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

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Tamlyn J. Watermeyer, Richard Gerard Brown, Katie C. L. Sidle, David J. Oliver, Christopher Allen, Joanna Karlsson, Cathy M. Ellis, Christopher Edward Dennistoun Shaw, Ammar Al-Chalabi, Laura Hilary Goldstein

Original languageEnglish
Pages (from-to)316-323
Number of pages8
JournalAmyotrophic lateral sclerosis & frontotemporal degeneration
Issue number5-6
Early online date22 Jul 2015
Accepted/In press12 Apr 2015
E-pub ahead of print22 Jul 2015
Published1 Aug 2015


King's Authors


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-fi ve 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.

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