Discussion

Parts of this chapter have been reproduced with permission from Featherstone and Northcott124 under licence CC-BY-ND-4.0.

This study aimed to deliver detailed understandings of the everyday practices and impacts of continence care for PLWD following an unscheduled admission in the acute hospital ward setting. Utilising ethnography permitted examination of those details of everyday life in acute wards that were, to the best of our knowledge, previously unexamined in the literature. In addition, ethnography allowed the investigation of the seemingly hidden and undiscussed activities and phenomena of the hospital ward, while placing them in the wider context of everyday care. We were able to examine the ‘hidden mechanisms’,119 the organisational infrastructures and the rationales embedded in the technical and procedural work of continence care as it was delivered in these wards. In addition, we observed how ward staff account for and make sense of the continence needs of PLWD, and how staff respond to and rationalise these needs and the consequences of their actions over time. We have presented findings that provide an original and detailed understanding of the social and institutional forces that shape and influence everyday organisation and delivery of continence care in these acute wards for this significant patient population.

The use of ethnographic ‘thick description’ in presenting our detailed empirical findings permits the reader to develop a strong connection to the social worlds of these wards. We shine a light on the multiple nuanced, complex and skilled everyday interactions involved in the practices of continence care carried out by ward staff (predominantly nurses and HCAs). Our detailed analysis provides understandings of the complex social relations occurring in these wards, and the ways in which the organisation and delivery of continence care at the bedside connects closely with and is informed by wider institutional expectations, policies and priorities,122 which, in turn, shape the personal impacts of continence care for both PLWD and ward staff.

Our analytic goal was one not of ‘representation’ or ‘comparison’, but rather of ‘identification’ (i.e. to reveal the social processes underpinning and informing the everyday practices of continence care for PLWD in these acute ward settings). This allowed us to identify the significance of continence ‘pads’ in shaping the cultures of care for PLWD.

In this report, we have focused on presenting our analysis on continence ‘pads’, which, we believe, is the most common and ubiquitous continence product on these wards. These ‘pads’ are widely used in the everyday bedside care of PLWD and have significance in informing wider cultures of care for PLWD in this setting. These products both produce and reproduce cultures of care, including the organisation and delivery of everyday continence practices. These products also have wider impacts, particularly for shaping staff understandings of dementia as a condition, the recognition of the needs of PLWD in these wards, and PLWD’s status in the organisational and wider institutional priorities.

The ‘pad cultures’ identified in these wards emphasised the routine use of continence ‘pads’ as a precautionary ‘just-in-case’ strategy (i.e. a ‘safeguard’ in preventing, but also containing, ‘accidents’ or incontinent episodes at the bedside) for PLWD admitted to these wards. ‘Pads’ were used regardless of independence, mobility, capacity and functionality. Importantly, we identified processes of contagion and spread in the recognition and application of this category of patient, which meant that this practice typically informed care for a wider group, including not only PLWD recognised as continent, ‘mobile’ and ‘self-caring’, but also the large numbers of older people in these wards.

This strategy was recognised as routine across these wards, legitimising care practices with real and significant consequences for the dignity, rights and outcomes for PLWD, and their status in the wider cultures of care in these wards. ‘Pads’ were transformed beyond a precautionary strategy into a routine feature of continence care. In turn, this allowed the practices to support maintaining continence (e.g. mobility, walking to and support to the toilets in these wards) to become deprioritised and no longer expected or required of the PLWD. Instead, there was an expectation (often explicitly stated by ward staff, but also embedded in other routine timetabled care practices at the bedside) that the person would not only wear the pad, but use it. This strategy was a feature of continence care across all of the wards observed and would often become a feature of care regardless of an individual’s continence, independence or preference.

The timetables of the ward and bedside care are critical. Expectations of maintaining the daily organisational timetables of bedside care were powerfully felt and were a palpable source of tension among nursing and health-care staff. An underlying anxiety of ‘falling behind’ during shifts was frequently discussed and universally feared. The development of these ‘pad cultures’ represents not a malicious act or poor care on the part of ward staff but, rather, a solution or ‘workaround’ to achieve the (both perceived and expected) pace of work, the institutionally mandated timetabled ‘rounds’ of routine and essential care, and the associated recording and monitoring practices at the bedside. The use of pads as a precautionary and containment strategy was not only a response to a person’s incontinence or their inability to independently walk to a toilet in these wards, but was believed to be necessitated by organisational constraints. The timetabled organisation and delivery of care during shifts appeared not to allow for urgent continence care needs to be prioritised by staff over other routine care or the associated recording practices. In turn, this organisational strategy acted to create urgency by discouraging PLWD from leaving the bedside and walking to the bathroom. Similarly, the use of pads as containment mean that incontinence or ‘accidents’ could remain undiscovered or concealed on the person and at the bedside until the timetable allowed.

