Carer burden in dementia—assessing the impact of behavioural and psychological symptoms via self‐report questionnaire

Abstract

The relationship between the behavioural and psychological symptoms of dementia (BPSD) and negative outcomes in carers has been consistently demonstrated, however the quality of the assessment of the former in routine clinical settings is variable and validated interview-based scales are frequently underutilised. To develop a carer self-report questionnaire, the Behavioural and Psychological Symptoms Questionnaire (BPSQ), for the assessment of the neuropsychiatric symptoms of dementia and associated carer distress. The BPSQ was administered to the carers of 30 community-dwelling older adults with diagnoses of Alzheimer's or vascular dementia and the results compared with interview assessment using the Neuropsychiatric Inventory (NPI). BPSD were present in 96.2% of patients. There was strong correlation (r(s) = 0.61, p < 0.001) between the BPSQ and interview with respect to measures of symptom frequency and severity. However, there was significant divergence between the two assessment schedules with respect to carer distress which was found to be significantly under-reported in the initial interview (U = 64.00, z = -5.22, p < 0.0001). The BPSQ is an effective tool to complement clinical interview in the assessment and monitoring of BPSD, and provides useful additional information with respect to carer distress, which currently may be under recognised. A follow-up study is required to complete the work of validating the BPSQ.