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

Wolverson, Emma; Moniz-Cook, Esme; Dunn, Rosie; Gove, Dianne; Diaz-Ponce, Ana

Authors

Dr Emma Wolverson E.Wolverson@hull.ac.uk
Senior Lecturer Ageing and Dementia. MSc Dementia programme co-director.

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

Dianne Gove

Ana Diaz-Ponce



Abstract

© 2021 John Wiley & Sons Ltd Aims: The aim of this study was to explore the opinions of people with dementia, about the language used to describe changes in behaviour associated with dementia. Design: This study adopted a human rights approach in a mixed methods convergent parallel synthesis design. Methods: Online and paper-based questionnaire data were collected between November 2019 and March 2020. A combination of convenience and purposive sampling was used to invite people with dementia to participate. Results: In total, 54 people completed the survey. There was no clear consensus on a preferred term, but 28.3% preferred the term ‘unmet needs’ for describing changes in behaviour associated with dementia. Qualitative data revealed important nuances and challenges for researchers and practitioners in relation to terminology for this paradigm. Participants felt that the language we use to talk about changes in behaviour could influence how people with dementia are viewed and treated and how people feel about themselves. Conclusion: The majority of participants were familiar with a range of terminology. There was no universal agreement on terminology, but there was an overall preference for terms that reflect the unmet needs likely to underlie perceived changes in behaviour. Impact: People with dementia raised concerns about the language used to describe changes in behaviour that can occur in dementia. There is scope for improvements in the language used for this paradigm in both research and practice. Following a diagnosis of dementia, clinicians need to take the time to explore an individual's preferences and understandings. They can then share their own understanding about the potential for changed behaviour and if relevant, how any negative impact of this may be minimized.

Citation

Wolverson, E., Moniz-Cook, E., Dunn, R., Gove, D., & Diaz-Ponce, A. (2021). The language of behaviour changes in dementia: A mixed methods survey exploring the perspectives of people with dementia. Journal of advanced nursing, https://doi.org/10.1111/jan.14787

Journal Article Type Article
Acceptance Date Jan 25, 2021
Online Publication Date Feb 16, 2021
Publication Date 2021
Deposit Date Mar 3, 2021
Publicly Available Date Feb 17, 2022
Journal Journal of Advanced Nursing
Print ISSN 0309-2402
Electronic ISSN 1365-2648
Publisher Wiley
Peer Reviewed Peer Reviewed
DOI https://doi.org/10.1111/jan.14787
Keywords Behaviour; BPSD; Dementia; Distress; Language; Psychological symptoms; Survey
Public URL https://hull-repository.worktribe.com/output/3716605
Additional Information The peer review history for this article is available at https://publons.com/publon/10.1111/jan.14787.

The data that support the findings of this study are available from the corresponding author upon reasonable request.