Naming and Framing the Behavioural and Psychological Symptoms of Dementia (BPSD) Paradigm: Professional Stakeholder Perspectives

Background: Behavioural and Psychological Symptoms of Dementia and Challenging Behaviour in dementia are just two of a variety of terms for a complex paradigm that covers the most distressing and costly aspects of the condition. The terminology used to describe these aspects can influence what is measured as outcomes and what is considered as evidence of improvement. Unhelpful or outmoded narratives could be a barrier to developing innovative interventions or in determining what works for whom. This UK study explored professional opinions about commonly used terminology in this paradigm. Methods: This mixed methods study involved wide-ranging multidisciplinary professionals and stakeholders. A consultation event was attended by 74 multidisciplinary professionals. Written feedback from this event was used to develop an online survey. The survey was disseminated using a cascading snowballing method through multi-professional groups. Survey respondents ranked preferences for terms and stated reasons for their choices. Thematic content analysis was used to explore patterns of meaning. Results: From the consultation event a list of 14 common terms were generated and formed the basis of the on-line survey. 378 respondents completed the survey. There was a wide variation across professional groups on preferred terminology with 'unmet need', 'behaviour that challenges', 'BPSD' and 'stress and distress' being ranked as the first choice by the majority. Five themes emerged from the qualitative data, revealing important nuances and challenges in relation to terminology. Conclusions: Words have the power to shape thoughts, beliefs, emotions and behaviour. In line with the international advocacy movement, our UK findings suggest that future international consensus should, in addition to multi-professional and stakeholder experts, involve wide-ranging groups of people with dementia, their families and advocates. This would ensure that we use descriptive language, that does not objectify peoples' experience and that can be easily understood by all.