According to ward staff, it was only by adopting such approaches that they could complete their timetabled routines of care and their recording practices, meaning there were reduced opportunities to respond to (or prioritise) the unpredictable and significant care involved in supporting the continence needs of the large numbers of PLWD in these wards. This informed understandings, expressed by staff across these wards, that this approach to continence care for PLWD was both legitimate and institutionally mandated. Many ward staff did recognise the significance of these approaches and the potential for the rapid deconditioning of PLWD, but did not see other ways of working that supported continence and independence as possible. This rationale was expressed by staff to the research team, and also to each other, and was also evident in staff explanations and rationalisations to PLWD and to their families at the bedside.

The goal of reducing the risk of ‘falls’, particularly for this patient population, was deeply embedded in the rationales supporting ‘pad cultures’. This risk is legitimate for many PLWD; however, staff were motivated to reduce this risk not simply for its own sake, but also because they were universally fearful of the sanctions (for the ward and themselves) that would be imposed if a person living with dementia fell while in their care. Therefore, containment at the bedside through the use of continence ‘pads’ saw continence care transformed into a form of restrictive practice in these wards, lessening perceived risk by reducing or eliminating the requirement to leave the bedside at the expense of or despite the preferences and needs of the person. In these wards, a person living with dementia independently trying to get out of bed or walking to the bathroom (including using a walking frame) could provoke high levels of anxiety in ward staff and was a form of independence that was generally discouraged and often forbidden (although we identified notable exceptions to this).

This ethnographic study has revealed that continence care represented a significant and central aspect of care work for staff in these wards. A key feature of discussions with ward staff about continence care was their experience of it as ‘heavy nursing’. When explaining the ‘heavy’ burden and the ‘heavy load’, staff described the physically demanding nature of this care and also the experience of feeling abandoned and of being isolated with the responsibility of caring for large numbers of PLWD who required highly supportive care. Staff were further isolated by the perceived status of this care work. Much has been written about continence care and its status in nursing.67 In these wards, continence care was typically invisible to teams and services entering these wards and was viewed as low-status work to be delegated to others, with little effect on the experiences and outcomes of their patients. As we have discussed throughout our findings, ward staff were aware that the continence care strategies adopted on these wards did not reflect the care they wanted to provide to their patients. However, more widely, there were no indications in these wards and their cultures that continence care was recognised by these institutions as critical for care quality and having significant implications for the individual person living with dementia in their care.

Time is of significance here. Continence care that supported the independence of PLWD was often viewed as taking ‘too long’ and a source of delay that could have an impact on other routinised timetabled aspects of bedside care. Our synthesis142 identified the difficulties of communicating continence needs and the importance of health-care staff having the time to recognise and respond to the non-verbal and affective cues PLWD may use to convey their need; however, these ‘pad cultures’ included the requirement of ‘permissions’. Strategies of containment and the requirement for continence care to be carried out at the bedside, in turn, also generated significant care needs and care work.

As we have described in Chapter 7, Containment, prompting and the prioritisation of urgent and visible continence care, the large wraparound continence pads typically used in these wards regularly failed in their primary purpose (e.g. pads leak, smell and can damage skin) with the result that it was necessary not only to remove and replace ‘pads’, but also to carry out significant personal and intimate care (e.g. undressing, washing, changing clothes and changing sheets). For staff, this involved repeated trips to linen stores and sluice rooms, which were often located far from the patient’s room or bay. This also required care that was far more personally invasive than if the patient had been supported to the toilet, invasiveness that routinely caused significant distress to patients. In addition, even the use of pads in the care of PLWD who were assessed as ‘mobile’ and ‘self-caring’ created care work. The bulky nature of the wraparound pads and the dexterity needed to change them meant that PLWD (and also many older people without a diagnosis of dementia) required additional support in walking to toilets and in changing pads, which, in at least some cases, was unnecessary.

