Distress in Caregivers of Amyotrophic Lateral Sclerosis and Progressive Muscular Atrophy Patients

Abstract

The aim of this study was to examine what demand factors place informal caregivers of patients with Amyotrophic lateral sclerosis (ALS) or progressive muscular atrophy (PMA) at risk of becoming overwhelmed by psychological distress. Functional and behavioural impairments have been linked to caregiver distress. Demand factors such as work and parental responsibilities may also add to the caregiver’s burden but have been scarcely researched. Karasek’s model of demand-control served as a theoretical framework to generate the hypotheses. 148 caregivers of patients with ALS or PMA participated in an online survey on distress, physical- and behavioural problems of the patient and socio-demographic variables. The dependent variable was caregiver psychological distress, measured with the Hospital Anxiety and Depression Scale. Demand variables were the functional and behavioural impairments of the patient, having paid employment and having children under 18. Gender was also expected to influence the association between demands and distress. Results: The hierarchical multiple regression model accounted for 44% of the variance in distress. Both behavioural impairments of the patients and having young children were significantly associated with caregiver distress. Caregiver’s employment status, functional impairment and gender showed no significant relation with caregiver distress. No interaction effect for gender was found. Conclusion: Caregivers with patients with behavioural problems or with the care responsibility for young children are indicated to be more at risk of developing psychological distress.