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What Works to Improve and Manage Fecal Incontinence in Care Home Residents Living With Dementia? A Realist Synthesis of the Evidence

      Abstract

      The prevalence of fecal incontinence (FI) in care homes is estimated to range from 30% to 50%. There is limited evidence of what is effective in the reduction and management of FI in care homes. Using realist synthesis, 6 potential program theories of what should work were identified. These addressed clinician-led support, assessment, and review; the contribution of teaching and support for care home staff on how to reduce and manage FI; addressing the causes and prevention of constipation; how cognitive and physical capacity of the resident affects outcomes; how the potential for recovery, reduction, and management of FI is understood by those involved; and how the care of people living with dementia and FI is integral to the work patterns of the care home and its staff. Dementia was a known risk factor for fecal incontinence (FI), but how it affected uptake of different interventions or the dementia specific continence and toileting skills staff require, were not addressed in the literature. There was a lack of dementia-specific evidence on continence aids. Most care home residents with FI will be doubly incontinent; there is, therefore, limited value in focusing solely on FI or single causes, such as constipation. Medical and nursing support for continence care is an important resource, but it is unhelpful to create a distinction between what is continence care and what is personal or intimate care. Prompted toileting is an approach that may be particularly beneficial for some residents. Valuing the intimate and personal care work unqualified and junior staff provide to people living with dementia and reinforcement of good practice in ways that are meaningful to this workforce are important clinician-led activities. Providing dementia-sensitive continence care within the daily work routines of care homes is key to helping to reduce and manage FI for this population.

      Keywords

      Fecal Incontinence in Care Home Residents Living With Dementia

      Approximately 80% of residents in nursing or care homes have dementia or memory problems,
      • Chassagne P.
      • Landrin I.
      • Neveu C.
      • et al.
      Fecal incontinence in the institutionalized elderly: Incidence, risk factors, and prognosis.
      • Borrie M.J.
      • Davidson H.A.
      Incontinence in institutions: Costs and contributing factors.
      • Nelson R.
      • Furner S.E.
      • Jesudason V.
      Fecal incontinence in Wisconsin nursing homes: Prevalence and associations.

      Royal College of Physicians of London. Promoting continence: Clinical audit scheme for the management of urinary and faecal incontinence. Prepared by the Research Unit of the Royal College of Physicians. London, UK: RCP; 1998.

      • Harrington C.
      • Carrillo H.
      • Dowdell M.
      • et al.
      Nursing facilities, staffing, residents and facility deficiencies, 2005 through 2010.
      • Rodriguez N.A.
      • Sackley C.M.
      • Badger F.J.
      Exploring the facets of continence care: A continence survey of care homes for older people in Birmingham.
      and the prevalence of FI is estimated to range from 30% to 50%.
      • Chassagne P.
      • Landrin I.
      • Neveu C.
      • et al.
      Fecal incontinence in the institutionalized elderly: Incidence, risk factors, and prognosis.
      • Borrie M.J.
      • Davidson H.A.
      Incontinence in institutions: Costs and contributing factors.
      • Nelson R.
      • Furner S.E.
      • Jesudason V.
      Fecal incontinence in Wisconsin nursing homes: Prevalence and associations.
      • Rodriguez N.A.
      • Sackley C.M.
      • Badger F.J.
      Exploring the facets of continence care: A continence survey of care homes for older people in Birmingham.
      • Brocklehurst J.C.
      • Dickinson E.
      • Windsor J.
      Laxatives and faecal incontinence in long-term care.
      • Saga S.
      • Vinsnes A.G.
      • Morkved S.
      • et al.
      What characteristics predispose to continence in nursing home residents? A population-based cross-sectional study.
      Dementia is an independent risk factor for FI.
      • Borrie M.J.
      • Davidson H.A.
      Incontinence in institutions: Costs and contributing factors.
      • Nakanishi N.
      • Tatara K.
      • Naramura H.
      • et al.
      Urinary and fecal incontinence in a community-residing older population in Japan.
      • Johanson J.F.
      • Irizarry F.
      • Doughty A.
      Risk factors for fecal incontinence in a nursing home population.
      FI is defined as the involuntary loss of liquid or solid stool that is a social or personal hygiene problem.
      • Norton C.
      • Whitehead W.E.
      • Bliss D.Z.
      • et al.
      Management of fecal incontinence in adults.
      FI is distressing, humiliating, and potentially stigmatizing for any adult. Managing another adult's excrement is outside the usual expectations, and can engender emotions of disgust and distaste.

      Billings JR. Privacy and Dignity in Continence Care: Reflective Guidelines for Health and Social Care Settings. Canterbury, UK: British Geriatrics Society, Royal College of Physicians, University of Kent; 2009. Available at: https://kar.kent.ac.uk/34864/1/Privacy_and_Dignity_in_Continence_Care_Guidelines_Feb_09.pdf. Accessed June 28, 2017.

      Current evidence about FI in people in long-term care settings is mixed, with some good evidence on risk factors,
      • Chassagne P.
      • Landrin I.
      • Neveu C.
      • et al.
      Fecal incontinence in the institutionalized elderly: Incidence, risk factors, and prognosis.
      • Harari D.
      Constipation and fecal incontinence in old age.
      the impact of comorbidity,
      • Bowman C.
      • Whistler J.
      • Ellerby M.
      A national census of care home residents.
      and the impact of different organizational contexts.
      • Nelson R.
      • Furner S.E.
      • Jesudason V.
      Fecal incontinence in Wisconsin nursing homes: Prevalence and associations.
      • Nakanishi N.
      • Tatara K.
      • Naramura H.
      • et al.
      Urinary and fecal incontinence in a community-residing older population in Japan.
      • Johanson J.F.
      • Irizarry F.
      • Doughty A.
      Risk factors for fecal incontinence in a nursing home population.
      There are few intervention studies and little conclusive evidence of what is effective management of FI in people resident in care homes.
      • Flanagan L.
      • Roe B.
      • Jack B.
      • et al.
      Systematic review of care intervention studies for the management of incontinence and promotion of continence in older people in care homes with urinary incontinence as the primary focus (1966–2010).
      • Flanagan L.
      • Roe B.
      • Jack B.
      • et al.
      Factors with the management of incontinence and promotion of continence in older people in care homes.
      Care homes are the main providers of long-term care for older people in many developed countries and accommodate those who require help with personal care and are unable to be supported in their own home due to medical, functional, or mental health problems. They include settings that have on-site nursing provision and those that do not. They are often administered by a nonclinical manager in many countries. This article reports the main findings of a realist review and synthesis of evidence for the management of FI in older people with dementia in care homes.

      Goodman CN, Buswell M, Russell B, et al. Managing faecal incontinence in people with advanced dementia resident in care homes, a realist synthesis of the evidence (FINCH study). Health Technol Assess. In Press 2017.

      The definition of care homes includes nursing homes, residential homes, aged long-term care, assisted living facilities, and dual-registered homes.
      The objectives of the review were to
      • 1.
        Identify which interventions to reduce and manage FI could potentially be effective, how they might work, on what range of outcomes (ie, organizational, resource use, and patient level of care), and for whom (or why they do not work)
      • 2.
        Establish evidence on the relative feasibility and cost of interventions to manage FI

      Realist Review

      Realist review is a theory-driven approach to reviewing a range of published and unpublished literature, whereby evidence is assessed and used based on its relevance in terms of contributing to (and testing and refining) an emerging understanding about the different aspects of an intervention and how it may work.
      • Pawson R.
      Evidence-based policy: A realist perspective.
      • Pawson R.
      • Greenhalgh J.
      • Brennan C.
      • Glidewell E.
      Do reviews of healthcare interventions teach us how to improve healthcare systems?.
      • Wong G.
      • Greenhalgh T.
      • Westhorp G.
      • et al.
      RAMESES publication standards: Realist syntheses.
      Interventions to reduce and manage FI in care homes are always complex and their outcomes are context-dependent. Realist approaches emphasize understanding causation in terms of how interventions generate outcomes through the medium of human decisions and reactions that are themselves affected by social context.
      • Pawson R.
      Evidence-based policy: A realist perspective.
      • Wong G.
      • Greenhalgh T.
      • Westhorp G.
      • et al.
      RAMESES publication standards: Realist syntheses.
      The often-repeated statement used to explain realist review is that it makes explicit “what works, for whom, in what circumstances?” The focus on causal mechanisms and necessary conditions for success ensures rigor, even when contributing evidence may be of variable quality.

      Methods

      The review had 3 linked phases: an initial scoping of the evidence to refine the question and build potential midrange theories about what determines “good” care in the reduction and management of FI (scoping searches and stakeholder interviews); an in-depth review phase to test and refine the proposed theory areas (continuous literature searching, retrieval, inclusion/exclusion, data extraction, review, and appraisal); and a final testing, refining, and validation phase (theory testing, refining, and stakeholder review). Further details are available in the protocol
      • Goodman C.
      • Malone J.R.
      • Norton C.
      • et al.
      Reducing and managing faecal incontinence in people with advanced dementia who are resident in care homes: Protocol for a realist synthesis.
      and final report of the review.

      Goodman CN, Buswell M, Russell B, et al. Managing faecal incontinence in people with advanced dementia resident in care homes, a realist synthesis of the evidence (FINCH study). Health Technol Assess. In Press 2017.

      Ethics approval was obtained via the University of Hertfordshire ethics committee: University of Hertfordshire protocol reference HSK/SF/UH00088.
      Review methods and reporting for the realist synthesis followed the RAMESES (Realist And Meta-narrative Evidence Syntheses: Evolving Standards) guidelines.
      • Wong G.
      • Greenhalgh T.
      • Westhorp G.
      • et al.
      RAMESES publication standards: Realist syntheses.
      An iterative approach was used to define the scope of the review and identify potential candidate theories for testing in the literature. Context–Mechanism–Outcome configurations (CMOs) were used as a tool to understand what is going on in interventions. This does more than describe barriers and enablers, it theorizes how interactions among the environment, the people, and the resources may result in different patterns of outcomes. We asked, “what does good continence care looks like?” and used multiple sources of evidence within key contexts (C) and we hypothesized mechanisms (M) of interventions to explain the outcomes (O) (see Box 1). We tested the CMOs against the relevant evidence to build context-sensitive theory providing causal explanations for different settings, situations, and participants of what supported the reduction and management of FI for residents in care homes when and with what outcomes. Published and unpublished evidence was systematically searched and used to test possible CMOs within and across the evidence reviewed. Four separate searches were undertaken in phase 1, and in phase 2 these were expanded and refined (see Box 2, Box 3). All strategies are available on request and available in the full report.

      Goodman CN, Buswell M, Russell B, et al. Managing faecal incontinence in people with advanced dementia resident in care homes, a realist synthesis of the evidence (FINCH study). Health Technol Assess. In Press 2017.

