Understanding approaches to continence care for people living with dementia in acute hospital settings: an ethnographic study

Continence care: body work and ‘dirty work’ of the ward

Continence care is part of everyday intimate care to support PLWD, and has been described variously as ‘dirty work’, ‘elimination work’, ‘body work’ and ‘body labour’. These forms of paid work carried out on the bodies of others65 and their waste products are habitually regarded as low status, bordering on the polluted,66 and are often gendered. 66 This work poses a serious threat to formal caregivers’ sense of self and status, with higher-status workers distancing themselves from body work. 66–68 It is also invisible work,67 with body workers hiding ‘dirty work’ from others (e.g. by drawing screens around the bed,69 protecting the dignity of both the patient and the worker). Supporting patients to use the toilet supports the maintenance of dignity, as well as well-being and quality of life (QoL), which is a core nursing role. 70 Despite this, continence care is often described as ‘basic’, rather than ‘essential’, care. 71

Dementia, incontinence and stigma

A diagnosis of dementia is associated with significant levels of stigma and powerfully impacts on opportunities for social inclusion. 72 Incontinence is also powerfully stigmatising, particularly in care settings,73,74 discrediting an individual’s social identity and eliciting fear, stereotyping and social control. 75,76

The continued stigma, shame, social isolation and loss of integrity experienced by people living with incontinence is linked to a cultural disgust with urine and faeces. 77 Incontinence in older people can be viewed as a loss of control, a sign of incompetence that is incompatible with adulthood, putting them on the path to becoming a ‘non-person’. 78 Therefore, loss of continence has consequences that go far beyond the physical impairment, including casting strong doubt on a person’s social competence79 and disrupting privacy, as incontinence ‘threatens to expose the incompetence of the body to others’. 7

This stigma is further impacted by intersections of gender, race and ethnicity. 80,81 For example, older women with dementia are exposed to a ‘triple jeopardy’73 of age, sex and condition. Reviews examining the experiences of older women with incontinence identified microaggressions from others (e.g. subtle and insidious acts of aggression, such as impatience, intended to make the individual feel inferior), leading to social isolation. 80

Continence and dementia in the hospital setting

Urinary incontinence is one of the most commonly reported symptoms experienced in the last year of life, experienced by an estimated 72% of PLWD at this stage. 82 Key predictors of incontinence are the severity of cognitive impairment and degree of immobility. 83 Therefore, incontinence is typically a feature of the moderately severe and advanced stages of dementia. 84 Importantly, this does not reflect the continence status of the majority of PLWD admitted to acute wards, generally in the early and moderate stages of the disease, when incontinence should not be a typical feature of their dementia. However, in the acute setting, a UK national audit found that 71% of patients aged > 65 years (33% of whom had a diagnosis of dementia and 44% of whom had impaired mobility) were classified as incontinent of urine. 85 Similarly, a screening study of emergency admissions of patients aged > 70 years with cognitive decline found that 47% of patients were classified as incontinent,14 with 86% of patients identified as requiring supervision and assistance with toileting. 84

In the acute setting, PLWD are at high risk of ‘functional incontinence’, that is when their cognitive impairment, mobility problems or medication (associated with their admitting condition) means that they cannot reach the toilet in time84,86 as a result of their environment, rather than their dementia. 87 A small number88–90 of international audits in acute settings have identified that PLWD who are continent at admission are at significant risk of developing incontinence during admission, with this becoming permanent at discharge. An estimated 17%90 to 36%88 of previously continent PLWD will be clinically incontinent following an acute hospital admission. Carers report high dissatisfaction (60%) with continence care for PLWD during an acute admission, with hospital-acquired incontinence frequently reported as the key long-term post-discharge impact. 10

These high rates of hospital-acquired incontinence are associated with a number of hospital organisation and treatment factors. A primary provisional diagnosis of delirium, dementia or cognitive impairment is the most significant risk factor,89 more than doubling the risk of hospital-acquired incontinence. 91 Increased length of stay,88 advanced age (i.e. aged ≥ 85 years),89,91 gender (i.e. women identified as more at risk)91 and reduced mobility and physical functioning92 also increase risk. The use of continence pads, urinary catheters90 and chair restraints,91 and symptoms of drowsiness, daily pain and sleep problems,91 have all been associated with an increased risk of acquired incontinence following discharge. However, continence care, including new-onset incontinence among older adults and PLWD during their hospitalisation, is a significant and understudied phenomenon.

Continence care for PLWD in acute hospital wards is a continued concern for policy-makers,93 families and carers. 10,94–96 The systemic failure in the NHS to provide older and vulnerable patients with dignified continence care is widely highlighted in service reviews and inquiries. 94,95,97–99 Lack of dignity and privacy was a recurrent theme. 93,97,98

Dementia guidelines emphasise that incontinence is often treatable. 100 However, the small number of qualitative studies examining continence care for older patients in the acute setting identify containment (e.g. use of disposable pads and catheterisation) as key strategies,101,102 corroborated by national audits. 103

Incontinence is highly discrediting7,75 and can increase stigma and attack social status when combined with dementia. 74,104 A disparity exists between policy recommendations to improve care and actual implementation. Although incontinence care plans are common (83%) in care homes, only 37% of trusts have an integrated incontinence care pathway103 and only 18% of trusts have a continence nurse specialist,51 with low levels of continence training for ward staff. 49,102 Despite the growing population of PLWD and the significance of continence care in the acute setting,105 little is known about the appropriate management, organisation and interactional strategies for PLWD admitted to hospital. 8

The current paucity of evidence85 fails to support this population’s continence needs in this key site of care. 105 This presents a significant NHS challenge8 and new approaches are needed. Therefore, our research question is ‘how do ward staff respond to the continence care needs of PLWD being cared for in acute hospital wards, and what are the experiences of continence care from the perspectives of patients, their carers and families?’

Sampling of hospitals and ward sites

Hospital settings are well suited to an ethnographic approach. 130,131 We identified a range of variables that may influence the phenomena under observation using purposive and maximum variation sampling to include three sites that represented a range of hospital types, geographical location, expertise, interventions and quality. In these hospitals, we included sites of care (e.g. assessment units and general medical wards) that received a large number of patients living with dementia, with a wide range of continence care needs and who required acute medical attention. Detailed descriptions of these hospital sites and profiles of the participating wards can be found in Appendix 1.

Sampling in each acute hospital site

Although our sites (i.e. acute hospitals and wards) were standardised, with sequential and systematic data collection, there was some variation between sites. We applied theoretical sampling in sites to achieve robust analytic concepts in the analysis. Informed by grounded theory, sensitising concepts from the ongoing analysis fed into each stage of data collection, expanding the research process to capture emerging relevant aspects in the ongoing analysis. The focus was on ‘discovery’, ensuring the grounding of emerging concepts in data and the reality of the settings. 132

Sampling and recruitment of staff for observation and interviews

We followed the routine and everyday work of nurses and HCAs. We used purposive sampling to include a wide range of clinical grades and roles across the ward settings. In addition, we included other clinical staff, staff with co-ordinating responsibilities and auxiliary staff who were also involved in the care of PLWD and in continence care.

Sampling and recruitment of patients for observation

It was not possible to predict the type of patients who would be present in acute hospital wards during the fieldwork period. However, we were confident from our previous research106 that PLWD would constitute a significant population in these wards. Details of the populations in these wards are found in Appendix 1.

Objectives

The review aimed to:

• explore carers’, family members’ and HCPs’ perceptions and experiences of communication and individualised care planning for PLWD with regard to toileting and continence

• identify the communication strategies and the use of individualised care planning employed by carers, family members and HCPs to manage toileting and continence for PLWD.

Eligibility criteria

We used the PICOS (participants, interventions, comparisons, outcomes, study design)/PICO (population, intervention, control/comparison, outcome) framework to guide the inclusion criteria for participants, intervention/phenomenon of interest, comparators, outcome, study design and context (see Appendix 3).

Searching

Eight databases were searched from inception to June 2018 (updated August 2020), including MEDLINE, PsycInfo, EMBASE, Cumulative Index to Nursing and Allied Health Literature, Education Resources Information Center, Applied Social Sciences Index and Abstracts, British Nursing Index and Open Grey (see Appendix 4). Relevant organisational websites were searched for UK policy and guidance, and key journals were hand-searched (see Appendix 5). Reference lists of included studies were scanned, experts contacted and forward citation tracking performed using Web of Science.

Screening

All citations retrieved were imported into EndNote (Clarivate Analytics, Philadelphia, PA, USA) and duplicate references were removed. Two reviewers (DE and JH) conducted all screening processes, with disagreements resolved through discussion with a third reviewer. Multiple articles by the same authors reporting the same study were linked to help inform decisions on which studies to include.

Quality appraisal

Quality appraisal of the research material was conducted by two reviewers, with disagreements resolved through discussion with a third reviewer using the Mixed Methods Appraisal Tool (MMAT), version 2011. 146–148 Each study was assigned a score based on the number of criteria met (with 25% representing one criterion met and 100% representing all criteria met). Studies were excluded if they scored < 50% for quality (i.e. a maximum score of two out of four criteria). 146 Non-research evidence (e.g. policies and reports) were not subjected to quality appraisal.

Data extraction

Demographic data from the included primary research studies were extracted and entered into a series of electronic tables (see Appendix 6, Tables 4–6, and Appendix 7, Tables 7 and 8). Study findings for the primary research studies for the purposes of this review were all considered to be text labelled as results or findings. All such results were extracted and entered verbatim into Microsoft Word. Data for non-research material were extracted and entered directly into an electronic table (see Appendix 8). All non-research material was available as electronic documents, searched using keywords relevant to the priority areas (e.g. ‘communication’, ‘tailored’ and ‘individual’). These data were then considered to be findings and were extracted and entered verbatim into Microsoft Word. Data extraction was independently checked for accuracy and completeness by a second researcher (DE or JH), with any disagreements noted and resolved by consensus.

Data synthesis

Thematic synthesis was employed to bring together data from both qualitative and quantitative primary research studies and non-research material. 149

Assessing the certainty and confidence of the evidence

The confidence of the overarching synthesised findings derived from descriptive quantitative research (that had undergone qualitisation) and qualitative research were assessed using the Confidence in the Evidence from Reviews of Qualitative research (CERQual) approach,150 and the findings from quantitative experimental research were assessed using the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approach. 151

Objective 1

The first objective was to explore carers’, family members’ and HCPs’ perceptions and experiences of communication, and the use of individualised care planning for PLWD with regard to toileting and continence. The objective comprised eight subthemes.

Objective 2

The second objective was to identify the communication strategies and the use of individualised care planning that carers, family members and HCPs have employed to manage toileting and continence for PLWD. This objective comprised five subthemes.

Visibility of continence care in the ward

The visibility and centrality of continence care can also be seen in the large number of toilets and signage, and the volume of everyday equipment, artefacts and continence products in these wards. The visible signs could be found everywhere across these wards, forming part of the detritus of medical records, bedside files, documents and forms across observation stations, and at patient bedsides on the mobile tray tables, often next to water jugs and trays of food. For example, urine ‘bottles’ could be seen everywhere (particularly in assessment units across these sites) and were typically left on tray tables or stacked on bedside cabinets waiting for personal use (with male patients frequently using bottles openly on the bay, under bed sheets or sitting or standing at the bedside):

I notice some male patients on bay B have cardboard ‘bottles’ next to the water bottles on their tray tables. They are clean and unused, but are striking next to food and drink. Most of the tray tables are stationed at the foot of the bed, so only accessible by the patient leaving the bed or by requesting it.

Site F, ward, 11, day 2

The sheer volume of continence products required in each ward made their visibility, to some extent, inevitable, but also meant that they became ubiquitous and taken for granted. Boxes of disposable continence products, labelled with both generic and recognised brand names, were evident in store and supply rooms, but also stacked in corridors, at each nursing station (the main station, but also the satellite small desks stationed at each bay) and on the mobile equipment trolleys attached to each of the bays:

There are two cupboards opposite bay C, one labelled as a store room, the other just with a number. Both are stacked full with continence products, including pads of all sizes, flat sheets, packs of wipes and catheter tubes, all sealed in white plastic packaging. Along this corridor there are also numerous toilets and bathrooms, some a single toilet or a disabled access toilet, with other doors propped open to multiple cubicles including showers, baths, sinks, and more toilets. Each toilet is clearly labelled, but there is no consistency to the signage used.

Site F, ward 11, day 2

Commodes and hoists stand in alcoves in the brief intervals between their frequent usage. There were usually a number of commodes (typically two or three that had to be shared across all of the bays and single rooms) and one hoist per ward, although there was some variation in the numbers of beds and the admissions, and the expected dependency of admitted patients. Therefore, equipment was typically in high demand, particularly at busy points in the shift, such as the morning, afternoon and evening routines of personal care and toileting, when continence care was part of bedside care timetabled across these wards, and when urgent continence needs were high for patients. Of note is the fact that during the periods of observation, there were shifts when all these wards were described as close to ‘running out’ of pads, reflecting the high usage of continence disposables and equipment in the care of PLWD in these wards:

17.10 Beep! [personal bedside alarm] coming from somewhere in bay 3. The person in bed 18 is back in bed again. 17 is still behind curtains, a mobile phone is ringing, possibly one of 15’s visitors. Senior member of the medical team, pharmacist, and the nurse in charge of the ward, are discussing the patient in bed 17. They are standing apart with the nurses’ station and a computer trolley between them. The doctor states that the person in bed 17 have got through three pads and filled two colostomy bags, the Sister is recording all this at the computer.

Site H, ward 16, day 28

There is, of course, some variation across the male and female bays. Continence technologies in the form of urine ‘bottles’ (i.e. a cardboard, sometimes plastic, curved tube) were highly visible and accessible in men’s bays. In female bays, the artefacts of continence care were less immediately visible at the bedside. Here, ‘pans’ to be used in bed, or commodes (i.e. a portable toilet on wheels that looks like a wheelchair and has a lid that can be removed to reveal a removable pan that needs to be emptied after each use) for use at the bedside, were the most common form of continence technology. Both ‘pans’ and commodes had to be requested (or prompted), brought onto the bay and taken to the bedside by staff to be used behind the curtain. The commode was also used as a mobility aid to transport the person to the nearest toilet. Therefore, to obtain, use and dispose of these methods required support from ward staff.

Continence must be observed and recorded

Continence is tacitly acknowledged as a bodily process that happens out of sight of others, an expectation in line with the emphasis placed on the dignity and privacy of patients found in the institutional policies governing these wards. However, this was rarely possible for PLWD (and older people) in these semipublic hospital spaces. Privacy was also over-ridden by the recording practices and required documentation of the wards (i.e. what, when, how often and what individuals have or have not ‘passed’), which must be viewed, assessed, described and recorded in patient notes. As a result, continence discussions and its assessment occurred openly in these wards and bays by ward teams across the semipublic ward spaces. We found that these assessments and the associated documentation appeared to be routinely applied during the care of PLWD (and older patients) compared with other patient groups (i.e. the very small number of working-age people in some of these wards). It was not uncommon for staff to publicly discuss a patient’s continence or the organisation of their continence care in hearing range of others, at the foot of beds, in the middle of bays or in the corridors that line each ward:

The handover sheet states the man in bed 19 has dementia, although there are no specifications of what type of dementia; the man in bed 22 has Alzheimer’s and ‘confusion’. It’s interesting that they have both been to the toilet today independently, while there was nobody on the bay to observe them doing it: it feels like together they are cheating the system, working in silent collaboration. The HCA is now helping the man in bed 22 to walk to the toilet. She seems very worried he will fall, so she gets him a walking frame to use and guides him in with an arm on his back and stays inside the toilet with him (even though he can walk there by himself when the nurse is not there). The man in bed 19 is now asleep on his bed. The HCA then comes off the bay and has a loud conversation with the nurse about his toilet trip: ‘Did he pass urine?’ ‘No, but he opened his bowels a little bit, at least I think that was his’. They discuss that they don’t know if anyone went to the toilet before him, so it could have been left in the toilet by someone else. I tell him that this man [bed 22] had walked to the toilet recently, assisted by the man in bed 19 who went after him. They were completely unaware of this and seem genuinely surprised that these patients, or indeed any patient in this bay, would go to the toilet without them.

