Understanding how to facilitate continence for people with dementia in acute hospital settings: a mixed methods systematic review and thematic synthesis

PLWD or cognitive impairment and/or carers’, family members’, and HCPs of PLWD or cognitive impairment. All dementia subtypes were included for example AD, vascular dementia, and frontotemporal dementia.

Any communication strategy or individualised care plan/s that carers, family members, and HCPs have employed to manage toileting and continence for PLWD.

Perceptions and experiences of communication and/or individualised care planning for PLWD with regard to toileting and continence.

All comparisons were considered.

All outcomes as presented across the primary studies that related to communication and individualised care planning.

Quantitative (e.g. randomised controlled trials (RCTs), quasi-experimental, cohort studies, descriptive studies), qualitative studies (e.g. focus groups or individual interviews), and non-research material (e.g. policies (UK only), guidelines, reports of practice initiatives, and clinical case studies).

A PLWD and all those involved in their care in acute, long-term, and community healthcare and home settings.

The importance of protecting personal and social dignity [63‐65] during continence care was significant and HCPs reported a belief that PLWD and their caregivers prefer not to talk about incontinence because it is a highly embarrassing [64, 65] and distressing issue [87]. Health care professionals believed that the provision of quality continence care for PLWD includes measures and approaches that conceal incontinence by creating situations that allowed PLWD to go to the toilet in private and avoiding communication, which revealed their issues around incontinence or care dependence that could cause them to feel embarrassed, ashamed, or humiliated [65].

The importance of respecting PLWDs right to privacy was also considered important [63, 65, 87]. In order to relieve PLWD perceived embarrassment of accepting assistance [63, 65], HCPs stressed the importance of building rapport and trust, using humour [87], and “acting natural” ([63], p. 24) when supporting continence needs. Health care professionals also felt that in order to communicate with PLWD in ways that would minimise any emotional impact that HCPs should have the appropriate knowledge and skills [65]. Other strategies to enhance privacy included whispering to the client about toileting issues [65] and keeping these issues secret [63]. However, HCPs acknowledged that PLWD may have difficulties in recognising and communicating their continence needs and that not being verbally able to request toileting assistance was viewed as a barrier to protecting dignity [65]. Closely overlapping with this theme of communication is the issue of HCPs attitudes towards continence care.

The language used within a care environment is important regarding continence care [83, 86] and was identified as not always respectful [83] but where staff had good knowledge of the people they cared for, then these approaches were respectful and built good relationships with PLWD [83]. Ostaszkiewicz et al. [86] on discussing coercive continence care practices, described them as including the use of verbal or physical force to wash a person, to accept wearing continence pads or other forms of incontinence containment and to accept continence checks ([86] p. 2). The authors also suggest that chastising a person for being incontinent could be said to be a form of verbal abuse. Although some ward staff promote continence, this does not appear to happen consistently within acute settings [66]. Relatives expressed concern that PLWD would be happy to go to the toilet if assistance was provided, but that staff encouraged them to “do it in the nappy” ([66] p. 8).^. Other times, it was found that in some cases, routine toileting was avoided, and cues ignored when staff members were busy, or appeared uncomfortable with or disinterested in providing support [63, 66]. Ostaszkiewicz [86] emphasises that “Communicating therapeutically about incontinence with any person, including people with dementia, involves the demonstration of warmth, compassion and humanity” ([86], p. 523). This is a skill that requires both clinical knowledge and interpersonal and communication skills, which should all be included within education programs [87]. Both formal caregivers and family carers would benefit from such programs, which would also enable the development of “empathetic understanding” ([86] p. 8) to the emotions that a PLWD has in response to incontinence and its care [86].

People living with dementia are not always able to recognise and communicate that they need to go to the toilet or indicate that they need assistance [10, 61, 63‐65, 67, 70, 71, 75, 76, 80, 81, 83]. It is therefore important to recognise the non-verbal signals, body language, facial expressions, behaviours, and any signs that the PLWD uses to communicate in such instances [63, 80, 81, 83] so that their wishes can be acknowledged [83]. Listening carefully to the words or phrases that PLWD use for describing the toilet [67, 79, 81‐83] as well as being able to recognise familiar gestures [67, 82, 83] is seen as important. New staff should be trained to recognise the importance of toileting and to how to understand individual behaviours and non-verbal cues in relation to toileting [63].