      Databases searched included PubMed, CINAHL, The Cochrane Library, Scopus, SocAbs, ASSIA, BiblioMap, Sirius, OpenGrey, Social Care online, and the National Research Register without date restrictions up to March 2015.
      Definitions of realist terms and how they have been applied throughout the review
      • Context (C): Context can be broadly understood as any condition that triggers and/or modifies a mechanism; the background situation, for example, clinical assessment, provision of training, resident's diet and hydration, or cost of continence aids.
      • Mechanism (M): A mechanism is the generative force that leads to outcomes. It may denote an action or reasoning of the various “actors” (ie, care home staff, residents, relatives, and health care professionals). Identifying the mechanisms goes beyond describing “what happened” to theorizing “why it happened, for whom, and under what circumstances.”
      • Outcomes (O): Intervention outcomes; for example, reduction in episodes of FI, reduction in resident distress, family caregiver satisfaction with care, staff confidence, costs. An outcome of one CMO configuration may be the context of another CMO configuration.
      Literature searching: Scoping search areas

        Scoping searches

      • 1.
        Continence-related research in care homes, dementia and continence, older people and continence, implementation research in care homes, and person-centered dementia care
      • 2.
        Fecal incontinence, care homes, and incontinence pads
      • 3.
        Literature on interventions to promote nutrition and hydration (eating and drinking) for PLWD in care homes. This was to test whether this body of work included outcomes related to continence and FI
      • 4.
        Scope the learning disability (intellectual difficulty) literature for continence-related research
      • 5.
        All types of evidence, including empirical studies on FI, policy documents, staff guidance, book chapters, and theses
      Databases searched: PubMed and Cochrane Library.
      Second literature-search areas
      • Searches 1a and 1b searched for evidence on care home research, continence, or FI, which included PLWD, and care home research covering implementation or patient-centred care (PCC) that included people with dementia.
      • Search 2: Continence literature in care homes that may be about factors associated with FI, such as the use of incontinence pads or constipation.
      • Search 3: Research in care homes for people with dementia that concerned nutrition and or hydration in the care home population. We were interested in outcomes relevant to FI or urinary continence as well as learning on implementation.
      • Search 4: Literature on continence care for people with learning disability.
      Databases searched: MEDLINE, EMBASE, CINAHL, PsychINFO, The Cochrane Library, Joanna Briggs.
      Five stakeholder group interviews were conducted with a purposively selected sample of care home managers, care home staff, service user representatives, practice educators, academics, clinicians (ie, doctors, nurses, and allied health professionals) with specialist interest in FI, continence specialists, and commissioners and providers of continence services (n = 44), as well as incorporating our own prior knowledge of this field. Interviews were used to explore assumptions and theories of what was important for the effective care of people living with FI and dementia. Interviews were recorded, transcribed, categorized thematically, and analyzed on how different participants described what good continence care looked like, what needed to be in place to achieve it, and how effectiveness could be measured. Field notes also were taken to capture how participants discussed different issues within the group, where there appeared to be uncertainty and consensus. Data from the scoping searches and interviews were used to develop narratives, tables, and summary diagrams that captured multiple areas of what needs to be in place to achieve improved resident outcomes for FI (eg, continence, dependent continence, appropriate use of pads, comfort, personalized care, minimization of distress, skin integrity). This made explicit the interactions among the environment, people, and resources that may result in different CMO configurations and outcome patterns.
      Searches retrieved 1500 potentially relevant sources: empirical studies, policy and staff guidance documents, book chapters, and theses. A total of 287 sources were examined during the project, and we systematically extracted data from 62 core articles selected based on their relevance to the developing theories. Agreement was reached by consensus within the team. Bespoke data extraction forms were populated by all members of the project team with all articles read independently by at least 2 people. Data were extracted on type of literature (eg, intervention study, observational study, policy document), country, setting, methods, study outcomes, and which theory areas they related to. Quality assessments were completed for the 8 intervention studies using a modified version of the Cochrane risk of bias tool.
      • Higgins J.
      • Green S.
      Assessing Risk of Bias in Included Studies. Cochrane Handbook for Systematic Reviews of Interventions. Version 5.0. 0.
      Data extraction captured the evidence on CMO configurations of different theories and patterns that were supported or negated. The emergent propositions of what supports effective care for people living in care homes with dementia and FI were tested, refined, and validated by discussing findings and implications for future research and practice among the project team and with a purposive sample of stakeholders (from phase 1).

      Results

      Six broad theory areas were identified that could explain how to improve continence care for people living with dementia and FI in care homes. These were as follows: (1) Clinician-led support, assessment, and review; (2) ongoing teaching, review, and feedback to care staff on how to reduce and manage FI; (3) addressing the causes and prevention of constipation; (4) interventions that reflect the degree of cognitive and physical capacity of the resident; (5) common understanding of the potential for recovery and reduction of FI; and (6) integrating care for people living with dementia and FI into everyday work patterns of the care home and staff. The key findings from group interviews and evidence for the different CMOs are presented.

      Stakeholder Group Interviews and Literature Scoping

      Although all stakeholders highlighted how distressing FI could be for both residents and staff and how important it was to know the resident, there were differences in emphasis among different groups. For example, doctors focused on the issues such as “regular assessment” and nutrition and hydration, whereas direct carers and family focused on approaches that stressed knowing the resident's biography, and that promoted empathy and clarity/leadership within the care home. These findings were summarized by stakeholder groups' accounts of what is effective as possible CMO configurations. The detailed tables are available in the full report.

      Goodman CN, Buswell M, Russell B, et al. Managing faecal incontinence in people with advanced dementia resident in care homes, a realist synthesis of the evidence (FINCH study). Health Technol Assess. In Press 2017.

      Evidence from the scoping review was summarized in 4 broad narratives:
      • (1)
        A cumulative program of work in continence research in nursing homes in the United States by Ouslander et al and Schnelle et al
        • Ouslander J.G.
        • Simmons S.
        • Schnelle J.
        • et al.
        Effects of prompted voiding on fecal continence among nursing home residents.
        • Leung A.W.
        • Karyotakis N.C.
        • Rahman H.U.
        • et al.
        Fecal incontinence in a nursing home and an ambulatory population.
        • Leung F.W.
        • Schnelle J.F.
        Urinary and fecal incontinence in nursing home residents.
        • Levy-Storms L.
        • Schnelle J.F.
        • Simmons S.F.
        What do family members notice following an intervention to improve mobility and incontinence care for nursing home residents? An analysis of open-ended comments.
        • Ouslander J.G.
        • AI-Samarrai N.
        • Schnelle J.F.
        Prompted voiding for nighttime incontinence in nursing homes: Is it effective?.
        • Ouslander J.G.
        • Griffiths P.C.
        • McConnell E.
        • et al.
        Functional incidental training: A randomized, controlled, crossover trial in Veterans Affairs nursing homes.
        • Rahman A.N.
        • Schnelle J.F.
        • Applebaum R.
        • et al.
        Distance coursework and coaching to improve nursing home incontinence care: Lessons learned.
        • Rahman A.N.
        • Schnelle J.F.
        • Osterweil D.
        Implementing toileting trials in nursing homes: Evaluation of a dissemination strategy.
        • Schnelle J.F.
        • Alessi C.A.
        • Simmons S.F.
        • et al.
        Translating clinical research into practice: A randomized controlled trial of exercise and incontinence care with nursing home residents.
        • Schnelle J.F.
        • Leung F.W.
        Urinary and fecal incontinence in nursing homes.
        • Schnelle J.F.
        • Leung F.W.
        • Rao S.S.
        • et al.
        A controlled trial of an intervention to improve urinary and fecal incontinence and constipation.
        • Schnelle J.F.
        • MacRae P.G.
        • Ouslander J.
        • et al.
        Functional incidental training, mobility performance and incontinence care with nursing home residents.
        • Schnelle J.F.
        • Newman D.
        • White M.
        • et al.
        Maintaining continence in nursing home residents through the application of industrial quality control.
        • Schnelle J.F.
        • Simmons S.F.
        • Beuscher L.
        • et al.
        Prevalence of constipation symptoms in fecally incontinent nursing home residents.
        • Schnelle J.F.
        • Traughber B.
        • Sowell V.A.
        • et al.
        Prompted voiding treatment of urinary incontinence in nursing home patients: A behavior management approach for nursing home staff.
        demonstrated how interventions have been progressively refined over time, with an increasing emphasis on the involvement of care home staff in training and structured programs of prompted voiding. There was, however, a lack of evidence or guidance about how to implement these approaches in settings with limited access to doctors or how a person's dementia will have an impact on implementation.
      • (2)
        A wider care home literature on what needs to be in place when introducing new interventions to improve care for people with dementia in care homes that were predicated on person-centered approaches. This included interventions such as person-centered care, medicine management, therapy interventions,
        • Abbott R.A.
        • Whear R.
        • Thompson-Coon J.
        • et al.
        Effectiveness of mealtime interventions on nutritional outcomes for the elderly living in residential care: A systematic review and meta-analysis.
        • Goodman C.
        • Davies S.L.
        • Dickinson A.
        • et al.
        A study to develop integrated working between primary health care services and care homes.
        and nonpharmacological approaches to the reduction and management of behavioral and psychological symptoms of dementia.
        • Ballard C.
        • O'Brien J.
        • James I.
        • et al.
        Quality of life for people with dementia living in residential and nursing home care: The impact of performance on activities of daily living, behavioral and psychological symptoms, language skills and psychotropic drugs.
        • Fossey J.
        • Ballard C.
        • Juszczak E.
        • et al.
        Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia: Cluster randomised trial.
        • Fossey J.
        • Masson S.
        • Stafford J.
        • et al.
        The disconnect between evidence and practice: A systematic review of person-centred interventions and training manuals for care home staff working with people with dementia.
        • Lawrence V.
        • Fossey J.
        • Ballard C.
        • et al.
        Helping staff to implement psychosocial interventions in care homes: Augmenting existing practices and meeting needs for support.
        • Lawrence V.
        • Fossey J.
        • Ballard C.
        • et al.
        Improving quality of life for people with dementia in care homes: Making psychosocial interventions work.
        • Whitaker R.
        • Ballard C.
        • Stafford J.
        • et al.
        Feasibility study of an optimised person-centred intervention to improve mental health and reduce antipsychotics amongst people with dementia in care homes: Study protocol for a randomised controlled trial.
        • Whitaker R.
        • Fossey J.
        • Ballard C.
        • et al.
        Improving Well-being and Health for People with Dementia (WHELD): Study protocol for a randomised controlled trial.
        The relevant learning from these studies was that training, learning, mentoring, and posttraining support are important, but do not of themselves lead to staff engagement and motivation to change practice or care routines.
      • (3)
        Guidance and review articles relevant to the management of FI in older people living in care homes/long-term care.
        • Bravo C.V.
        Urinary and faecal incontinence and dementia.
        • Wald A.
        Faecal incontinence in the elderly: Epidemiology and management.
        • Rockville M.D.
        • Fonda D.
        • DuBeau C.E.
        • et al.
        Incontinence in the frail elderly.
        • Akhtar A.J.
        • Padda M.
        Fecal incontinence in older patients.
        • Norton C.
        • Thomas L.
        • Hill J.
        Management of faecal incontinence in adults: Summary of NICE guidance.
        (NICE) NIFHACE
        Dementia quality standard.
        • Bellicini N.
        • Molloy P.J.
        • Caushaj P.
        • Kozlowski P.
        Fecal incontinence: A review.
        • Shah B.J.
        • Chokhavatia S.
        • Rose S.
        Fecal incontinence in the elderly: FAQ.
        • Harari D.
        • Husk J.
        • Lowe D.
        • Wagg A.
        National audit of continence care: Adherence to National Institute for Health and Clinical Excellence (NICE) Guidance in older versus younger adults with faecal incontinence.
        • Coggrave M.
        • Norton C.
        • Cody J.D.
        Management of faecal incontinence and constipation in adults with central neurological diseases.
        National Institute for Health and Care Excellence (NICE)
        Faecal-incontinence overview.
        National Institute for Health and Care Excellence (NICE)
        Managing faecal incontinence in specific groups.
        This work emphasized the importance of assessment, nutrition, hydration, and the diagnosis of fecal impaction. The underlying narrative being that clinical assessment was essential, but how this was achieved lacked detail, particularly in care home settings for people living with dementia. The scoping highlighted a gap in the research between studies focused on solely dementia care and those focused solely on continence care. This gap is picked up later in the article whereby we assess how included continence studies measured and considered dementia.
      • (4)
        Absorbent products for FI. Although extensively used in care homes for the management of FI, we found very few studies that have compared the different designs of absorbent products.
        • Fader M.
        • Cottenden A.
        • Getliffe K.
        • et al.
        Absorbent products for urinary/faecal incontinence: A comparative evaluation of key product designs.
        • Fader M.
        • Bliss D.
        • Cottenden A.
        • et al.
        Continence products: Research priorities to improve the lives of people with urinary and/or fecal leakage.
        • Bliss D.Z.
        • Fischer L.R.
        • Savik K.
        Managing fecal incontinence: Self-care practices of older adults.
        • Bliss D.Z.
        • Lewis J.
        • Hasselman K.
        • et al.
        Use and evaluation of disposable absorbent products for managing fecal incontinence by community-living people.
        • Bliss D.Z.
        • Savik K.
        Use of an absorbent dressing specifically for fecal incontinence.
        • Beguin A.-M.
        • Malaquin-Pavan E.
        • Guihaire C.
        • et al.
        Improving diaper design to address incontinence associated dermatitis.
        The emphasis has been mainly on testing pads with patients with urinary incontinence (UI), and the studies did not consider how dementia affects the person's use of continence aids nor their use for FI.