Site H, ward 15, day 23

The visible, public and recorded nature of continence care was observable in other aspects of everyday hospital practices. As we can see from the example above, privacy was not, typically, considered by staff to be possible for PLWD, with their use of the toilets closely monitored. It was common practice for staff to stay in the bathroom or behind the curtain while a person living with dementia was using a toilet (or commode at the bedside). Toilet doors were commonly kept ajar or closed but unlocked and staff would stay present either inside with the person or just outside the door. This was also associated with managing risk and the fear of falls among staff, as this HCA explains to me, ‘[t]hey fall when you are not watching’:

The woman in bed 7 gets up and out of bed and tidies round her bedside picking up bits of paper from the floor. She is wearing a hospital gown and her large wrap-around pad is very visible. She suddenly holds onto her crotch, heads into the bathroom, and locks the door. The HCA comments to me, ‘She is very secretive she doesn’t like anyone looking at her bits and pieces’. She then tells me about another patient she has cared for, ‘A lovely lady, very independent, she wouldn’t let anyone look at her downstairs at all. I will leave her in there for a bit and then use the scissors to turn the lock (from the outside) and just check on her. I will just have a quick look’. The HCA uses scissors to open the lock and opens the door, the woman is standing at the door and she closes it and locks it, leaving the HCA outside. The HCA turns to me, ‘It’s not nice, but they fall when you are not watching!’

Site H, ward 16, day 14

This could lead to close monitoring and control of the person living with dementia. Here, the nurse supporting this man not only goes into the bathroom, but also repeatedly gives him instructions on how to use the bathroom (i.e. to sit rather than stand to urinate):

When the man in bed 19 wakes up, she brings him a frame so he can walk to the toilet. When she gets the frame to his bed, he immediately demands a cup of tea. ‘OK’, she says, ‘You were asleep till a minute ago!’ He responds, ‘Now what, I was getting up’. He seems quite irritated. He walks to the toilet using the frame, mentioning that his trousers are loose (hospital issue pyjamas that are far too big for him). He complains that the toilet light keeps getting left on but should be turned off when not in use. The nurse goes in with him and asks him to sit down to go to the toilet. This irritates him - ‘I’m standing up to do a jimmy riddle!’ he shouts, refusing to sit down. She explains that he keeps getting his trousers wet when he stands up, repeating this three or four times, standing in the doorway to the toilet, holding the door open. He refuses to sit down, so eventually she leaves and lets him do it as he wants.

Site H, ward 1,6 day 17 (bold text represents shouting)

Here, the close shadowing and instructions to wash her hands by this one-to-one carer clearly irritates this person living with dementia:

The one-to-one carer follows the woman in bed 4 into the bathroom, she is standing very close behind her, but they are very friendly and relaxed and both smiling as they walk through the bay. This woman has a diagnosis of dementia and the team tell me she also ‘has a touch of delirium’. She says firmly, ‘Don’t come in, I want to pee in peace!’ The one-to-one carer stops and they laugh together as she waits outside. As she comes out the one-to-one carer says, ‘Have you washed your hands?’ ‘Yes! I am not stupid!’

Site G, ward 14, day 29

Shouting instructions through doors and into bathrooms was an established practice, occurring frequently during shifts in these wards. The fact that these practices would draw public attention to a patient’s private continence and capabilities was neither recognised nor considered. Here, the team support this woman into the bathroom and check on her progress. Note that, although she is capable of reaching the bathroom using a walking frame (and this was a regular occurrence during this shift), the team use a wheelchair to return her to the bedside. This has consequences for the person (see Theme 5: impacts of continence care and ‘pad cultures’ on recognition of the person and understandings of dementia). Although using the frame was viewed as quicker and more efficient by the team (i.e. increasing the speed of continence care was often an explicit priority in staff discussions, informing the organisation of continence care and the rationales for their use of ‘Stedys’ and wheelchairs to transfer PLWD to or from the bathroom), this could deny patients opportunities for independence and lead to deconditioning:

17.00: The registered nurse from bay A is helping the patient from bed 5 walk to the toilet. She is wearing a pink dressing gown over her nightie, with blue slippers on her feet, and walking with support from a walking frame. She has two visitors (her sons) who move to the corridor to give her some privacy, where they stand talking to each other. She is walking very slowly with the frame, with the nurse now supporting her, leaning forward, and appears to be in danger of going over the frame without support. The HCA joins them, walking along with her, then helping her into the toilet once they reach it. ‘I got you’, prompts the HCA. Both the nurse and the HCA go into the toilet with her, before leaving with the frame. Opposite the toilet the nurse from Bay B is helping a patient from Bay C to the shower, pushing this patient’s i.v. [intravenous] drip along with her. After 5 minutes pass, the HCA knocks on the toilet door ‘Have we finished?’ then goes back into the toilet (the door was closed but not locked), taking a wheelchair in for her, wheeling her back rather than using the frame again. Getting 5 back to her bed is much quicker in the wheelchair. She smiles when she sees her visitors standing in the corridor.

Site F, ward 12, day 9

This was a common feature of continence care in these wards, that is patient privacy was over-ridden by the expectation of close observation and instructions, recording and, often loud, public discussion. Discussing a patient’s continence was an everyday assessment made by ward staff. However, although we were not able to follow family discussions with the ward and medical teams elsewhere, we very rarely observed individual patients living with dementia involved in discussions about their continence care or preferences.

Silence at the bedside

It is important to note that continence care at the bedside was also often carried out in complete silence. This approach was routinely observed during the care of PLWD, particularly those who had difficulties in communicating verbally. Therefore, although staff would routinely announce what care was going to happen when they arrived at the bedside, the many procedures involved in carrying out intimate continence care on the body of the person often continued without explanations of what was happening to them, and seemed to assume tacit understanding and consent. Here, the team carry out intimate continence care in silence:

The patient in bed 18, who is living with dementia, is beginning to moan louder than previously. The team with her are giving no instructions, and are not talking through step by step what they are doing, in contrast to the other patients in this bay (they have been going round the bay in order from bed 13). They are just acting on her body, completing necessary tasks without talking to the patient. Her moans get louder and longer, but the work continues, with everything done in 5 minutes. The curtains are opened, and she is now lying flat on her bed, as if asleep. Her head is resting on the pillow. I think she is still awake, but her eyes are tightly closed, as if hiding. Her tray table is no longer over the bed and has been moved to the side, now out of her reach.

Site H, ward 16, day 23

This above exchange is additionally complicated for this patient because the absence of communication from the team also signalled a requirement (i.e. a taken-for-granted expectation) that this work must continue and involved the delivery of essential care. However, this approach was also problematic for PLWD and, as we can see in the tightly closed eyes of this person following the care, could lead to significant distress.

The language of continence care

The language used by ward staff to describe body parts, particularly during the delivery of intimate and personal care, was striking. The anatomical terms for genitalia appeared unmentionable and were rarely, if ever, used in these wards in discussion with patients, especially with PLWD (although this extended to other older people) and family visitors. Euphemisms would commonly be used for male genitalia in the discussions between staff and with patients during bedside continence care, and these were always juvenile in nature (e.g. ‘todgers’, ‘johnsons’ and ‘willies’), with expletive forms never used. Female genitalia were never named anatomically, always talked around and only euphemistically referred to (e.g. ‘your bits’, ‘bottom parts’, ‘lady parts’ and ‘bits and pieces’) or simply not referred to. The word ‘vagina’ was heard spoken by ward staff to a patient living with dementia only once during continence care over the 180 days of observation. More widely in these wards, ‘down below’ (or versions of this, e.g. ‘downstairs’) was the phrase most commonly used during the care of both women and men to describe and communicate intimate continence or personal care that was about to happen or was happening to the person. During timetabled personal care (which often included continence care) it was common for staff to describe (to each other and to patients) the routine of ‘give them a good wash down below’ or ‘we need to look downstairs to check if you are wet’, with the goal of such personal care explained as getting the person ‘nice and fresh’ and of ‘freshening up’ the person.

Continence care was often part of the wider personal and intimate care routines of washing the person, with a restricted range of language used to explain to PLWD what this entailed. Here, the team carrying out continence care as part of personal care describe to the person their goal of a ‘little freshen up’, with their notification to him that intimate care was about to take place described as ‘a little wash down below’. In addition, although the team talk about his continence, they do not involve him in these discussions and ignore his clear ‘no’ in response to being asked if he is ‘enjoying’ this:

The man in the side room (SR3) is a tiny extremely thin man with very thinning grey hair, he appears quite frail and has no front teeth, which makes him seem even more fragile (I wonder where his false teeth are as these can often go missing in the wards). The team (two HCAs) are working as a ‘double’ carrying out routine personal care at the bedsides and have now reached his side room. One HCA does all the talking although they are clearly doing all the work together:

‘Morning [they use his first name], did you sleep OK? You in a bit of a shape there!’ (He has been lying in what looks like a very uncomfortable angle in the bed with the sheets fairly tangled.) ‘Sore?’

He replies: ‘Yes’.

HCA: ‘You came in for a PEG [percutaneous endoscopic gastrostomy, an endoscopic medical procedure in which a tube is passed into a patient’s stomach through the abdominal wall, usually to provide nutrition when oral intake is not possible or adequate], can I see your tummy? You’re in a right little shape there! Can I have this arm my sweetheart? Work with us’.

They laugh together as they are taking his pyjama top off: ‘Ready one, two, three. Yes, there we go [they use his first name], getting somewhere . . . It’s warm in here! Watch your arm’.

‘It’s OK [they use his first name], relax my sweetheart I am going to give you a little freshen up’. She uses a wipe to wipe his face, ‘A bit cold and wet! Alright?’

As they work, the other HCA asks ‘Had he got a catheter?’

The first HCA responds: ‘No but he is doubly incontinent’ (she says this in a low tone) ‘Your wife coming in today?’

Patient: ‘I don’t know’.

‘I bet she is!’

[I can hear that they are pulling the side fasteners on his pad] and they say ‘You are determined to flash us! Are you helping?’

Patient: ‘Yes’.

‘Let’s have a little look at this butt. Lovely job’.

They are now drying him: ‘Are you ticklish on your feet! Are you enjoying that?’

Patient: ‘NO’ [he says this very firmly and clearly].

‘What did I do with that pad?’ She gets it from the chair. ‘Now a little wash down below’.

Site F, ward 12, day 7 (bold text represents shouting)

It is important to note that during the removal and replacement of clothes and pads, this man who is living with dementia is also described as ‘determined to flash’ them, suggesting that these ward staff are experiencing significant discomfort during this process, with this signalling that some intimate care was being viewed or experienced as potentially transgressive.

The language used by ward staff to describe continence care was often highly coded, with a taken-for-granted expectation that patients (and their families) already had a working understanding of and familiarity with ward practices and the everyday clinical jargon used within it. This was particularly problematic for PLWD (and older people), who often did not appear to recognise these terms, the technologies, such as the ‘bottles’ and ‘pans’, they were offered, or what the ‘pads’ (and catheters) attached to their bodies were or why they were wearing them.

Here, an everyday example of a HCA talking around continence technologies and care broadly referred to a continence pad as ‘it’, with the nurse using both highly contracted and coded language with this patient. The team become increasingly frustrated when this patient does not appear to recognise or respond to these requests as they try to find language to communicate, which included ‘change(s)’ and repetition of ‘leave it’. In addition, the team move from the word ‘dirty’ to eventually the more medicalised language of ‘opened your bowels’, rather than further explanation of what this care entailed:

The nurse walks down the corridor and comes back minutes later with an armful of packets of wipes. The HCA remains talking to the patient in bed 15. ‘Leave it alone now darling . . . leave it alone . . . leave it alone . . . leave it [pad] alone . . . We are going to change it . . . it’s dirty . . . leave it!’ She keeps repeating this until the nurse returns again, this time with a big yellow bowl full of soapy water. Throughout this, the only communication with this woman is to tell her to ‘leave it’ although not referring directly to her pad, and to warn her that ‘it’ is ‘dirty’. No introductions or explanations. It seems reasonable for this woman to want to remove the pad if it is wet or soiled. The nurse arrives and speaks to her more directly, saying her name five times until she has her attention, ‘We need to change you, you have opened your bowels, let me wash you’. Two minutes later I hear an exaggerated intake of breath and hushed giggles from the team behind the curtain.

Site H, ward 15, day 17

A key feature of the communication from ward staff to PLWD, in an attempt to rationalise the need for intimate continence care (e.g. cleaning the body and changing pads, clothes and sheets), was the emphasis on managing and containing ‘dirty’ (and ‘wet’, as we have seen earlier) bodies, beds and surfaces. The contracted phrase ‘it’s dirty’ was often used by staff and repeated to the person living with dementia during care, particularly when staff appeared anxious to speed up and complete continence care. The anxiety in this team (see above) appeared to increase when the woman tried to remove the continence pad herself, suggesting fear of not containing waste during continence care and the potential for contamination (and the additional personal care required) as an unsettling prospect. When patients appeared to resist this care, the team emphasised the institutional expectations and the fact that neither the patient nor the team had any choice in this, with the phrase ‘we need to change you’, as seen here, commonly used.

Although clinical terms were also used to discuss continence care and bodily processes, such as ‘bowel movements’ and ‘stools’, they were often highly coded, particularly during routine bedside personal and continence care. The terms used were often beyond the comprehension of many patients. These forms of coded language were commonly used when directed towards the technologies of continence care and, in particular, towards the use of continence ‘pads’. Staff would typically announce to the person living with dementia ‘we’re just going to change your pad’ [Site F, ward 12, day 1] before actively beginning to do so, often without context as to what the pad was, its purpose or location on the body. The routines of bedside continence care were typically abbreviated by ward staff to the point of jargon. Staff across these wards would routinely refer to ‘opening’, ‘passing’ or ‘voiding’, a shortening of ‘voiding his/her/your bowels’ or ‘passing [urine]’ in descriptions and instructions during, often fast-paced, bedside continence care. This could be especially problematic for PLWD. Here, two patients living with dementia do not respond when staff repeat these terms at the bedside; however, the team appear to assume that repetition will ensure the person’s recognition and comprehension (or that this is not possible for the person) and move on:

The HCA has taken two bottle bedpans to the man in bed 3. The female member of the medical team asks the HCA for ‘a sample to measure’, and then explains to the patient he is dehydrated so they want to ‘monitor intake’ and ‘how much he passes’, and explains that the consultant will be coming to see him later.

Site F, ward 11, day 17

HCA [A] and [B] are with the person in bed A1, who has a dementia diagnosis. They are doing the timetabled observations at each bedside in turn. ‘Any pain [name]?’ ‘When you went to the toilet [name] did you open your bowels by any chance?’ She repeats this question three times without rephrasing . . . ‘Did you open your bowels? Did you open your bowels? Did you open your bowels?’ A1 doesn’t answer.

