Family carer perspectives on the language of behaviour change in dementia: an online mixed methods survey

Abstract

Objective: following the #BanBPSD campaign there has been critical interest in common terminology used for 'changes in behaviour' associated with dementia. However, commentaries and emerging studies have not fully considered family carer perspectives. This study explores the views of family carers on terminology and language for this paradigm.

Method: a mixed methods online survey was conducted with family carers. Language preferences were scoped and examined with supporting open-ended questions that explored the reasons for choices.

Results: about 229 family carers completed the survey. Terms such as Challenging Behaviour, Behaviour that Challenges and Behavioural and Psychological Symptoms of dementia were mostly disliked. The most preferred term was a new concept called 'Behavioural and Emotional Expressions of Need' that few people had previously heard of. Overall, carers preferred positively construed, easily understood, person-centred terms that attributed changes in behaviour to unmet need, which also acknowledged the carer's role in management.

Conclusions: given that carers are often the agents of change for this paradigm-where they may also be called on to act as proxy decision makers, it is important that professionals take time to explore their understandings and give due consideration to the language used when offering tailored interventions. These findings suggest that frequently used terms for changes in behaviour associated with dementia, such as Challenging Behaviour, BtC and BPSD, should be avoided.

Keywords: Family carers; behaviour; dementia; language; older people.