      Outcomes

      From the stakeholder interviews and across the different types of literature, the reduction of distress and improvement in symptoms were important measures of effectiveness, but there was little consensus on what might be other important outcomes (see Appendix 1). Cost-related outcomes in particular are not well defined or measured.

      Clarifying Definitions of FI and Dementia

      The scoping identified the need for a more dementia-focused definition of FI that sees it as an aspect of “toileting difficulties” that may be experienced by people living with dementia. Toileting difficulties are the “voiding of urine or feces either following an unsuccessful effort or with no apparent attempt to use an acceptable facility.”
      • Stokes G.
      Toileting difficulties or incontinence? Changing the landscape of dementia care. British Geriatrics Society Bladder and Bowel Conference.
      This conceptualization reframes continence in the social and environmental context. How the original definition of “involuntary loss” translates to people with dementia and FI in studies is unclear, with the frequency of FI episodes classed as constituting FI differing between studies. FI in this broader definition is recognized as having multiple causes that may include constipation; cortical atrophy; neuropsychological, sensory, or physical disability (mobility and dexterity); medication effects (sedatives, antidepressants, diuretics); or psychological factors (personality, habits, life experience, and mood). All of these causes are further compounded by the care home design, including distance to the toilets, obstacles, visual access, signage, and the actions and attitudes of others.
      The original review brief was to look at advanced dementia; however, the lack of continence studies addressing dementia, and inconsistency in how dementia is assessed and recorded for care home residents, coupled with the lack of consensus as to how to define “advanced dementia” in relation to continence care, meant that the distinction between dementia and advanced dementia was not useful. Moreover, as FI in care home residents is almost always associated with UI,
      • Saga S.
      • Vinsnes A.G.
      • Morkved S.
      • et al.
      Prevalence and correlates of fecal incontinence among nursing home residents: A population-based cross-sectional study.
      there was limited value in focusing solely on FI in people living with dementia (PLWD) and so UI evidence was also considered.

      Theory Testing

      The 6 theory areas were tested with the evidence from the 62 included sources. The detailed data extraction forms noted for which theory area(s) the source had relevant evidence (confirming or disconfirming), and multiple CMO configurations specific to the source. Table 1 gives an overview of the type of evidence by broad research themes and shows the diversity of evidence used. We now present the evidence by theory area.
      Table 1Description of Evidence Sources by Broad Research Themes

        Evidence on continence care (but not FI specifically) and dementia in a care home setting: 3 sources
        • Andrews J.
        Maintaining continence in people with dementia.
        • Namazi K.H.
        • DiNatale Johnson B.
        Physical environmental cues to reduce the problem of incontinence in Alzheimer's disease units.
        • Namazi K.H.
        • DiNatale Johnson B.
        Environmental effects on incontinence problems in Alzheimer's disease patients.

      • Two intervention studies from the 1990s about environmental effects on incontinence problems in patients with Alzheimer disease living in a specialist care facility and a book for direct care staff of people with dementia resident in care homes with a section specifically addressing continence care.

        Evidence on UI in a care home setting, but not dementia or FI: 21 sources
        • Saga S.
        • Vinsnes A.G.
        • Morkved S.
        • et al.
        What characteristics predispose to continence in nursing home residents? A population-based cross-sectional study.
        • Flanagan L.
        • Roe B.
        • Jack B.
        • et al.
        Systematic review of care intervention studies for the management of incontinence and promotion of continence in older people in care homes with urinary incontinence as the primary focus (1966–2010).
        • Levy-Storms L.
        • Schnelle J.F.
        • Simmons S.F.
        What do family members notice following an intervention to improve mobility and incontinence care for nursing home residents? An analysis of open-ended comments.
        • Rahman A.N.
        • Schnelle J.F.
        • Applebaum R.
        • et al.
        Distance coursework and coaching to improve nursing home incontinence care: Lessons learned.
        • Rahman A.N.
        • Schnelle J.F.
        • Osterweil D.
        Implementing toileting trials in nursing homes: Evaluation of a dissemination strategy.
        • Gage H.
        • Goodman C.
        • Davies S.L.
        • et al.
        Laxative use in care homes.
        • Burgio L.D.
        • Engel B.T.
        • Hawkins A.
        • et al.
        A staff management system for maintaining improvements in continence with elderly nursing home residents.
        • Engel B.T.
        • Burgio L.D.
        • McCormick K.A.
        • et al.
        Behavioral treatment of incontinence in the long-term care setting.
        • Grainger M.
        • Castledine G.
        • Wood N.
        • Dilley C.
        Researching the management of constipation in long-term care. Part 2.
        • Temkin-Greener H.
        • Cai S.
        • Zheng N.T.
        • et al.
        Nursing home work environment and the risk of pressure ulcers and incontinence.
        • Palese A.
        • Granzotto D.
        • Broll M.G.
        • Carlesso N.
        From health organization-centred standardization work process to a personhood-centred care process in an Italian nursing home: Effectiveness on bowel elimination model.
        • Ostaszkiewicz J.
        • O'Connell B.
        • Dunning T.
        Sociological responses to personal and continence care in residential aged care facilities.
        • Ostaszkiewicz J.
        • O'Connell B.
        • Dunning T.
        Ethical challenges associated with providing continence care in residential aged care facilities: Findings from a grounded theory study.
        • Clark J.
        Providing intimate continence care for people with learning disabilities.
        • Ostaszkiewicz J.
        • O'Connell B.
        • Dunning T.
        Fear and overprotection in Australian residential aged care facilities: The inadvertent impact of regulation on quality continence care.
        • Taunton R.L.
        • Swagerty D.L.
        • Lasseter J.A.
        • Lee R.H.
        Continent or incontinent? That is the question.
        • Heckenberg G.
        Improving and ensuring best practice continence management in residential aged care.
        • Hu T.W.
        • Igou J.F.
        • Kaltreider L.
        • et al.
        A clinical trial of behavioral therapy to improve urinary incontinence in nursing homes.
        • Mandl M.
        • Halfens R.J.
        • Lohrmann C.
        Incontinence care in nursing homes: A cross-sectional study.
        • Burgio L.D.
        • McCormick K.A.
        • Scheve A.S.
        • et al.
        The effects of changing prompted voiding schedules in the treatment of incontinence in nursing home residents.
        • Wright J.
        • McCormack B.
        • Coffey A.
        • McCarthy G.
        Evaluating the context within which continence care is provided in rehabilitation units for older people.

      • Sources from 1989–2015. Eight intervention studies (1 randomized controlled trial [RCT]), 9 observational, 4 qualitative interview studies, and a review.

        Evidence on FI and/or bowel health (also covering constipation) in a care home setting, but not dementia: 15 sources
        • Johanson J.F.
        • Irizarry F.
        • Doughty A.
        Risk factors for fecal incontinence in a nursing home population.
        • Ouslander J.G.
        • Simmons S.
        • Schnelle J.
        • et al.
        Effects of prompted voiding on fecal continence among nursing home residents.
        • Leung F.W.
        • Schnelle J.F.
        Urinary and fecal incontinence in nursing home residents.
        • Schnelle J.F.
        • Leung F.W.
        • Rao S.S.
        • et al.
        A controlled trial of an intervention to improve urinary and fecal incontinence and constipation.
        • Akhtar A.J.
        • Padda M.
        Fecal incontinence in older patients.
        • Tobin G.W.
        • Brocklehurst J.C.
        Faecal incontinence in residential homes for the elderly: Prevalence, aetiology and management.
        • Gillespie D.
        • Hood K.
        • Bayer A.
        • et al.
        Antibiotic prescribing and associated diarrhoea: A prospective cohort study of care home residents.
        • Akpan A.
        • Gosney M.A.
        • Barret J.
        Factors contributing to fecal incontinence in older people and outcome of routine management in home, hospital and nursing home settings.
        • Leung F.W.
        • Rao S.S.
        Fecal incontinence in the elderly.
        • Potter J.
        • Peel P.
        • Mian S.
        • et al.
        National audit of continence care for older people: Management of faecal incontinence.
        • Blekken L.E.
        • Nakrem S.
        • Gjeilo K.H.
        • et al.
        Feasibility, acceptability, and adherence of two educational programs for care staff concerning nursing home patients' fecal incontinence: A pilot study preceding a cluster-randomized controlled trial.
        • Goodman C.
        Can district nurses and care home staff improve bowel care for older people using a clinical benchmarking tool?.
        • Saga S.
        Understanding faecal incontinence in nursing home patients: Epidemiology and nurses' management [Dissertation].
        • Saga S.
        • Seim A.
        • Morkved S.
        • et al.
        Bowel problem management among nursing home residents: A mixed methods study.
        • Akpan A.
        • Gosney M.A.
        • Barrett J.
        Privacy for defecation and fecal incontinence in older adults.

      • Sources from 1986–2015 focusing on FI, bowel problems (including constipation), and diarrhea in care homes. Five intervention studies (1 RCT), 7 observational studies, and 3 reviews.

        Evidence from interventions specifically for people with dementia, but not continence interventions, in care home settings: 12 sources
        • Fossey J.
        • Ballard C.
        • Juszczak E.
        • et al.
        Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia: Cluster randomised trial.
        • Lawrence V.
        • Fossey J.
        • Ballard C.
        • et al.
        Improving quality of life for people with dementia in care homes: Making psychosocial interventions work.
        • Stein-Padbury J.
        • Chenoweth L.
        • Jeon Y.-H.
        • et al.
        Implementing person-centered care in residential dementia care.
        • Thompson Coon J.
        • Abbott R.
        • Rogers M.
        • et al.
        Interventions to reduce inappropriate prescribing of antipsychotic medications in people with dementia resident in care homes: A systematic review.
        • Gozalo P.
        • Prakash S.
        • Qato D.M.
        • et al.
        Effect of the bathing without a battle training intervention on bathing-associated physical and verbal outcomes in nursing home residents with dementia: A randomized crossover diffusion study.
        • Ericson-Lidman E.
        • Larsson L.L.
        • Norberg A.
        Caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD.
        • Boersma P.
        • van Weert J.C.
        • Lakerveld J.
        • Droes R.-M.
        The art of successful implementation of psychosocial interventions in residential dementia care: A systematic review of the literature based on the RE-AIM framework: Corrigendum.
        • Rapp A.
        • Mell T.
        • Majic T.
        • et al.
        Agitation in Nursing Home Residents With Dementia (VIDEANT Trial): Effects of a cluster-randomized, controlled, guideline implementation trial.
        • Sidani S.
        • Leclerc C.
        • Streiner D.
        Implementation of the abilities-focused approach to morning care of people with dementia by nursing staff.
        • Chenoweth L.
        Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: A cluster-randomised trial.
        • Hoeffer B.
        • Talerico K.A.
        • Rasin J.
        • et al.
        Assisting cognitively impaired nursing home residents with bathing: Effects of two bathing interventions on caregiving.
        • Watson R.
        • Manthorpe J.
        • Stimpson A.
        Learning from carers' experiences: Helping older people with dementia to eat and drink.