Site F, ward 11, day 18

Importantly, as we can see in the example above, verbal responses to this coded language were also often required by ward staff to confirm a patient’s health status (and, in turn, could inform informal assessments of the person’s cognitive capacity). Ward staff typically used contracted speech and repetition of these key phrases to talk around continence, and these approaches indicated (to us, to PLWD and to the wider ward) staff understanding of the condition and that the compulsive repetition or slow annunciation of single words and phrases can aid comprehension. In contrast, our observations indicated that such loud repetition of contracted phrases often appeared to only increase distress in the person living with dementia.

Ward staff regularly used this coded language when communicating with PLWD who, subsequently, were expected to understand this language and to comply with instructions. Such institutional lingo, as characterised by Goffman,76 could be heard along with the host of wider acronyms, job titles, medical jargon and familiar words given new meaning, which all patients, including those living with dementia and their families, were expected to understand without explanation in these wards. More widely, names of areas of the hospital, the processes and procedures that take place within them, and the brand and common names of the equipment and technology used were spoken of without introduction or clear explanation. 124 For PLWD, this language could be particularly problematic, as assessment of their independence and mental acuity was based on their ability to appropriately recognise, respond and reply to unfamiliar jargon around unfamiliar processes.

Communication of continence needs: seeking permission – institutional and embodied forms of communication

A key aspect of the cultures informing continence care in these wards was the explicit requirement that PLWD must communicate and request continence care at the bedside or obtain permission to walk to a toilet, even if they were able to do so independently. However, for this patient group, the communication of an urgent continence care need was often not verbalised (through either difficulties in communication or embarrassment), but rather was embodied and could be identified only in their body language or via changes in their behaviour. It was unusual for staff to recognise or respond to these non-verbal forms of communicating an underlying continence care need.

During everyday care at the bedside, staff repeatedly emphasised to PLWD that they must communicate their care needs, including continence needs, using institutionally mandated forms of communication (e.g. through verbal requests and using the personal call button or ‘buzzer’ to seek help). Staff typically emphasised to all PLWD (and other older people in these wards) the risks of ‘falls’ and ‘falling’, the importance of waiting for assistance and of seeking permission to leave the bedside, even for those who were able to independently walk to and from the bathroom.

The requirement of ‘permissions’

The requirement of permissions was associated with the impacts of the built environment of these wards. Patients in each bay (usually with four to six beds) typically shared a bathroom cubicle that was attached to the bay or close by. There were always a number of additional toilets and bathrooms along the main corridor and throughout the wider ward, which is notable because, although, in principle, they were accessible to all, they were designated for use by the patients in the geographically closest bay (and, in some cases, the nearby side rooms). In addition, visitors and staff were prohibited from using these bathrooms (signs directed visitors towards public toilets outside the wards). This meant that some of these facilities were rarely, if ever, used.

People living with dementia were restricted by ward staff to the use of the specific toilet designated for their bay. These restrictions were typically tacit, although also sometimes clearly expressed by ward staff, who would not routinely support or permit the use of other toilets and bathrooms in these wards. Therefore, if the allocated bay toilet was in use, the person living with dementia would be expected to wait or was unsupported in leaving the bedside until their allocated toilet was vacated, regardless of the many alternatives typically available in the ward. This routine practice was associated with the typically fast pace of work carried out by the bay teams and the observable pressures ward staff experienced to stay in their designated bays (to monitor vulnerable patients). However, this could have a significant impact on PLWD:

With clouds low outside and lights dimmed down, it feels much later in the day than it is. The woman in bed 15 gets up to go to the toilet opposite the foot of her bed. She is younger than the other patients on the bay, but notes record her as having a non-specified cognitive impairment. All of the women on this bay have a record of cognitive impairment, dementia or queried dementia in the handover notes today. A large nappy-style continence pad is clearly visible under her backless hospital gown, despite her now demonstrated ability to get up and move to the toilet as required. The nurse tells her somebody is in the toilet and she responds by rattling the door, but the woman in bed 16 is in there. The nurse leads her off the bay, holding her hand. Rather than returning the patient to her bed the nurse and the patient go for a walk, giving the person in the bathroom time to finish. They go for a short loop of the unit, but do not go into any of the many vacant patient-only toilets they pass on this loop.

Site H, ward 15, day 17

This was also associated with an observable reluctance among PLWD to enter bathrooms independently, acting as if doing so was prohibited. PLWD in these wards appeared to quickly recognise that they were not permitted to act independently without seeking approval, particularly actions that involved leaving the bedside or the use of the bathrooms and toilets outside the immediate area of their bay:

One of the men from bay C is walking to the toilet. He is barefoot and has a small cut above his left eye. He looks in the toilet, but the housekeeper is in there cleaning, so he keeps going, walking towards the showers. The HCA and the housekeeper call him back and tell him it is OK to go in the toilet, which seems to confuse and startle him a bit, and so they again explain to him he is OK to go in. He doesn’t want to go in while the housekeeper is in there, but once she comes out, he is fine. After a few minutes HCA(B) knocks on the door to check that he is alright and reminds him to wash his hands when he is done. A different HCA working on the bay then comes and helps him to walk back to his bedside.

Site F, ward 12, day 13

This culture of permissions was pervasive. Ward teams clearly expected patients to ask to visit a bathroom and reacted in surprise when they found that PLWD had independently walked to the toilet without them, had not used their designated toilet or had used the ‘wrong’ toilet elsewhere in the ward. So engrained was this culture of permissions that unflushed toilets could lead to ward staff calling estates to report a ‘code brown’ (i.e. a blocked toilet), rather than consider if a patient had walked to the toilet without support or had used the ‘wrong’ toilet.

The permissions and privileges granted to PLWD around continence care and independence were closely associated with the cultures and understandings of risk and safety in these wards. A key concern in the care of PLWD was a risk of ‘falls’ during their care and managing and reducing this risk. If witnessed by ward staff, walking in the ward and looking for a bathroom or toilet would often be recognised as a risk and so it was common for ward staff to intercept patients attempting to leave their bedside, ask them to return to the bedside and offer alternatives:

8.30 a.m.: On bay 3 a female patient with a catheter tube visibly hanging between her legs is assisted by a nurse as she walks to the toilet. Minutes later another patient walks back from the toilet. She is walking using a frame, her hospital gown is open at the back, revealing a large nappy-style pad. When this patient is back at her bedside the nurse reminds her to tell her when she needs the toilet, and not to get up, emphasizing that if she does, she will fall. She then repeats this instruction to the neighbouring patient, showing her where the bedside buzzer (personal alarm) is so that she can call her if she is not there. This emphasis seems odd given that this nurse and I have observed both of these women independently get up and go to the toilet and show a clear awareness of their own continence needs.

Site H, ward 15, day 16

Institutional forms of communication prioritised

We found that, for PLWD to successfully communicate an immediate and urgent continence care need that resulted in staff interrupting their timetabled care routines to attend to them, they needed to clearly articulate their request verbally or use the bedside personal call button. In the example below, this patient was able to verbally communicate their continence needs clearly and, in response, the HCA immediately interrupts timetabled care at another bedside to support her. Of note is that this woman is continent and independently mobile, but she is still helped to the bathroom and has a continence pad as routine. It is the removal and replacement of the continence pad that this woman needs support with, as she is able to walk to and from the bathroom independently:

For the first time in some time, I hear a clear request of ‘Help me’, coming from one of the side rooms. An HCA goes straight to this and assists the woman in question to walk to the disabled toilet opposite bay B. She goes in with her and closes the door, although their discussion is clearly audible from the corridor: ‘I’ll get you a clean pad, you just sit down there’. She returns to the corridor, gets a pad from the store room, and returns to the toilet with a pad, ‘Let’s get you up, let’s get this pulled up . . . ready now, let’s go back and have a wash’. The woman does not audibly respond but appears to follow the HCA’s instructions. They come out of the toilet and walk back down the corridor holding hands. The patient’s hospital gown is tied tightly all along the back hiding the continence pad from view.

Site F, ward 11, day 12

Many PLWD admitted to these wards, like the woman above, could clearly articulate their urgent continence needs. However, for others, verbal communication was not easy and was often restricted by their condition or by the quick responses of staff, which over-rode the person’s ability or opportunity to communicate themselves. In addition, although staff quickly responded to bedside alarms or ‘buzzers’, many PLWD found these difficult to access and use:

The woman in bed 15 is sitting up in her bedside chair aided by the physiotherapist who stops to explain the personal bedside alarm. The physiotherapist explains how it works then tests her comprehension. However, this woman appears to have no recollection when questioned about this button’s purpose or how to use it. The physiotherapist then puts it on the tray table in front of her and explains again, but when she repeats the test, this patient seems to become more confused. The physiotherapist then changes the subject, asking her if she wants to stay in the chair or get into bed. She responds that she would like to stay in the chair, then lifts up the button from her tray table to examine and asks the physiotherapist what it is for. After the physiotherapist leaves, this patient asks the HCA what the button in her hand is for.

Site H, ward 16, day 25

We found that, as researchers who were visible in these wards and, typically, in the corridor outside these bays, we (KF and AN) were regularly called over by PLWD (and older patients) to their bedside and asked for continence care and support. For example, PLWD would say to us ‘I want to wee’, would ask for support at the bedside (e.g. ‘Can you bring me a commode?’) or would request help to walk to the bathroom (e.g. ‘Can you help me get to the bathroom?’). These requests were typically made using more informal language (‘wee’ and ‘tinkle’) in hushed tones, but also contained a clear sense of urgency for the person. Here, two women on a ward for care of the elderly with cognitive impairment ask the ward team to call the researcher (KF) over to their bedsides. They have been admitted for a number of days and so we have spent quite a bit of time talking together during periods of observations. Of note is the fact that they bypass the ward team and ask the researcher (viewed quite reasonably as a ‘nurse’, despite being dressed in civilian clothing) for support:

5 p.m.: The HCA comes over, ‘The ladies are asking for you!’.

It is the ladies in beds 2 and 3 in this six-bedded bay and I head over and they both start talking to me at once. The woman in bed 2 is sitting up in bed. Her grey hair looks dishevelled and she has a cut on her lip (from her ‘fall’) and is wearing a pink hospital gown. She looks quite neatly tucked in the bed. The trolley next to her is very tidy and has a sip cup and water jug, a portion of cake and a packet of custard creams sealed in their wrappers laid out on it.

The woman in bed 3 is sitting in the chair, a tiny figure in a pink hospital gown and red hospital socks, a blue hospital blanket around her shoulders and an i.v. [intravenous] port in one arm leading to a mobile drip. The trolley is placed low in front of her and she has a glass of water and a water jug in front of her. They both talk quickly and at once.

The woman in bed 2 tells me ‘I’m not supposed to be here’. She giggles and shrugs nervously, ‘Something happened, I am not supposed to be there, I feel awful, embarrassed! I’m taking up space, taking up a bed meant for someone else, my husband is in [a small market town, south of the city], he won’t know where I am. I just came here as a visitor, I am not supposed to be here, something happened but I don’t know what’.

I listen to her and reassure her as best I can and tell her I will let the team know that she needs to contact her husband (I do that later).

At the same time the woman in bed 3 asks me, ‘Can you help me please, I want to wee, where is the commode can you help me nurse, I want the commode, where is it?’ I go to the team and they go to fetch the commode and wheel it to her bedside and close the curtain. I feel a certain discomfort that I seem to be the person these ladies feel they can speak to, bypassing the team.

Site G, ward 14, day 25

The woman in bay D (D1) opposite the nurses’ station, is a tiny woman with a silver–grey bob and had been described as ‘lush’ by the team in the morning handover. She is wearing blood-stained hospital issue pyjamas and is using a walking frame to leave the bedside and slowly making her way across the bay. In one of her hands she is clasping the walking frame, but also an extremely large wrap-around continence pad. She reaches the doorway and looks around. I smile at her and she beckons me over. She explains that she needs a pad and shows me what she has in her hand and explains that it is far too big. ‘Are you a doctor? Sorry?’

I explain who I am and that I will go and find someone who can help. I find the HCA in the corridor and explain, and we head to the store room together.

Site F, ward 12, day 5

Throughout the data collection period, we received many requests for continence support, in hushed and urgent tones, from PLWD and older patients. This patient group were not always able to recognise or use the call button, or to use it as instructed, but also faced the difficulties of publicly talking about or requesting continence care. In addition, given the fast pace of work on the wards, these difficulties and their attempts at communicating urgent care needs were often not recognised.

Bodily expressions of continence need

It was often not easy for PLWD to communicate their urgent care needs either verbally or via personal alarms. Instead, the communication or awareness of an urgent and pressing care need was often embodied. These embodied signs could be identified in the person’s body and changes in behaviour, which were typically subtle, at first, but, if unrecognised, often became overt, repetitive and increasingly urgent.

We identified several common patterns of embodied communication, which included touching, adjusting or trying to remove pads and catheters; displaying pads; looking increasingly uncomfortable in bed or in the bedside chair; repetitive drumming of hands or tapping of feet; and repeated attempts to get out of bed or the bedside chair and walk across the bay or into the wider ward. In addition, this could take the form of unarticulated moaning, calling or crying out, which was often prolonged and repetitive. These embodied expressions of underlying care needs were observable in almost every person living with dementia at some stage during their admission. As we could follow ward teams and their PLWD over time, we observed that the embodied expressions of continence needs could be missed or, if recognised, the ward staff did not understand the urgency of these needs when communicated, or they were interpreted as something to which the ward staff felt unable to respond given the expected pace of timetabled care.

Without early and prompt recognition and support, these underlying care needs, often related to pressing and urgent continence needs (i.e. needing the toilet, having a soiled or wet pad or bed), could quickly become more entrenched experiences and overt, audible and visible communication of distress. Yet even this distress could remain unrecognised and, instead, be understood by ward staff as a feature of the person’s dementia and, therefore, considered a behaviour that was without purpose and unremarkable in this setting. Consequently, continence needs remained overlooked.

In the example below, the patient’s embodied communication is neither subtle nor difficult for staff to interpret. The patient demonstrates her urgent continence needs by attempting to urinate on the floor in the ward day room. What is of note is that the nurse’s response to this is not to help the patient to go to the toilet, but, rather, to prevent the transgressive behaviour and exposure that appears to violate the expectations of decorum in these wards and the dignity of the person. As we have discussed, there was a powerful sense in all of these wards that continence care should remain hidden on the person and unseen by others in the wider ward. The immediate response of the ward team was to cover up the patient and return her to the bedside, neglecting the clearly expressed urgent continence need and distress communicated by the patient’s actions:

The patients in bay 7 to 10 all seem to be awake, handover is under way (this started at 7.30 a.m.) following the safety meeting in the seminar room. One person living with dementia (bed 20) is in the day room, accompanied by a nurse, who is now wearing a brown cardigan over her nursing scrubs, ready to go home after the night shift. The patient suddenly hitches up her pink hospital gown and squats to urinate. The nurse reacts by talking her out of what she is doing. The nurse is able to talk her out of going to the toilet on the day room floor, but then walks her directly back to her bed, passing the bay toilet.

Site H, ward 16, day 2

It is important to note that, although this was a less common example, it powerfully demonstrates the ways in which the organisation and delivery of care in these wards meant that staff could often not recognise or respond to the continence needs of their patients, even when they reflected an obvious physical and urgent need. It also reflects ‘pad cultures’ (see Theme 4: ‘pad cultures’ – conflicting urgencies and continence containment): the expectation that patients will use the pads they have been given to wear.

