Characteristics of the included material
Information on the characteristics of included research studies, including assessments of quality, are given in Tables 2 to 4 and details of the non-research material is available in additional file S4.
Table 2
Characteristics of included qualitative studies
Author/s, Year, Country
Aim
|
Setting
Participants
|
Demographic details for PLWD
|
Methods
MMAT score
|
Study 1: Bliss et al., 2013 [70]
USA
To describe health literacy needs related to incontinence and skin care among family or friend caregivers of individuals with AD and develop supportive and educational materials that address these
|
Setting
Home
Participants
Family/friend adult caregivers (n = 48)
Spouses (44%), daughters (31%), or extended family members/friends (25%)
Recruited from community-based agencies
|
Gender
Female (75%)
Age (Mean ± SD) years
64 ± 14
Mental status
AD or Dementia
|
Methods
Focus groups and Interviews
MMAT score: 100%
|
Study 1: Mullins et al., 2016 [71]
USA
To examine barriers to communicating with healthcare professionals and health literacy about incontinence among different types of informal caregivers of individuals with AD
|
Same as Bliss et al., 2013
|
see Bliss et al., 2013
|
see Bliss et al., 2013
MMAT score: 100%
|
Study 2: Hutchinson et al., 1996 [87]
USA
To addresses the range and variation of toileting problems, management strategies used by family and employed caregivers
|
Setting
AD specific day Centre
Home
Participants
Family members who participated in the centre support groups (n = 16)
Staff members employed at the day care centre (n = 13)
|
Demographic characteristics of patients with AD who attended the day centre were not reported
Mental status
AD
|
Methods
Participant observation at the day care centre, clients’ home and support groups
Interviews with families and staff members
Based on qualitative ethology
MMAT score: 75%
|
Study 3: Rolnick et al., 2013 [72]
USA
To examine healthcare providers’ perspectives regarding improving communication with patients and their caregivers about incontinence and dementia
|
Setting
Secondary care providers
Participants
Physicians (n = 8) / Nurse practitioners (n = 2) / Pharmacist (n = 1)
Potential participants suggested by advisory committee
|
Not applicable
Mental status
Dementia
|
Methods
Interviews
MMAT score: 100%
|
Study 4: Ostaszkiewicz et al., 2018 [73]
Australia
To explore nursing home staff members’ beliefs and expectations about what constitutes “quality continence care” for people living in nursing homes
|
Setting
Nursing Home
Participants
Nursing home staff (n = 19)
Registered nurses (n = 8)
Enrolled nurses (n = 4)
Personal care workers (n = 7)
Recruited using snowballing technique; selective placement of information in print and electronic media; and information sessions at several nursing homes
|
Not applicable
Mental status
Most nursing home residents were cognitively impaired
|
Methods
Interviews
Naturalistic inquiry using a qualitative exploratory descriptive research approach
MMAT score: 100%
|
Study 14: Scerri et al 2018 [74]
Malta
To categorise the perceived and observed needs of persons with dementia admitted in acute medical wards and to explore whether these needs are being or have been met.
|
Setting
Acute medical wards (n = 3)
Participants
PLWD and their family members (n = 12)
|
Gender
Age (Mean) years
84.7
Range 71 to 93
Mental status
Dementia
|
Methods
Interviews
Observations using Dementia Care Mapping
MMAT score: 75%
|
Key: AD: Alzheimer ’s disease; MMAT: Mixed methods appraisal tool; PLWD: people living with dementia; SD: standard deviation |
Table 3
Characteristics of included descriptive studies
Author/s, Year, Country
Aim
|
Setting
Participants
|
Demographic details for PLWD
|
Data collection
Outcome measures
MMAT score
|
Cross sectional surveys
|
Study 7: Wilkinson et al., 1995 [67]
Australia
To evaluate the comparative suitability of a range of words or symbols to label a toilet for people with dementia
|
Setting
Phase 1: Hostel care for ambulant people with dementia (n = 24/28, rr 86%)
Phase 2: Aged care complex with hostel and nursing home facilities (n = 28) and an acute hospital ward (n = 20)
Participants
Phase 1: n = 24 institutions
Phase 2: n = 24 patients
|
