Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis

Abstract

Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease caused by the degeneration of motor neurons. The burden for ALS caregivers is quite high. There are still few studies that have investigated the emotional impact of ALS care. We conducted a cross-sectional study among 40 ALS caregivers, assessing general worries, burden of care, depression, anxiety, perception of social support, and patients' severity of disease. Caregiver burden, depression, and anxiety were positively related with each other, and all these variables had a negative relation with social support. Patient's loss of physical functions was positively related with caregiver burden, anxiety, and somatic expression of depression. Caregivers expressed worries for their own health conditions. Given these results, we consider the hypothesis of an emotional-somatic impact of ALS care. The implications and limitations are discussed.

Keywords:

• amyotrophic lateral sclerosis
• care burden
• caregivers
• quality of life

Acknowledgements

The MAPPA DM SLA Project (Modelli di Assistenza (ordinario ed intensivo) Per Persone Affette da Distrofia Muscolare e Sclerosi Laterale Amiotrofica) was supported by the “Fondazione Cariplo” Italian private foundation.