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

Wolverson, Emma; Birtles, Heather; Moniz-Cook, Esme; James, Ian; Brooker, Dawn; Duffy, Frances

Authors

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Dr Emma Wolverson E.Wolverson@hull.ac.uk
Reader in Ageing and Dementia. Research Lead for Dementia UK.

Heather Birtles

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Professor Esme Moniz-Cook E.D.Moniz-Cook@hull.ac.uk
Professor of Clinical Psychology of Ageing and Dementia Care Research/ Dementia Research Work Group Lead

Ian James

Dawn Brooker

Frances Duffy



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 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.

Citation

Wolverson, E., Birtles, H., Moniz-Cook, E., James, I., Brooker, D., & Duffy, F. (2019). Naming and Framing the Behavioural and Psychological Symptoms of Dementia (BPSD) Paradigm: Professional Stakeholder Perspectives. OBM geriatrics, 3(4), 1-19. https://doi.org/10.21926/obm.geriatr.1904080

Journal Article Type Article
Acceptance Date Oct 9, 2019
Online Publication Date Oct 11, 2019
Publication Date 2019
Deposit Date Oct 15, 2019
Publicly Available Date Mar 28, 2024
Journal OBM Geriatrics
Print ISSN 2638-1311
Publisher Lidsen Publishing Inc.
Peer Reviewed Peer Reviewed
Volume 3
Issue 4
Pages 1-19
DOI https://doi.org/10.21926/obm.geriatr.1904080
Keywords Dementia; Behaviour; BPSD; Distress; Psychological symptoms; Professional survey
Public URL https://hull-repository.worktribe.com/output/2907620
Publisher URL https://www.lidsen.com/journals/geriatrics/geriatrics-03-04-080

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Copyright Statement
© 2019 by the authors. This is an open access article distributed under the conditions of the Creative Commons by Attribution License, which permits unrestricted use, distribution, and reproduction in any medium or format, provided the original work is correctly cited.






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