The pace of (expected and perceived) care at the bedside meant that the independence and autonomy of PLWD could become a reduced priority. When staff perceived that they were ‘short’ (i.e. understaffed) or were ‘falling behind’ with the wider timetables of bedside care, the opportunities for patient independence became reduced and a reliance on the use of ‘pads’ became further prioritised. At these junctures in shifts (although 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 quickly become perceived as too time-consuming, clashing with and potentially delaying other institutionally mandated timetabled tasks of care (e.g. observation, medication rounds and the timetables of other teams, including the arrival of medical teams or mealtime deliveries). Although staff in these wards discussed and recognised the importance of providing care that supported independence, at these points in the shift, these routines could become ‘tightened’53,124 and reduced to the use of a more limited range of (verbal and physical) techniques and approaches with a focus on increasing their efficiency, with pads used to contain both continence and the PLWD at the bedside. Instead of ‘prompting’, ‘pad checks’ or a reliance on containment came to the fore until the timetables permitted staff to attend to continence care.

This ‘tightening’ also created its own forms of continence routines and rituals (e.g. ‘prompting’, ‘pad rounds’ and ‘pad checks’) in these wards where ward staff (typically HCAs) prompted continence and ‘checked’ if ‘pads’ required changing at points during shifts. In practice, in these wards, these routines appeared to have transformed from ‘prompted voiding’ (i.e. an established approach that combines a schedule to support toileting with ‘prompting’ from health-care staff or carers for people with cognitive impairment)183 into more limited routines and practices at the bedside. These routines reduced opportunities for flexibility and for staff to see and respond to an individual’s urgency. These routines also appeared to have transformed into the far more restrictive practice of ‘pad checks’, which emphasised the centrality of checking and replacing continence pads at the bedside. ‘Pad checks’ could also become a more sporadic and ad hoc practice, which could be interrupted or stalled during shifts once staff perceived they were at risk of ‘falling behind’ or could be deprioritised and become viewed as possible only during ‘quiet’ points in the shifts. Therefore, continence care often became 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.

When ward staff attempted to fit the urgent continence needs of a person living with dementia in the timetabled order of bedside care, this could lead to significant patient distress, either through difficulties in recognising care needs and responding to urgency or through the level of intimate continence care required. There also appeared to be little recognition of the urgency or distress for the person of being unable to reach a bathroom, being unable to avoid using a continence pad or of wearing the soiled pad, and of the immediate needs or the practical considerations once a person had ‘used’ or soiled their pad. Importantly, such distress could also become viewed as a feature of a person’s dementia and could cause distress for family members and visitors. Our synthesis identified the significance of health-care staff attitudes to continence care and incontinence.142

By reducing continence care to these forms of prompting and checks, the important opportunity that continence care provides for staff to provide wider supportive care and comfort to the person was overlooked (i.e. care and comfort that requires time to see the person and to support their wider needs). Our synthesis142 also identified the importance of language, and the need to incorporate interpersonal and communication skills into the context of continence care in training for those staff working with this patient group. Despite its apparent centrality in the everyday work of these wards, continence care for PLWD (and older patients) was often carried out in silence or with staff using a restricted repertoire of language to communicate continence care and to explain and describe the intimate care that was happening or about to happen. The naming or failure to name body parts, particularly genitalia, bodily functions, urine and faecal matter, the naming and description of continence technology, and the language and etiquette of communicating continence needs during personal care for PLWD (and older patients more widely) was notable. Some aspects of continence care were not discussed at all or by using humour only, whereas other aspects were talked around or euphemisms were used. Importantly, there was little evidence that staff were able to check the person’s comprehension or vary language to suit the individual.

Robustness of the results and limitations

This study set out to explore and establish how ward staff account for and make sense of the continence needs of PLWD, how staff respond to and rationalise these needs, and the consequences of staff actions over time. As a result, we have presented findings that provide an original and detailed understanding of the social and institutional forces that shape and influence everyday organisation and delivery of continence care in these acute wards for this significant patient population.

By collecting 180 days of observational data across six acute wards in three hospital sites, which included a range of institutions, geographies and patient demographics, we were able to respond to the potential limitations of transferability. This long-term ethnographic engagement with these ward settings meant that we were able to move our analysis beyond individual incidents and a descriptive account to build up an analysis that was grounded in observations. This analysis allowed us to achieve a theoretical interpretation of the data to deliver understandings of the cultures that shaped and reshaped the practices of continence care and the wider care of PLWD across these institutional settings. Although the staffing, teams, technologies, expertise and interventions to support PLWD varied across sites and wards, in these ward settings the organisation and delivery of continence care, the prominence of ‘pad’ technologies and the ‘pad cultures’ identified in this report remained relatively stable as embedded practices of everyday bedside care for PLWD.

