Managing Faecal INcontinence in people with advanced dementia resident in Care Homes (FINCH) study: a realist synthesis of the evidence

Care homes

In England, there are approximately 17,500 care homes that are home to about 487,000 older people, the majority of whom are women aged ≥ 80 years. 1 Care homes are the main providers of long-term care for older people in the UK, and there are approximately three times as many beds in the care home sector as there are NHS hospital beds. 2 The terms ‘care home’ and ‘long-term care’ refer to residential care provided to older people who require help with personal care and cannot be supported in their own home because of frailty, lack of mental capacity and/or functional limitations. The terms include homes that have on-site nursing provision and those that do not. In this report, the phrases ‘long-term care’ and ‘care home’ are used interchangeably. In the UK, care homes are run by both for-profit and not-for-profit provider organisations. The care home sector is diverse, varying in size, ownership, funding sources, focus, education of the workforce and organisational culture. 3 This variability in provision has implications for the way in which interventions to support continence care are understood and implemented, for example the presence or absence of on-site nurses, topic expertise in the workforce, organisational structure, funding and staffing.

Care home residents rely on primary health-care professionals, and general practitioners (GPs) in particular, for access to medical care and referral to specialist services, including continence services. 4–7 Public funding for care varies by region,8 and a recent review of health service provision to care homes9 concluded that access to specialist services is unpredictable and inequitable.

Residents living with dementia

Almost all care home residents have three or more health conditions, with 80% living with dementia, one-third of whom may be at the advanced stage of the disease, although a diagnosis is not always documented. 7,10 In clinical practice, severe or advanced dementia is variably defined but usually includes almost complete loss of memory and recognition, severe dependency in everyday activities, poor or absent communication, incontinence and poor mobility, and often swallowing difficulty and weight loss. 11 Reisberg et al.,11 in their review of severe dementia and how the stages of dementia are assessed, define the phase of severe dementia as that time when:

. . . the cognitive deficits are of sufficient magnitude as to compromise an otherwise healthy person’s capacities to independently perform basic activities of daily life such as dressing, bathing and toileting.

p. 8311

Care homes have been crucial in the service response to the rapidly increasing number of people with dementia who need this kind of continuous care and support.

Faecal incontinence prevalence, evidence, guidance and impact on residents and staff

Faecal incontinence is the involuntary loss of liquid or solid stool that is a social or personal hygiene problem. 12 The prevalence of FI in people aged > 80 years is estimated to range from 12% to 22%. 13,14 Epidemiological studies have identified dementia as an independent risk factor for FI,15–17 and a study of primary care patients found FI to be four times higher in people with dementia than in a matched community-dwelling sample with FI but without a diagnosis of dementia. 18 Studies suggest that the prevalence of FI in care homes is between 30% and 50%. 15,19–23 The level of variation is believed to reflect differences in care and the way in which continence is defined (by frequency, amount and detection method) as well as the individual characteristics of older people. It is unclear how dementia has an impact on a person’s gut and anal sphincter, but there is a widely held, albeit untested, view that eventually everyone with dementia will become incontinent if they live long enough. 11

The evidence about the prevention and treatment of FI in care homes is variable. Although there is evidence about risk factors and associations, there are few intervention studies. Research on continence care in care homes tends to focus on UI. 24–27 It is also important to understand the ways in which public funding is deployed for continence care in care home settings and any consequences for FI management at the individual and organisational levels.

The most recent Cochrane systematic reviews of interventions for the prevention and treatment of FI found no randomised controlled trials (RCTs) focusing specifically on people living with dementia (PLWD) in care homes. 28–30 Care home residents can experience dermatitis, discomfort, delirium and unplanned hospital admissions secondary to FI. 31,32 FI frequency is strongly linked to negative impact on quality of life. 33–37 It affects opportunities for social interaction and stimulation and can compound the isolation created by living with dementia. 38 Dealing with FI may also affect care home staff turnover and morale in a workforce that is already low paid and receives little clinical support. 39 The effectiveness of programmes to address the known problems of FI in care homes is, therefore, contingent not only on specific bowel-focused interventions, but also on contextually situated decision-making. 40 Interventions designed to improve FI for PLWD in care homes will perforce be multicomponent, shaped by the choices and behaviours of those delivering and receiving the care, and be characterised by a context-dependent effectiveness.

National and international guidelines33,41 emphasise that all patients with FI should be assessed for treatable causes, regardless of their cognitive status. Particularly relevant to care home residents living with dementia are overflow from faecal impaction and FI from loose stools, both of which can be assessed and managed in the care home setting. Treating constipation has been found to be effective in improving overflow FI and reducing staff workload (based on soiled laundry counts) by 42% in those with effective bowel clearance. 42 Loose stool may be a result of reversible causes, such as dietary intolerances, medication side effects including laxative use,21,43 and antibiotic-related diarrhoea. 44 For patients living with dementia who lack cortical control of the defaecation process, and who void a formed stool following mass peristaltic movements, prompted or scheduled toileting (preferably after meals) can increase the number of dependently continent bowel movements. 45,46

In 2012, a specific care home continence audit, educational and care planning tool was piloted in the UK. This highlighted some of the process and organisational problems that can be barriers to implementing FI programmes. 47 Ageism, lack of training, pad restrictions due to cost control and poorly integrated services were identified as likely contributors to low standards of care for FI. A review of local continence guidelines in England48 revealed a paucity of dementia-specific information.

There is, however, an extensive, more general care home and dementia-specific research literature, including intervention research, on the impact of the leadership, culture of care and care home routines on residents’ health and well-being. 49 Care home studies that are relevant but do not focus specifically on FI include those on nutrition and hydration,50 patterns of meal times,51 medication use52,53 and activities of daily living. 54,55

Some studies based in care homes can also offer transferable learning about how interventions are developed and implemented. For example, research to support people living with depression or identify residents at risk of unplanned hospital admission has moved towards advocating interventions targeted at specific subgroups rather than care home-wide strategies. 56 Others query the sustainability of interventions that were not developed in collaboration with staff and in consultation with residents or their representatives, and how to maintain clinician involvement. 6,57,58 It is the complexity of the relationships between evidence use, care experiences, quality of life and overall standards within care homes that pose particular challenges for intervention studies. 59

We now turn to report the methods of the realist synthesis.

Concept and theory development by the team

A realist synthesis often uses input from content experts to help develop programme theories. In this project our Research Management Team (RMT) and Study Steering Committee (SSC) included many of the national experts in the field of continence care and care home research in the UK (see Appendix 1). The first RMT meeting in September 2014 included an open discussion by the team in which they were asked to draw on their expertise to articulate:

• the dominant approaches and assumptions that informed current thinking about what supported (and how) the reduction and management of FI

• important outcomes and how impact was measured.

The full notes from this meeting are included in Appendix 2. After the meeting all RMT members were asked to send relevant reviews, papers or guidelines that had been referred to at the meeting to the core team. The early progress was reported to the SSC in November 2014.

Scoping interviews

To complement the expertise provided by the team we interviewed key stakeholders. They were identified through the clinical and research networks of the RMT, and five key groups were identified and approached to inform the scoping process (Table 2).

Interviews

Interviews were conducted either one to one or in a group by Claire Goodman, Marina Buswell and Bridget Russell. All interviews were face to face. Interviews were recorded, when possible, and transcribed. A set of interview prompts was developed and tailored to reflect the focus and expertise of each group. We wanted to explore:

• participants’ experience of working with and for people with dementia and FI in care homes

• estimates of how severe FI is in care home residents

• why they think FI occurs

• what good continence care looks like and what is necessary to achieve that and why

• who needs to be involved in providing and reviewing care

• how having dementia specifically affects continence care, assessment and decision-making, and what needs to be in place to address the effects of dementia

• how they would define success from the perspective of the resident, the care home staff, visiting clinicians and family carers

• when and why the decision would be made to use pads.

All participants highlighted the importance of person-centred care. The interviewers sought to understand how this approach to care was articulated in the assessment, care and review of continence care provided in care homes. In many of the interviews the prompts led to narratives of success and failure with particular residents; these examples demonstrated the participant’s understanding of what needed to be done and what good care looks like.

Literature scoping: phase 1

Selection and appraisal of documents: phase 1

Frances Bunn, Claire Goodman and Bridget Russell carried out the first searches and selected studies for initial inclusion based on the broad themes outlined by the RMT. A Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) diagram was produced, although as the review progressed it did not capture the iterative process of searching, selecting and appraisal of documents for this process (ultimately replaced by a flow diagram; Figure 2). A summary of this scoping search was presented to the RMT in January 2015.

FIGURE 2.

Document flow and review of progress: conceptual diagram. CH, care home; PCC, patient-centred care.

Analysis and synthesis processes: phase 1 (concept mining and theory development)

Searching processes: phase 2

In March 2015 the scoping searches conducted in phase 1 were refined and expanded to include additional evidence sources (see Appendix 4). The RMT agreed that literature regarding facilities other than care homes was unlikely to add to what had already been obtained; however, relevant UI literature and care home studies with transferable methods and similar aims were to be included.

We included studies of any design including RCTs, controlled studies, effectiveness studies, uncontrolled studies, interrupted time-series studies, cost-effectiveness studies, process evaluations, surveys and qualitative studies of participants’ views and experiences of interventions. We also included unpublished and grey literature, such as policy documents and information about locally implemented continence programmes or proceedings, which could provide a model for future practice or merit future evaluation.

The search was limited to papers published between 1990 and 2014, although we did include seminal papers from earlier, such as the work of Tobin and Brocklehurst,68 and those identified from lateral searches. There were several reasons for this time limit. Health-care research in care homes is a relatively recent phenomenon. Gordon et al. 69 identified that of 292 RCTs conducted in care homes between 1974 and 2009, half had been published after 2003. Dementia research has been significantly influenced by the work of Kitwood,70 whose seminal work was first published in 1990. Furthermore, the organisation and funding of care homes was radically altered in 1993 by the implementation of the 1990 National Health Service and Community Care Act. 71 This led to progressive changes in the overall size, ownership and structure of the sector. The increased emphasis on domiciliary care has also meant that the level of dependency and frailty of older people now admitted to long-term care has increased. 72

Previous dementia reviews undertaken by members of the project team73,74 have highlighted the importance of lateral searching for identifying studies for dementia-related reviews. Therefore, in addition to the above electronic database searches, we undertook the following lateral searches:

• checking of reference lists from primary studies and relevant systematic reviews (snowballing)75

• citation searches using the ‘cited by’ option on Web of Science, Google Scholar and Scopus and the ‘related articles’ option on PubMed and Web of Science (‘lateral searching’)

• contact with experts and those with an interest in dementia, care homes and FI to uncover grey literature (e.g. National Library for Health Later Life Specialist Library, Alzheimer’s Society, Royal College of Physicians, Royal College of Nursing and The Queen’s Nursing Institute)

• contact with disease-specific charities and user groups, residents and relatives associations

• internet searches for grey literature and searches for continence-related evaluations or intervention research that makes specific reference to FI and/or people with a dementia diagnosis, national inspection and regulation quality reports by the UK regulator (Care Quality Commission and predecessors).

Four overlapping searches were completed that built on and expanded the search completed in phase 1 (see Appendix 4).

• Searches 1a and 1b searched for evidence on care home research, either continence or FI related, that included PLWD, and care home research covering implementation or patient-centred care (PCC) that included people with dementia.

