment of Caregiver Inventory for Rett Syndrome

“…In multiple sclerosis patients using the Zarit caregiver burden tool (Zarit et al 1980), McKenzie et al (McKenzie et al 2015) reported a higher physical burden reported by the male caregivers and more psychological issues by females. Caregivers with more stress (mood disturbances, stress, anxiety, sleep disturbance, and headache) reported higher levels of burden.…”

“…Other surveys (Niederehe and Fruge 1984, Poulshock and Deimling 1984, Kosberg and Cairl 1986, Deeken et al 2003, Whalen and Buchholz 2009) have responded to this weakness by creating multidimensional approaches, but have been regarded as problematic due to the overly large number of questions, inadequate subscales, or concerns for interdependence of the individual subscales. More recently, caregiver studies have been conducted on multiple sclerosis (McKenzie et al 2015) and Down syndrome (Esbensen and Seltzer 2011), both using the Zarit unidimensional scale.…”