Our aim in using ethnography to examine everyday continence care, a complex and highly sensitive topic, was to access unspoken and tacitly understood aspects of such care.110 The ethnographic approach enabled us to take into account the perspectives of ward staff, patients and families, and wider clinical and hospital staff108,109 in these acute wards. However, as experienced ethnographic researchers, the team working in these ward settings was also acutely aware of the potential for the presence of observers to influence practice and contaminate data. Prior to the research, we did consider the potential for the Hawthorne effect or ‘participant reactivity’ and acknowledged that staff behaviour may be changed by the researcher’s presence in the wards.

In response, and based on our prior research in acute wards,106 our design included extended periods of observation in each ward, with each individual ward setting observed for 30 days over 8 weeks, with periods of observations lasting from 2 to 6 hours. This time frame meant that staff became used to the presence of and developed relationships of trust with the researchers (KF and AN), which we hoped would mitigate the potential for observations to influence practice.184 However, we recognise that the behaviour of the teams and individual members of staff working in these wards may have been changed by the researchers’ presence in these wards.

It is not possible to eliminate the impacts of the presence of observers; however, a key strength of an ethnographic approach is that any performance observed, regardless of how it is staged or influenced by the researcher presence, can reveal critical insights by displaying how people see themselves and how they want to be seen.184,185 By adopting a grounded theory approach, we were able to carry out theoretical sampling in these ward sites, and this also enabled us to focus on the representativeness and consistency of events and concepts, rather than individuals and people. To identify and understand everyday practice, we observed multiple rotations of staff, patient admissions and events in these wards that had the potential to influence care delivery. In situ ethnographic interviews with staff, PLWD and their families also provided the opportunity to test and refine our analysis during observations, in line with our grounded theory approach. This reflects a key strength of ethnography, and remedies a common weakness in many qualitative studies, which is that what people say in interviews may differ from both what they do and their private justifications to others.126 These approaches were central to collecting high-quality data to achieve methodological rigour and aid theoretical interpretation of the data.

As can be seen in the results presented, during our extended engagement in these wards, PLWD (and older people in these wards) would frequently tell us that they wanted to go to the bathroom. In addition, these people would ask for support and, more widely, would often share their concerns (which were not always related to their admitting condition or present comfort, but, instead, about loved ones, possessions, family and pets, or how they would afford to pay for their food or their care). The research team (with patient consent) would inform ward staff of these concerns. The researchers were often the only people present on or around these wards for uninterrupted periods of time. As a result of this, sometimes, when ward staff were not present or able to be called quickly to a bay, we provided immediate support and help. For example, if we observed a patient placing themselves at immediate risk of falling, injuring themselves or leaving the ward, we would call staff or, if necessary, intervene to protect the patient. Although we accept that this may have, on occasion, contaminated the purity of this research, the welfare of the people in these wards was always our priority.

Practical limitations presented themselves throughout the research. As a result of the ethics and governance permissions granted to the study, the team was unable to follow or track patients once they were transferred to other sites in these hospitals. This was mitigated by the inclusion of medical assessment units (where people are admitted for assessment and are either discharged or transferred elsewhere) and general medical ‘care of the elderly’ wards (which typically have additional support and services in them for PLWD), which enhanced the potential for data collection to include PLWD at admission, following transfer and at discharge. The inclusion of these units and wards also allowed the study to explore whether or not there were variations in the organisation and delivery of continence care PLWD received across these acute settings.

The researchers could observe and take fieldnotes for only a limited number of hours and shifts at each site. It was rarely possible for the researchers to continue observations in the wards for the extended period required to see a patient’s response to and the impacts of continence care over the entire period of a shift or their admission. It was also not uncommon to arrive at a ward and be told that we had missed an incident. However, these incidents and events often represented the extraordinary and not the everyday practices and cultures we wanted to explore. These incidents also reflected that, although staff knew of the purpose of our research and our goal to improve care, staff often misinterpreted the context of our observations and data collection.

