Supporting caregivers of people with Amyotrophic Lateral Sclerosis

Abstract

Informal caregivers play a crucial role in the care for people with Amyotrophic Lateral Sclerosis (ALS). ALS is a motor neuron disease which leads to muscle weakness and respiratory failure. During the disease course patients become more and more dependent on their environment. The majority of care tasks are provided by informal caregivers such as partners or children. Research shows that these caregivers often experience feelings of psychological distress or caregiver burden, but there is a lack of supportive interventions for these caregivers. The overall aim of this theses is to improve the support for caregivers of people with ALS. In this study a support program for caregivers of people with ALS was developed and evaluated on its effectiveness. The aim of the support program was to increase the feeling of control over caregiving in order to decrease feelings of psychological distress. The support program was based on Acceptance and Commitment Therapy and consisted of one face-to-face contact, 6 online guided modules and one telephone call. Although caregivers evaluated the program positively, no effects on psychological distress were found. A positive intervention effect was found on caregivers ability to control upsetting thoughts related to caregiving. Caregivers reported that the program helped them to become more aware of their own situation, perceive control over their situation, accept negative emotions and thoughts, to be there for their partner and to feel acknowledged in their role. The support program will be adapted in line with the received feedback from caregivers and can be considered as one of the support options available for caregivers of people with ALS.