title: 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.
authors.affiliation: a Department of Psychology , Bangor University , Bangor , UK.
authors.forename: Tamlyn J
authors.initials: TJ
authors.lastname: Watermeyer
authors.affiliation: b King's College London, Department of Psychology , Institute of Psychiatry, Psychology and Neuroscience , London , UK.
authors.forename: Richard G
authors.initials: RG
authors.lastname: Brown
authors.affiliation: c Department of Molecular Neuroscience , Institute of Neurology, University College London , London , UK.
authors.forename: Katie C L
authors.initials: KC
authors.lastname: Sidle
authors.affiliation: d Medway Community Healthcare, The Wisdom Hospice, Kent, and University of Kent, The Centre for Professional Practice , Chatham, Kent , UK.
authors.forename: David J
authors.initials: DJ
authors.lastname: Oliver
authors.affiliation: e Cambridge University Hospitals NHS Trust, Addenbrooke's Motor Neurone Disease Care & Research Centre , Cambridge , UK.
authors.forename: Christopher
authors.initials: C
authors.lastname: Allen
authors.affiliation: f East Kent Hospitals University NHS Trust, East Kent Motor Neurone Disease Service , Kent , UK.
authors.forename: Joanna
authors.initials: J
authors.lastname: Karlsson
authors.affiliation: g King's College Hospital NHS Foundation Trust, Motor Nerve Clinic , London , UK.
authors.forename: Cathy
authors.initials: C
authors.lastname: Ellis
authors.affiliation: h King's College London, Department of Basic and Clinical Neuroscience , Institute of Psychiatry, Psychology and Neuroscience , London , UK.
authors.forename: Christopher E
authors.initials: CE
authors.lastname: Shaw
authors.affiliation: h King's College London, Department of Basic and Clinical Neuroscience , Institute of Psychiatry, Psychology and Neuroscience , London , UK.
authors.forename: Ammar
authors.initials: A
authors.lastname: Al-Chalabi
authors.affiliation: b King's College London, Department of Psychology , Institute of Psychiatry, Psychology and Neuroscience , London , UK.
authors.forename: Laura H
authors.initials: LH
authors.lastname: Goldstein
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000150:complications* / Q000451:nursing*; D017028:Caregivers / Q000523:psychology*; D003072:Cognition Disorders / Q000209:etiology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D019964:Mood Disorders / Q000209:etiology*; D011237:Predictive Value of Tests; D011569:Psychiatric Status Rating Scales; D011788:Quality of Life / Q000523:psychology*; D012044:Regression Analysis; D057566:Self Report; D012720:Severity of Illness Index
keywords: Cognitive-behavioural impairment; anxiety; caregiver burden; depression; disease severity