• Search 2 focused on continence literature in care homes that may be about factors associated with FI, such as the use of incontinence pads or constipation.

• Search 3 focused on research in care homes for people with dementia that concerned nutrition and/or hydration in the care home population. We were interested both in whether or not this research mentioned outcomes relevant to FI or continence generally and in discussion about how eating and drinking interventions may be implemented.

• Search 4 focused on literature on continence care for people with learning disabilities living in residential care.

As the review progressed, and particularly the idea of needing to fit into care home routines, wider literature that discussed the impact of care home routines and working practices was consulted by team members (see note on bias in Strengths and limitations of the review). Further papers, professional journals and books were identified through lateral searches, alerts from professional networks, recommendations from the SSC and conference abstracts.

Theory development: phase 2

In parallel with the second phase of literature searching just described, mid-range theories were developed. This process is represented in Figure 2 and the results of theory development are described in the results. Six mid-range theories or ‘theory areas’ were developed and assessed against the selected literature using the data extraction process described in Data extraction: phase 2.

Selection and appraisal of documents: phase 2

Data extraction: phase 2

The second phase of data extraction took place from July 2015 to October 2015.

Synthesis

The process of synthesising the data from the individual DASFs included:

• the organisation of extracted information into evidence tables representing the different groups of literature (i.e. care home interventions, FI and UI and person-centred care)

• theming across the evidence tables in relation to the C–M–Os and emerging patterns of association seeking confirming and disconfirming evidence

• linking these observed demi-regularities (patterns) to develop hypotheses.

Integral to this process were cross-team discussions about the integrity of each theory and the competing accounts of why interventions did or did not work. This included a consideration of the unintended consequences of some approaches to continence care: what appeared to be true regardless of setting (e.g. by national care system or presence or absence of clinical staff), what was a setting-specific outcome, what were intermediate outcomes (e.g. changes in staff behaviour and knowledge) and what was a FI-specific outcome (e.g. reduced episodes of FI).

The findings were discussed by the core team and with some members of the wider team. In addition, a full draft was circulated to the team for detailed comment. Time constraints meant that it was not possible to hold a second workshop with the RMT as originally planned. Moreover, the team considered that at this stage it was more important to focus on presenting and discussing the findings and resultant hypotheses with the stakeholder groups. Initially, we had proposed that these would be presented to the stakeholders as a series of C–M–O links and the characteristics of the evidence underpinning them. The nature of the evidence (and lack thereof) ultimately led the team to focus on the development of programme theory that posited the likely C–M–O configurations that would lead to improved continence care.

Public and patient involvement

The proposal was circulated and discussed with members of the public and patient involvement group at the University of Hertfordshire and amended accordingly. In addition to public and patient involvement representation on the SSC (Paul Millac), engagement with user and patient representative groups was key to stages 1 and 3 of the synthesis. There was public and patient involvement in the National Care Home Research and Development Forum meeting, during which emergent findings were discussed.

It was not possible to involve residents with dementia and experience of FI in the study. Karen Cummings and Victoria Elliot of the Orders of St John Care Trust care home group provided input to the RMT and SSC as individuals with direct experience of providing and managing continence care in care homes.

Scoping: phase 1

Search results

The first electronic search focused on incontinence and care homes, person-centred care and implementation in care homes. This resulted in > 1000 hits, of which 75 were deemed potentially relevant. These were then reduced to 31 priority records for in-depth review. Additional searches around FI and the use of pads, nutrition and hydration (systematic reviews only) and learning disability resulted in 193, 10 and 20 records, respectively (see Figure 2 and Appendix 4). These, along with some papers from lateral searches, informed the first overview presented for discussion to the SSC and the RMT.

Scoping summary

The literature was summarised for the RMT into four broad topic areas:

1. biomedical approaches to the assessment and management of FI

2. person-centred care

3. care home implementation

4. nutrition and dementia in care homes (reviews only).

For each area, a summary was provided of the interventions, the outcomes measured and the reported barriers and enablers (see Appendix 2).

Analysis and synthesis processes: phase 1 (concept mining and theory development)

The RMT meeting in January 2015 mapped the findings (literature scoping and stakeholder scoping) to a framework that considered the different types of FI, as defined by the work of Saga,76 that reflected a trajectory from continence to incontinence. Initially, it helped to conceptualise whether or not a particular type of FI intervention/approach would be more amenable to management (i.e. it may be time limited or could be treated and reduced) or to containment (treatment not possible).

‘If . . . then’ statements

A set of ‘if . . . then’ statements were produced ahead of the May RMT meeting based on earlier discussions and iterations. They were divided into:

• ‘What to do?’ – intervention/management to address review objective 1.

• ‘How to do it?’ – implementation, sustainability and feasibility to address review objectives 2 and 3.

‘How to do it?’ was further split into the ‘level’ of the intervention, staff, care home and wider organisational/policy, to ensure that the different audiences for the review findings were kept in mind. Table 5 gives some examples of these statements and a fuller version with more statements and cross-referencing to the literature is included in Appendices 2 and 3.

The statements aimed to capture the range of possible theories/contexts/mechanisms suggested by all of our stakeholders and the literature viewed to date. We included a section for enablers and barriers if we felt that they were cross-cutting or not fully captured in the statements.

The RMT were asked if these ‘if . . . then’ statements:

• covered outcomes sufficiently, for example comfort, minimisation of distress, reduction of FI episodes, reduction of FI (incidence vs. prevalence) resource use, restoring normal bowel function and staff outcomes

• fitted with professional understanding of how continence is defined and understood, for example the International Continence Society paradigm, independent continence, dependent continence and containment

• addressed dementia factors well enough

• could be collapsed further.

Prototype data extraction form

We piloted the phase 1 data extraction form with five papers. This resulted in the addition of 10 new fields, most of which annotated additional possible outcomes from FI-related interventions. The different literature sources consulted in the scoping included research on continence care in care homes, person-centred care and psychosocial interventions in care homes and related FI- or dementia-specific studies. The data extraction form fields of particular interest at this point in the study were the implicit or explicit study hypotheses about what was likely to support good (continence) care for care home residents.

Discussions among the core team about the original data extraction form, the ‘if . . . then’ statements and the flip chart diagrams and mapping we had produced were pulled together in a conceptual diagram77 that mapped outcomes, contexts, barriers and enablers (Figure 3).

FIGURE 3.

Conceptual diagram mapping outcomes, contexts, barriers and enablers.

Narratives

General narratives were written that kept the team up to date on the flow of ideas. As working papers for the team, they did not have a clear distinction between methods, results and discussion. These are all held together in a narrative format (see Appendix 2).

• FINCH working paper: presented to the RMT in May 2015.

• Flow of ideas from the six theory areas emerging from the RMT in May 2015: sent to RMT members in August 2015 to help with data extraction.

• FINCH ideas flow paper; presented to the SSC in September 2015.

These narratives suggested that we return to thinking about dementia. The following excerpt summarises our thinking:

We are concerned that we lose the focus on (advanced) dementia as in so much of the evidence this is not described in particular detail and because it is care homes there is an implicit (correct) assumption that most residents have a degree of cognitive impairment. We suggest that we need to always keep dementia as a context with the other contexts and so always think, ‘with these contexts, this mechanism triggers such and such; how does dementia affect that?’ (However, going back to Kitwood dementia in itself isn’t the context, because when you’ve met one person with dementia, you’ve met one person with dementia . . .) Should we be listing some of the behaviours and morbidities and psychological symptoms of dementias as contexts?

Log book notes RMT meeting May 2015

The narratives took a historical view of the literature in the sense of understanding how research in continence, particularly FI, has developed over time and, similarly, how research in care homes has developed.

There were two main strands to these narratives. The first was to understand how best practice in the treatment and management of FI, when relevant to older PLWD, is articulated in professional guidance and reviews. The second was to identify the potential for transferable learning from research with older PLWD in care homes, but that was not continence specific.

The first strand summarises the guidance and review articles relevant to the management of FI in older people living in care homes/long-term care. This is presented in a timeline format (Figure 4) and demonstrates how thinking about FI is discussed for health-care professionals and where the sources of evidence and guidance are located. The importance attributed to assessment and the diagnosis of faecal impaction is emphasised. There is limited acknowledgement or guidance about how to implement this essentially biomedical guidance (e.g. careful examination of the anorectal region is recommended) in settings with limited access to clinicians and lack of discussion about how to implement assessment or treatment options for PLWD. A strong theme that emerges is the belief that direct clinical assessment is essential but that there is little direction on how this could be achieved, particularly in care home settings for PLWD.

FIGURE 4.

Timeline of guidance and review articles relevant to the management of FI in older people in care homes/long-term care.

The second strand considers the potential for transferable learning. Essentially, there is a body of continence research in US nursing homes (some of which is focused on FI) by Ouslander et al. ,45,93,94 Leung et al. ,95,96 Levy-Storms et al. ,97 Rahman et al. 98,99 and Schnelle et al.,100–106 but there is little consideration of the impact of dementia on continence or implementing the interventions (based around PV). There is also a body of literature on the non-pharmacological approaches to the reduction and management of behavioural and psychological symptoms of dementia (BPSD) in UK care homes by Ballard et al. ,107 Fossey et al. ,108,109 Lawrence et al. 110,111 and Whitaker et al. 112,113 We theorised parallels between the experience of FI and BPSD and the use of ‘containment’ as the predominant but not ideal approach to management:

• There is stigma and revulsion at FI and BPSD.

• Containment is the ‘easier’ option (either pads or antipsychotics).

• Alternatives to this option (PV for FI and psychosocial interventions for BPSD) are difficult to implement and need to draw on the assumptions of individualised care and person-centred approaches.

Figure 5 demonstrates how both these programmes of work have developed over time from a specific intervention through multicomponent intervention trials to more detailed work around implementation in the care home/nursing home setting. The continence studies give specific results around FI and the BPSD studies on working with PLWD. The learning from these programmes of work suggests that training, learning, mentoring and post-training support are important contexts but do not, of themselves, lead to staff engagement and motivation to change practice or care routines.

FIGURE 5.

Schematic showing of the development over time in two research groups of a common understanding of the need for multicomponent interventions and the complexity of implementing new practices in care homes. QoL, quality of life.

In addition, the recent work on the prevalence and management of FI in Norwegian nursing homes76 confirmed earlier discussions by the RMT that double incontinence is more prevalent than FI alone and that double incontinence is associated with more cognitive impairment.

Outcomes

We categorised outcomes identified in the phase 1 scoping work as resident, staff or organisational outcomes. These outcomes were identified from the phase 1 stakeholder input (interviews, focus groups and RMT and SSC discussions) and from the continence, PCC and care home implementation literature reviewed in phase 1. This is summarised in Table 6, which clearly shows the different outcomes prioritised between the different research perspectives. Particularly notable are the gaps between the resident outcomes in the continence literature (which has more of a biomedical focus) and the PCC and care home intervention literature (which has more of a quality-of-life focus). Distress and improvement in symptoms are noted in both.

Outcomes identified by stakeholders and not explicit in the research literature include resident outcomes of comfort and dignity, staff outcomes of change in attitude and work satisfaction, organisational outcomes of workforce turnover and organisational reputation. These staff and resident outcomes identified by stakeholders as important for PLWD in care homes who experience FI are more aligned to the outcomes measured in dementia care and care home implementation studies.

