Changed behaviours associated with cognitive decline: Views of people living with dementia, families and healthcare professionals

Abstract

AbstractBackgroundChanged behaviours associated with cognitive decline (also known as neuropsychiatric symptoms (NPS), behavioural and psychological symptoms of dementia (BPSD), and responsive behaviours) occur in up to 90‐percent of people living with dementia (PLWD). They strongly correlate with functional and cognitive impairment and contribute to approximately 30‐percent of overall dementia costs. Decisions regarding care and strategies for changed behaviours are often determined by families and healthcare professionals and are not inclusive of PLWD. This is the first study that investigates terminology used to describe changed behaviours associated with cognitive decline from the perspective of PLWD, families/care partners and healthcare professionals. PLWD, families/care partners and healthcare professionals participated in semi‐structured interviews. A thematic iterative approach was used to code the data and identify common themes until theoretical saturation was reached (∼25 participants per group). Themes were compared between groups. Data were analysed deductively in relation to pre‐existing terminology regarding changed behaviours in cognitive decline, and inductively to discover new ideas on use of such terminology as perceived by PLWD and others. Thirty‐four volunteers have been interviewed so far: 16 PLWD, mean age 70yrs, mean Mini‐Mental State Examination score 26, and 18 family members/care partners. Preliminary analysis indicates that terms used by PLWD and families differ to terms used in existing professional frameworks (e.g., ‘disinhibition’ described as ‘loss of filter’ and ‘agitation/ aggression’ as ‘frustration’ or ‘lower tolerance’. Full results from PLWD, families/care partners and healthcare professionals will be presented (∼75 participants). This is the first report from PLWD themselves on their preferences for the terminology describing changed behaviours previously described as BPSD or NPS, suggesting a reconceptualization of changed behaviours may assist, e.g., from ‘agitated/ hard to handle’ to being frustrated with cognitive decline, discriminatory behaviour and insufficient support systems, and ‘having delusions/ false beliefs’ to thinking about and re‐experiencing previous traumatic events. In better understanding changed behaviours, families and professionals will be able to respond in a way that is helpful for PLWD. An integrated understanding of all views and factors involved will assist in better understanding changed behaviours, improve language use and the quality of care and support.