Behavioural but not cognitive impairment is a determinant of caregiver burden in amyotrophic lateral sclerosis

Background: Caregivers of patients affected by amyotrophic lateral sclerosis (ALS) are involved with great determination in the treatment process since the earliest stages of the disease with an increasing burden to be of help to the ailing persons. Aim: To test separately the impact of ALS patients' cognitive and behavioural impairments on caregiver burden and mood status in 84 outpatient/main caregiver couples. Design: Patients were tested with the ALS-Cognitive Behavioural Screen (ALSCBS-ci and -bi), Frontal Assessment Battery, Weigl's Sorting Test, Mini-Mental State Examination, Beck's Depression Inventory (BDI). Analogously, caregivers completed the BDI and Caregiver Burden Inventory (CBI). Results: CBI correlated with ALSCBS-bi, besides ALSFRS-R, disease progression index and caregiver BDI. Caregiver BDI also correlated with ALSCBS-bi scores. No correlations were found with cognitive tests. The correlation between CBI and the ALSCBS-bi score was specifically sustained by the social burden sub-domain of CBI. Conclusions: As previously reported using other tools, behavioural impairment is a determinant of burden and mood in ALS caregivers. Conversely, cognitive impairment fails to emerge as a major target when aiming at easing the increasing burden or improving mood in ALS caregivers.