Cookies on this website
We use cookies to ensure that we give you the best experience on our website. If you click 'Continue' we'll assume that you are happy to receive all cookies and you won't see this message again. Click 'Find out more' for information on how to change your cookie settings.

Our objective was to investigate the relationship between support by health and social care services and caregiver wellbeing. A survey, including a generic health status measure (SF-12), a disease-specifi c measure for patients (ALSAQ-40), the Carer Strain Index (CSI) for caregivers and questions on experiences of health and social care services, was sent to patient members of the MND Association (UK) and their caregivers. A single ‘ problem score ’ was calculated from the experience questions and the relationship between the problem score with caregiver and patient well-being was analysed. Most caregivers reported at least one problem with support from services. The most common problems were services not valuing caregivers ’ experiences, and caregivers not feeling suffi ciently involved in planning care. The problem score signifi cantly increased with increasing caregiver strain and worsening mental health. The problem score was also increased as patient well-being decreased. The results suggest that caregiver strain was higher and mental health lower as the number of problems reported increased. A higher perceived lack of caregiver support was also related to a decrease in patient wellbeing, suggesting that caregivers ’ needs increase as the disease progresses. This emphasizes the importance of MND caregivers being appropriately supported by health and social care services in their caregiving role.

Original publication




Journal article


Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders


Informa Healthcare

Publication Date



223 - 228

Total pages