Gender
No details provided
Age (years)
80.4 (95%CI 77.1–83.1)
Mental status
Folstein MSE
Normal cognition (n = 21)
Mild dementia (n = 11)
Moderate dementia (n = 16)
Severe dementia excluded
The study comprised two phases and questionnaires were used in both
|
Data collection
Phase 1: questions posed to hostel management on what word and/or symbols were already in use in that institution to label toilet and/or bathroom facilities
Phase 2: questions asking preference for toilet door labelling
Outcome measures
Preferred symbol according to cognitive state
Preferred word according to cognitive state
MMAT score: 100%
|
Study 12: Shih et al., 2015 [68]
Taiwan
To understand and compare the behavioural characteristics of bowel movement and urination needs in patients with dementia
|
Setting
Long term care facilities (n = 8)
Day centre (n = 1)
Participants
Residents (n = 187)
|
Gender: Female (59%)
Age (mean ± SD) years
80.1 ± 9.6 / Range 70 to 90
Mental status
AD 38.5%
Unspecified dementia 32.6%
Vascular dementia 18.7%
Other dementia 10.2%
|
Data collection
Behaviour checklist for bowel and urination developed for the study
Outcomes measures
Symptom’s and signs of bowel movement and urination expressed by the patient
MMAT score: 100%
|
An adapted three-stage Delphi consultation study
|
Study 13: Iliffe et al., 2015 [69]
UK
Phase 4
The aim of this study was to develop and test a continence assessment tool and supporting resources for people with dementia, to be used by primary care professionals, primarily community nurses (pg 95)
|
Setting
Community
Participants
Stage 1
Carers and professionals (n = 10)
Stage 2
Carers and professionals (n = 10)
Specialist continence professionals (n = 10)
Stage 3
Carers (n = 8)
General Practitioner (n = 2),
Geriatrician/psychogeriatrician (n = 1)
Continence nurse specialist (n = 3)
District nurse/community nurse (n = 7)
Occupational Therapist (n = 2)
Other (n = 3)
(rr = 26/50)
|
Not applicable
Mental Status
Dementia
|
Data Collection
Stage 1: Face to face consultations were facilitated to describe a broad range of principles and issues that would underpin an assessment tool designed to address the needs of people with dementia
Stage 2: A prototype dementia-focused continence assessment tool was developed using the data generated in stage 1, asking for agreement or disagreement to items plus suggestions for further items. This was used to consult, in writing, both the expert group in stage 1 and also a further group of carers and specialist continence professionals. The prototype was further adapted.
Stage 3: A different, wider group of experts (carers and professionals) was consulted in writing. They were sent the draft dementia-focused assessment tool together with a questionnaire to test its face and content validity.
Outcome measures
Recipients were asked (1) whether or not the tool would improve recognition of the problems (face validity) and (b) to rate each item for importance and identify missing or unnecessary items (content validity)
MMAT score: 75%
|
Key: AD: Alzheimer ’s disease; CI: confidence intervals; MMAT: Mixed methods appraisal tool; MSE: mental state examination PLWD: people living with dementia; SD: standard deviation |
Table 4
Characteristics of included quantitative experimental studies
Author/s, Year
Country
Aim
|
Setting
Participants
Demographic details for PLWD
|
Intervention
|
Data collection
Outcome measures
MMAT score
|
Case series with non-concurrent multiple baseline design
|
Study 5: Lancioni et al., 2009 [61]
USA
The present three pilot studies assessed the effectiveness of verbal instructions, presented automatically through simple technology, in helping persons with mild-to-moderate AD recapture basic daily activities
|
Setting
Alzheimer rehabilitation centre
Participants
Residents with AD (n = 3)
Gender: Female (100%)
Age (years): 79, 81, 86
Mental status
AD
MMSE scores: 10, 19, 22
|
Intervention
Baseline: Pilot study 1: The participants were to perform the bathroom routine without the help of the technology and related verbal instructions
Intervention: Pilot study 1: The participants performed all bathroom-routine steps with the help of the technology, which presented the instructions Step 1 was “sit on the toilet”. 17 steps in total and step 1 was “to sit on the toilet”
