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.

Reconceptualising Behavioral and Psychological Symptoms of Dementia: Views of People Living With Dementia and Families/Care Partners

“…While evidence-based clinical guidelines provide extensive information and advice to assist clinicians and informal carers with BPSD issues (6,10,11), gaps remain in understanding the experience of BPSD from the perspective of PLWD (12).…”

“…Cunningham et al (13) caution, however, that regardless of attempts to reduce stigma by adopting an alternative terminology to BPSD, common usage of alternative terminology eventually becomes pejorative and stigmatizing in its own right. Deconstruction of BPSD terminology indicates that further research could help in better understanding behavioral and neuropsychiatric symptoms as experienced by PLWD (12) and close family (14).…”

Clinical research in dementia: A perspective on implementing innovation

“…In addition to considering the wider management context, institutions are meant to ultimately represent the interest of the community. Consistently, active efforts are made to involve citizens in research, [19][20][21] but their level of empowerment in the field of dementia still seems insufficient for active participation. The additional time required to engage, build capacity among both researchers and citizens, and structure cooperation is rarely funded, which affects the quality and efficiency of clinical research.…”

Family experiences of inpatient mental health care for people with dementia

“…Distressed behavior can take many forms, including agitation, apathy and sleep disturbance. Historically terms like "challenging behavior" or "behavior that challenges" have been used to describe behavior changes associated with dementia, but these terms are disliked by people with dementia (2), therefore in this paper we use the term distress to refer to behavioral changes associated with dementia.…”