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

Abstract

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