A systematic review of the association between individual behavioural and psychological symptoms in dementia and carer burden

Abstract

Purpose The purpose of this paper was to systematically review the association between behavioural and psychological symptoms of dementia (BPSD) and the development of carer burden. Although this association has been well established in the literature, it is not clear whether there are individual symptoms or clusters of symptoms that are particularly burdensome for carers. Design/methodology/approach A systematic review of the available literature was carried out to determine whether any specific symptom or cluster of symptoms was most closely associated with carer burden. In addition, the categorisation of behavioural symptoms, conceptualisations of burden and methods of measurement used were examined and quality of the studies appraised. Findings A total of 21 studies measured the association between at least one individual symptom or symptom cluster and carer burden, with all studies finding at least one symptom to be significantly associated with burden. The majority of studies were of fair to good quality. However, there was considerable heterogeneity in focus, analysis, recruitment and measurement of behaviour and burden. Originality/value Symptoms, which were found to be significantly associated with carer burden, were aggression/agitation, frontal systems behaviour, disinhibition, disrupted eating and sleeping behaviour, unusual motor behaviour, anxiety and psychotic symptoms. However, because of the heterogeneity of studies, there was insufficient evidence to establish whether any symptoms are more important than others in the development of carer burden. Future focus on clarifying the dimensions of carer burden and the mechanisms by which BPSD impact negatively on carers could inform the development of effective interventions.