|
Data collection
The participants’ performance of a step was recorded as ‘correct’ if it matched the description of such step (and the instruction available for it during the intervention) and occurred independent of prompting by research assistants
Outcome measures
Percentage of correct steps performed
MMAT score: 100%
|
Study 6: Lancioni et al., 2009 [60]
USA
To assess the effectiveness of verbal instructions (presented automatically through simple technology) in helping persons with mild or moderate AD perform daily living activities
|
Setting
Alzheimer rehabilitation centre
Participants
Residents with AD (n = 4)
Gender: Female (100%)
Age (years): 59, 76, 79, 85
Mental status
AD
MMSE scores: 11, 12, 16, 20
|
Intervention
Same as Lancioni et al 2009a
Four studies with the first one aimed at replicating pilot study 1 from Lancioni et al 2009a. efforts directed at re-establishing the performance of morning bathroom routine
|
Data collection
Same as Lancioni et al 2009a
Outcome measures
Same as Lancioni et al 2009a
MMAT score: 100%
|
Randomised control trials
|
Study 8: Jirovec and Templin 2001 [62]
USA
To evaluate the effectiveness of an individualized scheduled toileting program on incontinent, memory impaired elders being cared for at home
|
Setting: Home
Participants
Caregivers (n = 118)
Memory impaired elders (n = 118)
Randomised to I (n = 77), C (n-41)
Recruited through announcements in newsletters, flyers on bulletin boards, and newspaper advertisements asking for volunteers who were caring for a memory-impaired elder
Gender: Female (69%)
Age (mean ± SD) years
79.89 ± 7.93
Mental status
SPMSQ: Mean 6.69 ± 2.28
|
Intervention
individualized scheduled toileting program
The intervention group was taught an IST procedure that compensated for cognitive impairment by providing memory-impaired patients toileting reminders
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. The original two intervention groups were combined, leaving a single intervention group and a control group.
|
Data collection
Incontinence was calculated as the percentage of time the patient was incontinent by dividing the incontinent episodes by the total number of voiding episodes, both continent and incontinent
Voiding record
Outcome measures
Decrease in percentage of incontinent episodes versus staying the same or not showing improvement in incontinence
Incontinence frequency
Mobility
Consistency in implementing the IST protocol
MMAT score: 75%
|
Prospective cohort study
|
Study 14: Wijk et al., 2018 [64]
Sweden
To operationalise, assess and evaluate the feasibility and preliminary effects of implementing a person-centres approach to incontinence care for older adults with cognitive decline in residential care facilities in Sweden
|
Setting
Residential care facilities (n = 3)
Participants
Health care workers (n = 20)
Residents with cognitive decline (n = 54)
Gender
Female (59.9%)
Age (mean + SD) years
83.9 + 8.72
Range 68 to 99
Mental status
Cognitive decline
MMSE score of 9.28 ± 7.94
|
Intervention
Person centred approach focused on assessment and care planning to incontinence care over a 10-month period
Training was provided over 5 session s to teach participants how to tailor a person-centred incontinence plan
At the end of the 10-month period the participants created guidelines to make change towards person-centred incontinence care sustainable
|
Data collection
Health care records assessed by research team at baseline, immediately after and at 6 months
Process outcome measures of the person-centred approach
Impact outcome measures of participants quality of life
Impact outcome measures of participants quality of care
Outcome measures
Quality of life in late stage dementia
Continence status (Totally independent – using the toilet with no need of any containment product; partly continent – continent if assisted when needing to go to the toilet with or without use of a containment product; totally incontinent – being dependent on containment products 24/7 and not managing by oneself
Has basal assessment of incontinence been conducted?
Have person centred actions been taken regrading incontinence?
Has the resident been given adapted continence aids?