      • Sources from 2003–2015 covering psychosocial interventions, morning care, bathing, eating and drinking, and PCC interventions. Seven intervention studies (3 cluster RCTs and 1 RCT), 4 reviews, and an observational study.

        Evidence on “implementation” of interventions in a care home setting: 7 sources
        • Lawrence V.
        • Fossey J.
        • Ballard C.
        • et al.
        Helping staff to implement psychosocial interventions in care homes: Augmenting existing practices and meeting needs for support.
        • Ryden M.B.
        • Snyder M.
        • Gross C.R.
        • et al.
        Value-added outcomes: The use of advanced practice nurses in long-term care facilities.
        • Levenson S.A.
        • Morley J.E.
        Evidence rocks in long-term care, but does it roll?.
        • Kinley J.
        The effect of using high facilitation when implementing the Gold Standards Framework in Care Homes programme: A cluster randomised controlled trial.
        • Robinson S.B.
        • Rosher R.B.
        Can a beverage cart help improve hydration?.
        • Killett A.
        • Burns D.
        • Kelly F.
        • et al.
        Digging deep: How organisational culture affects care home residents' experiences.
        • Cambridge P.
        Developing policies, procedures and guidelines for intimate and personal care in services for people with learning disabilities.
        • Cambridge P.
        • Carnaby S.
        Multi-disciplinary working and care coordination.

      • Sources from 2000–2015 covering implementation in care home settings, 3 intervention studies, 2 observational studies, 1 review, and 1 book (2 chapters).

        Evidence from specific novel interventions to manage continence/bowel health in a care home context: 4 sources
        • Booth J.
        • Hagen S.
        • McClurg D.
        • et al.
        A feasibility study of transcutaneous posterior tibial nerve stimulation for bladder and bowel dysfunction in elderly adults in residential care.
        • Mimidis K.
        • Galinsky D.
        • Rimon E.
        • et al.
        Use of a device that applies external kneading-like force on the abdomen for treatment of constipation.
        • Wai A.A.
        • Fook V.F.
        • Jayachandran M.
        • et al.
        Smart wireless continence management system for persons with dementia.
        • Haig L.
        The effect of vibration therapy on bowel stimulation in elderly patients with dementia-a pilot study. National Research Register [Internet].

      • Studies from 2000–2013 that address residents in care homes with dementia or make reference to the application to the person with dementia. Four intervention studies (1 RCT).

      Theory 1: Clinician-led Support, Assessment, and Review Will Achieve Observable Improvements in FI

      This area reflects the assumptions and training of clinicians. Twenty-one sources were relevant to this area.
      • Saga S.
      • Vinsnes A.G.
      • Morkved S.
      • et al.
      What characteristics predispose to continence in nursing home residents? A population-based cross-sectional study.
      • Rahman A.N.
      • Schnelle J.F.
      • Osterweil D.
      Implementing toileting trials in nursing homes: Evaluation of a dissemination strategy.
      • Schnelle J.F.
      • Traughber B.
      • Sowell V.A.
      • et al.
      Prompted voiding treatment of urinary incontinence in nursing home patients: A behavior management approach for nursing home staff.
      • Fossey J.
      • Ballard C.
      • Juszczak E.
      • et al.
      Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia: Cluster randomised trial.
      • Akhtar A.J.
      • Padda M.
      Fecal incontinence in older patients.
      • Andrews J.
      Maintaining continence in people with dementia.
      • Gage H.
      • Goodman C.
      • Davies S.L.
      • et al.
      Laxative use in care homes.
      • Tobin G.W.
      • Brocklehurst J.C.
      Faecal incontinence in residential homes for the elderly: Prevalence, aetiology and management.
      • Gillespie D.
      • Hood K.
      • Bayer A.
      • et al.
      Antibiotic prescribing and associated diarrhoea: A prospective cohort study of care home residents.
      • Akpan A.
      • Gosney M.A.
      • Barret J.
      Factors contributing to fecal incontinence in older people and outcome of routine management in home, hospital and nursing home settings.
      • Leung F.W.
      • Rao S.S.
      Fecal incontinence in the elderly.
      • Potter J.
      • Peel P.
      • Mian S.
      • et al.
      National audit of continence care for older people: Management of faecal incontinence.
      • Stein-Padbury J.
      • Chenoweth L.
      • Jeon Y.-H.
      • et al.
      Implementing person-centered care in residential dementia care.
      • Thompson Coon J.
      • Abbott R.
      • Rogers M.
      • et al.
      Interventions to reduce inappropriate prescribing of antipsychotic medications in people with dementia resident in care homes: A systematic review.
      • Ryden M.B.
      • Snyder M.
      • Gross C.R.
      • et al.
      Value-added outcomes: The use of advanced practice nurses in long-term care facilities.
      • Levenson S.A.
      • Morley J.E.
      Evidence rocks in long-term care, but does it roll?.
      • Kinley J.
      The effect of using high facilitation when implementing the Gold Standards Framework in Care Homes programme: A cluster randomised controlled trial.
      • Robinson S.B.
      • Rosher R.B.
      Can a beverage cart help improve hydration?.
      • Booth J.
      • Hagen S.
      • McClurg D.
      • et al.
      A feasibility study of transcutaneous posterior tibial nerve stimulation for bladder and bowel dysfunction in elderly adults in residential care.
      • Schnelle J.F.
      • Sowell V.A.
      • Hu T.W.
      • Traughber B.
      Reduction of urinary incontinence in nursing homes: Does it reduce or increase costs?.
      • Ouslander J.G.
      • Connor A.
      • Pitt A.
      Habit training and oxybutynin for incontinence in nursing home patients: A placebo-controlled trial.
      Evidence suggested that when clinicians (specifically geriatricians) apportion time and energy to working with care homes, they can drive improvements in the prevention and management of FI. However, studies did not specify exactly what the clinicians' role entailed, nor was it clear if the improved outcomes applied to PLWD or if having dementia affected someone's ability to benefit. This approach is much influenced by the seminal study of Tobin and Brocklehurst,
      • Tobin G.W.
      • Brocklehurst J.C.
      Faecal incontinence in residential homes for the elderly: Prevalence, aetiology and management.
      which concluded that most FI was due to fecal impaction and could be resolved with “simple measures.” However, a study 20 years on by Akpan et al
      • Akpan A.
      • Gosney M.A.
      • Barret J.
      Factors contributing to fecal incontinence in older people and outcome of routine management in home, hospital and nursing home settings.
      found that FI was not resolved in their sample of nursing home patients and suggested that either the original study does not apply to current nursing home populations (who are now significantly older, with more comorbidities and severe cognitive impairment) or findings are not being implemented, or both.
      Review and guidance literature (that was summarized in the scoping review) note the high prevalence of FI in physically and cognitively impaired patients and describes available physical examination and diagnostic tests. Details on how to take a history and complete examinations in PLWD are not provided. Difficulties achieving the ideal level of investigation and assessment, especially in long-term care facilities, were noted. Current literature does not address the complexity of delivering interventions for PLWD who have FI.

      Theory 2: Ongoing Teaching, Review, and Feedback to Staff on Assessment and How to Reduce and Manage FI

      The importance of clinician assessment is linked to the assumption that giving staff access to the appropriate training, education, and facilitation will result in a change in practice. This area is important to consider, as so many care home interventions use a training, education, or facilitation approach. Sixteen sources were relevant to this area, with some detailed accounts of implementing interventions through training and education.
      • Rahman A.N.
      • Schnelle J.F.
      • Applebaum R.
      • et al.
      Distance coursework and coaching to improve nursing home incontinence care: Lessons learned.
      • Rahman A.N.
      • Schnelle J.F.
      • Osterweil D.
      Implementing toileting trials in nursing homes: Evaluation of a dissemination strategy.
      • Fossey J.
      • Ballard C.
      • Juszczak E.
      • et al.
      Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia: Cluster randomised trial.
      • Burgio L.D.
      • Engel B.T.
      • Hawkins A.
      • et al.
      A staff management system for maintaining improvements in continence with elderly nursing home residents.
      • Engel B.T.
      • Burgio L.D.
      • McCormick K.A.
      • et al.
      Behavioral treatment of incontinence in the long-term care setting.
      • Grainger M.
      • Castledine G.
      • Wood N.
      • Dilley C.
      Researching the management of constipation in long-term care. Part 2.
      • Temkin-Greener H.
      • Cai S.
      • Zheng N.T.
      • et al.
      Nursing home work environment and the risk of pressure ulcers and incontinence.
      • Palese A.
      • Granzotto D.
      • Broll M.G.
      • Carlesso N.
      From health organization-centred standardization work process to a personhood-centred care process in an Italian nursing home: Effectiveness on bowel elimination model.
      • Blekken L.E.
      • Nakrem S.
      • Gjeilo K.H.
      • et al.
      Feasibility, acceptability, and adherence of two educational programs for care staff concerning nursing home patients' fecal incontinence: A pilot study preceding a cluster-randomized controlled trial.
      • Goodman C.
      Can district nurses and care home staff improve bowel care for older people using a clinical benchmarking tool?.
      • Stein-Padbury J.
      • Chenoweth L.
      • Jeon Y.-H.
      • et al.
      Implementing person-centered care in residential dementia care.
      • Thompson Coon J.
      • Abbott R.
      • Rogers M.
      • et al.
      Interventions to reduce inappropriate prescribing of antipsychotic medications in people with dementia resident in care homes: A systematic review.
      • Gozalo P.
      • Prakash S.
      • Qato D.M.
      • et al.
      Effect of the bathing without a battle training intervention on bathing-associated physical and verbal outcomes in nursing home residents with dementia: A randomized crossover diffusion study.
      • Ericson-Lidman E.
      • Larsson L.L.
      • Norberg A.
      Caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD.
      • Boersma P.
      • van Weert J.C.
      • Lakerveld J.
      • Droes R.-M.
      The art of successful implementation of psychosocial interventions in residential dementia care: A systematic review of the literature based on the RE-AIM framework: Corrigendum.
      • Ryden M.B.
      • Snyder M.
      • Gross C.R.
      • et al.
      Value-added outcomes: The use of advanced practice nurses in long-term care facilities.
      Two articles reporting the use of distance coaching and coursework in US nursing homes
      • Rahman A.N.
      • Schnelle J.F.
      • Applebaum R.
      • et al.
      Distance coursework and coaching to improve nursing home incontinence care: Lessons learned.
      • Rahman A.N.
      • Schnelle J.F.
      • Osterweil D.
      Implementing toileting trials in nursing homes: Evaluation of a dissemination strategy.
      found qualified support for using this approach to encourage staff (mostly nurses) to implement prompted voiding. One-third of nursing homes dropped out of the program; however, for those completing the courses, there was improvement in knowledge (average pretest to posttest score improvement, independent t test): course 1 participants (n = 15) 57% to 73% (P = .01) and course 2 (n = 35) participants 57% to 85% (P < .001). Although the authors discuss issues around feasibility of implementing this approach and clearly recorded and calculated costs of the training intervention, there was insufficient detail provided to understand which elements of the training were working for particular nursing homes or staff groups. Lack of “time to do training” was cited as a barrier, even though webinar timings were adapted to suit course participants. The wider care home literature
      • Fossey J.
      • Ballard C.
      • Juszczak E.
      • et al.
      Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia: Cluster randomised trial.
      • Lawrence V.
      • Fossey J.
      • Ballard C.
      • et al.
      Helping staff to implement psychosocial interventions in care homes: Augmenting existing practices and meeting needs for support.
      • Lawrence V.
      • Fossey J.
      • Ballard C.
      • et al.
      Improving quality of life for people with dementia in care homes: Making psychosocial interventions work.
      • Boersma P.
      • van Weert J.C.
      • Lakerveld J.
      • Droes R.-M.
      The art of successful implementation of psychosocial interventions in residential dementia care: A systematic review of the literature based on the RE-AIM framework: Corrigendum.
      highlighted similar issues around “substantial time commitment” required for training and mentoring. Results from a qualitative study on the implementation of psychosocial interventions in care homes to reduce antipsychotic prescribing
      • Lawrence V.
      • Fossey J.
      • Ballard C.
      • et al.
      Helping staff to implement psychosocial interventions in care homes: Augmenting existing practices and meeting needs for support.
      suggest that, although knowledge, skills, and time may be important contextual factors for implementing interventions in care homes, a key mechanism comes from activities that foster the development of a shared understanding of the problem and an enhanced status of the work. The following is an example CMO from this study: a training program (to reduce antipsychotic drug use in care homes) was delivered to all staff AND family members (C). This program triggered a shared understanding about behaviors staff find challenging and the approaches that can be used to improve these (M) with the outcome (O) that staff groups and family work together to provide care to the resident and reduce the use of antipsychotic drugs.
      Evidence suggests that offering more training for care staff on FI with structured guidelines and facilitation will not lead to better management or reduction of FI if it does not account for key contexts, such as the work pressures of the care home or consider if staff have the autonomy to act. A recent study
      • Blekken L.E.
      • Nakrem S.
      • Gjeilo K.H.
      • et al.
      Feasibility, acceptability, and adherence of two educational programs for care staff concerning nursing home patients' fecal incontinence: A pilot study preceding a cluster-randomized controlled trial.
      testing the hypothesis “that fecal incontinence can be prevented, cured, or ameliorated by offering care staff knowledge of best practice” had difficulty recruiting nursing homes and found changes in the rates of FI were not sustained. It was concluded “For the main study, empowering RNs [Registered Nurses] 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.” Analyzing evidence shows how contexts can be linked to outcomes by theorizing potential mechanisms. Training interventions may be successful or unsuccessful depending on context and complex interactions of culture and practice.

