Amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disorder, is the most common form of motor neuron disease in adults. People with ALS become severely disabled when the disease is progressing. The confrontation with constant losses, with dying and death poses enormous challenges both for them and for informal carers, who are most often spouses or close family members. However, there is evidence that the quality of life of ALS patients is often quite high and not correlated with the physical status. What does this mean for the quality of life of the caregivers?