There is increasing recognition that action is required to improve the experience and outcomes of people living with dementia (PLWD) admitted to hospital for an additional acute condition.1–5 The Alzheimer’s Society (Plymouth, UK) has identified widespread poor care for PLWD in the acute setting, with the quality of care received varying widely.6 This variation means that PLWD are ‘likely to experience poor care at some point along their care pathway’.7
Prevalence of people with dementia in the acute setting
The acute hospital setting has become a key site of care for PLWD, with the Department of Health and Social Care recognising that between 25% and 50% of all acute hospital admissions are of people who are also living with dementia,6,8–12 representing high levels of unscheduled and emergency admissions (77%).13 A diagnosis of dementia is associated with increased risk of hospitalisation,14 with potentially preventable conditions, such as pneumonia, sepsis, urinary system disorders and leg fractures,10,15 often the principal cause of admission.
Estimates are likely to be low because of under-reporting or late diagnosis of dementia in this population.2 Previous screening studies suggest that, in the acute setting, approximately 50% of patients affected by dementia remain undetected and undiagnosed16 and do not yet have a formal diagnosis in their medical records;10,17,18 however, more recent figures suggest that this rises to two-thirds19,20 or even three-quarters12,21,22 of older people (i.e. patients aged > 65 years) during an acute hospital admission. A high prevalence of delirium (15.5%), undiagnosed delirium (72%)23 and comorbid mental health disorders among17 this patient population, as well as comorbid chronic conditions, such as diabetes,18 also potentially has an impact on cognitive function during an admission.
Impact on patient outcomes
People living with dementia are a highly vulnerable group, and their hospitalisation is associated with increased risk of deterioration,14,17 functional decline and a range of adverse outcomes,22,24 including delayed discharge25 and institutionalisation.26 PLWD also have a markedly higher short-term mortality9,26–28 than similar patients without a dementia diagnosis.
Acute hospitals have been called ‘challenging’28 and ‘dangerous’29 places for older people and PLWD. Health-care-related harm and adverse events experienced by PLWD are typically associated with falls, delirium, incontinence and functional decline.30 Associated iatrogenic impacts31 of an admission include incontinence,32 reduced mobility,33–35 increased agitation,36 delirium,37–40 longer admissions41 and distress.42–46 These adverse events can result in further dependency, institutionalisation and, potentially, death during an acute admission.31
Calls for transformation
In response to this evidence, there has also been recognition by policy-makers of the urgent need to improve care for PLWD in hospitals, particularly for admission to general hospitals for an unrelated condition.28 A ‘transformation of dementia services’ (contains public sector information licensed under the Open Government Licence v3.0) has been called for in the Department of Health and Social Care national Living Well with Dementia: A National Dementia Strategy4 and by the Dementia Action Alliance.47 In partnership with the NHS Institute for Innovation and Improvement (Coventry, UK), a key objective within the Dementia Action Alliance’s call to action47 is to design services around the person with dementia through the creation of dementia-friendly hospitals. These objectives are supported and reinforced by a wide range of policy recommendations. The Prime Minister’s Challenge on Dementia48 renewed the focus on dementia-friendly health and care, with the goal of every person with dementia obtaining the safest and best care in acute hospitals.
However, although acute hospitals have an increasing range of initiatives,8 even in institutions where high-quality acute care is identified, this is limited to specific wards, failing to reach across an organisation.8 Overall, it is acknowledged that hospitals struggle to respond to the needs of an ageing population, with increasing hospital admissions among this group.49
The social organisation and interactional context of care
Research draws attention to the social and organisational context of care in influencing front-line delivery in acute wards, with much research focused on the care of older people and PLWD. Meta-ethnography50 identifies that, despite nurses’ aspirations for a high standard of psychosocial care, a high standard of psychosocial care was largely dependent on ward-level social and organisational conditions.
National Institute for Health and Care Research (NIHR) studies report strong associations between ward cultures and care quality. Patterson et al.51 found that positive patient and carer assessments of acute care for older patients were associated with higher staff ratings of a positive climate for care, which was mirrored in a second NIHR study that found that experiences of working in wards directly influenced patient experiences.52 The impact of different shifts on work goals and priorities,53 a culture of reactivity,54 and austere ward environments and cultures that emphasise routines with few opportunities for communication restricted both patients and staff, and were associated with staff moral distress and burnout.53,55,56 A systematic review of qualitative studies highlighted the importance of relational work in delivering high-quality care in acute wards57 and the importance of the nursing role in identifying and promoting dignity for older people with dementia.56 However, given the increasing delegation of ‘hands-on’ care to health-care assistants (HCAs), an important focus needs to be this less-privileged58 and marginalised group, and how this group can influence how care is organised and delivered.58,59
Despite PLWD representing a significant population in the acute setting, ward cultures can mean that delivering care appropriate to their needs is often viewed as ‘a disruption to core business’,60 as PLWD can be viewed as a group of patients who do not belong in the acute setting61 and should be transferred to other services.62 Older people and family carers recognise that developing good relationships with staff powerfully informs and shapes their experience of a hospital admission.63 Acute ward staff can fail to promote the identity and well-being of PLWD in their care, and may not recognise or respond to opportunities to deliver the recommended person-centred care,64 with patients who are viewed as ‘complex’ or ‘demanding’ receiving less personalised care.56 As a result, the acute setting remains a potentially harmful location for this patient group.
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?’