      Theory 3: Knowledge on Causes, Management, and Prevention of Constipation for Older People with Dementia

      A commonly held belief, supported with early empirical work,
      • Chassagne P.
      • Jego A.
      • Gloc P.
      • et al.
      Does treatment of constipation improve faecal incontinence in institutionalized elderly patients?.
      is that successful management of constipation could lead to a reduction in FI for older people in institutionalized care. This theory area overlaps with Theory 1 (clinician-led support and review). The key difference is that a focus on management of constipation as a significant contributory factor of FI will lead to overall improvement in FI.
      Sixteen sources provided relevant evidence.
      • Saga S.
      • Vinsnes A.G.
      • Morkved S.
      • et al.
      What characteristics predispose to continence in nursing home residents? A population-based cross-sectional study.
      • Johanson J.F.
      • Irizarry F.
      • Doughty A.
      Risk factors for fecal incontinence in a nursing home population.
      • Ouslander J.G.
      • Simmons S.
      • Schnelle J.
      • et al.
      Effects of prompted voiding on fecal continence among nursing home residents.
      • Leung F.W.
      • Schnelle J.F.
      Urinary and fecal incontinence in nursing home residents.
      • Schnelle J.F.
      • Leung F.W.
      • Rao S.S.
      • et al.
      A controlled trial of an intervention to improve urinary and fecal incontinence and constipation.
      • Akhtar A.J.
      • Padda M.
      Fecal incontinence in older patients.
      • Palese A.
      • Granzotto D.
      • Broll M.G.
      • Carlesso N.
      From health organization-centred standardization work process to a personhood-centred care process in an Italian nursing home: Effectiveness on bowel elimination model.
      • Leung F.W.
      • Rao S.S.
      Fecal incontinence in the elderly.
      • Goodman C.
      Can district nurses and care home staff improve bowel care for older people using a clinical benchmarking tool?.
      • Saga S.
      Understanding faecal incontinence in nursing home patients: Epidemiology and nurses' management [Dissertation].
      • Saga S.
      • Seim A.
      • Morkved S.
      • et al.
      Bowel problem management among nursing home residents: A mixed methods study.
      • Levenson S.A.
      • Morley J.E.
      Evidence rocks in long-term care, but does it roll?.
      • Kinley J.
      The effect of using high facilitation when implementing the Gold Standards Framework in Care Homes programme: A cluster randomised controlled trial.
      • Robinson S.B.
      • Rosher R.B.
      Can a beverage cart help improve hydration?.
      • Booth J.
      • Hagen S.
      • McClurg D.
      • et al.
      A feasibility study of transcutaneous posterior tibial nerve stimulation for bladder and bowel dysfunction in elderly adults in residential care.
      • Mimidis K.
      • Galinsky D.
      • Rimon E.
      • et al.
      Use of a device that applies external kneading-like force on the abdomen for treatment of constipation.
      A 1996 study
      • Ouslander J.G.
      • Simmons S.
      • Schnelle J.
      • et al.
      Effects of prompted voiding on fecal continence among nursing home residents.
      found that prompted voiding had increased continent bowel movements. They suggested the increase in physical activity and fluid intake resolved fecal impaction. Ten years later, the same team warned, however, that overuse of laxatives as prophylactic treatment for constipation can result in FI.
      • Leung F.W.
      • Schnelle J.F.
      Urinary and fecal incontinence in nursing home residents.
      Other studies
      • Gage H.
      • Goodman C.
      • Davies S.L.
      • et al.
      Laxative use in care homes.
      • Goodman C.
      Can district nurses and care home staff improve bowel care for older people using a clinical benchmarking tool?.
      found reduction in laxative-induced FI did not arise due to better understanding of causes of constipation but from change in care home practice to routinely dispensing laxatives that had been prescribed pro re nata (PRN). More recent work by Saga et al
      • Saga S.
      Understanding faecal incontinence in nursing home patients: Epidemiology and nurses' management [Dissertation].
      • Saga S.
      • Seim A.
      • Morkved S.
      • et al.
      Bowel problem management among nursing home residents: A mixed methods study.
      found that a preoccupation of nursing staff with constipation and a person's bowel being empty meant care home staff accepted FI and used pads to cope with the consequences. Evidence suggests that although knowledge of constipation and its causes is important, there could be unintended consequences, such as overuse of laxatives and acceptance of use of pads.

      Theory 4: Interventions that Reflect the Degree of Cognitive and Physical Capacity of a Resident: Personalized Care Planning

      This theory area encapsulates the patient-centered care (PCC) approach that values individualization, empathic understanding, and creating relationships to provide for psychological needs: comfort, identity, inclusion, attachment, and occupation, thereby promoting well-being and minimizing distress for PLWD. In this framing, FI or its treatment is an aspect of health that may affect the toileting difficulties people can experience.
      • Stokes G.
      Toileting difficulties or incontinence? Changing the landscape of dementia care. British Geriatrics Society Bladder and Bowel Conference.
      Thirty-one sources had evidence relevant to this area.
      • Ouslander J.G.
      • Simmons S.
      • Schnelle J.
      • et al.
      Effects of prompted voiding on fecal continence among nursing home residents.
      • Leung F.W.
      • Schnelle J.F.
      Urinary and fecal incontinence in nursing home residents.
      • Schnelle J.F.
      • Leung F.W.
      • Rao S.S.
      • et al.
      A controlled trial of an intervention to improve urinary and fecal incontinence and constipation.
      • Fossey J.
      • Ballard C.
      • Juszczak E.
      • et al.
      Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia: Cluster randomised trial.
      • Lawrence V.
      • Fossey J.
      • Ballard C.
      • et al.
      Helping staff to implement psychosocial interventions in care homes: Augmenting existing practices and meeting needs for support.
      • Lawrence V.
      • Fossey J.
      • Ballard C.
      • et al.
      Improving quality of life for people with dementia in care homes: Making psychosocial interventions work.
      • Akhtar A.J.
      • Padda M.
      Fecal incontinence in older patients.
      • Andrews J.
      Maintaining continence in people with dementia.
      • Namazi K.H.
      • DiNatale Johnson B.
      Physical environmental cues to reduce the problem of incontinence in Alzheimer's disease units.
      • Palese A.
      • Granzotto D.
      • Broll M.G.
      • Carlesso N.
      From health organization-centred standardization work process to a personhood-centred care process in an Italian nursing home: Effectiveness on bowel elimination model.
      • Ostaszkiewicz J.
      • O'Connell B.
      • Dunning T.
      Sociological responses to personal and continence care in residential aged care facilities.
      • Ostaszkiewicz J.
      • O'Connell B.
      • Dunning T.
      Ethical challenges associated with providing continence care in residential aged care facilities: Findings from a grounded theory study.
      • Clark J.
      Providing intimate continence care for people with learning disabilities.
      • Ostaszkiewicz J.
      • O'Connell B.
      • Dunning T.
      Fear and overprotection in Australian residential aged care facilities: The inadvertent impact of regulation on quality continence care.
      • Gillespie D.
      • Hood K.
      • Bayer A.
      • et al.
      Antibiotic prescribing and associated diarrhoea: A prospective cohort study of care home residents.
      • Goodman C.
      Can district nurses and care home staff improve bowel care for older people using a clinical benchmarking tool?.
      • Saga S.
      Understanding faecal incontinence in nursing home patients: Epidemiology and nurses' management [Dissertation].
      • Saga S.
      • Seim A.
      • Morkved S.
      • et al.
      Bowel problem management among nursing home residents: A mixed methods study.
      • Akpan A.
      • Gosney M.A.
      • Barrett J.
      Privacy for defecation and fecal incontinence in older adults.
      • Stein-Padbury J.
      • Chenoweth L.
      • Jeon Y.-H.
      • et al.
      Implementing person-centered care in residential dementia care.
      • Thompson Coon J.
      • Abbott R.
      • Rogers M.
      • et al.
      Interventions to reduce inappropriate prescribing of antipsychotic medications in people with dementia resident in care homes: A systematic review.
      • Gozalo P.
      • Prakash S.
      • Qato D.M.
      • et al.
      Effect of the bathing without a battle training intervention on bathing-associated physical and verbal outcomes in nursing home residents with dementia: A randomized crossover diffusion study.
      • Ericson-Lidman E.
      • Larsson L.L.
      • Norberg A.
      Caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD.
      • Boersma P.
      • van Weert J.C.
      • Lakerveld J.
      • Droes R.-M.
      The art of successful implementation of psychosocial interventions in residential dementia care: A systematic review of the literature based on the RE-AIM framework: Corrigendum.
      • Rapp A.
      • Mell T.
      • Majic T.
      • et al.
      Agitation in Nursing Home Residents With Dementia (VIDEANT Trial): Effects of a cluster-randomized, controlled, guideline implementation trial.
      • Sidani S.
      • Leclerc C.
      • Streiner D.
      Implementation of the abilities-focused approach to morning care of people with dementia by nursing staff.
      • Chenoweth L.
      Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: A cluster-randomised trial.
      • Hoeffer B.
      • Talerico K.A.
      • Rasin J.
      • et al.
      Assisting cognitively impaired nursing home residents with bathing: Effects of two bathing interventions on caregiving.
      • Robinson S.B.
      • Rosher R.B.
      Can a beverage cart help improve hydration?.
      • Killett A.
      • Burns D.
      • Kelly F.
      • et al.
      Digging deep: How organisational culture affects care home residents' experiences.
      • Wai A.A.
      • Fook V.F.
      • Jayachandran M.
      • et al.
      Smart wireless continence management system for persons with dementia.
      Evidence suggested managerial support and endorsement were needed to embed PCC within a care home.
      • Ericson-Lidman E.
      • Larsson L.L.
      • Norberg A.
      Caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD.
      There was not, however, a shared understanding of what PCC involves in care home settings.
      • Ericson-Lidman E.
      • Larsson L.L.
      • Norberg A.
      Caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD.
      Lawrence et al
      • Lawrence V.
      • Fossey J.
      • Ballard C.
      • et al.
      Helping staff to implement psychosocial interventions in care homes: Augmenting existing practices and meeting needs for support.
      found that a person-centered working style, and focus on residents as individuals with differing needs and preferences, could develop in settings in which staff were encouraged to form bonds with residents rather than taking a task-oriented approach. Studies that addressed the dementia-specific issues of providing personal and intimate care to care home residents
      • Gozalo P.
      • Prakash S.
      • Qato D.M.
      • et al.
      Effect of the bathing without a battle training intervention on bathing-associated physical and verbal outcomes in nursing home residents with dementia: A randomized crossover diffusion study.
      • Hoeffer B.
      • Talerico K.A.
      • Rasin J.
      • et al.
      Assisting cognitively impaired nursing home residents with bathing: Effects of two bathing interventions on caregiving.
      offer transferable learning about what needs to be in place to reduce distress and minimize resistance to care. This work showed promise, but noted that “organizational factors
      • Hoeffer B.
      • Talerico K.A.
      • Rasin J.
      • et al.
      Assisting cognitively impaired nursing home residents with bathing: Effects of two bathing interventions on caregiving.
      and “facility-wide culture change
      • Gozalo P.
      • Prakash S.
      • Qato D.M.
      • et al.
      Effect of the bathing without a battle training intervention on bathing-associated physical and verbal outcomes in nursing home residents with dementia: A randomized crossover diffusion study.
      were important for implementation. One Australian study
      • Ostaszkiewicz J.
      • O'Connell B.
      • Dunning T.
      Ethical challenges associated with providing continence care in residential aged care facilities: Findings from a grounded theory study.
      illustrated the tension that care home staff may experience when asked to implement PCC if, for example, the need for residents to appear clean and well-groomed was given priority over individualized approaches to care, such as prompted toileting.
      • Clark J.
      Providing intimate continence care for people with learning disabilities.
      To achieve outcomes, such as reduced resident distress, using a more reflective personalized approach requires both empathy and permission for staff to work in this way.
      • Schnelle J.F.
      • MacRae P.G.
      • Ouslander J.
      • et al.
      Functional incidental training, mobility performance and incontinence care with nursing home residents.
      Of 43 studies that addressed continence care in some form, only 20 included PLWD; of those, only 16 assessed the severity of the dementia (a detailed summary of these 20 studies can be found in the full report).

