Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis

K van der Hiele; D A M van Gorp; M A P Heerings; P J Jongen; J J L van der Klink; E A C Beenakker; J J J van Eijk; S T F M Frequin; B M van Geel; G J D Hengstman; E Hoitsma; J P Mostert; W I M Verhagen; K de Gans; D Zemel; H A M Middelkoop; L H Visser

doi:10.1016/j.msard.2019.03.005

Caregiver strain among life partners of persons with mild disability due to relapsing-remitting multiple sclerosis

Mult Scler Relat Disord. 2019 Jun:31:5-11. doi: 10.1016/j.msard.2019.03.005. Epub 2019 Mar 6.

Authors

K van der Hiele¹, D A M van Gorp², M A P Heerings³, P J Jongen⁴, J J L van der Klink⁵, E A C Beenakker⁶, J J J van Eijk⁷, S T F M Frequin⁸, B M van Geel⁹, G J D Hengstman¹⁰, E Hoitsma¹¹, J P Mostert¹², W I M Verhagen¹³, K de Gans¹⁴, D Zemel¹⁵, H A M Middelkoop¹⁶, L H Visser¹⁷

Affiliations

¹ Institute of Psychology, Health, Medical and Neuropsychology Unit, Leiden University, PO Box 9555, 2300 RB Leiden, the Netherlands; National Multiple Sclerosis Foundation, Mathenesserlaan 378, 3023 HB Rotterdam, the Netherlands; Department of Neurology, Elisabeth-TweeSteden Hospital, PO Box 90151, 5000 LC Tilburg, the Netherlands. Electronic address: hiele@fsw.leidenuniv.nl.
² Institute of Psychology, Health, Medical and Neuropsychology Unit, Leiden University, PO Box 9555, 2300 RB Leiden, the Netherlands; National Multiple Sclerosis Foundation, Mathenesserlaan 378, 3023 HB Rotterdam, the Netherlands; Department of Neurology, Elisabeth-TweeSteden Hospital, PO Box 90151, 5000 LC Tilburg, the Netherlands; Department of Care Ethics, University of Humanistic Studies, PO Box 797, 3500 AT Utrecht, the Netherlands. Electronic address: dennis.vangorp@phd.uvh.nl.
³ National Multiple Sclerosis Foundation, Mathenesserlaan 378, 3023 HB Rotterdam, the Netherlands. Electronic address: marco.heerings@nationaalmsfonds.nl.
⁴ MS4 Research Institute, Ubbergseweg 34, 9522 KJ Nijmegen, the Netherlands; Department of Community & Occupational Medicine, University of Groningen, University Medical Centre Groningen, PO Box 30001, 9700 RB Groningen, the Netherlands. Electronic address: ms4ri@kpnmail.nl.
⁵ Tilburg School of Social and Behavioural Sciences, Tranzo Scientific Centre for Care and Welfare, Tilburg University, PO Box 90153, 5000 LE Tilburg, the Netherlands. Electronic address: j.j.l.vdrKlink@uvt.nl.
⁶ Department of Neurology, Medical Centre Leeuwarden, PO Box 888, 8901BR Leeuwarden, the Netherlands. Electronic address: martijn.beenakker@znb.nl.
⁷ Department of Neurology, Jeroen Bosch Hospital, PO Box 90153, 2000 ME 's-Hertogenbosch, the Netherlands. Electronic address: j.eijkvan@jbz.nl.
⁸ Department of Neurology, St. Antonius Hospital, PO Box 2500, 3430 EM Nieuwegein, the Netherlands. Electronic address: s.frequin@antoniusziekenhuis.nl.
⁹ Department of Neurology, Northwest Clinics Alkmaar, Postbus 501, 1800 AM Alkmaar, the Netherlands. Electronic address: Geel@nwz.nl.
¹⁰ Department of Neurology, Catharina Hospital, PO Box 1350, 5602 ZA Eindhoven, the Netherlands. Electronic address: gerald.hengstman@catharinaziekenhuis.nl.
¹¹ Department of Neurology, Alrijne Hospital Leiden, PO Box 9650, 2300 RD Leiden, the Netherlands. Electronic address: ehoitsma@alrijne.nl.
¹² Department of Neurology, Rijnstate Hospital, PO Box 9555, 6800 TA Arnhem, the Netherlands. Electronic address: jmostert@rijnstate.nl.
¹³ Department of Neurology, Canisius-Wilhelmina Hospital, PO Box 9015 6500 GS Nijmegen, the Netherlands. Electronic address: w.verhagen@cwz.nl.
¹⁴ Department of Neurology, Groene Hart Hospital, PO Box 1098, 2800 BB Gouda, the Netherlands. Electronic address: koen.de.gans@ghz.nl.
¹⁵ Department of Neurology, Albert Schweitzer Hospital, PO Box 444, 3300 AK Dordrecht, the Netherlands. Electronic address: d.zemel@asz.nl.
¹⁶ Institute of Psychology, Health, Medical and Neuropsychology Unit, Leiden University, PO Box 9555, 2300 RB Leiden, the Netherlands; Department of Neurology, Leiden University Medical Centre, PO Box 9600, 2300 RC Leiden, the Netherlands. Electronic address: h.a.m.middelkoop@lumc.nl.
¹⁷ Department of Neurology, Elisabeth-TweeSteden Hospital, PO Box 90151, 5000 LC Tilburg, the Netherlands; Department of Care Ethics, University of Humanistic Studies, PO Box 797, 3500 AT Utrecht, the Netherlands. Electronic address: lh.visser@etz.nl.

PMID: 30877926
DOI: 10.1016/j.msard.2019.03.005

Abstract

Background: Multiple sclerosis (MS) is a chronic disorder of the central nervous system with an unpredictable disease course. Life partners often become caregivers, which can be both rewarding and challenging, as the caregiver's physical and mental health is often negatively affected. Previous studies on caregiver strain focused on caregivers of persons with MS with relatively high disability levels, while caregiver strain may already be experienced by life partners living with mildly disabled persons with MS.

Objective: The current study examines factors associated with caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS.

Methods: We included 173 persons with relapsing-remitting MS (79% female; mean age 42.8 years; 90% employed; median EDSS 2.0) and their life partners. The life partners completed questionnaires on caregiver strain and neuropsychiatric and cognitive functioning of the person with MS. The persons with MS completed questionnaires about demographics, fatigue, personality, physical, cognitive and neuropsychiatric functioning, and underwent neuropsychological and neurological examinations. A linear regression analysis was conducted to examine predictors of caregiver strain.

Results: 24% of the life partners experienced above average levels of caregiver strain. A multivariate linear regression analysis revealed that a higher age of the person with MS (β = 0.16, p = 0.04), more physical disability (β = 0.17 p = 0.04), more cognitive and neuropsychiatric problems of the person with MS as reported by the life partner (β = 0.33, p = 0.001) and higher severity of neuropsychiatric symptoms as reported by the life partner (β = 0.32, p = 0.001) were associated with higher caregiver strain (R² = 0.49).

Conclusion: Higher caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS was primarily associated with cognitive and neuropsychiatric problems of the person with MS.

Keywords: Caregiver strain; Cognition; Life partners; Multiple sclerosis; Neuropsychiatry.

MeSH terms

Adult
Anxiety / complications
Caregivers / psychology*
Depression / complications
Disabled Persons / psychology
Fatigue
Female
Humans
Male
Middle Aged
Multiple Sclerosis, Relapsing-Remitting / psychology*
Neuropsychological Tests
Stress, Psychological / complications
Stress, Psychological / psychology*
Surveys and Questionnaires