Title: Understanding how to facilitate continence for people with dementia in acute hospital settings: raising awareness and improving care
Funder: Health and Care Research Wales (Welsh Government)

Abstract: People living with dementia are at significant risk of developing incontinence during an acute hospital admission (Furlanetto &Emond 2016). UK national audits of the acute hospital setting (Wagg et al, 2010; Harari et al, 2012; Potter et al, 2007) consistently identify that people living with dementia and people over 65 receive particularly poor continence care, with ‘containment’ the key ward based strategy (Dingwall & McLafferty 2006; Booth et al, 2009), with high rates of disposable pads (56%) and catheters (26%) the chief interventions (Wagg et al, 2010). This has implications for patient outcomes; incontinence is a common risk factor for falls (Oliver et al, 2010) and catheters are associated with high rates of urinary tract infections (Royal College of Physicians, 2015), which in turn are associated with prolonged hospitalisation, re-admission and increased mortality (Loveday et al, 2014). Although a typical feature of advanced dementia (Ouslander et al, 1990), incontinence should not be a typical feature of dementia for those admitted to acute hospital wards because they are typically in the early and moderate stages of the condition. UK guidelines on supporting people living with dementia emphasize incontinence is treatable (NICE, 2006). Enhancing the opportunities for people living with dementia to keep control over their most private of functions can enhance independence, rehabilitation, and reduce the length of inpatient stays (Morris, 2005). Incontinence is also highly discrediting (Brittain & Shaw, 2007; Kelly, 2009) and combined with dementia it increases stigma and produces a powerful attack on social status (Herskovits & Mitteness, 1994; Bamford et al, 2012). Yet there is a disparity between policy recommendations to improve care for people living with dementia within the acute hospital and their implementation. Despite the growing population of people living with dementia and the importance of continence care (DuBeau, et al, 2009), little is known about the appropriate management, organisation and interactional strategies for people living with dementia in acute hospital wards (Royal College of Physicians, 2012). In response, this ethnography will provide a detailed examination of the organizational and interactional factors that influence the management of continence care and add to understandings of the impact of these practices on notions of personhood and dignity for people living with dementia and those who care for their most basic bodily needs. Quality of care does not only encompass effectiveness, but humanity and equity. This study brings rigour to all of these aspects of acute hospital care. An initial systematic narrative review (Popay et al, 2006) will identify successful strategies used in other care settings that could inform innovations. Data collection (observation, ethnographic and in-depth interviews) will be in wards that exemplify the challenges for wards of caring for a large number of people living with dementia within 3 acute hospitals (1x MAU and 1x general medical, total: 6 wards). Agreements are in place with 3 NHS Trusts that represent key variables. Potential impacts lie in the new learning drawn from the systematic and detailed observation of everyday continence care people living with dementia receive during an admission within acute wards via: • Improved understandings of current service delivery, organisational and interactional factors that may impede or facilitate dignified continence care. • Enhanced awareness of strategies such as ‘containment’ (pads and catheters) and their effects on the quality and humanity of care. • Improved knowledge on how to enhance outcomes and experiences of care for a vulnerable group. • Dissemination and delivery of new knowledge to frontline providers of care, people living with dementia and their carers and families, service commissioners, managers, and the research community. We believe that what we learn will have relevance to all patients in acute hospitals. Continence care, toileting and catheterisation are significant issue for patients in acute hospitals who may have mobilization or communication issues associated with their admitting condition. It is an issue for patients with many other conditions, including learning disabilities and movement disorders, conditions that impact children and young people and older patients e.g. chronic conditions such as COPD, stroke and diabetes.

Lay abstract: Going to the toilet in private is one of the most fundamental measures of human dignity, and incontinence can impact on feelings of being a person and their wider social status. When people living with dementia are admitted to hospital wards, this requires the assistance of nurses or healthcare assistants. During our current study examining what happens when people living with dementia resist hospital care, we have noticed that toileting was an important trigger that can lead to significant distress and anxiety for people living with dementia (if immediate toileting assistance needs are not met), for families (who see their loved one in undignified circumstances) and for other patients (who may become afraid by another person’s distress) and can increase the potential for dehumanization (staff not recognizing the person or their needs). When a person living with dementia is in hospital, it is often usual for staff to use incontinence pads or to insert a urinary catheter (or leave in for longer than medically required) rather than help the person to go to the toilet. This is often because continence problems are a risk factor for falls. However, catheters can lead to significant risks of infection (that can become life-threatening) and continence pads mean individuals are not seen as able to independently go to the toilet, which in turn can reduce their opportunities to regain mobility and independence. This means that hospitals may be causing people living with dementia to develop incontinence. Our consultations with carers identified that they had a lot of anger about continence care when their partner living with dementia was in hospital. There was a general belief that catheterisation of people living with dementia was often for convenience, due to staff shortages, to prevent wet beds, and to reduce calls for help. Many reported that their partner living with dementia, who was continent, became classified as incontinent within days of admission and required catheterisation. In response, our study will conduct detailed research observing how ward staff and clinical teams care for people living with dementia during their admission. We will describe how toileting practices and routines impact on the care of people living with dementia in acute hospital wards within three hospitals in different parts of England and Wales. During our observations we will carry out in-depth case studies of people living with dementia and interview them and their families about their experiences. Because there is very little published research on continence care for people living with dementia in hospitals, we will also review the literature to identify successful strategies used in other care settings. This will help us to bring together the knowledge that exists on how to promote the best ways to manage the toileting needs of people living with dementia in hospital wards. At the end of the project we will provide a detailed understanding of how hospital care could change to improve care and the experiences of people living with dementia and their families. We will use this detailed research to develop new training and information for hospital staff and families. This will include raising awareness of the risks associated with current practices, and will have made this available across different organisations such as the Royal College of Nursing and open access formats accessible for anyone caring for a people living with dementia via the Internet. We will also identify alternative ways to manage this important but neglected issue that can be implemented in wards and tested in future research studies. Our goal is to improve everyday care in all hospitals for people living with dementia.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL;ORAL AND GASTROINTESTINAL