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

Watermeyer, Tamlyn J. and Brown, R.G. and Sidle, K.C.L and Oliver, David J. and Allen, C. and Karlsson, Joanna and Ellis, C.M and Shaw, C.E. and Al-Chalabi, Ammar and Goldstein, Laura H. (2015) Impact of disease, cognitive and behavioural factors on caregiver outcome in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 16 (5 -6). pp. 316-325. ISSN 2167-8421. E-ISSN 2167-9223. (doi: (Full text available)


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.

Item Type: Article
Uncontrolled keywords: Cognitive-behavioural impairment; anxiety; caregiver burden; depression; disease severity
Subjects: H Social Sciences
Divisions: Faculties > Social Sciences > School of Social Policy Sociology and Social Research > Tizard
Depositing User: Jo Ruffels
Date Deposited: 29 Sep 2016 11:44 UTC
Last Modified: 29 Jun 2018 12:07 UTC
Resource URI: (The current URI for this page, for reference purposes)
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