Title: Understanding the everyday use of restrictive practices in the care of people living with dementia during a hospital admission: reducing inappropriate use, identifying good practice and alternative approaches to reduce risk and improve care
Funder: Department of Health and Social Care

Abstract: The goal of this research is to better understand the everyday use of restrictive practices in the care of people living with dementia during a hospital admission. Restrictive practices refer to a range of practices including containment, restriction, seclusion, and restraint. Once we understand the nature, reasons, and consequences of their use, we can use this to identify best practice for these approaches and alternatives to their use. Public enquiries and reports have repeatedly identified that institutional cultures of restrictive practice are a significant feature in care people living with dementia experience during a hospital admission. In this setting, these refer to limitations placed on the freedom of people living with dementia during an admission, particularly their ability to move around. We know from wider research, that restrictive practices are sometimes necessary and required, and can have both positive and negative consequences for both patients and ward staff. These practices are typically carried out by staff to ensure safety, prevent injury such as falls and fractures, and minimising risk by ensuring the person receives the essential care that they need. However, they can also reduce opportunities to regain mobility and independence, lead to further deterioration in their condition, significant patient distress and anxiety, and increased risk of emotional and physical burnout for ward staff. Our public consultations with people living with dementia and families, identified the use of restrictive practices in hospitals as a pressing research priority. Many had direct experiences, and there was anger at restraint being used in their care, the lack of understanding of their needs, and widespread fear of hospitalisation. However, to date, no UK research has explored in-depth the use of restrictive practices within NHS hospital wards, the forms it takes, why it is used, or its impacts on people living with dementia, their families, and staff. While there are NHS guidelines on restrictive practice for other patient populations and care settings, there is no guidance or staff training to support best practice and alternative approaches for people living with dementia in general hospitals. In response, we will carry out an ethnographic study, which means we will carry out detailed research observing and talking to nurses, and hospital staff as they care for people living with dementia in hospital wards within three hospitals in different parts of England and Wales. We will describe how restrictive (and alternative) practices impact on the care of people living with dementia in hospital wards. We will also look for good (and alternative) practices within these wards and by observing specialist dementia care teams and wards. If they agree, we will also ask people living with dementia and their families about their experiences of hospital care and will visit them at home to understand their experiences. We will use our research to provide new evidence showing how hospital care could change to improve care and the experiences of patients, families, and staff. We will also use it to develop online (free and accessible) training for hospital staff and for anyone caring for people living with dementia. We will identify good practice and alternative ways to ensure safety and reduce risk that can be implemented in wards and tested in future research studies.

Lay abstract: People living with dementia are at significant risk of experiencing restrictive practices during an acute hospital admission. Restrictive practices refer to a range of practices including containment, restriction, seclusion, and restraint. A series of inquiries, NHS serious incident reviews, and media reports, all identify restrictive practices embedded within NHS ward cultures of care for older people and people living with dementia. This echoes the findings embedded within reviews examining acute care for people living with dementia and research exploring cultures of acute nursing care. These all identify a high reliance on restrictive practices in the care of people living with dementia, typically in response to perceived ‘agitation’, when viewed by staff as “disruptive”, and to minimise risk in the context of organisational pressures. Formal legal regimes and clinical rationales, emphasise restrictive practices to ensure safety, reduce risk, and prevent falls. However, they also take the form of a wider range of routine ward practices and cultures of control during the care of people living with dementia. Their use is associated with high levels of patient distress, increased risk of serious injury, delirium, and death. To date, no substantive empirical studies have examined the potentially significant use of routine restrictive practices in the care of people living with dementia in the acute setting. In response, the aims and objectives of this study are to examine everyday cultures of restrictive practices in the care of people living with dementia during an unscheduled acute hospital admission. By understanding the nature, rationales, and experiences of people living with dementia, their families, and ward staff, the objective is to identify evidence-based (and alternative) strategies in the care of PLWD that are achievable, safe, and transferrable. This is an ethnographic study (observation, ethnographic and in-depth interviews, documentary analysis), which will examine the organisation and delivery of everyday care people living with dementia receive within three NHS Trusts and Health Board chosen for diversity of demographic, geographic, and practice variables. Within each site, we will observe care within two acute wards where large numbers of people living with dementia are known to be admitted, and one allied dementia specialist mental health in-patient ward, where there are established expertise in the use of restrictive practices for people living with dementia when their behaviour is perceived as ‘challenging’. In total nine wards (six acute, three mental health) will be examined. During observation ethnographic interviews will be conducted with ward and dementia specialist staff, people living with dementia and their families, with further in-depth interviews with people living with dementia and their families after their discharge from hospital. Our analysis will inform the delivery of evidence-based strategies to support best practice and alternative approaches in the care of people living with dementia at ward level. We will translate the findings into open access training and NHS Service organisational interventions, which will be disseminated in collaboration with Improvement Cymru and Dementia UK.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING
Health categories: NEUROLOGICAL