Caregiver burden affects the quality of life of ALS patients and their caregivers

Adults with Amyotrophic Lateral Sclerosis die within three to five years of onset. ALS leaves patients progressively disabled affecting all voluntary muscles including muscles to walk, move their arms, speak, and breathe- leading to respiratory distress and death. Patients become dependent on caregivers for all activities of daily living like eating, dressing and toileting. This leads to high caregiver burden and lower reported quality of life (QOL) for patients and their caregivers. This study examined the relationship between caregiver burden and QOL for patients and their caregivers. Primary data collection with a cross sectional sample of 104 patients and their caregivers was completed in a tertiary care facility. A multivariate analysis examined the association between 21 patient and 17 caregiver characteristics and their QOL. The model for caregivers showed better QOL was associated with less caregiver burden, more years caregiving, better mental status, higher socio-economic status and public insurance (adjusted R-squared 0.35). The model for patients showed caregiver burden as insignificant with patients' QOL. However, for patients more spirituality, better mental status, better physical functioning and more hours of paid caregiving were positively associated with better QOL, while more hours of informal (unpaid) caregiving were negatively associated with QOL (adjusted R-squared 0.52). The findings of this study suggest that caregivers' QOL may be improved by improving mental status, providing more resources and providing more education about caregiving. Patients' QOL may be improved by supporting their informal and formal (paid) caregivers, increasing spirituality resources and improving mental status.