A significant limitation of this study, which could not be predicted at the time of data collection and analysis, was the outbreak of COVID-19 during the production of this report. All data were collected between October 2018 and October 2019. Therefore, these data reflect everyday acute ward organisation, culture and practice prior to the outbreak of the COVID-19 pandemic and the resulting changes to the delivery of care. Owing to infection control measures, the researchers have not conducted any observations during the pandemic and cannot say if the measures taken to control the spread of COVID-19 in these wards have changed the ways in which continence care is delivered and the continence needs of PLWD are met.

Recommendations for future research

In this study, we had hoped to explore if continence care was further impacted by the intersections of gender, race and ethnicity,84 and we have identified some complexities in continence care and its impacts and interactions with gender. We have included within the data collection the experiences of people in ethnic minority communities who were living with dementia and did explore these individual experiences of care to inform our broader analysis. However, to bring the experiences of the small number of individuals from diverse communities together within our analysis lacked methodological rigour. We do not want to further contribute to the longstanding ‘black box’ research approach of grouping the experiences of individuals from diverse communities together, which has been widely critiqued.186–188 Although research in the field has provided generalised understandings, it has yet to adequately address the specific needs of diverse populations186,189 that are also living with dementia. We believe research is required that focuses on the experiences of specific communities. This research should explore the complexity of intersectional experiences of living with dementia. We are currently working to support researchers to take the lead in this research.

Our findings indicate a pressing need for a programme of research that examines the timetabled organisation and delivery of task-based routine bedside care carried out by nursing staff and HCAs. The modern hospital is typically represented as a site of great technological advancements. However, there was little evidence of new knowledge or interventions in these acute wards, or of their use in the organisation and delivery of care at the bedside. The routine and timetabled practices of bedside care work do not appear to be recognised or valued, have remained relatively stable and constant in their mode of delivery, and remain relatively unexamined. A programme of research is required to deliver the evidence base needed to inform the timetabled organisation and delivery of care (and care cultures) for these seemingly invisible routines of care work delivered to significant populations of vulnerable acute older patients, as this care work has powerful iatrogenic and longer-term impacts on both experiences and outcomes of PLWD (and older people) in the acute setting, including the potential for deconditioning and mortality.

Review of evidence and implication for decision-makers

• Ward staff expressed the experience of feeling abandoned and of being isolated with the responsibility for continence care and for caring for large numbers of PLWD who required highly supportive care. In response, we urge greater institutional recognition of the importance of continence care as dignified and essential care work that has significance not only for clinical outcomes, but also the humanity of care and the personhood of PLWD, as well as other vulnerable populations in the acute setting.
• Training and resources are required to support ward staff, and hospital staff more widely, working across the acute setting. This training should include how to talk about the body, its management and the intimate care and care needs to PLWD and older people during an admission. Training in communication and in the interactional expertise required at the bedside must reflect ‘work as done’ rather than ‘work as imagined’. Training should recognise and respond to the discomfort for staff across the acute setting in discussing body parts, processes and the practices surrounding intimate care, particularly with older people.
• The education of continence care is not a significant part of the undergraduate nursing curriculum, which typically does not provide ‘skill-based teaching’ for what is widely perceived to be a practical routine task to be learnt predominantly at the bedside during clinical placements and in practice. This produces and reproduces current cultures of ward care as standard practice, instead of delivering evidence-based training in a significant aspect of care in the acute ward setting and this, as we have presented in the findings of this research, can have significant impact on both PLWD the ward staff caring for them. The results of this study indicate that there is an urgent need to invest in the development and delivery of evidence-based nursing education in continence care and in the care of PLWD in the acute setting in nursing education.
• In this study, staff often expressed the view that, although they wanted to support their patients’ continence, they believed it was not possible to work in other ways. NHS organisations need to support wards and ward teams to develop ways of working, particularly in the organisation and delivery of bedside care for PLWD, that supports continence and that respond more flexibly to patients’ care needs, and to their mobility and independence more widely.
• The reduction of risk for this patient population, particularly of ‘falls’, was deeply embedded in the rationales supporting ‘pad cultures’. Falls are a legitimate risk for many PLWD; however, staff were not simply motivated to reduce this risk for its own sake, but were universally fearful of the sanctions (for the ward and for themselves) of a person living with dementia falling while in their care. The NHS and hospital institutions must recognise that the introduction of such policies and the associated sanctions can have unintended consequences on care cultures. Institutions need to monitor whether or not these policy interventions are informing the cultures of care in acute wards, in what ways and with what consequences.