More commonly, PLWD attempting to leave the bed or bedside would be viewed as at risk of a ‘fall’, ‘wandering’ or ‘absconding’ and would be instructed to remain at the beside. PLWD would also typically be reminded of the risks of leaving the bedside. However, leaving the bed was often an unverbalised attempt to reach the bathroom. Here, this woman receiving one-to-one care, typically used for patients seen as ‘at risk’ or a ‘disturbance’ to the working of the ward, is restricted to the bed:

The one-to-one carer with the woman in bed 2/1 sitting opposite her. She is in the bed with the side rails up on the sides and she is slowly trying to place her legs over the rails.

In response the one-to-one carer says, ‘Where are you going? Stay inside please’. Putting her leg back in the bed the one-to-one carer hands her a little triangle of sandwich from the tray table. This woman takes it and throws it at the one-to-one carer, but she doesn’t have much strength and it reaches the end of the bed. She has also now pulled the sheets off. The HCA joins them and tells the one-to-one carer, ‘We have run out of sheets, we need to use the blankets’. They get a blanket and tuck her into the bed.

A little later the woman cries out, ‘I have wet the bed! I forgot!’ She sounds distressed.

The one-to-one carer responds, ‘Do you want to go for a number 2?’

She draws the curtains around the bed.

Site G, ward 14, day 29

Here, as this man walks unsteadily from the bedside, the team unsurprisingly focus on his immediate risk of falling; however, this means that the team do not recognise his need for independence and his underlying continence need. In addition, this is not easy for him to articulate this, and it takes him significant effort to walk independently and to express that he needs ‘a wee’:

A man (bed 15) comes into the corridor wearing hospital pyjamas and red socks, there is orange liquid smeared all over his face and top [orange juice or soup?] and he is walking very unsteadily in the corridor. The senior nurse is following him, ‘Do you want a wash?’ And the HCA with her pulls the visitor seat out into the hall in front of him [they are clearly worried he will fall] and he pushes it away.

He responds: ‘I don’t want any of your help!’

The team try to guide him back to the bay, but he looks at me though the glass and I say ‘Hello’. He walks towards me and the team. She tries to hold him and guide him back. He repeats, ‘I don’t want none of your help!’

I say ‘Hello’, and he is very unsteady and clinging onto the door frame to the day room and says to me, ‘I want to walk by myself’.

I say, ‘Of course, please join me’. He unsteadily and slowly sits down in one of the chairs opposite and I ask him how he is.

He tells me, ‘I would love it if they had asked me!’ He leans over and holds my hand and says, ‘I need a wee’.

I say, ‘I will get the team to help you’. I inform the nurse at the mobile workstation and ask her. She joins him and directs him to the bathroom in the corridor. She tries to hold him, but he pushes her away and gets quite frustrated when the team tries to hold his arm. She asks if he wants his frame. He says no to the frame. As he walks unsteadily, he gets halfway to the bathroom and stops, ‘I am doing it I am weeing’. He stands still. He doesn’t move but looks very alarmed.

He has a large pad on [wrap-around nappy style], which can be seen underneath his pyjamas. She waits, then leads him back to the bed and gets a plastic apron and closes the curtains.

Site H, ward 16, day 1

However, there were also examples of an embodied communication of need being recognised by ward staff. Here, a one-to-one agency HCA is walking with a person living with dementia. As they walk along the ward corridor, the patient holds her sides and fiddles with her waistband and, in response to this, the agency HCA asks whether or not she has a continence need and, instead, she reports pain:

The woman living with dementia (in bed 4/5) is walking along the corridor with a one-to-one carer by her side who says to her ‘This way!’ and guides her back to her bedside. As she moves, she holds onto the sides of her stomach and tells me she is in pain. She fiddles with the waistband and the one-to-one carer asks her if she wants to go to the bathroom, ‘Do you need the toilet?’

‘No!’ she is clearly irritated at being followed by the HCA.

A little later she stands at the medication trolley with the nurse as she does the medication round and says she is in a lot of pain holding her stomach, she does an extremely loud fart, which reverberates across the bay. She turns and points at me and exclaims to the room ‘she did it!’ We look at each other across the bay and laugh together.

Site G, ward 14, day 4 (bold text represents shouting)

In the example below, the HCA responds to a person becoming increasingly uncomfortable in her bed:

The woman in bed 2/6 is in bed, the side rails up.

She is a tiny figure with very white hair, wearing glasses. She is also wearing a cotton nightie covered in pretty blue sprigs of flowers. As she lies there, she starts to look increasingly uncomfortable. The HCA working in the bay sees this and heads over, ‘Are you OK?’

She replies: ‘I need a bedpan’.

The HCA immediately goes off the bay and gets one for her.

Site G, ward 14, day 19

A person living with dementia leaving the bed or bedside was almost always interpreted by ward staff as a risk to be managed. It was rare for staff to consider or investigate potential underlying reasons why a patient was repeatedly trying to climb over the side bars of the bed, trying to get out of the bed or the bedside chair, or pulling off their bed sheets. Instead, the ward team typically focused on the immediate behaviour, with the goal typically being to contain and reposition the patient in the bed or bedside chair. That these movements could (and often did) communicate urgent continence needs was often only recognised following a contracted pattern of staff repeatedly covering and repositioning in the bed, or returning a patient to the bedside or once the person had become incontinent.

Over time, we observed that these patterns repeated within and across these wards. A person living with dementia attempting to get up and stand was often found to be expressing an underlying and, eventually, urgent continence need. If unrecognised, this could transform into more entrenched patterns of conflict between a person and the ward team: the patient becomes distressed as they are constantly prevented from going to the toilet, whereas staff become frustrated by the management of what they perceive as behavioural features of the person’s dementia.

Pads as standard practice for people living with dementia

Disposable continence products were universally referred to by ward staff as ‘pads’ and discussed with and described to patients in this way. For example, explanations at the beside were typically limited to ‘We just need to check your pad’, ‘We need to change your pad’ and ‘Don’t worry, you’ve got a pad on’. However, what a pad is, what a pad does, how a pad works and if the person had ever worn a pad previously was never explained or discussed with PLWD during our observations.

The standardised strategies of care at the bedside were typically accompanied by standardised and restricted language, which often took the form of incongruous or contracted phrases to describe continence products, care routines and practices. There was an assumption that these phrases would be immediately understood by all in these wards. Here, we can see that these explanations were typically made using contracted language that did not fully describe what was happening or about to happen to the person, and was delivered in a slow, enunciated and loud institutional tone of voice:

A member of staff is walking through the ward waving a continence pad and says out loud to the patient at the bedside, ‘we are just going to put you in a pad’.

Site F, ward 12, day 1 (bold text represents shouting)

The taken-for-granted language in these routine statements, as above, was assumed to be easily recognised and understood by PLWD in these wards. On occasion, there were a small number variants, such as ‘I’m just going to check your pad’ followed by an (often swift) intimate examination:

In side room 5, a patient is lying on their bed. They are quiet but have been awake the entire shift just looking out into the corridor. Two nurses (including the nurse in charge of the ward) put on latex gloves and go into the room. As they do this one says to the other ‘I’ll get a fresh pad [points to a pile on the nearby trolley], there’s some over there’. Having already walked into the room, the nurse in charge announces, ‘Can I come in? Hello, can we change your pad?’ They close the door behind them.

Site H, ward 16, day 23

(There were routine and regular checks to see if continence pads were ‘wet’ or ‘dirty’ and needed changing, using touch to evaluate this, see Theme 4: ‘pad cultures’ – conflicting urgencies and continence containment for details.)

This limited repertoire of phrases and descriptions was used across all these sites, with repetition, increased volume and slow enunciation of the same phrase used in response to a person’s apparent failure to recognise this routine care. In Theme 5: impacts of continence care and ‘pad cultures’ on recognition of the person and understandings of dementia, we explore how this could mean that PLWD may not expect the intimate care this involved, which could lead to significant distress for many patients.

‘Pads’: a routine precautionary strategy

The widespread and everyday use of pads in the care of PLWD was often explained and rationalised by ward staff (in discussion with patients, families, us and each other when organising care) as a precautionary strategy that is used ‘just in case’ (i.e. as a ‘safeguard’ for all, including those recognised as continent, ‘mobile’ and ‘self-caring’). Of course, many PLWD in these wards did have continence and mobility issues. However, we found that the widespread use of pads was not limited to those with identified continence issues associated with their dementia or their admitting condition. Rather, there was an expectation that the wider timetabled routines of care would mean that continence urgency could not be prioritised by ward staff and, therefore, these technologies were viewed as providing essential safeguards to ensure containment, prevent ‘accidents’ or incontinent episodes during a shift and to support the smooth running of the work of these wards. This precautionary ‘just-in-case’ approach to continence care for PLWD was deeply embedded and pervasive in all of the wards observed in this study.

Here, the bay team discuss one of its patients living with dementia, who is routinely ‘dressed’ in continence ‘pads’ by the team, even though she can walk to and from the bathroom independently (we observed her doing this), describing this practice as a ‘safeguard’:

I speak to a RN [registered nurse] and a HCA about continence amongst the patients living with dementia. A6 is continent but the HCA says she is still placed in pads. The RN interjects and says she isn’t, and the HCA says she just now changed her pad in the toilet, and has put it on as ‘a safeguard’. RN criticizes this, asking the HCA, ‘what’s the point’, and describes how it is not encouraging independence.

Site F, ward 11, day 20

This example also demonstrates that ward staff recognised that this precautionary approach had wider implications for this person, could have an impact on opportunities for rehabilitation and could lead to deconditioning and reduced independence. Ward staff (i.e. nurses and HCAs) often reflected (across the sites) this viewpoint in our discussions about continence care; however, they also described feeling powerless in having any influence to change these approaches, viewing it as a direct consequence of wider institutional pressures.

Justifying the use of ‘pads’ as a safeguard for PLWD who were otherwise continent was a common rationale used by ward staff to support their routine use. Here, this example demonstrates that this reflects wider expectations and understandings of poor QoL and dependency as inevitable in the context of a diagnosis of dementia in these wards:

The woman in bed 2 is eating chocolate from a large box on her tray table. I speak to the HCA about her, who tells me that she has put a pad on ‘just in case’, but confirms she is continent. Have conversation with RN [registered nurse] and HCA about this patient and the RN says she wouldn’t want to live that long, and the HCA talks about how lovely she is for her age, ‘she does seem with it’, despite her admission and dementia, and ‘she knows where she is’.

Site F, ward 11, day 25

The use of pads in the care of PLWD was so embedded in these wards that they were used even when other, often multiple, continence technologies were already in place to support the person. In many ways, ‘pad cultures’ were the most visible sign of the containment approach to continence care in these wards.

Cultures of containment: wearing a ‘pad’ informed expectations that they could and should be used

This use of ‘pads’ as a precautionary strategy had real and significant consequences for PLWD. Once adopted as a ‘just-in-case’ strategy, the routine use of pads in the care of PLWD resulted in the maintenance of continence being deprioritised, and the precautionary strategy became an expectation that PLWD not only wear pads, but that they could and should use the pad. We found that this expectation was a feature of all these ward cultures, regardless of an individual’s continence, independence or preference.

11.35: Inside side room 6 the visitor is explaining to the one-to-one carer that her father doesn’t like the continence pads. He finds them uncomfortable and they are too tight. No action is taken.

Site H, ward 15 day 7

Of course, many PLWD (and older people) did have episodes of incontinence or were incontinent, and, indeed, we observed many people call for assistance too late (i.e. after they had used their continence pad). However, we found that the use of pads as standard care for PLWD contributed to ward cultures and expectations of patients (and we also saw some slippage in the assessment of the person and their capabilities, which could lead to a recognition of the person as ‘bedbound’). This was not just because pads were associated with incontinence, but also because, once this patient group were placed in them, this, together with the associated visibility of the ‘pad’ on the person ‘wearing’ them, established a widespread culture that expected and instructed PLWD to actively use these pads.

The communication of a continence need and a request to go to the toilet by a person living with dementia was often answered by ward staff with the commonly used phrases ‘You’ve got a pad on’, a signal for the patient to remain in bed and to use the ‘pad’. Here, a nurse (who is covering the bay and tells me she does not know these patients) supports a woman living with dementia to the bathroom. It is clear that this woman is both mobile and continent, although she is lacking confidence in walking without support to the bathroom. We can also see that she appears not to have been to this bathroom before and, in her repeated thanks to the HCA, her relief in being able to reach and use it. However, as this example shows, supporting a patient to the bathroom was unusual and can be questioned:

After being told to stay in her chair, the woman in bed 17 asks the nurse from bay B, who is covering for the regular nurse’s break, if she can go to the toilet. 17 is really appreciative of the nurse for helping her with this, ‘Thank you. Oh, you have a little room’. They open the toilet door and it is as if she has not seen this toilet before, even though it is located within the bay. ‘Is there a light?’ The nurse turns the lights on for her, ‘Oh, thank you. Thank you so much’. The nurse explains to her that ‘When you are finished, pull the red one and I’ll come back’, pointing out the buzzer. 17 doesn’t seem to understand this. She responds, ‘Will you stay here and help me back, I’m almost finished’. ‘OK’, says the nurse and stays in the toilet with her. 17 finishes and they walk back to her bedside. As the nurse turns to leave, the other nurse returns from her break, so she lets her know 17 has just been to the toilet. The returning nurse responds questioning this, ‘Why? She’s got a pad on’.

Site H, ward 16, day 11

In all wards, in response to a person living with dementia asking for continence care, we identified staff reminding the person that they were wearing a pad and explicitly instructing them to use the pad. Later in the day, the same patient (as above) clearly states ‘I need the toilet’ and in response was reminded that she was wearing a pad and directed to use it, ‘You have a pad on, you can just go there’. This is extremely confusing for this woman who appears to interpret this as removing her pad and to use the bedside chair as a commode, which leads to high levels of distress for both the person and the team caring for her:

The woman in bed 17 gets up and moves to her bedside chair but remains standing up. She announces, ‘I need the toilet’, to which the response of the one-to-one HCA (who is closely monitoring this patient and the person in the bed next to it, bed 16) is to remind her that she has a pad on. This woman (bed 17) responds to this by reaching down and beginning to take the pad off. The one-to-one HCA tells her to pull it back up and again reminds her, ‘You have a pad on, you can just go there’. She (the woman in bed 17) appears to be confused by this and she again tries to take the pad off and sits on the bedside chair. The other team member in the bay suddenly shouts across the bay, ‘Wait a minute, that’s not the toilet! Wait a minute!’ She (the woman in bed 17) looks confused and says, ‘I can’t wait I need to go . . . I’m going to do it here’. The member of staff now keeps asking her to ‘sit down’.

Site H, ward 15, day 11

The routine use of ‘pads’ appeared to be informed by a number of institutional expectations and pressures powerfully felt by ward staff, particularly the expected pace of the organisation and delivery of bedside care for this patient group. As we can see here, ward staff emphasise to this person living with dementia that she must use the pad or ‘wait’ (i.e. her urgency must fit the timetables of wider care delivery that the team are working to) and they repeatedly instruct her to ‘sit down’, further emphasising the risks to the person of independently leaving the bed or bedside to reach the bathroom. It also appears to reflect a belief that it is possible to ‘use’ a pad, particularly for PLWD.