Cost outcomes are not well defined by studies or stakeholders. Resource use is broad and not care home specific (staff, buildings, laundry, continence aids and prescribing).

The use of pads to manage FI is the most common continence aid used in care homes. The following provides an account of the literature on this topic and related outcomes; however, we did not extract data from the majority of the literature. There was insufficient detail to test our programme theories in the evidence reviewed. The impact of a person’s dementia, the level of staff preparedness and how use was linked to clinical assessment were not discussed.

Literature on use of continence aids for care home residents

The initial searches identified only one study on the use of pads. This study114 focused on the incorporation of a pocket with wipes in the design of the pads. It tested how this design change affected pad changes, and how staff used the equipment/resources available.

A further scoping by Mandy Fader considered a wider literature on absorbent pads and products (colloquially known as ‘pads’) that was not necessarily dementia or care home specific. This literature on the management of FI with products can be broadly divided into three areas:

1. management of FI with absorbent products

2. incontinence-associated dermatitis and development of pressure ulcers

3. management of FI with mechanical devices.

Dementia

The International Classification of Diseases, Tenth Edition (ICD-10),134 defines dementia as a disorder with deterioration in both memory and thinking that is sufficient to impair personal activities of daily living. The definition requires that the patient have deficits in thinking and reasoning in addition to memory disturbance. The Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition135 (DSM-IV) defines dementia as a syndrome characterised by the development of multiple cognitive deficits including memory impairment and at least one of the following cognitive disturbances: aphasia, apraxia, agnosia and a disturbance in executive functioning. The deficits must be sufficiently severe to cause impairment in occupational or social functioning and must represent a decline from a previously higher level of functioning. The lack of continence studies addressing dementia and an inconsistency in how dementia is assessed and recorded for care home residents, coupled with the lack of consensus on how to define advanced dementia in relation to continence care, meant that the working definition of advanced dementia was loosely defined and sometimes had to be inferred when undertaking the review.

Continence

The protocol definition and starting point of the review was ‘leakage of solid or liquid stool that is a social or hygienic problem’;41 the sense that it can be a ‘social or hygienic’ problem did not capture the behavioural aspects of FI that had been raised in scoping.

The scoping of the literature identified two ways of defining and categorising different types of continence for older people with dementia and, specifically, FI. Saga76 provides a list of clinical or physiological causes that identifies dementia-related incontinence as a particular cause of FI. Stokes,136 in contrast, sees incontinence and specifically FI as a single factor (of nine causes or contexts) for ‘toileting difficulties’ (Table 10).

Stokes’ definition of incontinence has an emphasis on behavioural issues that arise from living with dementia: ‘The voiding of urine or faeces, either following an unsuccessful effort, or with no apparent attempt to employ an acceptable facility (e.g. toilet, commode, urine bottle)’. Examples of behavioural incontinence (or toileting difficulties) include:

• parcelling (e.g. wrapping and concealing the evidence in drawers or cupboards)

• wetting or soiling clothes – while sitting or lying in bed (passive)

• wetting or soiling clothes – while standing/walking (active)

• using an inappropriate receptacle (e.g. bin, fire bucket or sink)

• urinating against a wall or radiator

• smearing.

Drawing on person-centred care approaches, Stokes136 posits a theory of a pathway to successful toileting in PLWD. This includes:

• recognising the need to initiate and postponing within limits the act of voiding (failure = incontinence)

• being motivated to use the toilet

• possessing the physical strength and steadiness to stand

• possessing the mobility and confidence to cover the distance to the toilet and overcome any obstacles along the way (e.g. floor coverings, stairs or outstretched legs of others)

• maintaining goal-oriented behaviour

• being able to locate the toilet (or acceptable alternative)

• perceiving and experiencing the toilet as accessible, safe, hygienic and private

• possessing the dexterity and co-ordination to adjust clothing

• initiating the act of voiding.

Faecal incontinence in this definition is recognised as having multiple causes that may include constipation, cortical atrophy, neuropsychological, sensory disability, physical disability (mobility and dexterity), medication effects (sedatives, antidepressants and diuretics) and psychological factors (personality, habits, life experience and mood). All of these can be compounded by the built environment, for example distance to the toilets, obstacles, visual access, signage, and the actions and attitudes of others.

Theory development

Initially, the ideas presented in phase 1 (as narratives, barriers and enablers, ‘if . . . then’ statements, diagrams and concept mapping) were presented to the research team in linked statements as the factors that were recognised as important when supporting care home residents living with dementia and FI (Box 3).

These linked statements provided an overview of the issues rather than the specifics of how the reduction and management of FI in PLWD resident in care homes may be achieved. It did not address the detail of the process of care or the insights gained from scoping interviews as to the ways in which care staff, clinicians and managers are constantly negotiating the trade-offs between different resident, care home and staff priorities. Neither did they address the links between constipation, faecal impaction and its assessment and management in the care home.

The core team took this feedback and developed a set of six potential mid-range theories and their possible C–M–Os. The purpose was to make explicit certain underlying assumptions and look for confirming or disconfirming evidence in the literature.

These assumptions, the ideas people have about what is most important or would really make all the difference, are listed below as six statements:

Well really the most important thing to address is . . .

. . . making sure people get a proper assessment by a clinician.

. . . staff training.

. . . constipation and impaction.

. . . implementing person-centred care.

. . . the nihilism of staff, the fact that many believe incontinence is inevitable.

. . . how FI care fits with the everyday workflow and patterns of the care home.

These are expanded in Box 4 into mid-range theories with potential C–M–Os.

Sources of evidence and review

As described in Chapter 2, 62 sources were selected, and DASFs were completed for each one. Box 5 gives an overview of the literature based on the research area they are from and the type of literature (e.g. intervention study, observational study, policy document). Appendix 7 gives greater details, including country, setting, methods, study outcomes and which of the six theory areas they relate to.

The sources included eight RCTs: quality assessments were completed for each of these using a modified version of the Cochrane risk-of-bias tool. Three were assessed as having low risk of bias and the remaining five had a moderate-to-high risk of bias (see Appendix 8).

Analysis and synthesis

Once completed, the 62 DASFs contained notes of whether or not the source had relevant evidence to the six theory areas (either confirming or disconfirming). They also had multiple C–M–O configurations specific to the evidence source. This process of reflecting on the strength of the evidence to support the initial assumptions and theory areas, producing very specific C–M–O configurations, led us to an articulation of the possible programme theories and underlying C–M–O configurations at work.

We present the findings by theory area in the order that gives the best narrative flow (different from the list in the DASFs, which was given in no particular order of significance).

Theory area: clinician-led support and review

Sixteen of the 62 sources had evidence that was relevant to this area. Eleven gave rich and detailed descriptions and are discussed in Appendix 8. The evidence from the studies reviewed for this set of C–M–O configurations (Table 11) suggests that clinician assessment and review is important. There is some indication that when clinicians (specifically geriatricians in the research cited) apportion time and energy to working with care homes,68,106,138,139 they drive improvements in the presence and management of FI. We found no evidence for the contexts and mechanisms proposed but this was mainly because the papers did not give enough detail to assess them.

The seminal text by Tobin and Brocklehurst68 demonstrated that a geriatrician completing an assessment including digital rectal examination and giving clear directions to GPs and district nurses can achieve compliance with the prescribed treatment (e.g. management of constipation) in two-thirds of residents. Key to this process was the engagement of other visiting clinicians and the heightened attention on residents’ continence that arose from the extra resource generated by the intervention. This paper was a source document for many subsequent publications of evidence that clinician-led assessment is an important contextual factor in the reduction and management of FI.

We found no studies on the role of clinical assessment and review for the management of UI or FI for older PLWD in care homes. Indeed, in the discussion of their findings in a study investigating factors contributing to FI in older people, Akpan et al. 140 suggest that the ‘simple measures’ used by Tobin and Brocklehurst68 no longer apply in care home populations:

In their landmark paper, Tobin and Brocklehurst (1986) demonstrated the potential for improvement in the care home sector using simple measures. These included daily enemas followed by lactulose and weekly enema for those with faecal loading and codeine phosphate daily with twice weekly enemas for those with anorectal incontinence. The FI did not resolve in any of the nursing home subjects in the current study. This issue needs to be considered in future work as either the original study does not apply to the current nursing home population, or the findings are not being implemented, or both.

p. 143140

The only study that looked at the role of clinician assessment for FI in care homes is 30 years old and was of a population that was younger, less frail and less cognitively impaired than the care home populations of today. 141 A more current finding around clinician assessment and involvement in the support of care home residents is from a paper on antibiotic prescribing and associated diarrhoea. 142 Three-quarters of the 274 residents in the study were prescribed antibiotic during the 16-month study period and 43.5% of residents had had at least one episode of antibiotic-associated diarrhoea. Residents in care homes were more likely to be prescribed antibiotics if they were resident in a care home with on-site nursing (a nursing home) or if they routinely used incontinence pads. The authors suggest that the potential benefits of antibiotics should be considered against the possible side effects of diarrhoea. For the purposes of this review, the paper highlights the unintended consequences of clinician involvement leading to what could be wrongly construed as FI.

Most of the review articles and guidelines describe prevalence and aetiology of FI in older people and recommended treatment options (see Figure 4). Reviews and guidelines highlight the importance of taking patient history, including direct questioning, because of the social stigma associated with FI:

Many patients feel too embarrassed to volunteer information about FI . . . Therefore a high index of suspicion and low threshold for directed history from patients and caregivers, and a careful physical examination, are the keys to early diagnosis and adequate management of this embarrassing medical and social problem.

p. 5887

Physical examination and available diagnostic tests are described and the high prevalence of FI in physically and cognitively impaired patients is noted but advice or details on how to take a history and complete examinations in patients with dementia are not provided. The difficulties of achieving the ideal level of investigation and assessment, especially in long-term care facilities, is noted by some of the authors. The descriptions of conservative treatment options, however, mask the complexity of delivery and provide minimal detail about what needs to be done to achieve what are described as ‘simple measures’. For example:

Older persons with dementia may simply need to be directed to the toilet or reminded of such use at regular intervals. Physical limitations and obstacles in the environment need to be addressed if they are contributing to the incontinence, as they can often be overcome by simple measures, such as easier access to toileting facilities and assistance for those who require it with their activities of daily living.

p. 579143

And:

A custom-tailored approach is required with judicious use of compassionate nursing care, relief and prevention of constipation, programmed toileting, exercise, pharmacological and behavioural therapy, and surgical intervention, as indicated (though it is noted earlier in the piece that, ‘Frail older patients with advanced dementia and inability to cooperate are not good surgical candidates. FI in these patients may be managed by planned and alternate use of constipating agents and laxatives’).

p. 54–6087

The NICE guidance for specific groups92 suggests that a behavioural and functional analysis should take place if the initial assessment and management of FI has not worked. Although part of the recommended initial assessment is a cognitive assessment, the guidance does not provide guidance about what should be done if the person is found to have significant cognitive impairment.

In addition, in their conclusions from a 2013 review of the ‘factors with the management of incontinence and promotion of continence in older people in care homes’, Roe et al. 27 show that the belief in the importance of full clinical assessment is common. When discussing what is needed to avoid incontinence dermatitis and promote good skin care in people with UI and FI, they state that ‘this will undoubtedly involve a multidisciplinary approach with full clinical assessment of incontinence’ (emphasis added).