Outputs and dissemination

We are using this research to develop and deliver outputs focused on service organisation and training staff in the acute setting. In response to COVID-19 restrictions, we focused our attention on delivering outputs that informed policy and connected with and developed networks of practice, taking full advantage of remote methods to offset access difficulties.

To inform policy, we have worked with the Welsh Assembly Government. Katie Featherstone attends the Welsh Assembly Government Cross-Party Group on Dementia, having been invited to join in March 2021. Study findings have contributed to the Cross-Party Group report into hospital care for PLWD (yet to be published). Katie Featherstone is also a member of the Dementia Partners National Steering Group (Welsh Assembly Government), chaired by Innovate Cymru, Public Health Wales, which contributes directly to the dementia care programme to improve care in Wales. Paula Boddington has been appointed as a member of the European Commission Committee’s Atomium European Institute AI4People 2020 Committees, including the Committee on Healthcare, which makes recommendations on the implementation and deployment of ethical artificial intelligence in the health-care sector. Our NIHR research directly informed and is cited in the national Wales Safeguarding Procedures for Children and Adults at Risk of Abuse and Neglect, which was published in April 2020.190

The team have presented the study to a wide range of audiences, with invitations to speak to acute clinical staff, allied health professionals, PLWD and academics nationally, including:

• the East Midlands Dementia Education Day (December 2021)
• Continence Team, Aneurin Bevan University Health Board (October 2021)
• the All Wales Inpatient Falls Network (November 2021)
• the Clinical Board of Dementia Champions, Cardiff and Vale University Health Board (July 2021)
• NIHR Applied Research Collaboration North Thames and the Centre for Health Care Innovation Research (June 2021)
• Alzheimer’s Society, Dementia Action Alliance and Public Health Wales event to support the Dementia-Friendly Hospital Charter (Wales) (March 2021)
• Framing Ageing: A Clinical, Cultural and Social Dialogue, Trinity College, Dublin (March 2021)
• East Midlands Medical Sociology Group, British Sociological Association (February 2021)
• the Salford Institute for Dementia (March 2021)
• Wales international conference Advancing Dementia Care Cymru, a collaboration between Public Health Wales Improvement Cymru, The Royal College of Psychiatrists (Wales) Old Age Faculty and key partners from across Wales (February 2021)
• Medicine, Science and Culture Group, Cardiff University (December 2020)
• Centre for Research in Communication and Culture Seminar Series, Loughborough University (November 2020)
• 3 Nations Dementia Working Group: Our Experiences of Hospital Care During a Pandemic (November 2020)
• World Hospice and Palliative Care Day event, De Montfort University (October 2020).

A primary research goal was to update existing ward-based recommendations for models of care and the organisation of nursing and HCA care work to ensure support for the quality and humanity of continence care. This includes integrating continence care in existing risk assessment (e.g. falls), rehabilitation strategies and discharge planning. In response, we have worked with key dementia care, clinical and policy networks to deliver new knowledge that has informed and contributed to the following:

• The development of the Dementia-Friendly Hospital Charter (supported by Welsh Assembly Government). The Charter sets out the standards for all hospitals in Wales to create dementia-friendly environments for PLWD and their families and carers. The Charter’s purpose is to focus on improvement and to support the embedding of the dementia-friendly principles in hospitals. Katie Featherstone was a committee member and was invited to present the research to inform the discussion of what is required to improve care for PLWD in the acute setting, with the Charter drawing directly on this NIHR research.
• Presentations and discussions with the All Wales Inpatient Falls Network (November 2021). The goal, here, was to develop awareness of the role of risk management and policies in ward cultures of continence care for PLWD.
• Presentations and discussions with clinical boards and dementia champions to discuss ways to improve continence care in acute wards.
• Presentations and discussions with the Executive Director of Nursing, Associate Director of Nursing and Continence Team, in a participating Health Board. We are working together to develop and deliver training to support ward staff using an improvement collaboratives approach.
• Presentations and discussions with the Welsh Ambulance Service and the Mental Health and Dementia Steering Group to discuss risk assessment, how to prevent inappropriate hospital admissions and how to improve ambulance environments for PLWD (March and May 2021).