The families we spoke to often described their family member living with dementia experiencing these strategies of continence care during their admission. Here, two daughters join me in the day room and share their concerns about their parent’s continence care and the effects of the reliance on ‘pads’, the strategies of containment and the impacts for the person:

Dad [patient in bed 16 who is living with vascular dementia] gets agitated if he wants to go to the toilet or if his pad needs changing. I got here, there was a puddle in the bed so it hadn’t been changed in a while. I asked both nurses who said they were busy so I changed the sheets, stripped the bed, and put clean clothes on. When he gets sundowners he starts to swear. He was trying to get up and saying, ‘I am bursting for a piss, bursting for a piss’. I said to the nurse he wants to go to the toilet and she said, ‘He’s got a pad on!’ He doesn’t, it’s just for accidents, he has accidents, but he can walk to the bathroom! And we took him out to the bathroom the nurse said, ‘He can walk?’ Yes! They had been leaving him in bed and we got him up, it’s not good to be in bed and we walk him to the toilet. The nurse says, take him in a wheelchair, but no, he can walk. They think because they are in pads, they are toddlers and babies not adults. My brother does more, I am more squeamish, and he takes him to the toilet and changes his pad. But the nurse said, no, she will do it, but she was annoyed with him for doing it. She said to my dad ‘I am just going to change your nappy I am going to change your nappy’. That’s basic, that took all his dignity.

Daughter of 20 nods in agreement and tells us about her mum, ‘I could smell it, my mum can’t tell someone she needs changing. Oh my God, if I wasn’t here it could have been all day and until the night shift. I could smell it!’

Site H, ward 16, day 16

These ward cultures, which emphasise the organisation and delivery of timetabled bedside care and the strategies of ensuring patient safety and reducing risk, also appeared to constrain the power of staff to respond legitimately to urgent continence care needs, particularly if they involved supporting the person to leave the bedside, or promoting independence and continence.

These ward cultures emphasised pace, efficiency and busyness (as seen in the many examples above), with the need to maintain the daily organisational timetables of bedside care powerfully felt, creating a palpable source of tension among nursing and care staff. The fear and underlying anxiety of ‘falling behind’ during shifts was frequently discussed. Conversely, the sense of meeting or being ahead of the timetables or having time for a break was notable and a sign of a ‘quiet’ day (although to vocalise this was to ‘jinx’ it).

Continence care that supported the independence of PLWD was recognised by staff across these wards as requiring skilled interactional work, but also as a form of care that requires significant time and, in some cases, many members of staff. When unscheduled and driven by a person’s urgent needs, continence care was often perceived as taking ‘too long’ and a source of delay that could have an impact on other routinised timetabled aspects of bedside care. This shaped the dominant culture of continence care that we observed across all wards and sites (i.e. the ‘pad cultures’). Although pads would be rationalised as being used ‘just in case’, our observations revealed that the use of pads was an embedded practice in these wards, not only in response to incontinence in the person or as an (in)continence tool, but to support the wider organisation, management and delivery of the ward timetables of care that were institutionally mandated. These strategies were also reflected in the explanations and rationalisations staff provided to PLWD at the bedside and to their families. The standard use of pads removed the urgency of continence care, shifting the delivery of this care from one that interrupts these timetables to one that can fit within it. The use of pads transforms the continence care of PLWD into something that was perceived by staff as requiring a relatively quick and efficient set of care tasks contained at the bedside, preventing ward teams from ‘falling behind’ with the wider timetabled care that was perceived as more critical or closely monitored by the institution.

The pace of (expected and perceived) care at the bedside meant that the independence and autonomy of PLWD could become a reduced priority. Where staff perceived that they were ‘short’ (i.e. understaffed) or were ‘falling behind’ with the wider timetables of bedside care, the use of pads became prioritised over patient independence. At these junctures in shifts (we found that this typically occurred at some point during almost every shift), patterns of prompting and the procedures of assisting a person living with dementia to use a bathroom could become viewed as taking too long and perceived as clashing with and potentially delaying other institutionally mandated timetabled tasks of care (e.g. the timetables of other teams, including the arrival of medical teams or mealtime deliveries). Therefore, although staff in these wards discussed and recognised the importance of prompting patients to go to the toilet, particularly before or after a meal, in practice, these pad cultures dominated.

These pad cultures also created their own new routines and rituals in the wards, such as regular ‘pad rounds’ and ‘pad checks’ in which ward staff (typically HCAs) ‘checked’ on and prompted continence at points during the shift. These routines involved ward staff asking people at each bedside, in turn, about their continence needs. If a person was unable to respond verbally, then this could involve staff relying on detecting the smell of urine or faeces on the person, or by carrying out a physical examination at the bedside by swiftly lifting sheets, hospital gowns, robes and clothes and using touch to check if a person’s pad had been used. These pad checks would be carried out, in turn, for each person in a bay or carried out as part of other task-based bedside care throughout shifts, although this could also be less systematic, and varied depending on the individual staff and team approaches to bedside care and the pace, space and pressures on the timetables. In this way, continence care could be transformed and reduced to containment practices and the ‘checking’ and replacing of soiled or wet pads as part of other scheduled activities during a shift.

Conflicting urgencies and fear of falling behind

In wards, supporting independence and continence for PLWD was recognised as requiring expertise, as well as considerable time and resources (as with the person living with dementia in the example above). As we have described, the nurses and HCAs who supported a patient living with dementia to the toilet almost always stayed in or near the toilet, or in the bay, until that patient needed to be supported back to the bedside, where further personal care may be needed and clothing and/or bed sheets replaced. Supporting a person living with dementia from a bed or bedside chair onto a commode also involved a similar intensity of care work, which was generally carried out behind the curtain. Supporting independent or assisted continence typically took between 5 and 10 minutes, but could frequently take far longer, and included steps that often required additional support from the bay or wider ward team [sometimes requiring a ‘double’ of two members of staff in the team, requiring a ‘floating’ member of staff working across the ward (or ‘on the floor’) or, more commonly, taking staff away from their own bays and patients]. Such supportive care was observable throughout the shifts when this was a timetabled aspect of ward care, such as at the start of the morning handover or as part of the pre-breakfast personal care routines:

The HCA on bay 3 puts on a plastic disposable apron to go into the toilet to help the patient in there. It’s the woman from bed 16. ‘Why do you want to hit me?’ says the HCA loudly. She comes out and asks other staff for help, ‘She’s so aggressive’. As she does this, 16 dashes out of the toilet. She has a stumbling, lurching walk. Her hospital gown is pulled up high and she is holding up her large continence pad. The team try to talk her into going back into the toilet and tell her she is ‘showing herself’ to the unit and that men are going to walk past and ‘will see her’. It is only then that she turns around, before locking her legs and insisting that she wants to go back to her bed. They tell her that she needs to clean up, and manage to walk her back to into the toilet. The nurse comes out of the toilet and sighs, she is clearly tired at the end of the night shift, but goes immediately to support another patient who is calling out for help. Suddenly, the instructions change – previously the staff just wanted to get this woman (16) to go back into the toilet and now they are struggling to get her out of it. The HCA tries to reason with her and offer incentives, ‘Your breakfast is getting cold’, ‘Come and have your breakfast’. ‘Come out of there. Please come out of there’. At the same time the senior nurse helps the woman (bed 12) who is using a frame to walk from the bedside, he is directing her towards the toilet, she is very slow and he is being very patient. She is really struggling to use the frame, and looks terrified, and this senior nurse is supporting, holding the frame in front of her, but she starts to look distressed and the nurse calls out for a chair. The clerk at the nursing station tries to bring one but can’t get the chair brakes off and there is no one free to help and the clerk eventually forces the chair against brakes onto the bay, making a huge screeching sound. But she (12) then refuses to get on the chair, and continues to shuffle with the frame towards the toilet. She is very slow and shaky, but at the same time desperate to get there, and vocal about her worry and fear of ‘going’ before she gets there. The rear heel of her walking frame gets caught on the open toilet door, it takes a few minutes and I am convinced she is going to fall as they edge the frame around the door. She (12) turns to the nurse and says, ‘It’s difficult when you don’t know your way around!’ The nurse stays with her throughout and this takes around 10 minutes from bed to bowl.

Site H, ward 15, day 25

Continence care was also an important opportunity for staff to provide wider supportive care and comfort to the person, which could require more time than expected to see the person and to support their wider needs. Here, the HCA prompts support to reach the bathroom, despite this patient’s hesitancy, and, at the same time, she also responds to her wider needs, with a focus on her painful skin:

The woman in bed 8 asks the HCA, ‘Can I get out of bed a bit more today?’

The HCA replies, ‘Yes of course. Toilet first?’

‘We can try!’

The HCA takes the commode to her and drops the bed, puts fresh red hospital socks on her feet and helps her to sit and to move across to the commode. She is wearing a white gown [here they have the institutional logo printed across them] and has a large wrap-around pad on. They discuss how to swing her legs around from the bed because there are lots of skin breaks on her legs and she complains about her back being sore. The nurse gets some cream and rubs it across her back, working it into her skin.

This woman looks relieved: ‘Thank you nurse that’s much better’.

The HCA helps her onto the commode and takes her in to the bathroom, leaves her and returns to the bedside to make the bed and puts pillows on the bedside chair. She then heads back to the bathroom and wheels this woman out on the commode, locks it in place at the bedside and helps her out. ‘Have you got me?’

‘Yes.’

‘OK, lovely’.

Once she is in the bedside chair, the HCA puts pillows behind her back for support, arranges her gown straight and over her knees, and moves the bedside trolley next to her and in reach.

Site H, ward 16, day 7

However, outside these points in the organisation of the acute ward where continence was prioritised, the time required to support a person living with dementia from the bedside to the bathroom and back was often seen as significant, as taking too long and as interrupting the other timetabled demands. Continence care could then become deprioritised and overshadowed by pad cultures that enabled staff to focus on fulfilling the timetabled work of the ward, including the recordable and quantifiable aspects of their work. We had many discussions with ward staff about how they managed the timetabled routines of bedside care and the urgency of continence care needs for PLWD. One HCA described constant judgements on what to prioritise during a shift, highlighting the centrality of the observation routines:

There are six people in this bay, that’s a lot of attention, everyone needs the toilet so observation [timetabled rounds at each bedside that must be recorded at set points in each shift] or the toilet – or observation and wipe it up afterwards. I can only do what I can do. If I can do it, I do it, but you can’t do it all on your own. Some days I have 10 patients on my own.

Site G, ward 15, day 10

For ward staff, as we see in the example above, the organisational pressures that emphasise speed and pace resulted in concerns about ‘falling behind’ with the timetables of routine bedside care (e.g. observations, medications and mealtimes) and other routines of care that must be completed and recorded to meet internal and external institutional timetables, and the associated recording practices. Here, a HCA from a different site describes the recording of the timetabled observations (e.g. blood pressure, heart rate, temperature) as the institutional priorities and, as such, more pressing than other aspects of bedside care. Note how these institutional priorities trump urgent patient continence care needs:

We discuss continence care in the ward and the HCA tells me, ‘It’s important to stay in the zone, do the routine stuff and have tunnel vision, no interruptions to the routine observations, observations are more important, the priority, more important than someone sitting in poop. The happiest most productive nurses are the ones who stay in the zone. If anything happens to that patient then they will ask why weren’t the observations done, so the person sitting in poop has to wait, but at the same time if they sit in it for too long then they have skin issues and that comes up, but you only have two hands’.

Site H, ward 16, day 14

This could lead to staff carrying out these timetabled observations during continence care and over-riding concerns about the impact on (and potential immediate distress of) the individual person living with dementia:

2/5 is crying out. I thought the team were with her but no, she is by herself behind the curtain drawn around her bedside. The HCA goes over to her and asks her, ‘Do you want to wee?’

Another HCA joins them and repeats this: ‘Do you want to wee?’

The first HCA comes back with gloves on and a bedpan in her hands (it looks like a very large plastic shovel with a cardboard disposable insert fitted within it) and goes behind the curtain. This HCA tells her, ‘See if you can go, see if you can do a wee. I will just do your blood pressure while you are here’. She wheels the mobile BP [blood pressure] monitor in: ‘Which arm did you hurt?’

When they are finished this woman is lying flat in the bed, tucked into the bed, and looks calmer. The side rails are also up on the bed.

Site G, ward 14, day 7

These organisational pressures could inform cultures of continence care, which would mean that prompting and supporting independence and use of bathrooms become limited and withdrawn as non-essential, whereas continence pads (and bedside continence care) come to be relied on to ensure containment. Therefore, we regularly observed a team carry out fast-paced bedside care in a bay for 2–5 hours without seeing a single patient living with dementia leave the bedside and go to the toilet, including before and after mealtimes and drink rounds:

On bay A the man in bed 10 is up walking from the toilet to his bedside chair. Only the patients on this bay (younger, no dementia) have been up to go to the toilet during today’s observations.

Site H, ward 15, day 21

I stand between the nurses’ station and the toilet in the corridor and throughout the time I am here (9.30–11.30) no-one has used this toilet. It is the only one for the eight women in bays 3 and 4 opposite. This seems like a long time with no visits to the bathroom.

Site G, ward 13, day 1

This was associated with staff’s view that prompting PLWD to walk to the bathroom was possible during ‘quiet’ moments in the ward schedule only. However, quiet moments were rarely identified and acted on, and pad cultures allowed patients to be left while ward staff used these times to focus on the next timetabled task (or the required updating of patient records).

Containment, prompting and the prioritisation of urgent and visible continence care

Ward teams employed a range of strategies to manage their workloads and to try to keep pace with the expected timetables of care, including, prominently, continence care. If a ward team believed it was falling behind schedule, prompting independence was reduced. Calls for the toilet that were difficult for staff to respond to were replaced with reminders to patients of both the competing demands of the team’s workload and the continence technology available. Continence care that supported independence was replaced with containment.

Strategies of prompting

Toileting was regularly prompted at points across shifts, with prompting typically timed (informally) to support the wider organisation and delivery of routine bedside care and external institutional schedules entering the wards, such as meal delivery or medical rounds, to continue uninterrupted. Prompting and encouraging toileting independence was, in practice, often sporadic rather than routine, readily stalled if staff perceived they might ‘fall behind’. This would also reduce opportunities to respond to urgent continence care needs. Here, the team reassure a visitor that the person ‘has been seen’; however, this means that they find it difficult to recognise his continence care needs as legitimate outside these points in the timetable:

A visitor on the bay goes over to the clerk at the main nurses’ station and says one of the patients has been calling out for a nurse for a while. In response, the clerk says a nurse ‘has seen him’, but the visitor challenges this, saying the patient is uncomfortable and nobody has seen him. An argument of sorts starts, with the visitor adamant no nurse has been and that a nurse is needed, and the clerk saying the nurse has already been and will be back again soon. There hasn’t been a nurse on this bay for some time. ‘He’s not comfortable’ says the visitor, with an emphasis on urgency missing from staff interpretations of the situation. A nurse passing by says she will ‘come and see him next’.

Site H, ward 15, day 24

In discussions about continence care, ward staff typically talked about these strategies of prompting and continence promotion, but also the competing realities of the expected pace of care, the urgent needs of their patients and their fear of falling behind. Here, a nurse exemplifies this everyday challenge:

We go to all patients every 2–3 hours and if continent we will ask them if they want to go to the toilet, if incontinent we will check that pad, we promote continence [ . . . ] but we can’t always do it, we have acutely ill patients here, so we don’t always have the time to take them, the best time is when washing and dressing.

Site F, ward 11, day 21

Prompting was also typically timed to support the smooth delivery of the wider institutional systems and routines. This included organisational demands, such as staff clinical meetings and board rounds, and the schedules of specialisms, services and teams external to these wards, which were typically prioritised over the continence needs of PLWD. Here, the competing timetable of the external audiology service is explicitly prioritised over the personal and continence care needs of this person:

The man from C bay (C1) passes in the hall, he wears a hospital gown and is using a frame to walk to the bathroom and we smile to each other as he passes by. He later returns and looks a bit uncertain and I ask him if he is OK. He tells me, ‘I need a pad and a wash’. His pad is falling off him. It looks uncomfortably large and he is exposed because the hospital gown doesn’t cover his back. I go and find the nurse for this bay and tell her and she tells me he can’t [wash] yet because he needs to go to audiology. She goes over to him. He is now back in the bay sitting in the chair next to his bed. ‘I will get you a pad but you are going to audiology first’.