      Goodman CN, Buswell M, Russell B, et al. Managing faecal incontinence in people with advanced dementia resident in care homes, a realist synthesis of the evidence (FINCH study). Health Technol Assess. In Press 2017.

      It is striking that, apart from the acknowledgment that dementia is a risk factor for FI and that this increases with immobility, only 3 sources specifically address dementia behaviors and FI within an intervention. Two studies conducted in the early 1990s in an Alzheimer disease unit focused on improving environmental clues (signage and removing the visual barrier to the toilet in patient's rooms). The studies provided some evidence that appropriate visual cues can encourage toilet visits for older PLWD in aged care facilities, but this may not translate to appropriate toilet use.
      • Namazi K.H.
      • DiNatale Johnson B.
      Physical environmental cues to reduce the problem of incontinence in Alzheimer's disease units.
      • Namazi K.H.
      • DiNatale Johnson B.
      Environmental effects on incontinence problems in Alzheimer's disease patients.
      The third source is a practice tool for direct care staff of people with dementia resident in care homes with a section specifically addressing continence care, including pictures of how best to help people use the toilet. Examples include how to communicate nonverbally or what to do if someone “freezes” and refuses to sit.
      • Grealy J.
      • McMullen H.
      • Grealy J.
      Dementia care: A practical photographic guide.

      Theory 5: Establish a Common Understanding of the Potential for Recovery, Reduction, and Management of FI for People with Dementia

      This theory area posits that it is what staff believe about the potential for improvement or reduction in episodes of FI that determines the kind of continence care a person with dementia may receive.
      Twenty-two sources contributed to this theory area.
      • Saga S.
      • Vinsnes A.G.
      • Morkved S.
      • et al.
      What characteristics predispose to continence in nursing home residents? A population-based cross-sectional study.
      • Schnelle J.F.
      • Leung F.W.
      • Rao S.S.
      • et al.
      A controlled trial of an intervention to improve urinary and fecal incontinence and constipation.
      • Lawrence V.
      • Fossey J.
      • Ballard C.
      • et al.
      Helping staff to implement psychosocial interventions in care homes: Augmenting existing practices and meeting needs for support.
      • Akhtar A.J.
      • Padda M.
      Fecal incontinence in older patients.
      • Andrews J.
      Maintaining continence in people with dementia.
      • Engel B.T.
      • Burgio L.D.
      • McCormick K.A.
      • et al.
      Behavioral treatment of incontinence in the long-term care setting.
      • Temkin-Greener H.
      • Cai S.
      • Zheng N.T.
      • et al.
      Nursing home work environment and the risk of pressure ulcers and incontinence.
      • Ostaszkiewicz J.
      • O'Connell B.
      • Dunning T.
      Ethical challenges associated with providing continence care in residential aged care facilities: Findings from a grounded theory study.
      • Ostaszkiewicz J.
      • O'Connell B.
      • Dunning T.
      Fear and overprotection in Australian residential aged care facilities: The inadvertent impact of regulation on quality continence care.
      • Taunton R.L.
      • Swagerty D.L.
      • Lasseter J.A.
      • Lee R.H.
      Continent or incontinent? That is the question.
      • Tobin G.W.
      • Brocklehurst J.C.
      Faecal incontinence in residential homes for the elderly: Prevalence, aetiology and management.
      • Goodman C.
      Can district nurses and care home staff improve bowel care for older people using a clinical benchmarking tool?.
      • Saga S.
      Understanding faecal incontinence in nursing home patients: Epidemiology and nurses' management [Dissertation].
      • Saga S.
      • Seim A.
      • Morkved S.
      • et al.
      Bowel problem management among nursing home residents: A mixed methods study.
      • Stein-Padbury J.
      • Chenoweth L.
      • Jeon Y.-H.
      • et al.
      Implementing person-centered care in residential dementia care.
      • Gozalo P.
      • Prakash S.
      • Qato D.M.
      • et al.
      Effect of the bathing without a battle training intervention on bathing-associated physical and verbal outcomes in nursing home residents with dementia: A randomized crossover diffusion study.
      • Boersma P.
      • van Weert J.C.
      • Lakerveld J.
      • Droes R.-M.
      The art of successful implementation of psychosocial interventions in residential dementia care: A systematic review of the literature based on the RE-AIM framework: Corrigendum.
      • Hoeffer B.
      • Talerico K.A.
      • Rasin J.
      • et al.
      Assisting cognitively impaired nursing home residents with bathing: Effects of two bathing interventions on caregiving.
      • Ryden M.B.
      • Snyder M.
      • Gross C.R.
      • et al.
      Value-added outcomes: The use of advanced practice nurses in long-term care facilities.
      • Kinley J.
      The effect of using high facilitation when implementing the Gold Standards Framework in Care Homes programme: A cluster randomised controlled trial.
      • Killett A.
      • Burns D.
      • Kelly F.
      • et al.
      Digging deep: How organisational culture affects care home residents' experiences.
      • Ostaszkiewicz J.
      • Chestney T.
      • Roe B.
      Habit retraining for the management of urinary incontinence in adults.
      All were also associated with the theory areas around clinician-led assessment and review, ongoing teaching, review and feedback, and PCC approaches. In one multicomponent prompted voiding study in a care home,
      • Schnelle J.F.
      • Leung F.W.
      • Rao S.S.
      • et al.
      A controlled trial of an intervention to improve urinary and fecal incontinence and constipation.
      people with cognitive impairment responded particularly well to the intervention. This suggests older PLWD can benefit from toileting assistance and prompting. A study in Norwegian nursing homes found that some staff have negative perceptions about the possibility of improving FI in PLWD, and felt that it was not worth pursuing interventions other than pads.
      • Saga S.
      • Seim A.
      • Morkved S.
      • et al.
      Bowel problem management among nursing home residents: A mixed methods study.
      This suggests that a lack of shared understanding around the potential for reduction of FI is an important context that triggers a resistance in staff uptake of learning in FI care; thus, should be acknowledged and addressed in interventions, but may not be the key factor.

      Theory 6: Integral to the Everyday Work Pattern and Environment, “Fit”