Another goal was the identification of factors in organisation and ward culture (e.g. practices, routines and interactional styles) that can improve or worsen the experiences and outcomes of PLWD who have continence needs. This may include approaches to facilitate the integration of key elements in handovers and observation rounds. In response, we have carried out the following:

• We have worked closely with one of our participating NHS sites to collaborate with and support the continence team. The research and development director has recognised that the team and this NIHR research has ‘supported nursing leadership around dementia care within our acute hospital care settings [which serve a population of 600,000] and promoted the research culture and capacity within our organisation’.
• We have collaborated with Dementia UK (London, UK) and admiral nurses. Dementia UK’s head of research has communicated that the team and this NIHR research ‘have been particularly influential in helping us to refine the admiral nurse “offer” in supporting the acute sector to deliver person-centred care . . . the numbers of acute care partnerships we have are increasing exponentially as a result’.
• We have supported individual dementia specialist nurses working in the acute setting, providing remote support via e-mail and Zoom (Zoom Video Communications, San Jose, CA, USA) to support the development of organisational interventions to improve care for PLWD in the wards.

The research team are in discussions with Dementia UK to establish a community of practice focused on the care for PLWD in the acute setting. Networks and individuals in the acute setting will be invited to join when this is launched in 2022.

A further goal was to create training targeted at acute staff (i.e. nurses, HCAs and allied health professionals), carers and families to support continence care for PLWD, including organisational and interactional techniques that facilitate the quality and humanity of continence care. In response, we achieved the following:

• As a direct result of the research, Public Health Wales Improvement Cymru and NHS Cymru, invited Katie Featherstone, Andy Northcott and Jane Harden to design and deliver a training programme for all seven NHS health boards in Wales. This was accompanied by training for nursing and ward staff from three NHS trusts in collaboration with Dementia UK. Pilot training took place in one health board in November 2019. Nine further sessions were scheduled to take place from March 2020 onwards, but were postponed because of COVID-19.
• In collaboration with NHS health boards in Wales and NHS specialist teams in continence care, the research has directly contributed to and is cited in the development of the NHS e-learning module ‘Continence’. This will be available to all NHS staff via the electronic staff record portal for Wales. Prior to our involvement, this portal did not contain any specific advice on continence care for PLWD, including the interactional or communication skills required.
• Masterclasses (via video and factsheets) were held for hospital staff on continence care, decision-making and management for PLWD and integrated into undergraduate nursing and allied health professional curricula, including –
  • a 3-hour masterclass on dementia care, patient safety and risk via a postgraduate nursing module at Cardiff University (November 2020)
  • a 3-hour masterclass on ‘caring for the person with dementia in acute settings’ for undergraduate (first-year) nursing students at Cardiff University (December 2020)
  • a 2-hour masterclass on ageing and health for 360 third-year undergraduate students via the De Montfort University (Leicester, UK) Health and Wellbeing in Society programme.

Capacity building

The researchers believe that this study could have a significant impact on improving continence practice, raising continence awareness and improving the experience PLWD have during a hospital admission:

• Discussions are under way with Innovation Cymru, Public Health Wales, Dementia UK and members of acute hospital trusts in England and Wales to use the study findings to pilot interventions to improve continence care.
• Katie Featherstone developed and co-ordinated a training network to support early career researchers and mid-career academics working in the field of dementia research via the NIHR Dementias Portfolio Development Group (NIHR funding). This involved a series of monthly (2019–21) online workshops that delivered research training and mentoring to a cohort of 12 early career researchers. The series was rated highly by participants and, in response, Alzheimer’s Research UK contacted Katie Featherstone to discuss how to build on this initiative and expand its reach to develop a larger programme to support the development of early career researchers working in the field of dementia research. In addition, Katie Featherstone was invited to present the programme to The Dementia Research Funders Forum in January 2021.
• We have developed a research network with leaders in the field of continence care and dementia, which includes international collaborations with colleagues in Australia, New Zealand and Finland, to build on this study, with further research and publications in development.

A publication strategy is in place following this report, which will target high-impact journals in nursing, sociology and dementia.

Theoretical developments from this research are expanded in Wandering the Wards: An Ethnography of Hospital Care and its Consequences for People Living with Dementia.124 To date, this open-access publication has been in the top 10 anthropology books on the Amazon Kindle store (URL: www.amazon.co.uk/kindle-store-ebooks-newspapers-blogs/b?ie=UTF8&node=341677031) since publication. In addition, the publication was shortlisted for the 2021 Foundation for the Sociology of Health and Illness Book Prize.191