A range of different non-verbal cues had been observed or reported and included the following: someone pulling/taking off their clothing when they need to go to the toilet [10, 68, 80]; making particular sounds such as moaning or grunting [63, 68, 80]; assuming a different posture [10]; someone looking around [63]; fidgeting [10, 63, 79, 88]; getting up and walking around or pacing [63, 78, 79, 88] or restlessness [10, 68]; holding their crotch or their stomach [10, 63, 79]; different facial expressions such as worry [10] or sorrow [68]; going to the corner of the room [79] and pulling at their clothes [10, 88].

Hutchinson et al. also reported a number of affective cues which included anger, profanity, and “appearing frustrated and irritable” ([63] p. 21). Another study investigated common behaviours when PLWD experience either bowel movement or urination needs and found that anxiety, restlessness, and taking off/putting on clothes “inappropriately” occurred in more than 30% of patients [68].

Wilkinson et al. sought to evaluate the comparative suitability of a range of words or symbols to label a toilet for PLWD. As part of an institutional survey (n = 24), the words that were used to label the toilet were “toilet” (67%), “male/female” (11%) and in some institutions, there was no labelling (22%) ([67] p. 163). Only four institutions used symbols, and these included the international symbol (n = 1), toilet symbol (n = 1), yellow wrapping over door (n = 1), and ceramic plaque upon which was written the word “toilet” ([67] p. 164). A further survey was conducted with PLWD and reported within the same publication and it was reported that the preferred word and symbol for toilet varied significantly (p < 0.05) according to their stage of dementia (which had been assessed using the Folstein Mental State Examination and classified as normal, mild, moderate, and advanced). “Ladies” and “gents” was preferred by those assessed with no cognitive impairment and “toilet” by those assessed with moderate dementia ([67] p. 164). The international symbol (male and female symbols) was preferred by people assessed with no cognitive impairment or mild dementia whilst the toilet symbol was preferred by those identified with more advanced dementia [67].

A number of general communication strategies for improving communication between HCPs and PLWD have been suggested. In order to reduce anxiety/fear/embarrassment, it is identified as being important to check HCPs awareness of good communication techniques when working with PLWD [69] and that HCPs introduce themselves and seek the PLWD’s approval before performing tasks [65]. Other suggestions include prompting [10, 80, 82, 83]; getting to know the PLWD [80], how they communicate [81] and determining their routines, habits, and lifestyle [79, 81]; getting HCPs to ask the PLWD how they can be help them manage their continence [79]; and communicating with the family to determine usual behaviour patterns [63] and not making assumptions and see the person as an individual [81]. One study described how nursing staff communicated with residents’ families about methods to manage incontinence when taking the PLWD “on an outing” ([65] p. 2432). The advice included information about how to check and change continence pads, how to assist the resident to the toilet, and how long continence pads could potentially last without needing to be changed [65]. In another study, caregivers reported that they sought additional information about incontinence from the internet but were concerned about the accuracy of the information retrieved, whether they could understand it and had concerns about their searching skills [62]. They wanted support and reassurance from HCPs that they were providing the care that was required and they wanted information before any problems such as incontinence occurred so that they could feel prepared [61].

Two pilot studies [70, 71] conducted by the same authors explored the effectiveness of verbal instructions, presented automatically through simple technology, in helping people with mild-to-moderate AD regain basic daily activities. The technology consisted of a modified Walkman with recordings of verbal instructions that directed the PLWD to undertake bathroom-related activities in a certain order. Sensors detected when a PLWD entered the bathroom prompting the first instruction telling them to sit on the toilet. After a long pre-determined interval, this instruction was then followed by another instruction for them to wash their hands with the soap. The Walkman was activated by a battery-powered, radio-frequency photocell, light-reflecting paper, and a microprocessor-based electronic control unit. Data from both studies showed that the use of verbal instructions and basic technology to control their presentation has the potential to be effective in helping people with mild or moderate AD recapture relevant daily activities, including toileting [70, 71].

There is a lack of consensus as to whether PLWD should be present with their caregivers during outpatient consultations [61, 62, 64]. Health care providers believed that care recipients should be present when discussing continence problems during consultations [64]; however, caregivers expressed mixed opinions [61, 62]. Caregivers, who favour this approach, view the HCP as an authority in this subject, with the result that they believe the PLWD would be more likely to cooperate with management strategies because they had been involved in the discussion [61]. Whereas those who opposed this reported that they did not want to upset or make their care recipient anxious by discussing a problem that the PLWD might not fully understand or be able to control [61]. Those caregivers, who were daughters, felt the need to be sensitive to their parent’s privacy and feelings, preferring to discuss incontinence in greater depth with their HCPs; this finding did not reflect spouses’ views. However, time constraints or inability to meet alone with the HCPs prevented in-depth discussions from taking place [62]. Some caregivers suggested that HCPs could explain the problem and management options in simple terms when the care recipient was present in the outpatients’ appointments and then speak separately to the caregiver, providing more details [61].

