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

Abstract

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 multi-disciplinary professionals. Written feedback from this event was used to develop an online survey. The survey was

The language of behaviour changes in dementia: A mixed methods survey exploring the perspectives of people with dementia

“…A surprising finding was that only a small percentage of participants disliked the term BPSD. Although no consensus was reached about preferred terminology, the term 'unmet need' was most frequently ranked as participants' preferred term, echoing a recent professional stakeholder survey (Wolverson et al, 2019).…”

“…A surprising finding was that only a small percentage of participants disliked the term BPSD. Although no consensus was reached about preferred terminology, the term ‘unmet need’ was most frequently ranked as participants’ preferred term, echoing a recent professional stakeholder survey (Wolverson et al., 2019). Of relevance, here is the seminal person‐centred text about ‘challenging behaviour’ in dementia, first published two decades ago (Stokes, 2017).…”

“…The remaining questions were a combination of closed and open‐ended questions that asked participants for their preferences and opinions (see appendix 1). Participants were asked to choose from seven different terms: five terms (behaviour that challenges, stress and distress, unmet needs, challenging behaviour and BPSD) arose from a UK professional stakeholder consultation on the topic (Wolverson et al., 2019). One was drawn from the advocacy movement, that is Respond in Reasonable Ways to Adverse Conditions and Circumstances (RRAC) (Macaulay, 2019) and the term Behavioural and Emotional Expressions of Need (BEEN) emerged from a UK practitioner debate about existing terms.…”

“…The pros and cons of the #banBPSD campaign have been commented on (Cunningham et al., 2019). Dementia care professionals also disagree about terminology for this paradigm (Wolverson et al., 2019).…”

Wandering the Wards

“…Importantly, a re-evaluation of and debates about the appropriateness of these terms is ongoing (Wolverson et al 2019), to reflect perspectives that emphasise the importance of the social and clinical contexts in which they occur and that these 'symptoms' may reflect the communication of unmet need (Cohen-Mansfield and Mintzer 2005) and as such are currently being reframed, for example, as 'behavioural expressions' (Macaulay 2018) and 'stress and distress' (Wolverson et al 2019) as more closely reflecting the experiences of people living with dementia. We support interpretations which see these 'behaviours' as reflecting an individual's responses to the ways in which care is organised and delivered to them at their bedside and the difficulties people living with dementia may have in communicating their needs verbally (and promptly to meet the expected pace of care) within the acute setting (Featherstone et al 2019).…”