Site F, ward 12, day 5

The external timetabled order of food delivery could also conflict with the urgency of a patient’s continence care needs. Here, the prioritisation of the mealtime and the hot lunch (as with the schedule of the audiology department above) meant that ward staff appeared unable to recognise the urgency of the person’s need or the unpleasantness of this for the person:

A man in pale checked pyjamas walks gingerly and slowly down the corridor and he asks me where the bathroom is. I point him in the right direction. He is directly at the entrance to the bathroom so as I show him, he turns and goes in. When he comes out and heads down the corridor to the bay, I can see his pyjama bottoms are quite stained at the back. He does seem to be walking quite uncomfortably back to the ward. The nurse joins him and guides him back. She notices the stain but does not say anything [. . .]

Later he goes to the bathroom and the stain on the back of his pyjama bottoms is big. It’s definitely a large patch of faeces.

The same nurse sees the patch and leads him to the bedside: ‘Your food is here’.

[Later, after lunch, I can see the curtain is drawn and she is helping him change.]

Site F, ward 12, day 27

When ward staff attempted to fit the urgent continence needs of a person living with dementia into the timetabled order of bedside care, for whatever reason, this could lead to significant patient distress. Here, a distressed patient becomes viewed as requiring high levels of support that cannot be met by this ward, even when this shift is described by the nurse in charge as ‘well staffed’. Ward staff were constantly managing a number of conflicting organisational demands and patient care needs. In this case, compliance with the institutionally mandated recording practices is prioritised, with this person’s continence care needs managed through a strategy of ‘hourly checks’, with the nurse in charge also reassuring this patient. However, staff do not recognise the distress that this approach and the associated delays cause to patients:

As I enter the ward the woman (in bed 2/1) calls me over to her bedside. She seems very distressed as she holds her arms out to me: ‘Help me’. I go over to her and she tells me, ‘I want to wee, I am desperate, ooh, I am going to wee now, it is too late!’ She is wide eyed and looks extremely distressed as though she has been desperately holding on for a long time. I say I will find the nurse who is looking after her. She replies, ‘Please! I need the commode’.

I go over to the nurses’ station. The nurse who is writing updates in the medical notes, her head down, focused on completing the patient records, is her nurse, and I tell her about her patient, emphasising the urgency. She remains sitting at the desk and tells me, ‘She is very, very confused, we have dipped her urine, she came in with a fall so completely confused. We keep trying her on the commode but she won’t sit, she says it’s uncomfortable and she can’t go, so we are checking on her hourly. We are trying to satisfy her with something, but it’s constant, you can’t reply all the time to everything. You need to find a strategy for all the patients, we tried her on the bedpan but she won’t stay, you have to find a strategy that will help’.

As we talk, the nurse in charge of the ward passes and this woman also calls out to her, ‘Help me!’ She still sounds very distressed. The nurse in charge goes over to her and the nurse from that bay joins her. The nurse in charge tells this patient, ‘We are looking after you, I am going off shift now, you will soon feel better. She also tells her name and reassures her she is OK – she has an incredibly gentle manner.

However, when she leaves, this woman continues to call out her distress, ‘Please help me, please help me . . . ’

I follow the nurse in charge into the staff room as she leaves to ask her about this patient and the strategy. She tells me, ‘We are well staffed, so it’s easier to not get behind, but that’s going to change, I am going off I am on an early only (she gets her bag and coat) and they are moving (another very experienced nurse to cover another ward) now, so it’s going to get more chaotic from now on’.

I return to the ward and the woman is still distressed, it is affecting both me and also the other ladies in this bay, we are all starting to feel anxious for her.

Site G, ward 14, day 21

Importantly, as the continence needs of this person do not fit the routines of the wider ward, her behaviour and her high levels of distress become viewed as a feature of her dementia and of being ‘confused’. We will explore the impacts of continence care on understandings of ‘behaviour’ in Theme 5: impacts of continence care and ‘pad cultures’ on recognition of the person and understandings of dementia.

Prompted continence care as a ‘disturbance’ to the older person/patient

In these wards, the widespread culture of using pads as a precautionary strategy was associated with reduced prompting to support independent continence care for this patient group. Acute wards are typically fast-paced spaces, with an expectation of a sustained tempo (as a demonstration of efficiency) in the organisation and delivery of care within them. By contrast, for patients these wards are unstimulating places, particularly for PLWD, who did not typically have access to newspapers, books, television or radio. Although some wards had communal television screens (often fixed to a wall and tuned permanently to the same channel) or pay-per-view screens at the bedside, these were often inaccessible (as bedside screens were typically too complex to use). Few patients had devices or screens available for personal use in these wards. As a result, PLWD often sat in the bedside chair or in their bed for extended periods, with no stimulation. This produced a pervading sense of ennui, of patients left to wait and of sitting in ‘pads’:

It is so quiet, but even when there are empty beds and little to do, the patients admitted with dementia are dressed in continence pads and just left to sit unsupported in their beds. I have seen no prompting to go to the toilet. Fewer patients and fewer tasks do not seem translate to more engagement or more care, just to a quieter day. The team are either writing up notes at the nurses station or are not visible.

Site H, ward 16, day 24

This lack of stimulation meant that PLWD often appeared sleepy or drowsy and moved less, which, in turn, meant that individuals were less aware than usual of their immediate bodily needs (primarily continence, but also a wider range of care needs, e.g. hydration). At the same time, their immobility (which could be viewed as a feature of dementia) meant that these individuals were often conceptualised by the ward team as not needing prompted continence care, particularly in the context of the faster pace of care work on these wards. Combined with the precautionary strategy of pad use, this meant that prompting toileting and independence were often judged as non-essential or something that could be delayed for this patient group. This could inform other aspects of personal care where, in the fast pace of timetabled care work, PLWD who were ‘quiet’ could often be judged by ward staff (and other teams and services entering these wards) as not having obvious urgent support or care needs:

The patients in beds 19, 21 and 22 have all been on the unit for over a week. They seem to be bored, almost institutionalised, and are just sitting on their beds, propped up by pillows, staring forward blankly. 19 and 22 are just waiting for social workers to arrange discharge and safeguarding placements. This seems to take forever, both cleared to go home but seemingly no urgency for this.

Site H, ward 15, day 16

This could extend to recognition of intense faecal smells. Although this was a familiar and everyday odour in these wards, it was also masked by and mingled with the overpowering disinfectant smell of the institution, contributing to the everyday smell that ward staff were habituated to. It was customary for staff to comment on and note particularly intense and powerful odour, and, although this odour could alert staff to prioritise a patient and their continence needs, its source was not always identified until bed covers were disturbed for other routine care:

On bay 2 the patient in bed 14 is hidden behind the curtains. The nurse is at the bedside for what appears to be personal care, including washing and changing clothes and sheets. She admonishes this woman ‘Less of that’, who grumbles as the nurse continues, ‘We need to change you . . . your bed smells of urine . . . it doesn’t look good . . .’

Site H, ward 15, day 5

Therefore, the needs of PLWD could appear less visible to staff. In addition, ward and other external and auxiliary staff also appeared less comfortable approaching immobile older patients, with prompting potentially viewed as inappropriately ‘disturbing’ individuals appearing less alert. As a result, this could further distance the person living with dementia from social stimulation and care.

Strategies of containment

The ‘pad cultures’ we observed could create new, additional and unplanned work of their own. As continence ‘pads’ are designed to contain urine and faecal matter, it was common for staff to consider that ‘pads’ worked as a containment technology and that PLWD could remain in soiled or wet pads until staff judged that there was sufficient space in the timetables of care and the competing needs of other patients, as this was when staff felt able and permitted to attend the bedside and deliver continence care. However, when continence was not contained and became visible or noticeable on the body or at the bedside, this was recognised by all as requiring urgent and prompt care.

Our observations suggested that, despite their intended design, ‘pads’ rarely functioned as a containment technology for long, creating problems and work of their own. ‘Waste’ from continence ‘pads’ (and other technologies and equipment) that became visible in these wards was typically prioritised as urgent when recognised. Visible waste and ‘accidents’ were not tolerated in these wards, and were viewed as highly disturbing by staff in and entering these wards. Timetables would be interrupted and the cleaning of patients, surfaces and floors would be prioritised:

Bay 1 smells really strongly of faeces. I look in and there is a trail of faeces leading from the corridor along the floor back to bed 8. The NIC [Nurse in Charge] sees me looking at it and apologises about the mess. Two HCAs are crouched on the floor wiping it up with antibac [antibacterial] wipes. They tell me nobody had noticed until the ward sister slipped over in it.

Site H, ward 15, day 2

Such incidents often showed the failings of retroactive pad culture: changing a full set of bed clothes as well as cleaning a patient and changing their clothing, which was typically necessary, is generally more resource intensive for staff and distressing to patients (both immediately and in the longer term) than proactively supporting patient continence and independence. These impacts were, however, unrecognised (or unattributed) by ward teams. Rarely was there recognition of the distress experienced by a patient wearing a soiled pad, nor were immediate needs addressed with any sense of urgency or considering the practical implications of not doing so: that a person who had ‘used’ their pad would usually need urgent support with personal care.

The emphasis placed on the use of pads as a precautionary strategy of containment meant that, in these wards, optimum organisational efficiency was believed to be achieved when PLWD (and older people in these wards) were wearing pads and contained in bed and at the bedside. Here, the ward team were caring for a group of PLWD who were all wearing ‘pads’. The key focus of their work during this shift involved a strategy of containing these patients in their beds. In comparison with many shifts observed, this is an average team (i.e. one nurse to nine patients and one HCA to 13 patients); however, the demands of timetabled routine (perceived and expected) care and the support needs of this patient cohort meant that there appeared to be no potential for the team to prioritise care strategies that supported continence or independence more widely:

The nurse from bay 3 goes into bay 4, talking in whispers to the one-to-one agency HCA before shutting the door behind quietly. Two doctors in the corridor are preparing to go into the bay to see the patient in bed 21. They also repeat these actions, quietly closing the doors behind them. The nurse from bay 3 now seems primarily occupied with picking Elvis songs from YouTube [YouTube, LLC, San Bruno, CA, USA] to make sure the man in bed 15, (who is wearing a pad and had an additional large continence mat underneath him) stays in bed. The job of the one-to-one carer on bay 4 seems to be to simply keep the patients in bed and asleep, while the nurse is away from the bay. Another nurse is just trying to keep patient 14 at her bedside. Each staff member is on differing bays to the ones they were assigned at handover, covering for other staff, and concerned chiefly with containing individual patients at the bedside. There is little visible medical or personal care happening.

Site H, ward 15, day 17

The use of ‘pads’ in the care of PLWD, and the expectation of their use, would typically result in the patients needing support to ensure hygiene and cleanliness. These containment technologies regularly failed in their primary purpose (i.e. pads leak, smell and can damage skin), requiring significant personal care, including support with undressing, washing and changing, and a change of sheets. For staff, this also involved repeated trips to linen stores and sluice rooms, which were often located far from the patient’s room or bay. Therefore, the use of ‘pads’ often required care that was far more personally invasive and distressing than supporting the patient to the toilet:

The woman in bed 12 calls out, telling the team her pad needs changing, and the nurse and HCA go to her bedside and together decide that ‘the whole bed needs doing’. I wonder, are the pads ever effective? It is still tough to observe the bays today, everything is blocked by curtains. This woman’s (bed 12) visitor first reported she needed the toilet a long time ago. The visitor is still in the day room waiting.

Site H, ward 15, day 28

Prioritising the management of ‘dirty’ and ‘wet’ bodies

Judgements about the relative urgency of continence care typically emphasised to patients and the wider ward the importance of cleanliness and of managing ‘dirty’ and ‘wet’ bodies, beds and surfaces in the timetables of care. This organisational focus on responding to ‘dirty’ or ‘wet’ bodies (as with the urgency of responses to visible waste or ‘accidents’ described earlier) meant that other aspects of continence needs that are of importance to PLWD were hard for ward staff to recognise and respond to. Here, this patient clearly and repeatedly tells the team and the wider ward that she is ‘sore’ and needs barrier cream applied. However, because she has repeatedly been assessed as ‘dry’, it takes time for the ward team to recognise, understand and respond:

The woman in bed (4/6) calls me over with a movement of her hand and tells me, ‘Sore bottom, no cream, sore bottom, no cream . . . ’ repeating this.

I tell her the team are behind the curtain with another patient and I will let them know as soon as they come out. When they do I tell them, and the HCA draws the curtains around her and reports, ‘You are dry’. This is directed at this woman but also at me and the rest of the team. She comes out from the curtains and goes over to the nurse to discuss her: ‘I think she is clean but this is a constant issue, but I don’t have anyone to help me – she would need rolling, I’m new to this and it’s difficult’.

A bit later they meet again at this woman’s bedside and discuss the cream. They believe she has enough cream because it’s part of the cleansing wipes. They discuss whether this is the right type of cream for her or if it is enough.

Meanwhile this woman continues to plead with them: ‘Please nurse, nappy please . . . ’

The nurse tells her, ‘Don’t worry we will definitely do it’ [ . . . ]

Later during the medication round that day, she repeats her request, her body is now shaking: ‘Bottom sore’.

A nurse who can translate (this patient is of South Asian origin, although throughout she is clearly stating her needs in English) says, ‘She is happy for you to do it (give her the injection required during the medication round) but she wants cream on’. The nurse and HCA discuss and decide she needs extra cream: ‘I think she is used to having the cream on at home and we use the wipes so she is not used to it’. The nurse goes to get the cream and returns: ‘Here we go!’

The nurse turns to me: ‘The moisture cream is in the wipes, they are great, but she won’t be happy until we use this cream as well’. The nurse is very gently and sympathetic, and they both now have gloves and pinnies on and close the curtains, and as they do this they tell her again they have the cream.

Site G, ward 14, day 4

The distress of visible waste or ‘wet’ and ‘dirty’ bodies was also, unsurprisingly, a cause of great distress for families:

A couple come out of a side room (9) and see the nurse and they report, ‘She’s all wet’.

‘How did that happen?’

They add, ‘She’s just woken up and she’s wringing wet’.

‘OK we’ll be over to sort her out’. She asks other people in the team for help.

The family wait outside and the team head in and shut the door.

After a while the HCA is at the door, gloves on and brings out a red bag full of soiled linen, she talks to the family and they chat for a long time. She is lovely and friendly with the family.

Site F, ward 12, day 27

In bay 5–8, the one-to-one carer has been sitting and watching the room. The four women in the bay are all lying in bed and no one has moved all morning. The daughter of 8 arrives, she comes every day to care for her mum who is living with dementia. She comes out of the bay towards me looking incredibly distressed and she says to me in a low voice, ‘She is all wet’. The one-to-one carer and I join her at the bedside behind the curtain. The sheets that were covering her have been pulled back and the entire sheet and bed is completely soaking. The smell is overwhelming.

The one-to-one carer asks me to ‘watch the bay’ as she takes sheets in behind the curtain and offers to help the daughter who looks very unimpressed, but says yes. They are behind the screens together for a long time. When they are finished, the one-to-one carer drags a number of large heavy orange waste bags and linen bags out of the bay. The daughter washes the plastic wash bowl inside and out and then washes her hands, she looks very upset.

Site H, ward 16, day 20

The failure of containment strategies could also cause distress to ward staff. Here, a student nurse seeks support from a more experienced HCA:

An HCA heads over to the other more senior HCA in the team: ‘We need your help with [side room 3]’.

