Routines of resistance: an ethnography of the care of people living with dementia in acute hospital wards and its consequences

Background There is little research examining resistance, refusal or rejection of care by people living with dementia within acute hospital wards despite the prevalence of dementia in adult hospital populations. Objectives To explore the ways in which resistance to care manifests within the acute setting and is understood, classified and subsequently managed by ward staff. Design Ethnography Setting Acute medical units and trauma and orthopaedic wards in five NHS hospitals in England and Wales. Participants People living with dementia and nursing team members (registered nurses and health care assistants) on participating wards. Methods Observational fieldwork and ethnographic interviews collected over a period of 20 months (155 days of non-participant observation (minimum 2 hours, maximum 12 hours, total hours: 680) focusing on staff delivering care to patients with dementia. Interviewees included patients, visitors, and staff working on and visiting the ward. Data collection and analysis drew on the theoretical sampling and constant comparison techniques of grounded theory.

Results We found that resistance to care by people living with dementia was a routine and expected part of everyday care in the participating acute hospital settings. The timetabled rounds of the ward (mealtimes, medication rounds, planned personal care) significantly shaped patient and staff experiences and behaviours. These routinized ward cultures typically triggered further patient resistance to bedside care. Institutional timetables, and the high value placed on achieving efficiency and reducing perceived risks to patients, dictated staff priorities, ensuring a focus on the delivery of essential everyday planned care over individual patient need or mood in that moment. Staff were thus trapped into delivering routines of care that triggered patterns of resistance. Conclusions Nursing staff struggle to respond to the needs of people living with dementia in acute care settings where the institutional drivers of routines, efficiency and risk reduction are not mediated by clinical leadership within the ward. Cycles of resistance in response to organisationally mandated timetables of care can result in poor care experiences for patients, and emotional and physical burnout for staff. More research is needed into how institutional goals can be better aligned to recognise the needs of a key hospital population: people living with dementia.