Abstract

Background: We studied the level of distress in caregivers of patients with recently diagnosed multiple sclerosis (MS), and their relation to clinical characteristics.

Methods: Caregivers of patients with MS and Parkinson’s disease completed measures of distress and quality of life. MS patients underwent neurological, neuropsychiatric and neuropsychological examinations. Multivariate regression analyses were used to explore the relationship between patient variables and caregiver distress.

Results: Caregivers of patients with MS experienced high levels of distress and reduced quality of life related to caregiving. The level of distress was similar to that reported by elderly spouses of patients with longstanding Parkinson’s disease. Psychiatric symptoms and cognitive impairment in patients with MS were associated with caregiver’s distress and quality of life, even after controlling for level of disability (all p values <0.01). Patients’ physical impairment was associated with caregiver distress, but not with caregiver quality of life.

Conclusion: Caregivers of patients with MS experience high levels of distress and reduced quality of life. Psychiatric symptoms and cognitive impairment contributed significantly to caregiver distress, over and above the effect of disability due to neurological symptoms.