‘Why? Who is with them?’

She tells her, ‘It’s [the student nurse]. Diarrhoea it’s gone everywhere all over the floor and we need more pads’.

The student nurse joins them, she is looking very stressed, ‘We need more pads! Diarrhoea everywhere!’

The senior HCA: ‘Do we need to wash her?’

‘Yes’.

‘Get a bowl and towels and let’s start from scratch’.

The student nurse gets a bowl and towels and they head into the room, the HCA ahead. The student nurse looks scared, but able to face it with the HCA.

Site G, ward 14, day 11

The isolation and impacts of being responsible for continence care

A key feature of discussions with ward staff about continence care was their experience of it as a ‘heavy’ burden, continence care being described by all ward teams as ‘heavy work’, ‘heavy nursing’ and a ‘heavy load’, expressing the perceived dependency of the patients and the physically demanding nature of this care. Continence care for PLWD was also typically described by ward staff as ‘demanding’ and requiring ‘doubles’ (i.e. two members of staff at the bedside):

It’s lack of nursing care, lack of bedside care. Filling in forms rather than nursing, that’s the biggest change in the profession. They [patients] are very disabled, very demented, incontinent, it takes time and it’s heavy nursing, if you add all these together, it’s all about time.

Site H, ward 16, day 6

In our discussions with these teams, nurses typically focused on prioritising the timetabled care they were responsible for, particularly the completion of the medication rounds, viewing continence care as primarily the role of the HCAs. Here, I ask a nurse about the previous day shift, during which I observed her interrupting the medication round to respond to urgent care requests and to support her team in attending to those she describes as ‘heavy’ highly dependent patients and the unremitting ‘heavy load’ of providing continence care at the bedside (note that, in many sites, nurses wear red tabards, indicating ‘do not disturb’, during the medication round, although in practice disturbances do still occur):

Yes, the drug round there are the six rules you have to go through and, yes yesterday I wanted to change my name, there were too many calls! It’s so busy and the patients here are heavy so you need help. If there are not enough HCAs, we have to step up and wash and toilet on the ward but sometimes it doesn’t allow the nursing role to the gold standard. Toileting – it’s a heavy load.’

Site G, ward 14, day 25

The HCAs often described feeling abandoned and left on their own with the ‘heavy load’ responsibility of caring for bays of PLWD who needed highly supportive continence care:

Staffing for the past few days with [HCA colleague] has not been bad. But nurses are bad. We find we are on our own. We struggle with the heavy load. Everyone in bay 1 is very needy. They are calling for the toilets every 5 minutes. With commodes and pans I have just done five washes on my own with no help.

Site G, ward 13, day 13

I discuss the shift with a small group of HCAs during their short break. A HCA who looks exhausted (and not yet half-way through a 12-hour shift) describes her cohort of 10 patients (the majority living with dementia) as including four ‘doubles’ and three who need support at mealtimes:

We discuss the shift in the little break room.

I’ve done one double and three more doubles to do, I have done the rest on my own but then it will be lunchtime and I have three to feed.

She sounds exhausted. It is the lunch break and while everyone else eats she doesn’t eat or drink anything. She continues ‘I have 10 patients, six and three and a side room. Seven patients – six in the bay and one side too, it’s enough and it means the other three (in the next door six-bedded bay) get forgotten. One into 10 patients does not go! You need two’.

Yes that’s why they lose people, they don’t want to do it – but we old fogies we just crack on! Sometimes you get held up because there is no one to help you – I have two doubles to do but no one to help. I had one shift where I did the last wash at 7 p.m., I told the lady she was really patient.

Site G, ward 14, day 26

This also reflects the perceived status of continence care in these wards and in these teams. In the teams, higher status is defined by those whose role does not involve intimate continence care. Here, a ward clerk becomes agitated when she is required to leave her computer desk at the nurses’ station and visit a bedside. Likewise, the dementia specialist team also delegate this care to the HCA in the bay:

The ward clerk is now vigorously washing her hands at the sink next to me.

She tells me, ‘I’m keeping my head down. I have to engage. But I’m not wiping no one’s bum. You know what I mean? I have to engage with families. But I’m not here to wipe bums’ [ . . . ]

The [dementia specialist team] has been with a patient in this bay and as she leaves, she tells the HCA, ‘She now needs to go to the bathroom’.

The HCA takes a walking frame and heads to the bedside.

Site G, ward 14, day 13

Those outside the team entering the ward could identify and report when continence care or cleaning was required, but would not consider carrying this out themselves. Here, a member of a medical team enters the ward to examine a patient:

It has been silent during this night shift, the lighting is dimmed, and no one is around as I stand by the nurses’ station. Screaming has started to come from one of the bays. The locked door bangs open and some light enters from the hallway and a medic in scrubs strides in. We acknowledge each other and she says, ‘Interesting night here!’

As she heads into the bay to see the patient [bed 9] we both suddenly see there is faeces smeared all over the floor in the middle of the bay. It is unclear whose it is. After stepping around it to examine the patient she steps gingerly around it and says firmly to me, ‘There is faeces on the floor someone needs to clean it up’. She marches off. There are no other members of staff around or in view and she leaves the ward.

A little later the nurse in charge and an HCA are in and out, and both carefully step around it to reach the bedsides. It feels like we are all pretending it is not there. Eventually they identify some more near the sink and the HCA clears it all up.

Site H, ward 16, day 21 (night shift)

The isolation of decision-making around continence care, assessing who and what to prioritise against the demands of everyday timetabled care, meant that, for staff, exhaustion and burnout developed over shifts and rotations:

I chat to the nurse. She is sitting at the small nurses’ station by bay 3. There are two huge piles of folders on the desk. On the top of one is a further pile of fresh (but unpacked) continence pads. She is going through the folders and filling the bedside records within the files for both bays 3 and 4 and tells me, ‘I am trying to do everything but most of these patients need two [members of staff] so I have to go and find an HCA and then someone needs me and needs something and I just can’t do it all! It’s also so hot!’ (The heat in this ward is oppressive and a nurse fainted on the previous day shift). She goes to side room 4 and returns with a disposable bowl covered with a paper towel and heads to the sluice.

The HCA tells me, ‘I have the pad round to do, I have a loose routine in my head and when it goes like this you re-enter yourself (in the routine) at the next person you see . . . it’s like the patients don’t lose out too much because we run around like idiots, so in the long run we pay the price’.

As we talk, we look over to the nurse at the nurses’ station who is about to start the medication round and is adjusting some i.v. equipment. She doesn’t look well and the HCA calls over, ‘Are you OK?’.

She says she needs to sit down: ‘But I don’t have time!’.

‘I will get you some water’, and heads to the kitchen and gets her some water.

When she returns, she then decides between answering the phone and continence pads, looking from one to the other she chooses continence pads. She tells the student nurse to have a drink of water as well.

She opens the bedside curtains and wheels out a commode, the lid is balanced on the seat and there is tissue poking out. As she wheels it to the sluice room, she turns to me, ‘People don’t understand, but there is not enough of me, I haven’t stopped, I think it’s an alright day when everyone is OK, but not if someone is poorly’.

The nurse adds: ‘When you are doing the drug round and have three people who want to go to the toilet then what do you prioritise!’.

Site G, ward 14, day 16

Clothing, contagion and the recognition of ‘high dependency’

Although there was some variation, it was common practice for PLWD who were wearing pads (and this often extended to older patients) to also be dressed in hospital-issued institutional gowns (with ties at the back) and pyjamas in these acute wards. These items of clothing were typically ill-fitting and loose; they were also easily removed and replaced, which aided the use, checking and changing of ‘pads’ at the bedside.

Staff preferred patients to wear institutional gowns rather than their won day clothes, as this improved access to continence technologies. However, institutional gowns are another way in which (in)continence is highly visible in these wards, othering older patients, and particularly those living with dementia, from the general patient population. The everyday use of gowns was also a response to the routine failure of pads as a containment technology (i.e. soiled clothing and people running out of clean clothes brought in by family). Therefore, the requirements and failures of the pad technology itself are, as expected, normalised and prioritised. These practices could become applied to a wider group of older patients in a bay or a ward as they become viewed as equally high dependency:

Posters in the hall state – ‘[Hospital] is working to end PJ paralysis – get dressed, get up, get better, get moving’. All the patients in the ward are wearing hospital issue gowns and pyjamas and I have yet to see anyone wearing their own clothes other than a cardigan or jumper over the top of a gown. Only one person has left the bedside today and I have seen him get up and walk to the bathroom, the HCA tells me: ‘The only patient who is continent is 22, he is continent’.

Site H, ward 16, day 25

This institutional clothing also exposed the body, which meant that these ‘pads’ were highly visible. The wearing of these typically bulky continence products was readily apparent to everyone in these wards. The combination of ‘pads’ and institutional clothing was a marker that staff recognised PLWD as representing high-dependency patients. This could overshadow individuals and their capabilities:

I note that on the semi-public admissions board 11 of the 23 patients have a flower symbol (representing dementia) attached to them. The nurse in charge of the ward tells me: ‘95% of people on here all wear pads, it’s just an age thing, this is really a dementia ward, it’s general medicine, but it’s mainly people who have falls and dementia. Thursday we had four one-to-one carers because they were confused, frightened, want to leave, need to be watched. We wanted four but only got three’.

The HCA adds, ‘We have a new lady really poorly and scoring 8, she’s ever so confused, she had an accident all over the floor because she’s confused, but all of them are incontinent, every single one of them and we only have two nurses on so you can’t do a lot, because as soon as I have done the washes it’s time to turn them and do their pads’.

The woman in bay 3 (4) has been sitting in the bedside chair all morning. She is wearing a pink hospital gown with a white cardigan over the top and red hospital socks on her feet. She gets the walking frame by her bed and walks steadily across the bay to the bathroom opposite.

Site G, ward 14, day 5

Institutional clothing in hospital wards affects both the male and female body, is a significant feature of the presentation of the ageing body in these wards and has a powerful role in reinforcing understandings of PLWD.

This further reinforced to all in the ward that the use of pads was usual practice in the care of PLWD, that is the ‘ways things are done’ in these wards.

These ‘pad’ practices had significant consequences in these wards and at the bedside. We identified processes of contagion and spread in their use in the care of PLWD, the recognition and application of continence care, and the category of who was believed to be ‘incontinent’, of ‘reduced mobility’ or of ‘high dependency’ in these wards. The established routine care practices believed to be appropriate for one group (i.e. patients who had a formal classification or diagnosis of incontinence) could quickly become attached to a wider group of PLWD and older people in these wards.

This could be exacerbated by common practices of ‘zoning’ or ‘corralling’ patients who shared specific attributes (e.g. by assessments of dependency, condition or age) being placed together in these wards and bays. This often resulted in older people living with and without dementia being grouped side by side in bays and areas of these wards. Therefore, the routine organisational practices and delivery of bedside care believed to be appropriate for one group could quickly become recognised and applied as standard care for a larger and heterogeneous group of PLWD and older patients aged ≥ 65 years, but who were understood to be a homogeneous population with similar care needs in these wards.

We found that in these ‘high-dependency’ bays, all patients could become placed in continence pads, regardless of their continence status prior to and during their admission. Here, a nurse discusses continence assessments of patients in what is categorised as a ‘high-dependency’ bay only in the context of the wider capabilities and dependencies of her patients. The mobility of her patients, not being ‘mobile’ or ‘reduced mobility’, is central to her assessments and is associated with the expectation that wearing ‘pads’ was an essential feature of their bedside care:

Speak to the RN [registered nurse] on bay A. Reading from her hand-written handover notes she tells me about the patients (only asked about 3 and 4) on this bay. She tells me: ‘3 is usually mobile with assistance from a frame, but vastly reduced at the minute. 4 is really not well, has dementia but also blind, not mobile. 5 has reduced mobility and cognitive function, but the other patients are fine’. She is reluctant to discuss continence, talking around this with mobility. She did not confirm but suggests that 3, 4 and 5 are all wearing pads (I know that 3 is for certain as it has been visible).

Site F, ward 11, day 16

Importantly, continence cultures on the wards explicitly extended to the routine and standard practice of using ‘pads’ in the care of PLWD, even if they were continent. Here, a woman living with dementia was able (with some support) to use a frame to walk the short distance (approximately 3 metres) from her bedside to the toilet opposite the bay and back. Despite this, she is expected by the ward team to wear a continence ‘pad’ at all times. This was observable and highly visible to the wider ward through the open-backed hospital gowns that she and the other patients in this bay were wearing:

On bay 3 the woman in bed 17 is up and out of bed. As she goes to the toilet, 18 is still on the phone, and 16 is awake, looking across the bay towards bed 18. The nurses’ buzzer red light is on above the door of bay 3. The nurses have not seen this as they are talking in the corridor besides the nurses’ base and the huddle of computer trolleys. 17 opens the toilet door and calls for help. The HCA goes over to her and 17 tells her, ‘I got giddy when I stood up’. With the door open, the HCA helps her up from the toilet to her frame. 17 is then able to support herself walking back to her bedside chair. Through the back of her open hospital gown a large clean pad is visible, despite what seems obvious continence and mobility.

Site H, ward 15, day 16

It was also a widespread practice for a wider group of older patients to be placed in continence pads, reflecting their routine use in these wards. However, staff also recognised that this did not reflect best practice. Here, this senior ward nurse reflects a widely held view among staff in these wards that ‘we shouldn’t use them’ and describes this standard use of pads as something that she recognises as undesirable, but feels unable to change:

The nurse in charge arrives. She is very friendly and welcoming. We discuss and tell her about the study. She picks up on continence products: ‘I do the order but I tend to underorder the full continence pads because I hate them being used. We use them with the confused patients, the wrap-around nappies, but they shouldn’t use them. One woman came in confused and she woke up and found herself in a wrap-around nappy and she was very upset to find she had been put in this. It’s one of my bugbears’.

Site F, ward 11, day 1

Continence technologies also restrict the person in more subtle ways. Given their size and bulkiness, pads appeared difficult to walk in, hampering the patient’s ability to move. This could mean that patients who were previously independently mobile now need to request assistance to leave the bedside to walk short distances. In addition, patients often required support in their application and removal of pads, creating a new level of dependence. These impacts were recognised by staff:

In the break room discussing continence pads with the HCAs on a break. We talk about the large wrap-around ones and one of the HCAs says, ‘They are the last resort, they take away their liberty, it’s a choice you are taking away’.

Site F, ward 12, day 17

Understandings of behaviour: ‘wandering’

Attempts by PLWD to leave the bedside and walk could also be quickly understood by ward staff not as a trip to or a search for the toilet, but as ‘wandering’, a behaviour without purpose and potentially a feature of their dementia diagnosis. As we have described earlier (see Clothing, contagion and the recognition of ‘high dependency’), leaving the bedside was typically discouraged for PLWD and patients aged ≥ 65 years. In contrast, the small number of working-age people in these wards were typically able to walk around unrestricted, use the bathrooms and leave the wards unchallenged by staff.

