Quality of Life and Depression in Patient-Giver Scenarios: Reference to Amyotrophic Lateral Sclerosis

Abstract:

Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disorder of adult life, characterized by a progressive loss of motor function (upper and lower limb mobility, speech, swallowing, respiration). The progressive loss of independence that occurs as a result leads to an increasing need for help with every day life activities from informal or paid caregivers. Family caregivers are largely involved in this care, and bear an increased physical, psychological and emotional burden. Despite the severe impairment of physical function and the prospect of death, ALS patients have a relatively good “existential” or “personal” or “individual” quality of life (QOL) and a low rate of depression throughout the whole course of the disease. Conversely, their caregivers show a progressive rise in depression and decline of QOL paralleling the increased subjective burden of care. Caregivers’ burden of care is mostly related to personal and social restrictions and psychological and emotional problems. Coping strategies are different in ALS patients and caregivers, and these differences should be acknowledged by health professionals in planning support interventions. Respiratory problems have a particularly strong impact on the patient-caregiver couple, since mechanical ventilation causes a deep burden on caregivers, reducing their QOL, increasing their responsibilities related to managing the ventilator, and constituting an increased financial burden. From the moment of the first communication of diagnosis caregivers go through a grieving process; this grief needs to be addressed because it influences their well-being, increasing the risk of psychological and emotional disturbances, and compromising the care of their patients.