      Recurring narratives from the care home research reviewed under the other theory areas underlined the need for new approaches to care to fit within existing structures of authority and working practices in the care home. Forty-one sources were relevant to this theory area.
      • Saga S.
      • Vinsnes A.G.
      • Morkved S.
      • et al.
      What characteristics predispose to continence in nursing home residents? A population-based cross-sectional study.
      • Levy-Storms L.
      • Schnelle J.F.
      • Simmons S.F.
      What do family members notice following an intervention to improve mobility and incontinence care for nursing home residents? An analysis of open-ended comments.
      • Rahman A.N.
      • Schnelle J.F.
      • Applebaum R.
      • et al.
      Distance coursework and coaching to improve nursing home incontinence care: Lessons learned.
      • Rahman A.N.
      • Schnelle J.F.
      • Osterweil D.
      Implementing toileting trials in nursing homes: Evaluation of a dissemination strategy.
      • Fossey J.
      • Ballard C.
      • Juszczak E.
      • et al.
      Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia: Cluster randomised trial.
      • Lawrence V.
      • Fossey J.
      • Ballard C.
      • et al.
      Helping staff to implement psychosocial interventions in care homes: Augmenting existing practices and meeting needs for support.
      • Lawrence V.
      • Fossey J.
      • Ballard C.
      • et al.
      Improving quality of life for people with dementia in care homes: Making psychosocial interventions work.
      • Namazi K.H.
      • DiNatale Johnson B.
      Physical environmental cues to reduce the problem of incontinence in Alzheimer's disease units.
      • Namazi K.H.
      • DiNatale Johnson B.
      Environmental effects on incontinence problems in Alzheimer's disease patients.
      • Gage H.
      • Goodman C.
      • Davies S.L.
      • et al.
      Laxative use in care homes.
      • Burgio L.D.
      • Engel B.T.
      • Hawkins A.
      • et al.
      A staff management system for maintaining improvements in continence with elderly nursing home residents.
      • Engel B.T.
      • Burgio L.D.
      • McCormick K.A.
      • et al.
      Behavioral treatment of incontinence in the long-term care setting.
      • Grainger M.
      • Castledine G.
      • Wood N.
      • Dilley C.
      Researching the management of constipation in long-term care. Part 2.
      • Temkin-Greener H.
      • Cai S.
      • Zheng N.T.
      • et al.
      Nursing home work environment and the risk of pressure ulcers and incontinence.
      • Palese A.
      • Granzotto D.
      • Broll M.G.
      • Carlesso N.
      From health organization-centred standardization work process to a personhood-centred care process in an Italian nursing home: Effectiveness on bowel elimination model.
      • Ostaszkiewicz J.
      • O'Connell B.
      • Dunning T.
      Sociological responses to personal and continence care in residential aged care facilities.
      • Ostaszkiewicz J.
      • O'Connell B.
      • Dunning T.
      Ethical challenges associated with providing continence care in residential aged care facilities: Findings from a grounded theory study.
      • Clark J.
      Providing intimate continence care for people with learning disabilities.
      • Ostaszkiewicz J.
      • O'Connell B.
      • Dunning T.
      Fear and overprotection in Australian residential aged care facilities: The inadvertent impact of regulation on quality continence care.
      • Taunton R.L.
      • Swagerty D.L.
      • Lasseter J.A.
      • Lee R.H.
      Continent or incontinent? That is the question.
      • Heckenberg G.
      Improving and ensuring best practice continence management in residential aged care.
      • Hu T.W.
      • Igou J.F.
      • Kaltreider L.
      • et al.
      A clinical trial of behavioral therapy to improve urinary incontinence in nursing homes.
      • Mandl M.
      • Halfens R.J.
      • Lohrmann C.
      Incontinence care in nursing homes: A cross-sectional study.
      • Gillespie D.
      • Hood K.
      • Bayer A.
      • et al.
      Antibiotic prescribing and associated diarrhoea: A prospective cohort study of care home residents.
      • Akpan A.
      • Gosney M.A.
      • Barret J.
      Factors contributing to fecal incontinence in older people and outcome of routine management in home, hospital and nursing home settings.
      • Potter J.
      • Peel P.
      • Mian S.
      • et al.
      National audit of continence care for older people: Management of faecal incontinence.
      • Goodman C.
      Can district nurses and care home staff improve bowel care for older people using a clinical benchmarking tool?.
      • Stein-Padbury J.
      • Chenoweth L.
      • Jeon Y.-H.
      • et al.
      Implementing person-centered care in residential dementia care.
      • Ericson-Lidman E.
      • Larsson L.L.
      • Norberg A.
      Caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD.
      • Boersma P.
      • van Weert J.C.
      • Lakerveld J.
      • Droes R.-M.
      The art of successful implementation of psychosocial interventions in residential dementia care: A systematic review of the literature based on the RE-AIM framework: Corrigendum.
      • Chenoweth L.
      Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: A cluster-randomised trial.
      • Hoeffer B.
      • Talerico K.A.
      • Rasin J.
      • et al.
      Assisting cognitively impaired nursing home residents with bathing: Effects of two bathing interventions on caregiving.
      • Levenson S.A.
      • Morley J.E.
      Evidence rocks in long-term care, but does it roll?.
      • Kinley J.
      The effect of using high facilitation when implementing the Gold Standards Framework in Care Homes programme: A cluster randomised controlled trial.
      • Robinson S.B.
      • Rosher R.B.
      Can a beverage cart help improve hydration?.
      • Killett A.
      • Burns D.
      • Kelly F.
      • et al.
      Digging deep: How organisational culture affects care home residents' experiences.
      • Cambridge P.
      Developing policies, procedures and guidelines for intimate and personal care in services for people with learning disabilities.
      • Cambridge P.
      • Carnaby S.
      Multi-disciplinary working and care coordination.
      • Wai A.A.
      • Fook V.F.
      • Jayachandran M.
      • et al.
      Smart wireless continence management system for persons with dementia.
      • Barnett K.
      • McCowan C.
      • Evans J.
      • et al.
      Prevalence and outcomes of use of potentially inappropriate medicines in older people: Cohort study stratified by residence in nursing home or in the community.
      • Rovner B.W.
      • Steele C.D.
      • Schmuely Y.
      • Folstein M.F.
      A randomized trial of dementia care in nursing homes.
      Burgio and Engel and colleagues
      • Burgio L.D.
      • Engel B.T.
      • Hawkins A.
      • et al.
      A staff management system for maintaining improvements in continence with elderly nursing home residents.
      • Engel B.T.
      • Burgio L.D.
      • McCormick K.A.
      • et al.
      Behavioral treatment of incontinence in the long-term care setting.
      investigating behavioral treatments for UI and FI (in the 1990s) 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….”
      • Engel B.T.
      • Burgio L.D.
      • McCormick K.A.
      • et al.
      Behavioral treatment of incontinence in the long-term care setting.
      This indicates this theory is not new but has not been previously explored with particular reference to residents who are living with dementia or how continence-related care is framed in the day-to-day work of care home staff. For staff to believe that change is possible, enough time, encouragement, and support are required.
      How the “fit” with working practices was expressed ranged from whether the intervention was embedded in team working, related to normal working practices of staff, and if staffs’ continence work was embedded in their daily work. Rovner and colleagues
      • Rovner B.W.
      • Steele C.D.
      • Schmuely Y.
      • Folstein M.F.
      A randomized trial of dementia care in nursing homes.
      identified physicians completing documentation, and being involved in ongoing discussion with staff, as the potential reason their intervention was sustained (for 9 months after the end of the study period). The intervention was a work priority for all staff and ongoing involvement of the clinician endorsed the activity.
      Saga and colleagues
      • Saga S.
      • Seim A.
      • Morkved S.
      • et al.
      Bowel problem management among nursing home residents: A mixed methods study.
      noted that a 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 patients who needed help transferring from a bed to a chair.
      An Australian study on continence care in care homes depicted continence care as “caring against the odds” and was characterized by 4 major subcategories: (1) working in a highly regulated work environment; (2) encountering ethically challenging situations; (3) highly dependent residents; and (4) a devalued role.
      • Ostaszkiewicz J.
      • O'Connell B.
      • Dunning T.
      Ethical challenges associated with providing continence care in residential aged care facilities: Findings from a grounded theory study.
      p5 This analysis goes beyond earlier statements about needing time and demonstrates that an important context is whether the intervention explicitly addresses care home–specific patterns of working.

      Discussion

      Dementia is a risk factor for FI, and in care home residents is almost always present in conjunction with UI. The testing of different program theories of what needs to be in place to reduce or manage FI established that solely focusing on resolving constipation can exacerbate FI. It also demonstrated the importance of making the link between continence care and intimate care of PLWD. Continence care is delivered by the lowest-paid frontline care staff in care homes. Understanding how their contribution affects uptake of practices that are likely to be beneficial (for example, assessment, working with clinicians, regular toileting) is key. The review highlighted 2 areas of dissonance in how research on FI has been undertaken. First, a limited engagement in the research with how living with dementia affects a person's ability to benefit from continence-led interventions and second, a mismatch between what researchers consider achievable, and the real world of direct care delivery.
      How the dementia trajectory affects a person's ability to benefit from different interventions for FI is unknown. Few studies have compared different designs of absorbent products for FI or the particular needs of people with dementia in care homes. Clinical, educational, and PCC approaches may be uncontentious. Constipation should never be ignored, but may not be as important an etiology as the use of laxatives in long-term care settings. Activities such as clinical assessment and a focus on PCC need to support the development of a “common understanding” among clinicians, staff, families, and residents. Use of the evidence of what reduces and manages FI needs to both fit with working practices of the care home, and recognize the dementia care skills that the least-qualified staff might need.

      Strengths and Weaknesses

      A strength of this synthesis is that it provides a comprehensive account of what influences, supports, and inhibits practices that can promote better reduction and management of FI of PLWD in care homes. It developed and tested a theoretical understanding of what supports the reduction and management of FI in long-term care settings. We tested and debated the relevance and resonance of the emergent findings with stakeholders at each stage of the review. From the outset, the paucity of evidence on what is effective was known, but in realist terms, even when the desired outcomes were not achieved, it was possible to learn from the evidence and develop a theoretical understanding of what needs to be in place. The inclusion of a wider literature (eg, around bathing, and reduction of antipsychotic prescribing) that has similar preoccupations and challenges has demonstrated recurring preoccupations around containment that has similar preoccupations and challenges (in this case of behavior), the significance of care home routines on uptake of interventions, and how living with dementia reframes how everyday clinical problems and activities are assessed and addressed. The findings suggest that FI-related interventions that fail to tailor practices to fit with care home working, or do not provide ongoing support to staff on dementia informed continence care will probably have limited impact.
      In the validation phase, family carers highlighted that the review did not address the amount of time and resource given to cleaning up after episodes of FI, nor concerns about cross-infection arising from, for example, PLWD engaging in smearing or parcelling of feces. It is a limitation that the evidence was insufficient to address the use of continence aids for FI or relative costs of different management approaches (eg, prompted toileting, use of pads). However, it reinforced the finding that the reduction and management of FI cannot be separated from the everyday work of cleaning and clearing up or residents’ actions that arise from living with dementia.

      Conclusions

      This review provides an emergent conceptual model that articulates what are likely to be the minimum requirements for continence interventions targeting people living with FI and dementia in care homes. It has done this by setting out the evidence for the different possible CMO configurations that need to be in place and has argued that interventions are more likely to achieve the outcomes of interest when continence care is reframed as integral to intimate and personal care work for older people with dementia. Personal and intimate care requires a set of skills that can ensure care is responsive to the individual resident's preferences and needs. These skills need to be formalized in job descriptions, taught to those who give this care (junior/inexperienced staff), and valued and supported by senior staff. Care home staff across different disciplines and grades need to have the opportunity to reflect on practice and learn from each other about how to promote continence. Where reflective practice is already part of care home practice, continence, FI, intimate and personal care, and dementia care can and should be explicitly linked.
      There is good evidence that appropriate diet, fluid intake, and increased mobility help as part of improving FI. The ways in which these strategies are introduced or improved for those residents with dementia should incorporate both the preferences of the person with dementia and consideration of how the activities and routines of the care home support this.
      Further research is needed that considers how different care routines and practices can be aligned with interventions to enhance continence care for this population.

      Acknowledgments

      The team thanks all the practitioners and family members of people living with dementia who contributed to this study. We thank Geraint Collingridge at the British Geriatrics Society Continence Special Interest Group, Robert Dixon of the Bladder and Bowel Foundation, Helene Stewart of the Healthcare Management Trust, Kevin Hall from the Order of St John Care Trust, Quantum Care for supporting access to relevant stakeholders, Karen Cummings from the Order of St John Care Trust for her input and care home expertise, and Lindsey Parker for her administrative support throughout the project.
      Ethics approval was provided by University of Hertfordshire protocol reference HSK/SF/UH00088.

      Appendix

      Appendix 1Resident, Staff, and Organization Outcomes Categorized by Research/Stakeholder Perspective
      Resident OutcomesStaff OutcomesOrganisation Outcomes
      Outcomes proposed by stakeholders
      Continence (dependent)

      Recognition/use of toilet

      Minimisation of leakage

      Skin integrity

      Comfort

      Minimisation of distress

      Dignity
      Increased knowledge

      (about continence/dementia)

      Confidence

      Work satisfaction

      Change in attitudes to ageing and dementia
      Costs

      Resource use e.g. continence products and laxatives

      Use of health services



      Reputation

      Workforce turnover
      Outcomes from the continence literature
      Frequency

      Stool weight and presentation

      Odour

      Skin integrity and hygiene

      Behavioural change/symptoms of distress

      Acceptability of intervention to residents

      Improved continence
      Staff adherence to protocol

      Staff knowledge

      Observed change in practice

      Acceptability of intervention to staff
      Resources used : staff time and equipment used
      Outcomes from the PCC literature
      Expressed and observed distress in residents

      QoL and Quality of Care measures

      Improvement in neuropsychiatric symptoms
      Behaviour change of staff

      Sense of personal accomplishment

      Evidence of staff leading decision making & increasing confidence

      Staff knowledge

      Culture change
      Outcomes from the Care Home Implementation literature
      Acceptability

      Residents’ independence /dignity/choice
      Staff engagement/attrition from intervention

      Change in practice reported/observed

      Evidence of change in documentation/Recording

      Acceptability

      Improved staff knowledge

      Staff confidence

      Breadth of staff discussion, engagement & encouragement of leadership team
      Costs

      References

        • Chassagne P.
        • Landrin I.
        • Neveu C.
        • et al.
        Fecal incontinence in the institutionalized elderly: Incidence, risk factors, and prognosis.
        Am J Med. 1999; 106: 185-190
        • Borrie M.J.
        • Davidson H.A.
        Incontinence in institutions: Costs and contributing factors.
        Can Med Assoc J. 1992; 147: 323-328
        • Nelson R.
        • Furner S.E.
        • Jesudason V.
        Fecal incontinence in Wisconsin nursing homes: Prevalence and associations.
        Dis Colon Rectum. 1998; 41: 1226-1229
      1. Royal College of Physicians of London. Promoting continence: Clinical audit scheme for the management of urinary and faecal incontinence. Prepared by the Research Unit of the Royal College of Physicians. London, UK: RCP; 1998.