Another source relevant to this theory area was a paper looking at the ethical challenges associated with providing continence care in Australian care homes,144 which cited a lack of access to registered nurses (RNs) for the direct care staff as a barrier to good care, ‘. . . and RNs were not always physically present at facilities causing participants to express they felt alone and unsupported’. In addition, the 2007 audit of continence care145 observes that care homes simply enact a management plan from prior assessment of FI and that assessment of FI in this setting is inadequate.

Also relevant to this theory area is the US programme of nursing home studies led by Schnelle and Ouslander (Figure 6). These authors have been investigating interventions to improve continence for people living in nursing homes since the 1980s and were considered in respect to this theory area because the prompted toileting intervention is promoted by clinicians and involves a certain level of assessment and review. Over the course of their studies there has been a shift in thinking, moving from the implementation of strategies that address one aspect of continence care to multicomponent interventions that include staff training courses designed to accommodate workplace demands on care home staff time and availability. Although clinician-led, the studies do not investigate clinician assessment and review.

FIGURE 6.

Timeline highlighting the key Schnelle group of studies of interventions to improve continence in nursing home residents, showing the alteration in focus from single to multicomponent interventions.

Continence management specifically related to PLWD is not directly investigated in this programme of studies by Schnelle and Ouslander; however, the authors recognise that dementia increases the probability that people living in nursing homes will develop incontinence. The studies do not explain how the increasingly complex interventions are thought to work or for whom they are thought to work for, but they do signal a recognition of the multicomponent nature of continence interventions and their reliance on staff engagement as a key mechanism of interest. In addition, as noted in the introduction to this report, these authors recognise the particular benefits of prompted toileting for people with dementia ‘who lack cortical control of the defaecation process, and therefore tend to void formed stool following mass peristaltic movements’. 45

One of the early RCTs conducted by Ouslander et al. 45 epitomised their approach to improving urinary and faecal continence. The intervention involved 2-hourly toileting conducted by researchers for 12 hours each day; randomisation was on a unit-by-unit basis. The research team interviewed staff to ascertain the residents’ normal toileting patterns and collected baseline data about wetness and soiling for 3 days. The intervention was continued 5 days per week for 9 or 10 weeks. Of the 165 residents who participated in the study, 77 (46%) responded well to the PV to improve UI. Although the study was designed primarily as an intervention for UI, overall there was a statistically significant improvement in the number of continent bowel movements and an overall increase in the frequency of bowel movements after the initial 7- to 10-day period. The authors suggested that this could be a result of the marked increase in mobility of the residents because of the intervention, and that the residents were offered fluids with each prompt and so faecal impactions may have been resolved. There was no alteration in laxative use by residents.

Although none of the studies was designed to assess the impact of the intervention in relation to the functional abilities of the person living with dementia, it is interesting to note the researchers’ observations in one of the early studies of PV and their observation about the difficulties of documenting improvements in quality of life:45

Particularly noteworthy that some residents whose urinary incontinence did not respond well to prompted voiding had improvement in their bowel continence. This suggests that some type of prompted toileting program may be of benefit even for those residents whose urinary incontinence does not markedly improve, especially since faecal incontinence is highly associated with the development of pressure sores and is extremely unpleasant for nursing home residents as well as caregivers. Given the reported distress of constipation in older adults, the increase in bowel movements we noted with prompted voiding may also contribute to an improved quality of life for some nursing home residents, though such improvements in quality of life are difficult to document among cognitively impaired incontinent nursing home residents.

Chassagne et al. 45

One of the later multicomponent studies102 was carried out in a nursing home environment in which a high proportion of people had dementia [intervention group, Mini Mental State Examination (MMSE) 12.9 ± 8.4; control group, MMSE 9.6 ± 8.4]. They found that PV seemed to particularly benefit some residents with cognitive impairment:

A result not previously reported was that subjects with more cognitive impairment were most responsive to prompted voiding. This finding is important because NHs [nursing homes] often exclude residents from programs because of dementia or other vague cognitive impairment criteria. It has been argued that such exclusions are not valid, and the findings from this study support this conclusion.

p. 1508102

In 2008, a review article of studies that implemented PV or scheduled toileting was conducted, with a particular focus on studies that also included a physical activity programme. 96 In the review, the most significant fall in FI was achieved by the intervention that combined PV with a programme of exercise and fluid intake. 147 As already noted, the improvement in bowel movements in relation to the intensity of the intervention was disappointing. The authors suggested this may have been because of a high prevalence of sphincter dyssynergia in nursing home residents with FI; however, we were unable to find any evidence that tested this.

After 2008, the Schnelle and Ouslander studies take one of two paths. One path continues to investigate and refine the elements of multicomponent interventions that involve residents directly, for example Schnelle et al. 102 The second begins to address the issue of implementation by creating staff training interventions. 98,99,146 These interventions are multicomponent and involve staff learning how to assess residents and implement the programme of PV, exercise and dietary and fluid intake. Staff were also given support and feedback during the implementation process to consolidate their learning and adjust the programme with regard to local factors. This leads into the second programme theory, in which the focus shifts to working with care home staff by providing ongoing teaching, review and feedback on residents’ FI-related outcomes.

Theory area: ongoing teaching and feedback for staff on the assessment and management of faecal incontinence

Linked to the arguments about the importance of clinician assessment is the assumption that giving staff access to the appropriate training, education and facilitation will result in a change in practice. In addition, the assumption is that feedback and review of learning will change the working practices of care home staff. This area is important to consider, as so many care home interventions employ a training, education or facilitation approach (Table 12).

Sixteen of the 62 sources had evidence relevant to this area, and six are discussed in detail in Appendix 7. Two were from the US nursing home PV group of studies,98,99 investigating training as a means of implementing PV. Three sources (two of which were reviews) were from the reducing antipsychotic prescribing and implementing psychosocial interventions fields of research in care homes. 108,111,148 A very recent pilot study directly addressed the ‘feasibility, acceptability and adherence of two educational programs for care staff concerning nursing home patients’ FI’. 149 The evidence suggests that although education, training and feedback are all important resources for implementing good practice in care, the setting in which they are delivered and how they are delivered are key. Therefore, the proposed C–M–O configuration stated is dependent on other important elements, such as how it actually fits with existing care home practices. These findings are discussed later.

Two studies used distance learning course work and coaching with staff from 48 nursing homes98 and webinars with seven nursing homes99 to support the implementation of PV programmes. They had limited success: the 2012 study had a one-third attrition and incomplete implementation of the programme at 7–8 months. There was a significant improvement in the knowledge of those who completed the course. The study provides insufficient detail to understand what elements of the training (what works) were working for which particular care homes (for whom) and what particular contexts were important (in what circumstances). The webinar-based training course99 introduced each step/concept (of PV) with gaps of between 1 and 4 weeks (C). The time scale of the training gave staff the opportunity to absorb and try their new knowledge and skills (M). In this study, the researchers changed the timings of some of the webinars based on feedback from the nursing homes. However, the context factor of ‘time to do training’ did not clearly link through to outcomes. The variability in length, intensity and content meant that it was difficult to disaggregate what aspects of the interventions did or did not influence staff uptake and utilisation of the programmes offered.

A similar picture emerged from studies investigating the implementation of psychosocial interventions in care homes as a response to the drive to reduce antipsychotic prescribing. The 2012 systematic review of psychosocial interventions111 raised a number of important contexts and mechanisms for other theory areas; however, specifically in relation to training and education, the authors noted that ‘training and mentoring programmes can require a substantial time commitment’, supporting the context that time allocated for training is as important as the content. A more recent qualitative study by the same group of authors110 with the objective ‘to contribute to an optimised training programme for care staff that supports the implementation of evidence-based psychosocial interventions in long-term care’ had richer descriptions and so enabled some C–M–O configurations to be drawn from their findings (Table 13).

Their results suggest that it is not simply having enough time to attend training that is a key context nor are the mechanisms for successful implementation the staff responses to having knowledge and skills. Rather, the shared understanding and enhanced status of the work leads to intermediate outcomes of better communication and staff feeling more valued.

Boersma et al.,148 in a review of psychosocial interventions in residential dementia care, found that, despite increases in staff knowledge, about half of the included studies demonstrated an improvement in staff attitudes and/or behaviour after training. Thus, the proposal that increase in knowledge will result in improved practice is only partially supported. It is possible to change staff behaviours through training but either knowledge did not increase or there are additional factors involved for which knowledge may be a necessary but not sufficient condition for behaviour change.

The hypothesis of the small but ambitious pilot study in 2015 by Blekken et al. 149 is ‘that faecal incontinence can be prevented, cured, or ameliorated by offering care staff knowledge of best practice’. The findings from this small study were equivocal. The authors had difficulty recruiting nursing homes and reported limited impact, and changes to the rates of FI were not sustained. The study-specific C–M–O configurations developed from this paper are given in Table 14.

In the discussion the authors suggest ‘for the main study, empowering RNs in the nursing role and helping them find ways to best organize the work on their own unit and give feedback to the rest of the care staff will be important’. This suggests that even the multicomponent training, which also included the recruitment of a local opinion leader and educational outreach visits, is unlikely to be sufficient. The evidence from this small study suggests that it could be important to look at the division of labour and status of different types of work in this residential setting.

The evidence from this review suggests that offering more training for care staff on FI with structured guidelines and a facilitator will not lead to better management or reduction of FI if it does not account for the work pressures of the care home.

Theory area: knowledge about the management of constipation for older people with dementia

A related proposition from the scoping work was that a focus on one particular aspect of bowel-related continence care, the management of constipation, could lead to improved outcomes for older PLWD (Table 15). This theory area overlaps with the clinician-led support and review theory area. The key difference is the argument that a focus on management of constipation, as a significant contributory factor of FI, would then trigger both a prioritisation of clinical assessment and medication review and those activities that supported bowel health, such as promotion of physical activity and improved nutrition and hydration.

The scoping phase identified two studies for which evidence pointed towards the need to deal with constipation to reduce FI. In addition, expert opinion from clinicians in our stakeholder interviews suggested that dealing with constipation could make a significant contribution to addressing FI-related problems. A controlled trial42 specifically asking if the treatment of constipation would improve FI in institutionalised elderly patients concluded that ‘when long-lasting and complete rectal emptying is achieved by laxatives, the number of episodes of faecal incontinence as well as the workload for caregivers is reduced’. Another study of 14 cases of faecal smearing (scatolia) as a dementia-specific characteristic of FI in older people with dementia found that all 14 people were constipated. 150

Twelve of the 62 sources had evidence relevant to this with six providing a particular contribution to theory testing. Two were from the Ouslander and Schnelle group of studies (see Figure 6). A 1996 study45 found that PV resulted in an increase in continent bowel movements and the authors proposed that ‘as the residents began to be toileted, moved and offered fluids, these [rectal] impactions may have been resolved, resulting in an increase in bowel movement frequency’.

A later paper, however, by Leung and Schnelle,96 discusses the use of softeners and laxatives as prophylactic treatment against constipation and impaction. The authors warn:

. . . in the presence of impaired sphincter function and decreased rectal sensation, the fluidity of the stool induced by the use of laxatives and stool softeners administered to prevent constipation and impaction may in fact predispose the nursing home residents to manifest FI.

p. 696

There were three studies (four papers)76,151–153 with a constipation focus that were included for data analysis and synthesis. The first paper151 about laxative use (and therefore constipation) noted the effect of ‘care home characteristics’ on the use of laxatives:

. . . our findings show that differences in laxative use exist between care homes beyond those accounted for by resident characteristics.

