Behavioral and psychological symptoms in dementia (BPSD) are important predictors of institutionalization as well as caregiver burden and depression. Previous reviews have tended to group BPSD as one category with little focus on the role of the individual symptoms. This review investigates the role of the individual symptoms of BPSD in relation to the impact on different measures of family caregiver well-being.

Systematic review and meta-analysis of papers published in English between 1980 and December 2015 reporting which BPSD affect caregiver well-being. Paper quality was appraised using the Downs and Black Checklist (1998).

Forty medium and high quality quantitative papers met the inclusion criteria, 16 were suitable to be included in a meta-analysis of mean distress scores. Depressive behaviors were the most distressing for caregivers followed by agitation/aggression and apathy. Euphoria was the least distressing. Correlation coefficients between mean total behavior scores and mean distress scores were pooled for four studies. Irritability, aberrant motor behavior and delusions were the most strongly correlated to distress, disinhibition was the least correlated.

The evidence is not conclusive as to whether some BPSD impact caregiver well-being more than others. Studies which validly examined BPSD individually were limited, and the included studies used numerous measures of BPSD and numerous measures of caregiver well-being. Future research may benefit from a consistent measure of BPSD, examining BPSD individually, and by examining the causal mechanisms by which BPSD impact well-being by including caregiver variables so that interventions can be designed to target BPSD more effectively.

Tailored psychosocial interventions can help families to manage behavioural and psychological symptoms in dementia (BPSD), but carer responses to their relative's behaviours contribute to the success of support programmes.

To understand why some family carers have difficulty in dealing with BPSD, in order to improve the quality of personalised care that is offered.

A systematic review and meta-ethnographic synthesis was conducted of high-quality quantitative and qualitative studies between 1980 and 2012.

We identified 25 high-quality studies and two main reasons for behaviours being reported as challenging by family carers: changes in communication and relationships, resulting in ‘feeling bereft’; and perceptions of transgressions against social norms associated with ‘misunderstandings about behaviour’ in the relative with dementia. The underlying belief that their relative had lost, or would inevitably lose, their identity to dementia was a fundamental reason why family carers experienced behaviour as challenging.

Family carers' perceptions of BPSD as challenging are associated with a sense of a declining relationship, transgressions against social norms and underlying beliefs that people with dementia inevitably lose their ‘personhood’. Interventions for the management of challenging behaviour in family settings should acknowledge unmet psychological need in family carers.