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

ABSTRACT

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.