Impact of disease, cognitive and behavioural factors on caregiver outcome in amyotrophic lateral sclerosis

Abstract

Up to 50% of patients with amyotrophic lateral sclerosis (ALS) show mild to moderate cognitive-behavioural change alongside their progressive functional impairment. This study examines the relative impact of patients’ disease symptoms, behavioural change and current executive function and social cognition abilities on psychosocial outcomes in spouse caregivers of people with ALS. Thirty-five spouse caregivers rated their own levels of depression and anxiety, subjective burden and marital satisfaction. Caregivers also rated their partner’s everyday behaviour. The patients were assessed for disease severity and cognitive function, with composite scores derived for executive function and social cognition. Regression analyses revealed that caregiver burden was predicted by the severity of patients’ limb involvement and behavioural problems. Depression was predicted by patients’ limb involvement, while behavioural problems and patient age predicted caregiver anxiety. Current marital satisfaction was predicted by patient behavioural problems beyond the level of pre-illness marital satisfaction. In conclusion, the study highlights the potential impact of ALS patients’ functional impairment and behavioural change on ALS caregivers’ psychosocial functioning. Clinical communication with ALS families should emphasise both physical and psychological challenges presented by the disease.

Key words::

• Cognitive-behavioural impairment
• disease severity
• anxiety
• depression
• caregiver burden

Acknowledgements

We thank the patients with ALS and their caregivers who participated in the research. We also thank members of the research support team who assisted with participant recruitment for the study: Rachel Burman, Catherine Knights, Andrew Dougherty, Naomi Martin, Rachel Tuck, Jan Clarke, Christine Batts, Hazel Watts, Joanna Sasson, Helen Copesy, Trish Cutts.

This work was submitted in part fulfilment of a PhD project (for TJW) funded by the Medical Research Council, The National Institute of Health Research (NIHR) Dementias and Neurodegenerative Diseases Research Network and the Motor Neurone Disease Association. The work leading up to this publication was funded by the European Community's Health Seventh Framework Programme (AAC & CES grant number 259867). AAC and CES are involved in two EU Joint Programmes – Neurodegenerative Disease Research (JPND) projects (STRENGTH and ALS–CarE). These projects are supported through the following funding organizations under the aegis of JPND –www.jpnd.eu: United Kingdom, Medical Research Council and Economic and Social Research Council. Some authors receive salary support from the NIHR Dementia Biomedical Research Unit (CES, AAC, RGB, LHG) and the NIHR Biomedical Research Centre for Mental Health (CES, AAC, RGB) at the South London and Maudsley NHS Foundation Trust and King's College London. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

Declaration of interest: The authors declare no conflicts of interest in this study.

Supplementary material available online

Supplementary Tables 1–3 available online at http://informahealthcare.com/doi/abs/10.3109/21678421.2015.1051990