Refusal and resistance to care by people living with dementia being cared for within acute hospital wards: an ethnographic study.

Open access on publicationBackground The acute hospital setting has become a key site of care for people living with dementia. The Department of Health recognises that as many as one in four acute hospital beds in the UK will be occupied by a person living with dementia at any given time. However, people living with dementia are a highly vulnerable group within the hospital setting and following an acute admission their functional abilities can deteriorate quickly and significantly. Detailed research is required to understand the role and needs of healthcare staff caring for this patient population and to explore what constitutes ‘good care’ for people living with dementia within the acute setting. Objective(s) The focus of this study was to examine a common but poorly understood phenomena within the acute setting: refusal and resistance to care. Our research questions were: How do ward staff respond to refusal and resistance to food, drink and medicines by people with dementia being cared for on acute hospital wards, and what is the experiences of refusal of care from the perspective of patients and their carers? Design This ethnography was informed by the symbolic interactionist research tradition, with an emphasis on interaction, focusing on understanding how action and meaning are constructed within a setting. In-depth evidence based analysis of everyday care and enabled us to understand how ward staff responded to the care needs of people living with dementia and to follow the consequences of their actions. Setting This ethnography was carried out across 155 days (over 18 months) in ten wards within five hospitals across England and Wales purposefully selected to represent a range of hospitals types, geographies and socio-economic catchments. Participants In addition to general observations of the wards 155 participants participated directly in this study, contributing to 436 ethnographic interviews. Ten detailed case studies were also undertaken with people living with dementia. Results We identified high levels of resistance to care amongst people living with dementia within acute hospital wards. Every person living with dementia observed within an acute hospital ward resisted care at some point during their admission. Conclusions Ward staff typically interpreted resistance as a feature of a dementia diagnosis, which overshadowed the person. However, resistance to care was typically a response to ward organisation and delivery of care and typically rational to that person’s present ontology and perceptions. In response, nurses and HCAs using multiple interactional approaches that combined highly repetitive language with a focus on completing essential care on the body, with a focus on the containment and restraint of the person in their bed or at the bedside. These approaches to patient care were both a response to resistance but also frequently the trigger of resistance, creating cycles of stress for patients, families, and ward staff. Future Work The findings have informed the development of simple no-cost innovations at the interactional and organisational level. A further study is underway exploring continence for people living with dementia in acute hospital settings. Funding The National Institute for Health Research Health Services and Delivery Research programme