Gage et al. 151

A paper from the same study58 suggested that a change in pro re nata prescribing (and not clinician or carer assessment or practice), in other words the organisation of care, could explain these differences:

The review of residents’ notes did not identify an increase in bowel care-related planning in the intervention care homes. Nor did the benchmarking intervention prompt a review of laxative prescribing by district nurses. The reduction in laxative-induced diarrhoea was due to a change in the care home practice of routinely dispensing laxatives that had been prescribed pro re nata (PRN).

p. 58658

Dementia was a risk factor for laxative use, raising the possibility that linking dementia care with a focus on the management of constipation could lead to unintended consequences, such as an overuse of laxatives.

The second paper152 examined the effectiveness of a training and education intervention for constipation management across four different long-term care settings; it was one of the few studies that considered the experience and prior training of staff involved. The main outcome measures used in the assessment were staff knowledge and laxative use. Staff knowledge on constipation improved. There was some change in laxative prescribing but not in the care of the elderly (care home) setting, and the study did not provide information on resident diagnosis or characteristics. Both studies suggested that the education and training of care staff or visiting health-care professionals on constipation, apart from highlighting the possibilities of laxative-induced diarrhoea, were not likely to achieve improved FI-related outcomes.

The Saga-led studies76,153 on FI in care homes suggest that focusing on one aspect of continence can result in unintended consequences. Activities that would support good bowel care were superseded by a preoccupation of the nursing staff with a person’s bowel being empty. As this extended quotation demonstrates, it was a poor compromise:

. . . the findings were that constipation was the primary concern of registered nurses. To empty the patients’ bowels was the aim of preventive tasks and nursing intervention. Although some preventive measures were taken, faecal incontinence was mainly treated passively with diapers; which in turn likely compromised the patient’s need for well-being and dignity . . . FI and diarrhoea were not recognized as significant problems by the registered nurses, despite high prevalence of both. . . . Instead, due to hindering factors for good bowel care related to a challenging patient group, patient and family experience, physical and organizational working conditions and professional challenges within the nursing group, the registered nurses are compromising, making emptying of the patients’ bowels the most important task. This study shows that to improve bowel care among nursing home patients, structural changes founded in nursing management are necessary . . . To bridge the gap between patient needs and available resources, nurses are continuously making compromises, of which one outcome is exclusive focus on emptying the patients’ bowels rather than maintaining continence and good bowel care.

p. 9176

A preoccupation with one element of bowel care (an empty bowel) meant that staff did not consider pad use or episodes of FI as areas in which there was potential for change. This highlights the association between institutional and wider policies that improve one circumstance to the detriment of others. Table 16 summarises as C–M–O configurations the intended and unintended consequences of focusing on constipation.

This would suggest that focusing on the management of constipation to the extent that ‘emptying the bowels’ becomes the priority works against the ongoing assessment and review of residents’ care or staff beliefs that it is possible to improve outcomes. A mechanism that this approach lacks is one that connects new knowledge (the management of constipation) with the benefits for the resident, did they feel better and were they continent, as well as the wider concerns and activities of the care home. A doctoral thesis on care staff and care home working154 highlighted how a focus on one activity (in this case person-centred care at meal times to support resident choice and participation) had unintended consequences for the rest of the care home staff’s workload. The result was that they rushed other aspects of care in order to meet the expectations of what should happen at meal times:

The official understanding of the mealtime standards is that they produce pleasant dining experiences. However, what the regulatory pleasant dining experience accomplished in the staff and resident routines was a process of hurried practices that precluded possibilities for workers and residents to amble. The staff had to rush to complete their personal care work in order to get to the dining room.

p. 133154

There were two small care home studies that tested the feasibility of novel interventions for addressing constipation using transcutaneous posterior tibial nerve stimulation155 and mechanical vibration to provide abdominal massage. 156 Neither included PLWD and it was unclear who, apart from the research team, were involved and how the interventions could be implemented by care home staff for PLWD.

The conclusion from considering this theory area is that, although dealing with constipation may be important, an excessive focus on one specific factor (constipation) could have unintended consequences such as the overuse of laxatives and other areas of important care work and activities to promote bowel health being given lower priority. A focus on treating constipation without considering the individual needs of the person could have negative care outcomes. The next theory area then draws on the theory that the implementation and process of PCC will be key.

Theory area: interventions that reflect degree of cognitive and physical capacity of resident – personalised care planning

This theory area encapsulates the PCC approach to care in that knowing the person’s needs, wants and abilities, specifically in relation to toileting and continence, will reduce reversible FI. It links to a broader understanding of FI in PLWD as one aspect of toileting behaviours. It recognises that the personality of PLWD is increasingly concealed. 157 It is therefore important to prioritise the relationship as much as the care tasks. It is the personalisation of the person’s continence care and their environment and interpretation of behaviour from the person’s viewpoint that takes precedence (Table 17).

We found very little person-centred care literature that addresses continence or discussion in the wider continence literature of what a person-centred approach might involve.

There were only two studies that designed dementia-specific continence interventions158,159 and these were conducted in the early 1990s in an Alzheimer’s disease unit. Another study,160 from 1989, considered how the signs and symptoms of dementia affected nursing home residents’ ability to engage with interventions to reduce and manage UI. Of the 43 studies that addressed continence care in some form, only 20 included PLWD, and 16 of those had an assessment of some form for dementia. However, as noted above, only one considered the impact of dementia on the uptake of the intervention. Table 18 summarises the 20 studies and how dementia was measured and considered. It is striking that, apart from the acknowledgement that dementia is a risk factor for FI and that this increases with immobility, only three studies specifically address dementia behaviours and FI with the continence intervention. 17,68,140

The scoping, however, and the work of Stokes136 had suggested that approaches that recognised and addressed the personal history of PLWD were more likely to achieve improved toileting outcomes. The only paper169 that used a so-called personhood-centred care process to continence care in care homes and that included PLWD specifically excluded participants with FI. It developed as a standardised package of care for each resident, many of whom had dementia, and included changes to diet, fluids, physical mobilisation, toileting, massage, attention to environment and use of laxatives/manual evacuation. Results were promising in terms of reduction in constipation and in use of bowel-related interventions. The mechanism of interest (Table 19) may have been that staff were more likely to promote bowel health when the individual needs of the resident were systematically considered and linked to a standardised checklist. The study was small, and did not explain how the personalisation was achieved specifically in response to the person’s dementia.

To understand and test a theory of how personalised care, and specifically PCC approaches, could lead to improved outcomes, we searched a wider non-continence-specific literature. Thirty of the 62 sources had evidence relevant to this area; 15 had rich enough detail to inform theory and are discussed in Appendix 8.

The scoping established that although there was an extensive literature on person-centred care in care homes, very little of it provided detail about how it should be delivered and the kind of outcomes that were likely to be achieved. Work by Edvardsson et al. 157 suggested that a key contextual influence on how PCC is implemented is whether or not the people providing care have the authority and organisational permission to work in this way and this informed how we interrogated the wider care home literature on person-centred care.

Our synthesis and review reinforced these findings. Addressing person-centred care, Ericson-Lidman et al. 170 conducted a small-scale interview study among staff (n = 12) at one residential aged care home in Sweden. They found that the concept of person-centred care was poorly defined and there was a lack of staff understanding and little managerial support. These variables led to individual staff interpretations of person-centred care and contradictory responses to a given situation. The need to understand the detail of what constitutes person-centred care activities as they relate to continence and practice in the care home is illustrated by the work on the implementation of psychosocial interventions in English care homes of Lawrence et al. 110 They found that when emotional bonds between carers and residents are discouraged by managers, staff burnout occurs more frequently, leading to absence and higher staff turnover. However, when chatting and forming bonds with residents is valued, staff develop a person-centred working style and focus on residents as individuals with differing needs and preferences, rather than taking a task-oriented approach. 110

Three non-continence interventions that provided detailed accounts of using a person-centred care approach in care homes were identified. These focused on using PCC as an alternative to antipsychotic prescribing,108 the use of PCC compared with other approaches171 to reduce resident agitation and distress and interventions that are designed to minimise resistance to care when bathing residents with dementia. 172–174 One study,173 which aimed to improve morning care with an individualised abilities-focused approach, found no change in resident behaviour. This intervention included a one-off training session for staff but this was not developed in partnership with the care staff and did not appear to include facilitation.

Two US studies172,174 address bathing people with dementia living in care homes, activities that offer transferable learning for toileting and maintaining a person’s skin integrity. This intervention links the assumptions of PCC by attending to the relationship and interaction with the resident; using techniques that support enhanced communication and interpersonal skills; and adapting the physical environment and bathing procedures to decrease distress and discomfort. Both research teams considered the causes of resident distress and have developed alternative ways of bathing that achieve the dual aims of cleanliness and minimising distress. The evaluation by Gozalo et al. 174 demonstrated reduced distress, agitation and calling out. It was also noted that there was less distress and staff were able to bathe residents more quickly. 172 Both note that ‘organisational factors’172 and ‘facility-wide culture change’174 are important. These studies offered a dementia-focused theory of engagement that was practice-specific and detailed, although they did not unpick organisational-level factors.

Theoretically, the ability of an intervention to involve particular care home staff (C), the provision of education and training (C) that encourages staff to recognise the person with dementia’s situation and acknowledges the difficulties staff face providing care (C) could lead to staff developing empathy (M) for residents’ feelings, believing that change is both possible (M) and worthwhile (M) with the result that residents will be less agitated or distressed (O). A recognition of the care home environment, and its related challenges for the workforce and their ability or authority to change practice, is as important as understanding the person with dementia’s needs and how they might interpret the intentions and actions of staff.

Whitaker et al. 113 conducted a review of what needs to be in place for psychosocial interventions, such as PCC, to work in care homes. The following quotation shows how they articulate these main findings:

. . . a number of key issues that, if addressed, would help to enable the widespread implementation of psychosocial interventions in care homes. This includes the importance of providing individualised interventions that are tailored to the person’s preferences and abilities and of obtaining the full support of care staff. [our emphasis] Staff members enable access to psychosocial interventions and provide essential encouragement and reassurance. Yet it is apparent that pressures on staff time, an associated focus on ‘priority needs’ and a preoccupation with risk present enduring barriers to implementation . . . Too often staff members are reluctant participants in dementia care training . . . It is essential to demonstrate that psychosocial interventions are a valuable option. Collaborative approaches that acknowledge staff perspectives and expertise from the outset offer an important method of engagement. This involves listening to any preferences or concerns that staff members have about the intervention in question. Finally, it is essential to obtain the full support of managers given their role in facilitating interventions and effecting cultural change within the home.

p. 348111

Whitaker et al. 113 go on to highlight the need to consider the resources and time available to the staff to allow them to modify work schedules and mentor staff. Activities, such as role-play, videos and vignettes, life review work or music events with PLWD, in other words activities that encouraged the mechanism of empathy, can help staff to see beyond the symptoms of dementia, to broaden their conceptualisation of the caregiving role and to reflect on their practice.

