'It’s become a theatre’: relational experiences of family carers and people with Amyotrophic lateral sclerosis (ALS) after cognitive impairment emerges

Background: Amyotrophic lateral sclerosis (ALS) can lead to emotional and psychological distress between patients their family carers. Many people with ALS develop cognitive impairment, which limits ability process complex information, interact, communicate. This decline adds caregiver burden. Few studies have explored interpersonal relations carers. Aim: To better understand how ALS-associated impairment influences close relations. Methods: Individual semi-structured in-depth, interviews were conducted once, four Thematic analysis was used. Results: Increased distance of identified as the core theme. Differences similarities within data according subthemes, (1) Everyday life together but apart: a demanding role play, (2) Coping lost future: living in ‘normal’ present searching for hope through well-lived life. Conclusions significance: Cognitive following increased relational To ease burden, professionals should recognize patients’ carers’ issues grief at an early stage. Focusing on occupational identity highly valued occupations that are still-accessible may help carers regain meaning everyday life.