There was a lack of consensus with regard to whom caregivers thought should be responsible for initiating conversations about incontinence during dementia related consultations within outpatient settings [61, 62, 64]. Caregivers believed that it was the responsibility of HCPs to initiate conversations about incontinence during both initial consultations and follow-up appointments [61]. However, there were differences depending on whether the care recipient was a parent or a spouse. Caregivers who were daughters or daughters in law would only discuss incontinence with HCPs when it became problematic to manage at home, whereas husbands tended to communicate their wives’ problems much sooner [62]. In contrast, HCPs thought that conversations about incontinence should be initiated by the caregiver [61]. However, when HCPs did initiate conversations about incontinence, they reported that this was appreciated by the caregiver who was receptive and engaging in discussion around the topic [64]. However, within secondary care, not all HCPs saw addressing incontinence as a priority and thought that the topic should be dealt with by the patient’s primary care providers rather than during a specialist secondary care referral [64]. Extended family and friends who were caregivers reported that HCPs do not always ask about incontinence during consultations [62]. A lack of awareness of available resources or concerns about frightening patients/caregivers about potential problems before they occurred was suggested as possible explanations as to why HCPs do not routinely discuss incontinence and fail to initiate conversations about incontinence [64]. Time was found to be the most common barrier reported by HCPs to discussing incontinence, because they believed that a lot of information needed to be covered during the appointments and discussing incontinence issues can take more time than was typically allocated [64]. Possible solutions suggested by HCPs were for the patient/caregiver to have a follow-up appointment to discuss incontinence or to offer referrals to a specialist nurse in continence care [64].

Targeted and individualised/person-centred continence care [10, 33, 65, 77, 81, 84] that is established after a thorough clinical assessment has taken place [10, 33, 86, 88] is identified as being important. This would include the use of a bladder diary [10]. Individualised continence care is described as care about what is best for the PLWD [10, 80], avoiding harm [10] and about promoting autonomy and independent living [10].

The importance of HCPs and caregivers working together to deliver individualised/person-centred continence care was a feature of three intervention studies [72, 75, 76] and was encouraged within four pieces of non-research material [77, 81, 84, 85]. Within one intervention study, nurse practitioners worked with the carer to plan the schedule for the PLWD, and this was followed up with monthly phone calls and bi-monthly visits [72]. Occupational therapists worked with the caregivers in a further two intervention studies [75, 76] to deliver solutions to toileting and incontinence problems, which consisted of five visits over 2 [76] or 3 months [75]. Other HCPs that work with PLWD and their caregivers include continence advisors [77] or other HCPs specialising in continence care [81]. Working in partnership with caregivers and PLWD is important [77, 81, 85] and enables HCPs to gather their personal story [84] to work out the best solutions and to ensure that specialist help can be accessed when needed and so that what is recommended is achievable [77].

The importance of developing a regular toileting schedule was discussed briefly within one study [75] and one piece of non-research material [10] and was the focus of one intervention study [72]. The intervention group in the study by Jirovec and Templin [72] were taught an individualised scheduled toileting procedure, which compensated for cognitive impairment by providing these patients with toileting reminders such as verbal prompts. Initially, assignment was to one of two intervention groups: one group of participants was visited every 2 months, and the other group after a 6-month interval. There was also a control group. At the 6-month follow-up, the two intervention groups did not differ with respect to UI, and these two intervention groups were combined to form a single intervention group, plus a control group. The authors conducted a completer’s only analysis and reported that incontinence decreased in the experimental group (28 of the 44 participants still in the study at 6 months) with almost no change in the control group. Further analysis of this data using the non-parametric sign test was conducted, demonstrating a significant decrease of incontinence within the experimental group (Z = −1.83, p < 0.05). The participants were coded according to any decrease in percentage of incontinent episodes versus staying the same or not showing improvement in incontinence. However, two previous reviews conducted a re-analysis of the data which found that although the results favoured the experimental groups, they were not statistically significant [41, 89].