One Australian study144 illustrated the tension that care home staff may experience when asked to implement PCC if the goal of care does not fit with the priority of the care home, for example if the need for residents to appear clean and well groomed is given priority over person-centred care. In addition, if care home staff have ‘inadequate information about resident’s care needs’ on which to base their responses, the possibilities for delivering person-centred care are diminished.

An observational study on intimate continence care from the learning disability literature175 demonstrates the loss of dignity that can occur when the principles of person-centred care are not applied and when bathroom facilities and toileting support do not consider the needs of the resident (Table 20). When staff focus on a task and fail to view a resident as a person, indignities and mistreatment can occur. For example, seating a resident on the toilet for other aspects of care can cause confusing associations with the toilet and possibly contribute to incontinence. The following summarises the C–M–O configurations that were evident in this study. It was the only study that considered the adverse outcomes when continence care is rushed, no attention is given to a person’s preferences and continence care is subsumed in other activities.

Using external experts, keeping staff up to date and encouraging a group understanding of PCC have value, but to achieve outcomes, such as reduced resident distress, using a more reflective personalised approach requires both empathy and the time to address the workplace challenges. For PCC approaches to be relevant they need to be discussed in relation to continence-specific activities. The evidence suggests that PCC approaches constitute a contextual factor that needs to be in place to support continence care for older PLWD experiencing FI.

Theory area: establish a common understanding of the potential for recovery, reduction and management of faecal incontinence for people with dementia

This theory area posits that nihilism, a belief that nothing can be done for a person with dementia with FI, influences care choices by staff in care homes. It links to the theory areas that advocate the importance of education and person-centred care to influence staff attitudes and behaviours. The example from the Medway community health-care leaflet, ‘A guide for staff in care homes’,179 clearly states that care home staff can make a difference. The wording of the leaflet suggests that the authors believe that nihilistic attitudes persist and that staff education is needed to counter these views.

Incontinence is not the resident’s fault. It is not a normal part of ageing. The resident is not bad or lazy, he or she has a health or mobility problem and you can help.

The leaflet continues:

You are Key – Incontinence can be improved provided residents get the right care. You are an important part of the team that will make treatment or management work.

The theory area is a response to the idea that nihilism persists, and a possible C–M–O configuration shows how it could be considered the mechanism for other theory areas (Table 22).

Twenty-two documents from the 62 sources are noted as contributing to this theory area; however, all are also associated with the theory areas around clinician-led assessment and review, ongoing teaching, review and feedback and PCC approaches.

This suggests that what is being identified is a mechanism by which other approaches could be seen to be enacted. For example, a study in Norwegian nursing homes153 found that RNs held mixed views about FI. Some RNs said residents did not care about being faecally incontinent, although others felt that residents experienced shame or anxiety about FI accidents. One RN viewed FI accidents as attention seeking and another RN suggested that agitated, restless or jumpy residents are often that way because they are constipated. Some residents wore pads for safety, whereas others were ashamed to wear pads. Residents were reluctant to talk about bowels with their families, who were also reluctant to discuss this topic. This evidence suggests that FI care would benefit from an intervention addressing nihilist assumptions about the value of assessment and toileting interventions.

The ‘bathing without a battle’ intervention174 included residents with moderate and severe dementia and used a ‘train the trainer’ model, with cascade training and inclusion of new staff. Trainers were RNs or senior certified nursing assistants. Few details are given about the intervention but it appears to describe a person-centred approach, including enhanced communication, respect for resident preferences, a view of distress as the manifestation of unmet need and a belief in the need to maximise comfort. The implicit mechanism is that it works through shared understanding but this is not something that is measured.

Thus, this area is kept as a potential mechanism; although most of the evidence is implicit, either nihilism or lack of shared understanding is a mechanism that blocks the success of interventions or uptake of learning.

Theory area: integral to the everyday work pattern and environment, ‘fit’

Forty of the 62 sources are noted as having some bearing on this theory. The literature on the other programme theories had underlined the need for new approaches to care to fit within existing structures of authority and working practices in the care home (these are not directly measured but rather are the observations by the study authors in the discussion sections).

The evidence supporting this mid-range theory was apparent when we considered the recurring narratives from care home research that have been previously discussed. The accounts reviewed demonstrated that for staff to believe that change was possible, enough time, encouragement and support were required within the workplace. Rovner et al. 180 described the requirement for physicians to complete documentation and to be involved in ongoing discussion with staff as the potential reason that their intervention had been sustained (for 9 months after the end of the study period). It made the intervention a work priority for all the staff, and the ongoing involvement of the clinician endorsed the activity.

Saga76 and Saga et al. 153 noted that the resident’s need for assistance was a trigger or ‘protective’ factor for FI, with staff being more proactive in supporting the achievement of dependent continence:

In addition, patients who needed some help in transfer from bed to chair was a protective factor for FI, indicating that patients who needed this kind of care had a relation to the nursing staff, which in turn released a certain kind of assistance compared to patients who were independent in transfer from bed to chair. The registered nurses in the focus group interview described patients who toileted independently as a challenge for the nursing home staff, due to problems regarding observation and monitoring of bowel function. This indicates that there is a potential for improvement regarding FI care despite the challenging characteristics of this patient group.

p. 90153

As noted, in one of the later multicomponent studies101 on PV, people with cognitive impairment responded particularly well to the intervention. The suggestion is that older PLWD can benefit from toileting assistance and prompting and the presence of a dementia diagnosis should not prevent them being offered this assistance. This also resonates with the perspective of one of the direct care staff who we spoke to, who felt very strongly that everyone has the right (their emphasis) to be taken to the toilet, with the suggestion that there is ‘always time’ to help someone to the toilet. Table 23 shows a potential C–M–O configuration developed from these insights.

The ability to incorporate an intervention into the work pattern of the care home was important. A study investigating the effects of better urinary and faecal continence on skin integrity46 included exercise as a planned component of the intervention. It was hypothesised that exercise and PV together would reduce the incidence of both UI and FI, thus improving skin health. The intervention improved continence for many of the residents, although the outcomes for skin health were less clear. The authors suggest that following the protocol 7 days a week may make a more measurable improvement to skin health but noted that nursing home staff would have difficulty implementing the intervention for all residents with UI or FI.

At a similar time (1990) as the early Ouslander and Schnelle studies,138,139 another group of researchers, Burgio et al. 161 and Engel et al. ,162 who had been studying behavioural treatments for UI and FI for ‘the past 20 years’ concluded ‘the only two mechanisms by which toileting programs are likely to succeed: one is by increasing the number of trained personnel and the other is by redistributing staff time . . .’. 162 This indicates that this theory area is not new but we suggest has not been previously explored to such depth or acted on.

Two systematic reviews, one on implementing psychosocial interventions in care homes for people with dementia111 and the other on interventions in care homes to reduce inappropriate antipsychotic prescribing for people with dementia,181 draw out some of the theories of why or why not interventions may be working. The staff’s ability to ‘juggle’ competing demands was an important factor or mechanism in whether or not outcomes were achieved:

The overall picture is one in which it would seem that the current guidelines to limit antipsychotic prescribing are difficult to implement in the day-to-day reality of practice, whilst juggling (our emphasis) ethical concerns, staffing levels, staff competence with non-pharmacological alternatives, and the wishes of distressed relatives and carers.

p. 716181

Some of the C–M–O configurations we identified from this and findings from the studies reviewed are given in Table 24. They illustrate that how staff interpret their (invariably) task-based work is framed by the organisation and management support received, the recognition of the skills required and the value placed on these activities. This may be further influenced by family or regulators’ demands and expectations.

The idea that leadership and management support are the contextual factors that trigger change are challenged by Killet et al. 182 in their analysis of care home culture. They contest assumptions that achieving improved care requires a clear leader, robust organisational values or staff who are properly trained. They argue, similarly to Thompson Coon et al. , that it is a fluid process subject to fluctuating demands:

Rather, it is necessary to find ways of resolving the everyday demands of practice in ways that are consistent with espoused values. It is through this everyday practice that assumptions continuously evolve, either consistent with or divergent from, espoused values. . . . For managers and leaders, the implications are that there is a need to be engaged with ongoing problem solving in practice. Managers need to be aware of day-to-day problems and how staff deal with these. They need to help to find solutions that explicitly fit with the espoused values of the organisation.

p. 185182

This evidence then led the research team to consider the way in which continence care is represented in the literature as one of the everyday demands of practice and as part of the provision of intimate and personal care by care home staff. A grounded theory study of the work of nurses and care staff in residential settings144 describes continence care as an activity that is locally produced and, specifically when considering the work of continence care in long-term care settings, as ‘caring against the odds’.

A particularly interesting conceptualisation of this comes from the some of same authors who were considering an abilities approach to morning care. 183 They proposed a mid-range theory of how care workers (personal support workers) practise through ‘figuring it out in the moment’. 184 They used it to explain how unregulated care providers (i.e. frontline care staff) in a Canadian context in dementia care settings practise in the context of ‘unpredictability, variability and personal threat’. They proposed that although there is knowledge and evidence of what the best dementia care practices are, there is an absence of knowledge as to how best to promote these in care homes (Figure 7).

FIGURE 7.

Summary of ‘figuring it out in the moment’ mid-range theory (by Janes et al. 184). The emergent theory of figuring it out in the moment explicates the process by which unregulated care providers make decisions about, and act on, knowledge related to person-centred care and how contextual, individual and relational factors may influence these efforts. C, contextual; I, individual; R, relational.

This literature stressed the significance of being able to acknowledge the (changing) difficulties and challenges of an unpredictable work environment. An Australian144 study on continence care in care homes:

. . . revealed broader contextual conditions that influenced the overall context of care, and not just continence care. Specifically, the findings revealed a basic social problem that was characterised by multiple constraints to residents’ day-to-day care, and which caused residential aged care staff to be in a situation in which they were ‘caring against the odds’. ‘Caring against the odds’ was characterised by four major subcategories: (1) working in a highly regulated work environment; (2) encountering ethically challenging situations; (3) working with highly dependent residents; and (4) a devalued role.

p. 5144

It was the idea of the devalued role (a lack of value attributed to continence care and toileting) that led the research team to revisit issues raised in phase 1 regarding the way in which continence care is aligned with the personal care of the resident: work that is invariably the least valued and undertaken by the most junior and least qualified staff in a care home.

Synthesis: continence care as intimate care of people living with dementia

Research that is not specifically about FI or continence but does address the personal care of older PLWD in care homes reframes continence care as an intimate care activity that requires particular skills to avoid causing distress to PLWD. In this research and practice literature, continence care is seen as complex care completed as part of life in a care home and as part of a more embedded relationship between care home staff (as well as residents). 185 However, because of its association with excrement and pollution, this care is often stigmatised.

Twigg186 provided an analysis on how care staff manage the body and bodily fluids in their everyday encounters and considered how they negotiate nakedness and touch, manage dirt and disgust, and balance intimacy and distance. All of which is relevant to how continence care and the reduction and containment of FI are valued and organised within a care home. Twigg argues that the way in which care work as ‘bodywork’ is represented then influences whether or not it is acknowledged by staff and their organisation as work that requires specific skills and is important. The continence research reviewed here focused on management and education and did not discuss bodywork. Twigg characterises this as a ‘zone of silence’ and argues that care workers do not receive help or guidance on such practices. Kelly187 considered bodywork in dementia care at the micro level of care and suggested activities that encourage empathy when care home staff:

. . . see beyond the distasteful nature of their work and the perceived differentness of their patients to working to identify with aspects of their patients’ selfhood that are common to them (whether it be the commonality of having a body, sharing gender, sharing roles of being someone’s son or daughter, the commonality of experiencing pain or fear, or needing to have social contact).

p. 1086

She argued these could transform bodywork from a task that is distasteful to the care worker to one in which respectful care dignifies both the care worker and the care recipient. It is an argument that seeks to apply an understanding of PCC in specific staff–resident encounters.