We observed that ward staff would regularly return PLWD to the bedside and rarely considered that they could be leaving the bedside because they had urgent continence needs. This could sometimes result in patterns of the person being returned to their bedside (or reminded to remain in their bed or at the bedside) multiple times during a shift, which could cause anxiety and frustration for ward teams and increasing distress in the person, who was not able to communicate their needs in the way staff recognised or understood:

Handover is finishing. As staff come out into corridors, I notice the woman from bed 20 quite far down the corridor, walking with the frame. She is 97 and has delirium with suspected (but undiagnosed) dementia and is wearing a large nappy-style pad, which is visible through the material of her hospital gown. A one-to-one carer stands in front of her, saying loudly ‘no, this way’, pointing with her arm back to the bay, her arm thrust out and pointing straight ahead. She calls the patient ‘mama’, ‘no mama, this way’. She does not explain to this patient, just repeats this command. The patient mutters under her breath throughout, turns slightly and walks in the other direction, the one-to-one carer stops her, so she turns and walks to the nurses’ station, leaving her frame. She sits down on one of the chairs, then stands and repeatedly tries to climb up on to the desk to sit, while the HCA admonishes her, warning that she will fall. The phlebotomist approaches, and takes this woman’s bloods at the nurses’ station, the one-to-one carer continuing to call her ‘mama’ as she talks through the process and reassures her. The patient whimpers as bloods are taken, but she does not resist the process. Afterwards she says, ‘Oh my God’ before muttering incoherently again. The one-to-one carer says, ‘Come on, back to your bed’ and this time she gets up and goes with her. [ . . . ] The one-to-one is still with her, still addressing her as mama, and insisting she stays in her bed. The one-to-one sits with her back to her, updating the bedside records on a computer on a mobile stand at the foot of her bed.

Site H, ward 15, day 2 (bold text represents shouting)

In the instance above, the act of leaving the bedside and ‘wandering’ eventually leads to the patient’s needs being recognised and her being permitted to walk to the toilet. We observed how these cultures of recognition and responses to ‘wandering’ were deeply engrained. The act of physically leading a patient back to the bedside was usually also accompanied by the repeated use of contracted set phrases and commands including ‘sit down’, ‘leave things alone’, ‘stay’ in bed or ‘turn around’. This also demonstrates the restricted understandings of the needs of PLWD, rather than a recognition that these patterns could reflect underlying discomfort, urgency or distress for the person or simply a desire to walk.

Reactions to intimate care perceived as ‘challenging behaviour’

Distress at experiencing intimate continence care from strangers, often carried out in silence, could become quickly perceived as ‘aggression’. These responses could be understood by staff as the impacts of dementia, but also as a wilful disregard for the routines of continence care and essential care more widely in these wards.

Here, the team carry out routine pad checks at each bedside of a bay, in turn. When they reach the second bed, they inform the patient that they are going to ‘check’ her ‘bottom’. As they do this, they switch from providing reassurance and instructions to the patient to talking to each other about the patient, her continence and what care is required, as though she is not there. Intimate care is necessary, and, although discussed between these two staff members, is not explained to the patient, who is clearly unhappy with this procedure:

The team discuss (3/2) as they head to her bedside.

[They use her first name] ‘Shall we stand you? We came to check and make sure you are clean’. They draw the curtains. ‘Stand up for us [first name], we are going to check your bottom’. They discuss her as they get gloves and a fresh pad: ‘Will she be wet?’ And they head back behind the screen, saying to her, ‘Sorry darling you don’t like it’.

‘She was soiled yesterday, I think they are giving her laxatives, we will probably have to change her’.

‘Sit down for us now, well don’t, there you go’.

‘It’s definitely from the laxatives’.

‘Can you sit back in the chair for me?’

‘Aaah don’t put your hand in it’.

‘Get more wipes . . . ’

The HCA heads out taking a large folded pad out to the sluice.

Site F, ward 12, day 21

Although staff were often very reassuring during continence care, they were also limited by the restricted language used in the care of PLWD in these wards. Here, the nurse in charge, while delivering continence care to a patient with dementia, repeatedly reminds the patient that she is ‘in hospital,’ as a way to prepare her for this intimate care:

The nurse has been incredibly busy. She is the nurse in change and also leads care within this bay. She has been reassuring the woman in 2/1 intermittently all day as she passes her bed, talking to other families, bagging and lugging large bags of dirty laundry through the ward. She gets a plastic pinny and a pad and closes the curtains around 2/1. She is very reassuring and gentle in her tone as she approached the bedside: ‘You are in hospital, you are in hospital, we are not going anywhere’.

In the background the radio is playing, ‘Now I’ve had the time of my life, No, I never felt like this before, Yes I swear it’s the truth, And I owe it all to you . . . ’

I realise this is Dirty Dancing. As this plays, care continues behind the curtains, everyone is silent in the wider bay apart from a regular sound of snoring from the bedsides.

Site G, ward 14, day 12

Patterns of distress were notable during the routine bedside rounds of personal care, particularly when PLWD required staff to support personal and intimate continence care. Staff would typically focus on and describe this care as checking and changing the ‘pad’, which was often carried out using restricted language or in silence. However, this did not prepare the patients (most often female) for this intimate contact. This could result in responses to care from PLWD that ward staff could interpret as ‘aggression’ or ‘refusal’, which could, however, be defensive reactions to unexpected or unprompted intimate contact.

In the example below, a patient in her 90s, admitted with a diagnosis of dementia, was observed on a cohorted bay of older women, many of whom also had a diagnosis of dementia and/or delirium. The patient had been admitted to this bay for several days, receiving one-to-one supervision, which was imposed because of her ‘wandering’ (the patient was able to walk independently but was considered a fall risk) and her ‘aggression’, which included punching and scratching at staff. We repeatedly observed staff describing her as ‘aggressive’ during the timetabled rounds of continence and personal care. The example below describes an incident where this does not happen, and, in contrast to other observed personal care she had received, the communication used by the nurse throughout clearly lets this woman know step by step what is going to happen and what is happening to her:

With the woman in bed 16 the nurse continues to talk the patient through every step. She is being really clear and focusing on each individual part of the process. There is a real focus on keeping the patient calm and informed. ‘I’m going to wash your face’. ‘I’m going to wash your legs’. ‘No, no, you don’t want that. It’s rubbish’. ‘I’m going to have to change your sheets, we will have to wash your pyjamas’. ‘Lie down. I have to wash your vagina’. She repeats this three times. ‘Is it OK? Can you lift yourself up? I’ll have to wash your bottom as well. Yes, it’s very wet. I’ll get it dried off’. The talking trails off as the wash continues. I’m surprised to hear talking so directly about washing her genitals. Normally this is not described by staff. But in explaining what she is going to do, there’s no shock and this patient, who is usually quite distressed during personal care, doesn’t cry. With the wash finished the nurse goes through the same process to get the patient dressed and back into bed. ‘Just going to put your new pad on. Let’s get your pyjamas on’. When this is finished the curtain is drawn back and the patient looks comfortable and appears to be falling asleep.

Site H, ward 15 day 12

The language of staff in these wards to describe body parts was so significant (see above) that when anatomical terms were used it was striking. In this example, it is notable that, when the body part was explicitly named, the patient, who was previously said by ward staff to be highly ‘aggressive’ during personal care, appeared able to recognise what the nurse was doing and why, and, consequently, fully co-operated with intimate care that had resulted in distress and resistance on prior occasions. However, more commonly, the challenges of communicating continence needs and the resulting distress could be observed among both PLWD and ward staff.

Site F

Site F is a district general hospital (containing 200 beds) located in a town of approximately 10,000 people and serves a largely rural population. However, the hospital also serves a wider population of small towns and villages, representing both rural and post-industrial communities. The hospital was built entirely in the second half of the twentieth century. Although the town in which the hospital is based is relatively affluent, the surrounding areas have significant wealth inequalities and areas of deprivation. Patient admissions are largely white British, with English as a first language. This hospital has a specialist frailty unit for the treatment of older people. Staff at this hospital are largely drawn from the area and staff often know patients (or their families) from previous admissions or through local social networks. There is ample free parking for visitors at this hospital. This site is not under the jurisdiction of the Care Quality Commission (London, UK).

Emergency assessment unit

The emergency assessment unit contained 30 beds (i.e. four bays of six beds and six side rooms) plus a triage bay. Three neighbouring bays along one corridor were used for older patients. Rates of dementia diagnosis and cognitive impairment in this emergency assessment unit were high. A final bay was reserved for ambulatory and younger patients. Four toilets lined the corridor. It is an open, unlocked unit with three entry/exit points. A RAID (rapid assessment, intervention and discharge) team was in place for older patients admitted to the unit. Each bay has a designated registered nurse and a HCA. Deprivation of Liberty Safeguards and one-to-one care interventions were rarely used.

Acute medical ward

The acute medical ward is a 32-bed Nightingale-style ward (containing four bays of six beds and eight side rooms). The acute medical ward has two main intakes from cardiology and gastroenterology and, therefore, includes patients with heart and liver failure (both alcohol and non-alcohol related); however, the majority of admissions are for general acute conditions, including falls, urinary tract infections and ‘confusion’. The ward was typically staffed by one nurse in charge of the ward, four registered nurses and three HCAs during a day shift, with high continuity across the ward team. All toilets and bathrooms were in the corridor running through the ward. There is a small, plainly decorated day room with a communal television that also doubles as a meeting room for multidisciplinary teams. Patients are typically in their 70s or 80s, with a minority of patients (up to 10) in their 60s and a smaller number of patients (two or three) in their 90s. On average, approximately 10–12 patients have a formal diagnosis of dementia in the board handover notes each day. Only a small number of patients (i.e. two or three) are identified as having continence issues in the handover notes. This is a locked ward with one entrance, accessed via a code or buzzer. Deprivation of Liberty Safeguards and one-to-one care were rarely used.

Site G

Site G is a teaching hospital (containing 900 beds) that is situated in a regional city with an urban/suburban population of approximately 500,000 people. The hospital is typical of many large NHS hospitals, comprising a mix of very new and very old buildings and units, linked by corridors and walkways. The city itself has significant economic inequalities and areas of deprivation, whereas the surrounding areas are affluent. Patient admissions were representative of the demographics of the city and its outlying areas, meaning a multicultural mix of patients, with a range of first languages spoken by patients and staff. This hospital had recently built a number of specialist assessment units for older people, serving one of the largest A&E units in the UK. Staff were from heterogeneous backgrounds and served by nursing and medical schools at two large local universities. There was ample parking for visitors, but this was quite expensive.

At the time of observations, hospitals in this trust were classified by the Care Quality Commission as requiring improvement, in part because of a lack of understanding around mental capacity assessments at the site. This trust has since been reclassified as good.

Acute frailty unit

The acute frailty unit contains 16 beds (i.e. three bays of four beds plus four side rooms) and is set around a small central hub, from which beds cannot be seen. Each bay and bedroom has its own toilet. This is a locked ward with two entrance/exits, with one leading from A&E and towards an exit and the other leading to ‘memory lane’, an area painted to look like a promenade with a fake coffee shop at one end. Both entrances/exits are accessed via security card or intercom. This unit is next to, but is separated from, the main medical assessment unit. The unit is for older patients and has an aim of discharge or transfer within 24 hours of admission. Each bay [plus neighbouring side room(s)] is designated to a registered nurse and a HCA.

Acute older people ward

The acute older people ward has acute intakes of older people with a range of admitting conditions (e.g. pneumonia, sepsis, urinary system disorders, fractures from ‘falls’ and ‘confusion’). The ward has an old-build Nightingale-style design with 32 beds (i.e. four bays of six beds plus eight side rooms). The bays and single rooms are dissected by a long corridor, with a large and busy nurses’ station in the centre of the corridor. The ward is typically staffed by one nurse in charge, three nurses, one discharge co-ordinator and four HCAs; however, nursing staff were often ‘transferred’ to other wards during shifts, which meant that the number of staff was sometimes reduced to as low as three nurses and two HCAs ‘on the floor’ [the institutional staffing levels for this ward are six nurses (i.e. one nurse in charge, four nurses and one discharge coordinator) and four HCAs]. This is a large team with some continuity of longstanding staff members, but also includes a large number of agency staff and a high use of one-to-one agency staff (often two or three per day shift). All toilets and bathrooms were also in the main corridor. There is a large day room decorated with and containing a large amount of ‘dementia-friendly’ resources. Most patients are in their 70s and 80s, but sometimes there can be as many as five patients in their 90s. On average, approximately 10, but up to 15, patients have a formal diagnosis of dementia in the board handover notes, but staff anecdotally report ‘all’ patients as having the condition. On average, 7–10 patients are identified as having continence issues in each day’s handover notes, but staff describe the ‘majority’ as incontinent or ‘doubles’. This is a locked ward with one entrance accessed via a code or buzzer.

Site H

Site H is a teaching hospital (containing 800 beds) in a major metropolitan city with an urban population of over 1,000,000 people. This hospital was entirely rebuilt very recently and is set in an area of significant social deprivation. Patient admissions were multicultural/national, with a range of first languages spoken. A significant number of admissions spoke only Bengali, a language not commonly spoken by ward staff. This hospital had specialist teams in general units and wards. Staff were from heterogeneous backgrounds and served by nursing and medical schools from several local universities. Staff typically did not live near the hospital or have a connection with the local area, commuting considerable distances to work. There was no parking for visitors and visitors were encouraged to use public transport.

At the time of observations, this trust and site were classified by the Care Quality Commission as good, which included direct inspection of the acute assessment unit and of older people’s care.

Acute assessment unit

The acute assessment unit has 26 beds (i.e. four bays of four beds plus 10 side rooms) set around a long horseshoe-shaped corridor. The unit is next to a similar unit, also with 26 beds, which typically admits younger patients, with staff rotated and shared across the two units. The unit is on a double-digit floor of a large tower that is accessed by a single hub of lifts or a staircase. The unit is staffed by five registered nurses, each assigned five or six beds that cut across physical bays. Two HCAs are allocated 13 beds each between two bays and the neighbouring side rooms. The unit is a locked ward and is accessed via intercom or security card.

Care of the elderly ward

The care of the elderly ward contains 26 beds and has acute intakes of older people with a range of admitting conditions (e.g. pneumonia, sepsis and urinary system disorders). It is a new build, approximately double the size of traditional wards, with four large bays with four patients, each bay also with its own large bathroom. There are 10 single-occupancy rooms, each with a large en-suite bathroom. There are additional toilets in the hall. The ward is typically staffed by one nurse in charge (plus a full-time discharge co-ordinator), four nurses and four HCAs during the day shifts, although they were often ‘short’ (the institutional staff levels for this ward is nine, i.e. five nurses and four HCAs for a day shift). There was some continuity of staff in this ward. There are two nursing stations situated within a large and wide circular corridor. The patients are typically in their 70s and 80s, with anywhere from four to 10 patients having a formal diagnosis of dementia in the handover notes each day. Similar numbers are recorded for continence issues in the handover. However, overall, ward staff describe ‘all’ patients as incontinent, highlighting singular continent patients as exceptions. There is a small ‘dementia-friendly cafe’ for patients and visitors. This is a locked ward with one entrance accessed via identification cards or buzzer.

Communication

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Date searched: August 2020.

Individualised care plans

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Date searched: August 2020.

Communication

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Date searched: August 2020.

Individualised care plans

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Date searched: August 2020.

Communication

Date range searched: inception to August 2020.

Date searched: August 2020.

Individualised care plans

Date range searched: inception to August 2020.

Date searched: August 2020.

Communication

Date range searched: inception to August 2020.

Date searched: August 2020.

Individualised care plans

Date range searched: inception to August 2020.

Date searched: August 2020.

Communication

Date range searched: inception to August 2020.

Date searched: August 2020.

Individualised care plans

Date range searched: inception to August 2020.

Date searched: August 2020.

Communication

Date range searched: inception to August 2020.

Date searched: August 2020.

Individualised care plans

Date range searched: inception to August 2020.

Date searched: August 2020.

Communication

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Care plans

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Search strategy

dementia AND communication and toilet or continence.

dementia AND care plans and toilet or continence.