Our detailed analysis provides understandings of the complex social relations occurring in these wards, and the ways in which the organisation and delivery of continence care at the bedside connects closely with and is informed by wider institutional expectations, policies and priorities, which, in turn, shape the personal impacts of continence care for both PLWD and ward staff. Given the scope of our data set, in this report, we focus on presenting the five major themes that emerged from our analysis: (1) continence as a significant, visible and public phenomenon, (2) continence communication, (3) rationales of safety, (4) ‘pad cultures’ and (5) impacts of continence care.
Theme 1: continence as a significant, visible and public phenomenon
Continence was a significant, visible and public phenomenon, representing a considerable aspect of care for PLWD in the everyday bedside care routines predominantly carried out by HCAs, but also significant in the routines of nursing. Considerations of privacy were often over-ridden by the recording practices and required documentation of these wards. This could also lead to close monitoring and control of the person living with dementia at the bedside.
Theme 2: continence communication
Despite its apparent centrality in the everyday work of these wards, communication was significant in the silencing of continence and the work of continence care. The discomfort surrounding continence care for ward staff could be seen in the strategies of communication and the language used in these wards during bedside care for PLWD, but also extended to staff discussions of continence in team meetings. Euphemisms, particularly for genitalia, bodily functions, urine and faecal matter, were notable during intimate personal care, as was a restricted repertoire of language used to communicate intimate continence and personal care to PLWD. Importantly, there was little evidence that staff were able to check the person’s comprehension or vary language to suit the individual.
In these wards, there was the explicit requirement that PLWD must communicate urgency and request continence care at the bedside using institutionally recognised forms of communication (e.g. through verbal requests and using the personal call button to seek help). Permission was also required to leave the bedside and walk to a toilet, even if the person was able to do so independently. For PLWD, the communication of an urgent continence care need was often not verbalised (either through difficulties in communication or embarrassment), but rather was embodied and could be identified in the body and via changes in behaviour only. It was unusual for staff to recognise or respond to these non-verbal forms of communicating an underlying continence care need.
Theme 3: rationales of safety
Ensuring safety and minimising risks often featured in discussions of continence care for PLWD. A person living with dementia leaving or repeatedly attempting to leave the bed or bedside was always interpreted by ward staff as a risk to be managed, and ward staff typically focused on the immediate behaviour, with the goal of containing and repositioning the patient in the bed or bedside chair. This focus on immediate risks of falling may reduce one risk, but meant that staff typically did not recognise immediate continence needs, other potential impacts on the person or the reduced opportunities for independence and rehabilitation, such as regaining the ability to walk.
Theme 4: ‘pad cultures’
We identified ‘pad cultures’ as the routine use of continence pads in the care of a wider group of PLWD as a precautionary strategy (regardless of a person’s continence and independence). This was viewed as being essential to provide safeguards, ensure containment and prevent ‘accidents’ or incontinence episodes, but had an expectation that PLWD not only wear pads, but that they could and should use the pads. These cultures enabled wards to reduce unscheduled interruptions and ensure containment at the bedside. This approach meant that continence care could become reduced to containment practices and the ‘checking’ and replacing of soiled or wet pads as part of other scheduled task-based bedside care during a shift. Ward staff described continence care as a ‘heavy’ burden, and a ‘heavy load’, which expressed not only the physically demanding nature of this care, but also the experience of isolation and of feeling abandoned with the responsibility of caring for large numbers of PLWD who required highly supportive care.
Theme 5: impacts of continence care
This characterisation of the dependency of PLWD in these wards had wider and significant impacts on the person and their identities. These impacts were intrinsically linked to ‘pad cultures’.
Placing a person into ‘pads’ and institutional gowns, and containing them at the bedside, could lead to the reclassification of these individuals and people (both PLWD and older people) grouped together in a given bay or ward area. The everyday use of institutional gowns was also a response to the routine failure of ‘pads’ as a containment technology, which meant that clothing also needed to be routinely changed along with pads. Therefore, the requirements and failures of the pad technology itself were expected, normalised and prioritised.
The characterisation of the dependency of PLWD could also extend to recognition and understandings of individual behaviour. Walking to the bathroom could be understood by staff as ‘wandering’ and no longer a sign of continence, capacity and capability, but a potential risk of ‘falls’ and recognised by staff as a potential sign of confusion or resistance to ward care. Distress at experiencing intimate continence care from strangers, often carried out in silence or without adequate warning, could also become quickly perceived as ‘aggression’. Forms of embodied communication of continence care needs could be viewed as transgressive or as a form of behaviour constituting a feature of their dementia, rather than an expression of urgent and underlying need.
This study identified ‘pad cultures’ as an embedded practice in these acute wards. We recognise that the use of continence ‘pads’ was often required to support PLWD in response to incontinence. However, ‘pad cultures’ refers to the routine use of continence pads in the care of a wider group of PLWD (regardless of continence and independence) as a precautionary strategy that is essential to provide safeguards, ensure containment and prevent ‘accidents’ or incontinent episodes. In addition, ‘pad cultures’ have an expectation that PLWD not only wear pads, but that they could and should use the pad. These cultures enabled wards to reduce unscheduled interruptions to the timetabled work of these wards and encouraged containment at the bedside. This approach meant that continence care could become reduced to containment practices and the ‘checking’ and replacing of soiled or wet pads as part of other scheduled task-based organisation and delivery of bedside care during a shift.
These ‘pad cultures’ had significant impacts on PLWD and ward staff. These practices informed wider understandings and characterisations of PLWD (both cohorted individuals and groups) in these wards as being highly dependent, which had wider and significant impacts on the person and their identity. In turn, ward staff described continence care as a ‘heavy’ burden, and a ‘heavy load’, which expressed not only the physically demanding nature of these ‘pad cultures’, but also the experience of isolation and of feeling abandoned with the responsibility of caring for large numbers of PLWD. Staff also often expressed the view that, although they wanted to support their patients’ continence, they believed that it was not possible to work in other ways.