We considered evidence, therefore, on how care home staff provided intimate personal care for PLWD and the learning this offers about what factors are likely to support improvements in the management and reduction of FI. There was only one source that addressed how to encourage someone with dementia to use a toilet who may not understand what is expected and who may resist staff prompts and encouragement.

Dementia Care: A Practical Photographic Guide185 is a book that describes the practical learning from an Australian study looking at resistance to care in older PLWD who are living in residential aged care facilities. It is written as a practical guide for frontline care staff. The authors give detailed descriptions of behaviours that care workers may encounter in taking someone with dementia to the toilet or changing incontinence pads. They describe reasons for these and appropriate caring measures, with photographic illustrations to communicate and alleviate distress. The book does not specifically address FI but lists factors that contribute to incontinence. Similar to the work by Stokes,136 it places continence care as one aspect of personal and intimate care activities that need to take account not only of cognitive decline but also of reduced mobility and sensory changes.

The range of approaches used to improve FI in PLWD in care homes are elaborated into a programme theory of continence care for this population and setting (Figure 8). The different coloured pathways demonstrate some (but not all) of the different ways that the proposed links between resources/contexts and mechanisms can lead to intermediate outcomes, which can generate a further response or mechanism that supports continence-specific outcomes for residents and staff. Based on the evidence reviewed, it sets out:

• The resources (white boxes) that need to be in place (resident assessment, knowledge of causes of FI, clinician support, skills in person-centred care applied to continence care). These inform the contexts or ‘backdrop’ conditions that trigger or modify the behaviour of a mechanism, that is, provision of training and support for care home staff in dementia-specific skills for continence care, care home and clinician endorsement that gives staff authority to act of their knowledge (dark-green boxes).

• The mechanisms (light-green circles) that are the generative force that leads to outcomes. Specifically, these propose the reasoning and responses of care home staff and residents that arise from the interplay of the identified contexts. For example, residents with dementia no longer feeling threatened or distressed by prompted toileting interventions arises from staff having the authority and skills to apply person-centred care approaches to continence care based on a conviction that improvements are possible and this is valuable work.

• Intermediate outcomes (grey boxes) changed are staff behaviours and organisation of personal care work, increased use of resources (staff time and training) for continence care, staff attitudes and ongoing assessment and review. This in turn provides feedback and a mechanism that is expressed as staff confidence in their skills and prioritising personal care as skilled work, that is, the generative force to achieve and sustain continence-specific changes in residents’ experiences, staff satisfaction and appropriate use of medication and pads.

FIGURE 8.

Programme theory for the reduction and management of FI in PLWD in care homes.

Summary Study Steering Committee (September 2015)

The emergent findings were presented to the SSC. This presentation outlined the six theory areas, the theory areas deemed most promising, the historical perspective of studies in care homes and the parallels in methodology between the US programme of work,45,46,95,98,102,106,188 and the work by Fossey et al. 110,111 and Lawrence et al. 95,96 on antipsychotic prescribing reduction in the UK.

The key points endorsed by the SSC and what should be emphasised in the findings and discussion were:

• the lack of connection observed between continence research and dementia care, that is, the finding that the continence literature does not investigate dementia and FI beyond considering dementia as a risk factor for FI. Issues are considered in isolation

• the fact that the work of Stokes136 on toileting problems and person-centred care was useful but needs to be operationalised in terms of the particular challenges that arise around resistance to care and helping someone living with dementia use the toilet and other continence aids

• the lack of evidence about the extra hours and resource required for toileting interventions and how this informs care home business models

• that the wider care home research literature confirms that care home working is often organised according to tasks that need to be completed.

British Geriatrics Society Special Interest Group Bladder and Bowel Conference (November 2015)

Participants included geriatricians, urologists and gastroenterologists, specialist continence nurses, continence service managers, medical students and researchers specialising in various aspects of continence and Parkinson’s disease. Twenty participants took part in the discussion that followed the presentation of emergent findings from the FINCH study (see Appendix 9). Particular emphasis was given to the evidence about care, home staff’s understanding of intimate care, especially toileting, and their responsibilities in that respect, the challenges encountered by a person living with dementia when using the toilet or continence aids and the integration of person-centred care with clinician-led continence assessment and review when addressing the secondary causes of FI.

Questions and comments on the findings from delegates fell into three themes, the ‘journey to incontinence’, the location of training and staff involvement in designing and planning training.

1. The journey to incontinence: incontinence, as in a person starting to use pads, often begins during a stay in hospital but research seldom considers this.

2. The location of training: specialist continence nurses know that training for care workers needs to be in-house to minimise the need for agency cover. However, translating this into practice is difficult and involves agreement from trust managers, care home providers, etc. Related to this point is the issue of staff turnover with the consequent loss of expertise.

3. Staff involvement in designing and planning training: there was interest and support for the idea that care home staff could and should be involved in the choice, planning and design of training programmes. This could help to maximise their engagement with continence care and improve the chances of integrating this aspect of care work into everyday practice.

Specific points made that were relevant to the findings, identified gaps or need for future research, were:

• Nihilism and the normalisation of incontinence and pad use are linked to lack of knowledge of what is achievable, stigma of incontinence for older people and those providing continence care.

• It is important not to underestimate the importance of access to a continence specialist in maintaining the dignity of older people with continence problems and to give value to this work.

• The need to expand how FI and continence care were defined for this population was strongly supported. One participant characterised ‘continence care’ as knowing what a person wants and understanding how they understood continence before they lost capacity.

• One issue that was not raised by the findings was the problem of multiple referral pathways and crossover between nurses in different disciplines who may be covering aspects of the same service provided to the care home.

• More work is needed to understand who takes responsibility for continence care and how care home staff access that support.

• Physical health influences how the dementia trajectory is experienced, and maintaining mobility and physical functioning is important for good continence outcomes. Linked to the findings about the need to assess a person living with dementia’s functional abilities to plan continence care are other issues, such as visual acuity, that are not dementia specific.

• How can medical staff generally improve the relationship between care homes and primary or secondary medical care facilities? Do these findings suggest there is a need to align care home and NHS policies, Care Quality Commission and Quality and Outcomes Framework requirements and the approach strategies of individual clinicians and care home managers?

Account of National Care Home Research Forum feedback session

The FINCH core team presented the emerging findings at the National Care Home Research and Development forum on 1 December 2015. There were 30 participants from across charitable, professional and voluntary organisations (including care providers), the NHS, local authority, police, universities and one carer representative (see Appendix 9). The FINCH presentation was one of four.

The other three presentations focused on:

• person-centred care and the role of the RN

  1. NHS provision to care homes: findings from a NIHR-funded care home study.

The introduction of vanguard sites (Department of Health-integrated care initiatives that include six sites that are working with care homes).

Three main discussion areas from the audience were particularly relevant to the FINCH findings: the role of the occupational therapist, predictable conflict in vulnerable adults and the need for time for reflection and sharing in practice.

Individuals with experience of caring for people with dementia and faecal incontinence

The BBF contacted 49 members who care for someone with both FI and dementia, and three responses were received. Interested participants received information about the study and confirmed participation. Two completed a telephone interview and one a combined e-mail exchange and a telephone interview. These participants were eloquent about the experience of FI both from the perspective of the person living with dementia and those caring for them.

Accounts from the carers reinforced the dementia-specific issues identified in the review that can arise relating to FI. These were resistance to using pads or going into unfamiliar toilets, going to the toilet every few minutes, usually without success, and irritability when there is a need to be cleaned or showered. Constipation was recognised as linked to FI and faecal smearing, and one carer commented on the delay in this being recognised by nursing staff. The difficulties of keeping both the person and the environment clean were described by two participants as exhausting and as being not understood by visiting professionals. Attempts to secure help in this process was characterised by one carer as similar to trying to walk ‘through a brick wall’.

Participants highlighted three areas of concern that had been identified in phase 1 but phase 2 had not touched on. These were cross-infection and contamination secondary to FI, how it is possible to know when a person with dementia has no awareness of the need to defaecate and the provision of pads in relation to the severity of the FI. In a situation when there was no sphincter control, one daughter highlighted that the pads provided were ‘inadequate in number and usefulness’.

In relation to the findings on the impact of dementia on how continence care is understood, one woman stated:

I do think that you [the FINCH study] are on the right lines. In my experience, relatives and carers have a role in assist the professionals within a care home. For example, they can spot and report on signs that their relative is developing constipation. My mother’s incontinence has been much better managed in a dementia unit than it was in the community, where, we as relatives were literally left mopping up the shit. We certainly experienced the cruel division of patient care funding between NHS and social care.

Family carer, from an e-mail

Care home managers and care home staff

Two care homes were visited and conversations had with three care home managers and two frontline staff. Discussions focused on the findings about what supported the provision of personal care as part of continence care. One manager stated that maintaining continence was considered important in most units of her care home, with staff assisting residents to the toilet and paying attention to hydration, nutrition and mobility. She stressed, however, that there was a difference between residents in the residential units and those in the nursing units and suggested the review should consider this. In the nursing unit she thought that staff would be less likely to persevere with toileting regimes because these residents were frailer and, she thought, less likely to benefit.

One care home manager had support from a continence specialist nurse and two did not (although one was a home with on-site nursing). One care home (nursing home) manager echoed the finding from phase 1 and restated that the continence service assessment was done ‘mainly to get pads’; this same manager described how they used regular toileting to give people the opportunity to go on the toilet or commode. Although ideally residents would be taken to the toilet when they communicated the need, regular toileting on waking, before meals and before bed was easier to incorporate into routines. Care home staff providing personal care agreed that providing assistance with toileting and changing pads was a large part of their daily work. They did not think that they had met a continence nurse. One described how they recognised the value of trying to learn residents’ preferences and ‘ways of doing things’ to try to make the process as easy as possible for the resident and the staff. This, they acknowledged, was not documented or discussed more widely in the care home.

Summary

The validation phase endorsed the review findings on how understanding of FI has developed over time, factors that influence whether or not someone has FI, and the knowledge that clinicians and care home staff need. Two key emergent findings were seen as important: (1) the need to link continence expertise with expertise in dementia care to provide care that recognises and accommodates the functional abilities of PLWD and (2) that future research and practice should consider the links between personal intimate care activities and continence care in the care home were recognised as having potential and being worth further investigation.

Gaps and issues that were only partially considered and that could benefit from being revisited were cross-infection and contamination secondary to FI, the role of occupational therapists in care homes and the time and resources that providing FI-related care requires. Further work was thought to be needed to help staff to differentiate between residents living with dementia who could benefit from proactive care and those for whom pads were the most appropriate response and for whom assessment frameworks could allocate pads based on residents’ need.

Interventions to reduce dehydration

A review including 23 studies looked at interventions to increase fluid intake and reduce dehydration in older people in long-term care. 225 The evidence base was weak but there were a number of interventions that looked promising. This included greater choice and availability of beverages, increased staff awareness, increased staff assistance with drinking and toileting and assessment. Evidence on modifications to dining environments was inconclusive.