        • Harrington C.
        • Carrillo H.
        • Dowdell M.
        • et al.
        Nursing facilities, staffing, residents and facility deficiencies, 2005 through 2010.
        University of California, San Francisco, CA2011
        • Rodriguez N.A.
        • Sackley C.M.
        • Badger F.J.
        Exploring the facets of continence care: A continence survey of care homes for older people in Birmingham.
        J Clin Nurs. 2007; 16: 954-962
        • Brocklehurst J.C.
        • Dickinson E.
        • Windsor J.
        Laxatives and faecal incontinence in long-term care.
        Nurs Stand. 1999; 13: 32-36
        • Saga S.
        • Vinsnes A.G.
        • Morkved S.
        • et al.
        What characteristics predispose to continence in nursing home residents? A population-based cross-sectional study.
        Neurourol Urodyn. 2015; 34: 362-367
        • Nakanishi N.
        • Tatara K.
        • Naramura H.
        • et al.
        Urinary and fecal incontinence in a community-residing older population in Japan.
        J Am Geriatr Soc. 1997; 45: 215-219
        • Johanson J.F.
        • Irizarry F.
        • Doughty A.
        Risk factors for fecal incontinence in a nursing home population.
        J Clin Gastroenterol. 1997; 24: 156-160
        • Norton C.
        • Whitehead W.E.
        • Bliss D.Z.
        • et al.
        Management of fecal incontinence in adults.
        Neurourol Urodyn. 2010; 29: 199-206
      2. Billings JR. Privacy and Dignity in Continence Care: Reflective Guidelines for Health and Social Care Settings. Canterbury, UK: British Geriatrics Society, Royal College of Physicians, University of Kent; 2009. Available at: https://kar.kent.ac.uk/34864/1/Privacy_and_Dignity_in_Continence_Care_Guidelines_Feb_09.pdf. Accessed June 28, 2017.

        • Harari D.
        Constipation and fecal incontinence in old age.
        in: Fillit H.M. Rockwood K. Woodhouse K. Brocklehurst's Textbook of Geriatric Medicine. 7th ed. Saunders Elsevier, Philadephia, PA2014: 909-925
        • Bowman C.
        • Whistler J.
        • Ellerby M.
        A national census of care home residents.
        Age Ageing. 2004; 33: 561-566
        • Flanagan L.
        • Roe B.
        • Jack B.
        • et al.
        Systematic review of care intervention studies for the management of incontinence and promotion of continence in older people in care homes with urinary incontinence as the primary focus (1966–2010).
        Geriatr Gerontol Int. 2012; 12: 600-611
        • Flanagan L.
        • Roe B.
        • Jack B.
        • et al.
        Factors with the management of incontinence and promotion of continence in older people in care homes.
        J Adv Nurs. 2013; 70: 476-496
      3. Goodman CN, Buswell M, Russell B, et al. Managing faecal incontinence in people with advanced dementia resident in care homes, a realist synthesis of the evidence (FINCH study). Health Technol Assess. In Press 2017.

        • Pawson R.
        Evidence-based policy: A realist perspective.
        Sage Publications, London, UK2006
        • Pawson R.
        • Greenhalgh J.
        • Brennan C.
        • Glidewell E.
        Do reviews of healthcare interventions teach us how to improve healthcare systems?.
        Soc Sci Med. 2014; 114: 129-137
        • Wong G.
        • Greenhalgh T.
        • Westhorp G.
        • et al.
        RAMESES publication standards: Realist syntheses.
        J Adv Nurs. 2013; 69: 1005-1022
        • Goodman C.
        • Malone J.R.
        • Norton C.
        • et al.
        Reducing and managing faecal incontinence in people with advanced dementia who are resident in care homes: Protocol for a realist synthesis.
        BMJ Open. 2015; 5: e007728
        • Higgins J.
        • Green S.
        Assessing Risk of Bias in Included Studies. Cochrane Handbook for Systematic Reviews of Interventions. Version 5.0. 0.
        The Cochrane Collaboration, Oxford, UK2008
        • Ouslander J.G.
        • Simmons S.
        • Schnelle J.
        • et al.
        Effects of prompted voiding on fecal continence among nursing home residents.
        J Am Geriatr Soc. 1996; 44: 424-428
        • Leung A.W.
        • Karyotakis N.C.
        • Rahman H.U.
        • et al.
        Fecal incontinence in a nursing home and an ambulatory population.
        Gastroenterology. 1998; 114: A788
        • Leung F.W.
        • Schnelle J.F.
        Urinary and fecal incontinence in nursing home residents.
        Gastroenterol Clin North Am. 2008; 37 (x): 697-707
        • Levy-Storms L.
        • Schnelle J.F.
        • Simmons S.F.
        What do family members notice following an intervention to improve mobility and incontinence care for nursing home residents? An analysis of open-ended comments.
        Gerontologist. 2007; 47: 14-20
        • Ouslander J.G.
        • AI-Samarrai N.
        • Schnelle J.F.
        Prompted voiding for nighttime incontinence in nursing homes: Is it effective?.
        J Am Geriatr Soc. 2001; 49: 706-709
        • Ouslander J.G.
        • Griffiths P.C.
        • McConnell E.
        • et al.
        Functional incidental training: A randomized, controlled, crossover trial in Veterans Affairs nursing homes.
        J Am Geriatr Soc. 2005; 53: 1091-1100
        • Rahman A.N.
        • Schnelle J.F.
        • Applebaum R.
        • et al.
        Distance coursework and coaching to improve nursing home incontinence care: Lessons learned.
        J Am Geriatr Soc. 2012; 60: 1157-1164
        • Rahman A.N.
        • Schnelle J.F.
        • Osterweil D.
        Implementing toileting trials in nursing homes: Evaluation of a dissemination strategy.
        Geriatr Nurs. 2014; 35: 283-289
        • Schnelle J.F.
        • Alessi C.A.
        • Simmons S.F.
        • et al.
        Translating clinical research into practice: A randomized controlled trial of exercise and incontinence care with nursing home residents.
        J Am Geriatr Soc. 2002; 9: 1476-1483
        • Schnelle J.F.
        • Leung F.W.
        Urinary and fecal incontinence in nursing homes.
        Gastroenterology. 2004; 126: S41-S47
        • Schnelle J.F.
        • Leung F.W.
        • Rao S.S.
        • et al.
        A controlled trial of an intervention to improve urinary and fecal incontinence and constipation.
        J Am Geriatr Soc. 2010; 58: 1504-1511
        • Schnelle J.F.
        • MacRae P.G.
        • Ouslander J.
        • et al.
        Functional incidental training, mobility performance and incontinence care with nursing home residents.
        J Am Geriatr Soc. 1995; 43: 1356-1362
        • Schnelle J.F.
        • Newman D.
        • White M.
        • et al.
        Maintaining continence in nursing home residents through the application of industrial quality control.
        Gerontologist. 1993; 33: 114-121
        • Schnelle J.F.
        • Simmons S.F.
        • Beuscher L.
        • et al.
        Prevalence of constipation symptoms in fecally incontinent nursing home residents.
        J Am Geriatr Soc. 2009; 57: 647-652
        • Schnelle J.F.
        • Traughber B.
        • Sowell V.A.
        • et al.
        Prompted voiding treatment of urinary incontinence in nursing home patients: A behavior management approach for nursing home staff.
        J Am Geriatr Soc. 1989; 37: 1051-1057
        • Abbott R.A.
        • Whear R.
        • Thompson-Coon J.
        • et al.
        Effectiveness of mealtime interventions on nutritional outcomes for the elderly living in residential care: A systematic review and meta-analysis.
        Ageing Res Rev. 2013; 12: 967-981
        • Goodman C.
        • Davies S.L.
        • Dickinson A.
        • et al.
        A study to develop integrated working between primary health care services and care homes.
        NIHR Service Delivery and Organisation Programme, Southampton, UK2013
        • Ballard C.
        • O'Brien J.
        • James I.
        • et al.
        Quality of life for people with dementia living in residential and nursing home care: The impact of performance on activities of daily living, behavioral and psychological symptoms, language skills and psychotropic drugs.
        Int Psychogeriatr. 2001; 13: 93-106
        • Fossey J.
        • Ballard C.
        • Juszczak E.
        • et al.
        Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia: Cluster randomised trial.
        BMJ. 2006; 332: 756-761
        • Fossey J.
        • Masson S.
        • Stafford J.
        • et al.
        The disconnect between evidence and practice: A systematic review of person-centred interventions and training manuals for care home staff working with people with dementia.
        Int J Geriatr Psychiatry. 2014; 29: 797-807
        • Lawrence V.
        • Fossey J.
        • Ballard C.
        • et al.
        Helping staff to implement psychosocial interventions in care homes: Augmenting existing practices and meeting needs for support.
        Int J Geriatr Psychiatry. 2016; 31: 284-293
        • Lawrence V.
        • Fossey J.
        • Ballard C.
        • et al.
        Improving quality of life for people with dementia in care homes: Making psychosocial interventions work.
        Br J Psychiatry. 2012; 201: 344-351
        • Whitaker R.
        • Ballard C.
        • Stafford J.
        • et al.
        Feasibility study of an optimised person-centred intervention to improve mental health and reduce antipsychotics amongst people with dementia in care homes: Study protocol for a randomised controlled trial.
        Trials. 2013; 14: 13
        • Whitaker R.
        • Fossey J.
        • Ballard C.
        • et al.
        Improving Well-being and Health for People with Dementia (WHELD): Study protocol for a randomised controlled trial.
        Trials. 2014; 15: 284
        • Bravo C.V.
        Urinary and faecal incontinence and dementia.
        Rev Clin Gerontol. 2004; 14: 129-136
        • Wald A.
        Faecal incontinence in the elderly: Epidemiology and management.
        Drugs Aging. 2005; 22: 131-139
        • Rockville M.D.
        • Fonda D.
        • DuBeau C.E.
        • et al.
        Incontinence in the frail elderly.
        in: Abrams P. Cardozo L. Khoury S. Wein A. Incontinence [Internet]. 3rd. Health Publication Ltd, Monaco2005 (Available at: https://www.ics.org/Publications/ICI_3/v2.pdf/chap18.pdf. Accessed June 28, 2017)
        • Akhtar A.J.
        • Padda M.
        Fecal incontinence in older patients.
        J Am Med Dir Assoc. 2005; 6: 54-60
        • Norton C.
        • Thomas L.
        • Hill J.
        Management of faecal incontinence in adults: Summary of NICE guidance.
        BMJ. 2007; 334: 1370-1371
        • (NICE) NIFHACE
        Dementia quality standard.
        NICE, Manchester, UK2010: 1-40
        • Bellicini N.
        • Molloy P.J.
        • Caushaj P.
        • Kozlowski P.
        Fecal incontinence: A review.
        Dig Dis Sci. 2008; 53: 41-46
        • Shah B.J.
        • Chokhavatia S.
        • Rose S.
        Fecal incontinence in the elderly: FAQ.
        Am J Gastroenterol. 2012; 107: 1635-1646
        • Harari D.
        • Husk J.
        • Lowe D.
        • Wagg A.
        National audit of continence care: Adherence to National Institute for Health and Clinical Excellence (NICE) Guidance in older versus younger adults with faecal incontinence.
        Age Ageing. 2014; 43: 785-793
        • Coggrave M.
        • Norton C.
        • Cody J.D.
        Management of faecal incontinence and constipation in adults with central neurological diseases.
        Cochrane Database Syst Rev. 2014; : CD002115
        • National Institute for Health and Care Excellence (NICE)
        Faecal-incontinence overview.
        National Institution for Health and Clinical Excellence, Manchester, UK2014