Longitudinal Effects of Mindfulness on People with Amyotrophic Lateral Sclerosis and their Caregivers

Introduction: Mindfulness is the process of actively making new distinctions, rather than relying on habitual or automatic categorizations from the past. Mindfulness has been positively associated with physical well-being, better recovery rates from disease or infections, pain reduction and overall quality of life (QOL). Thus far, the aims of psychological studies on ALS have focused on understanding patient (pALS) – and, to a lesser extent, caregiver – QOL and psychological well-being. No previous study has investigated the influence of psychological factors on ALS. Methods: A sample of 197 pALS, together with their caregivers (n=114), were recruited and assessed online twice, with a duration of four months between the two assessments. Assessments included measurements of trait mindfulness, physical impairment, QOL, anxiety and depression, as well as caregiver burden. The influence of mindfulness as predictor of changes in psychological and physical outcomes was evaluated with a mixed-effects model. Results: Mindfulness predicted higher QOL and psychological well-being, lower depression and anxiety, for both pALS and caregivers. It also predicted lower burden in caregivers. Interestingly, mindfulness positively influenced the change of physical symptoms: subjects with higher mindfulness experienced a slower progression of the disease after four months. Conclusions: These results showed that mindfulness is positively related to quality of life and well-being of both pALS and their caregivers. Furthermore, it appears that mindfulness resulted associated with a reduction of the disease progression. Possible clinical implications could be highly relevant for ALS care.