Meal time practices

One meta-analysis51 found inconsistent evidence of effects on body weight of changes to food service, food improvement interventions or alterations to dining environment. Findings from observational studies within these intervention types were mixed but generally positive. A narrative review227 reported that nutritional supplements showed moderate evidence to increase food intake, body weight and body mass index. Training/education programmes demonstrated moderate evidence to increase eating time and decrease feeding difficulty. Both training/education programmes and feeding assistance were insufficient to increase food intake. Environment/routine modification indicated low evidence to increase food intake and insufficient evidence to decrease agitation. Evidence was sparse on nutritional status, eating ability, behaviour disturbance, behavioural and cognitive function or level of dependence.

Initial mid-range theories

These six areas are as follows.

1. Integral to the everyday work pattern and environment: this mid-range theory understands that even if staff know about managing FI and know about person-centred care practices for people with dementia, their ability to implement them will depend on how it fits with the everyday work pattern and environment. A number of different contexts [knowledge of FI, knowing the person, appropriate staffing levels, availability of clinical expert input (geriatricians/GPs/continence nurses), belief that continence can be improved, physical environment] will trigger ‘doing the right thing’ (mechanism) and result in less FI (and UI) and, most likely, in dependent continence. Obviously, these contexts may trigger other mechanisms, such as ‘risk aversion’ or ‘pre-emptive pad use’, that will not result in the desired outcomes. These ideas of staff balancing/juggling/making ‘trade-offs’ in their everyday practice were put forward at the RMT.

   Claire found through lateral searching a paper (in another study) and the mid-range theory of ‘Figuring it out in the moment’ seems to neatly encapsulate our theory area 1. 184 Having just read the RAMESES240 discussion about grounded theory being ‘flat’ need to consider that we articulate how this could work as a C–M–O for continence care.

2. Interventions that reflect the degree of cognitive and physical capacity of the resident (personalised care): this mid-range theory very much encapsulates the PCC approach to care. It assumes that if the resident, their history, their normal bowel patterns and their signals for needing the toilet are known, and staff are able to document and review in collaboration with a clinician assessment and family input, this triggers personalised care (mechanism) resulting in more dependent continence rather than FI (and UI) as well as outcomes consistent with the minimisation of distress and promotion of comfort.

   Possible mid-range theory person-centred practice framework241 could be adapted . . . (although it’s a bit motherhood and apple pie esque) and again ‘flat’.

3. Clinician-led support, assessment and review: this mid-range theory is very much proposed by clinicians. Clinician-led assessment and ongoing support and review, informed by the use of jointly agreed approaches to the promotion of continence and alternatives to the use of pads, will achieve observable improvements in continence and resident well-being. The assumption is that the involvement of clinicians is key because care home staff do not have the authority or expertise to be able to complete an assessment, particularly digital rectal examination, and therefore clinicians take a lead and care staff respond through a delegated responsibility and mutual communication (mechanism) and, because of the joint approaches, what care staff observe in the resident gets fed back into the assessment/review process so the interventions needed are always appropriate and improvement in faecal continence is seen.

   We have not come across any similar published mid-range theories (yet).

4. Establish a common understanding of the potential for recovery, reduction and management of FI for people with dementia: an underlying belief and explicit goals (expressed in staff training, documentation and handover) that it is possible to ameliorate FI in residents living with dementia will mean that attempts are made to understand what is causing the FI and interventions to promote continence and the management of FI are put in place.

   No expressed similar mid-range theories in literature were found. This mid-range theory addresses the idea that there is a nihilism in care home care.

5. Ongoing teaching, review and feedback for staff that involves care home staff in planning, action, review and implementation (e.g. Plan Do Study Act) will achieve positive continence-related outcomes: this mid-range theory expresses the viewpoint that giving staff access to the appropriate training, education and facilitation will result in a change in practice. The mechanism is that knowledge, feedback and review trigger changes in how people work.

   This mid-range theory is important to consider as so many care home interventions employ a training/education/facilitation approach.

6. Dealing properly with constipation in older people with dementia in care homes will ameliorate a significant proportion of FI because some FI is laxative-induced or overflow FI due to constipation and impaction: this mid-range theory addresses the issue that a focus on constipation can lead to unintended consequences of FI if it is not carried out properly. It looks at the link between FI and constipation.

FIGURE 11.

Patient-centred care framework.

‘Data’ extraction and narrative summaries

We started two parallel processes, (1) data extraction using a modified version of Geoff Wong’s analysis and synthesis form and (2) narrative summaries around grouped papers/evidence. 242

Although we had looked already at 30 or so papers, we started to revisit these in the light of our working mid-range theories and with a better understanding of how to pick out C–M–O configurations. The forms contained the following fields:

1. Relevance

   • Are the contents of a section of text within an included document referring to data that may be relevant to our mid-range theories? Which ones?

2. Interpretation of meaning:

   • If it is relevant, do the contents of a section of text provide data that may be interpreted as being a context, mechanism (resource/response) or outcome?

3. Judgements about C–M–O configurations

   • What is the C–M–O configuration (partial or complete) for the data?

4. Judgements about mid-range theory

   • How does this (full or partial) C–M–O configuration relate to the mid-range theory?

   • Within this same document, are there data that inform how the C–M–O configurations relate to the mid-range theory?

   • If not, are these data in other documents? Which ones?

   • In the light of this C–M–O configuration and any supporting data, does the mid-range theory need to be changed?

5. Rigour

   • Are the data sufficiently trustworthy and rigorous to warrant making changes to the C–M–O configurations?

   • Are the data sufficiently trustworthy and rigorous to warrant making changes to the mid-range theory?

6. Has this process made you think of any potentially relevant literature? Please note it here.

7. Questions raised not captured elsewhere

We have written narrative summaries of areas of the literature that may include reference to a number of the mid-range theories but are useful to look at as a whole because of the particular lens they bring to the issues.

We started with the two bodies of work directly related to continence, particularly FI, in older people living in care homes:

1. A summary of the studies produced by USA-based researchers working with John Schnelle at the Vanderbilt University, Nashville (BRu).

2. Saga thesis and papers summary and emerging theories and C–M–Os (MB).

We considered the body of clinician reviews and guidance on FI in the peer-reviewed journal literature (MB).

Then looking at a relevant body of work in older people with dementia living in care homes:

• Summary of studies on interventions to reduce antipsychotic prescribing in care homes and the implementation of psychosocial interventions and emerging theories and C–M–Os (MB).

Finally looking at guidance:

• Summary of NICE continence care and NICE dementia care guidelines, and implicit theories and C–M–Os (BRu).

We also wrote up the narratives around:

• Why it is important we consider double incontinence rather than FI alone (MB).

• Evidence that training, learning, mentoring and post-training support (Theory area 5) are contexts not mechanisms (BRu) – acknowledging we have reached ‘saturation’ in this theory area and will now discard it.

Next steps

Following from our look at NICE guidance and ‘expert’ clinician reviews/guidance in journals, and a push from a realist researcher that we need to be looking more at the ‘grey’ literature and finding out what is happening on the ground, we are going to search for guidance and guidelines that care home staff may have access to, for example:

• search for localised continence guidance for care homes that might be produced by local continence services (google and e-mail to service leads – if we can get a list)

• look at the Royal College of Nursing continence care in care homes framework and look for similar from other national bodies (e.g. Association for Continence Advice)

• look at the professional journals one might find in care homes, for example The Journal of Dementia Care and Caring Times and seek articles on managing FI.

The idea here is that we are looking at how management of FI is being interpreted from high-level guidance to the next level, practice guidance.

There is still a ‘long list’ of ‘not yet excluded’ papers from the systematic searching and our work to date will now influence how we select which papers we should look at in more detail (use the DASF).

Nutrition papers: rather than looking at these from the perspective as how nutrition impacts on bowel health in people with dementia living in care homes we will interrogate with respect to the five remaining theory areas, particularly thinking what interventions to improve eating and drinking in people with dementia in care homes have worked and why? [Eating and Drinking Well IN Dementia (EDWINA) study relevant here. 243]

Implementation in care homes research: we are looking for anything new in this research and particularly keen to look at interventions based on PCC (theory area 2), addressing nihilism (theory area 4) and clinician-led review (theory area 3) as evidence in these areas does not feel like it has reached saturation [unlike teaching and learning (theory area 5)]. [Optimal NHS service delivery to care homes: a realist evaluation of the features and mechanisms that support effective working for the continuing care of older people in residential settings (OPTIMAL) study particularly relevant here. 57]

Constipation literature: because this is coming across as important somehow, perhaps there has been an unintended consequence of a focus on constipation over bowel health in general such that ‘emptying of the bowels at all costs’ has been a focus. We need to interrogate the literature with respect to the five remaining theory areas.

Dementia friendly/person-centred care in care homes: to really try to find some C–M–Os, particularly mechanisms, in the literature we have in our systematic searches.

Which mid-range theory?

At this point in time the most promising theory is 1 – fit and doing the right thing. Education, training and facilitation (theory area 5) appears to be context and PCC approaches (theory area 2) looks as though it may also be context – both necessary but not sufficient. Theory areas 3, 4 and 6 still need more unpicking.

Worries . . .

That we lose the focus on (advanced) dementia. Perhaps we need to always keep dementia as a context with the other contexts and so always think, ‘with these contexts, this mechanism triggers such and such; how does dementia affect that?’ (However, going back to Kitwood,137 dementia in itself is not the context, because when you have met one person with dementia, you have met one person with dementia . . .) Should we be listing some of the behaviours and morbidities and psychological symptoms of dementias as contexts?

Search 1 (PubMed and The Cochrane Library, 24 September 2014)

(((((‘incontinence’[Title/Abstract]) OR ‘continence’) AND ‘dementia’ OR alzheimer*)) OR (((‘care home’) OR ‘nursing home’) AND ‘incontinence’)) OR (((‘care home’) AND ‘implementation’) OR ‘person centred’) No limits.

Search 2 (PubMed only, 15 October 2014)

(faecal OR fecal OR constipation OR constipated OR pads OR diapers OR skin cleansing[Title/Abstract]) AND care home or nursing home.

Restricted to following article types:

• clinical trial

• comparative study

• controlled clinical trial

• randomised controlled trial

• English abstract

• multicentre study

• review

• systematic review.

Search 3 (PubMed and The Cochrane Library, 7 January 2015)

(nutrition OR eating OR drinking OR hydration OR dehydration) AND (dementia OR nursing home OR care home).

Restricted to reviews only.

Search 4 (PubMed, 16 December 2014)

( TITLE-ABS-KEY ( ( learning disability ) ) AND TITLE-ABS-KEY ( continen* ) OR TITLE-ABS-KEY ( incontinen* ) OR

TITLE-ABS-KEY ( ( continence intervention ) ) AND

TITLE-ABS-KEY ( care OR resident* ) )

PUBYEAR > 1989

Lateral searching includes keyword searches on Google, citation searching and checking reference lists.

Search 3 was developed after the focus group with geriatricians and search 4 was suggested at the SSC meeting. The search terms used in search 4 are probably the weakest (Marina Buswell conducted that search, Frances conducted the first three); only 54 articles were returned, of which nine are relevant to a greater or lesser extent.

Example data extraction form 1

Example data extraction form 2

Example data extraction form 3