People living with dementia and their carers find talking about incontinence distressing and embarrassing (CERQual: moderate [63‐65]). Therefore, communicating in a dignified way is important and one way that HCPs feel they can do this is by building trust and rapport through using humour, having appropriate knowledge and skills, and by speaking quietly and keeping incontinence issues secret (CERQual: moderate [63‐65]). People living with dementia often report poor attitudes of HCPs towards continence and continence care in that HCPs often ignore toileting requests or avoid routine toileting citing being busy or being uncomfortable with or disinterested in toileting (CERQual: moderate [68] and that staff in acute settings do not consistently promote continence (CERQual: very low [66]). What PLWD report to be helpful is HCPs having respect, building relationships and using appropriate language (CERQual: very low [63]). Interpersonal and communication skills are important and should be a focus of education programs (non-research: ungraded [86, 87]). Being able to recognise verbal cues is important because PLWD are not always able to recognise and communicate that they need to go to the toilet or indicate that they need assistance and they use a variety of non-verbal cues (CERQual: high [61‐63, 65, 67, 68, 70, 71, 75, 76]; and non-research: ungraded [10, 79, 81‐83, 85, 87]) as well as HCPs checking PLWD awareness of communication techniques including non-verbal cues through communicating with the family (CERQual: moderate [63, 69]). The ability of HCPs to recognise non-verbal signals, body language, facial expressions, behaviours, and signs that PLWD use to communicate that they need to go toilet is crucial (non-research: ungraded [79‐81]) and should be a focus within education programs for new staff (CERQual: low [63, 68]). Finding out what words or phrases PLWD use for describing the toilet as well as being able to recognise familiar gestures is also seen as important (CERQual: very low [67]); non-research: ungraded [67, 79, 81‐83]. It has been demonstrated that PLWD preferred the word toilet compared to those assessed with no cognitive impairment and those with advanced dementia preferred the international symbol for toilet compared to those assessed with mild dementia or with no cognitive impairment (CERQual: very low [67]). A range of strategies have been identified that include getting to know the PLWD and how they communicate and manage their continence, communicating with the family, prompting, seeing the person has an individual, and checking HCPs communication skills study (CerQUAL: moderate [65, 69]; non-research: ungraded [10, 80‐83]) as well as HCPs introducing themselves and seeking PLWD approval before performing tasks (CERQual: very Low [65]). Verbal instructions, presented automatically through simple technology, has the potential to be effective in helping persons assessed with mild or moderate AD go to the toilet independently by presenting simple step wise sequential instructions (GRADE: very low [70, 71]).

Health care professionals felt that it was important that PLWD were present with their caregivers during outpatient appointments; however, caregivers felt that although this would allow greater cooperation with management strategies, this would also cause unnecessary anxiety (CERQual: very low [61, 62, 64]). There was uncertainty over who should initiate conversations during consultations (CERQual: very low [64]), and HCPs suggested developing a pre-visit checklist to prompt conversation during consultations (CERQual: very low [64]). Caregivers reported that incontinence and management options are often explained in terms they find difficult to understand (CERQual: low [61, 62, 64]), and both caregivers and HCPs suggested a number written information resources that could be provided for the caregivers attending outpatient consultations to ameliorate this problem (CERQual: low [61, 62, 64]).

Targeted and individualised/person-centred continence care that is established after a thorough assessment has taken place is seen as important (non-research: ungraded [10, 33, 77, 81, 84, 86‐88] and is about what is best for the PLWD and avoiding harm and about promoting autonomy and independent living (non-research: ungraded [10]). Individualised care planning should consider the needs of both PLWD and their caregivers and involve multi-components exploring both day and night time incontinence care, these are helpful in addressing incontinence in the home care setting (non-research: ungraded [10, 33, 77, 84‐86]). It has been identified as imperative that HCPs and caregivers work together to deliver individualised/person-centred continence care (non-research: ungraded [77, 81, 84, 85]. An intervention that involved individualised and comprehensive care for residents within a care home focused on providing adequate fluids and meal by encouraging patients to use toilets was effective for 19% of residents in reducing the proportion of continence pads used (GRADE: very low [74]). Another intervention that involved training health workers in person-centred care was effective in improving the quality of care and a reduction in the number of aids needed to manage incontinence (GRADE: very low [73]). A post-intervention survey reported an intervention that involved individual treatment strategies delivered by an occupational therapist and was designed to enhance the caregiver’s ability to problem solve about their environment enabled caregivers to develop effective solutions to situations they considered problematic which included toileting (CERQual: low [75, 76]). The importance of developing a regular toileting schedule was highlighted by caregivers CERQual: very low [75]; Non research: ungraded [37]). However, an individualised scheduled toileting program that compensated for cognitive impairment by providing those with cognitive impairment with toileting reminders was not shown to have any significant benefits in terms of reducing the number of incontinent episodes for PLWD in a home care setting GRADE: very low [72].