MMAT score
75%
|
Pre-Test/Post-test
|
Study 9: Tanaka et al., 2009 [63]
Japan
To investigate whether a system of individualized and comprehensive care was able to increase the intake of fluids and food, and to reduce the proportion of diaper users and the size of their diaper pads, thus leading to an enhanced quality of life
|
Setting
Nursing homes (n = 17)
Participants
Nursing home residents (n = 122)
Gender
Female (85.2%)
Age (mean) years
85.2
Mental status
Dementia
|
Intervention
Individualized and comprehensive care that focused on providing adequate fluids and meals, encouraging patients to use toilets and reducing the size of their diaper pads. This approach would differ significantly from the usual UI care in which diapers would be changed only at scheduled times
|
Data collection methods
Water intake volume, condition of diapers (dry or wet), when residents wet their diapers were recorded in residents check sheets by staff
Hours spent in wet diapers were calculated by subtracting the total time spent in dry diapers from 24 h
Types of pants or diapers (cloth pants, training pants, diaper, cloth diapers) and the size of pads (S, M, L, XL, 2XL)
Method of daytime urination (Toilet, commode chair, urinary chamber pot, diaper
Outcome measures
Mean water intake volume
Time spent in wet diapers (hours/day)
Changing types of pants or diapers and the size of pads during daytime
Change in method of daytime night-time urination
MMAT score: 100%
|
Post intervention descriptive surveys
|
Study 10: Gitlin and Corcoran 1993 [66]
USA
To describe the use of the home environment by 17 spouse caregivers to manage problems associated with bathing and incontinence
|
Setting: Home
Participants
Spouse caregivers of elderly with dementia (n = 17)
Recruited from a network of local social services agencies
Demographic characteristics of elderly PLWD not provided
Mental status
Physician’s diagnosis of dementia
|
Intervention
Individual treatment strategies delivered by an OT and designed to enhance the caregiver's ability to problem solve about their environment and to develop effective solutions to situations they considered problematic
|
Data collection
Data recording form completed by OT
Outcome measures
Number of solutions which were implemented by a caregiver
Number of solutions deemed ineffective and which were eliminated by the caregiver
MMAT score: 75%
|
Study 11: Corcoran and Gitlin 2001 [65]
USA
To describe the specific aspects of treatment that were accepted and utilized by 100 family caregivers
|
Setting: Home
Participants
Family caregivers in the treatment arm of a RCT (n = 100)
Recruited using media announcements and social service referrals
Demographic characteristics of elderly PLWD not provided
Mental status
Physician’s diagnosis of dementia
|
Intervention
Environmental Skill-Building Program
Home environment intervention delivered by OTs and included toileting and incontinence same as Gitlin and Corcoran 1993
|
Data collection
Interviews to ascertain:
The specific problems areas that were addressed in the intervention
The specific strategies that the caregiver indicated a willingness to try (attempted)
The strategies the caregiver actually used
Outcome measures
Number and type of problem area
Strategies for specific problems
Strategies by environmental layers
Acceptance and use of environmental strategies
MMAT score: 75%
|
Key: AD: Alzheimer’s Disease; CI: confidence intervals: C: control; I: intervention; IST: individualized scheduled toileting; MMAT: mixed methods evaluation tool; MSE: mental state examination, OT: occupational therapist; PLWD: people living with dementia; RCT: randomised controlled trial, RR: response rate; SPMSQ: Short Portable Mental Status Questionnaire; UI: urinary incontinence |
The research studies used a variety of research methodologies which included case series with non-concurrent multiple baselines (n = 2) [60, 61], RCT [62], pre-test/post-test [63], prospective cohort study [64], post intervention descriptive surveys (n = 2) [65, 66]; cross sectional survey (n = 2) [67, 68], an adapted three-stage Delphi consultation study [69] and qualitative methods (n = 4, across 5 publications) [70–74]. The non-research material consisted of web pages/web booklets (n = 5) [75–79], guidelines (n = 2) [10, 80], reports (n = 2) [81, 82], guidelines/guidance (n = 2) [33, 83], framework (n = 1) [84], model (n = 1) [85] and information sheets (n = 1) [86]. Seven research studies were conducted in the USA [60, 61, 65, 66, 70, 72, 87], two in Australia [67, 73] and one in each of the following countries; UK [69], Japan [63], Taiwan [68], Malta [74] and Sweden [64]. Only four of the non-research materials were published outside of the UK with one European guideline [10], one international guideline [33] and the framework and the model published by the same author from Australia [84, 85]. The research studies were conducted across a variety of settings which included the home care and community setting (n = 5) [62, 65, 66, 69, 70], nursing homes (n = 2) [63, 73], AD rehabilitation centres (n = 2) [60, 61], secondary care settings (n = 3) [68, 72, 74], residential treatment facility [64] and across multiple locations (AD specific day centre and home care setting [87] or hostel care for ambulant people with dementia, aged care complex with hostel and nursing home facilities and an acute hospital ward [67] or day centre and long term care facility (LTCF) [68]). Across studies participants included PLWD [67, 74], residents of nursing homes who had a diagnosis of AD[60, 61], residents of LTCFs with cognitive decline[68], family members or caregivers of PLWD [62, 65, 66, 69, 70, 74, 87], day centre staff [87], care centre managers [67] nursing home staff [73], primary care providers [69] and secondary care providers [69]. Rolnick et al., conducted their study with a number of secondary care providers and these were physicians, nurse practitioners and pharmacists [72].
Quality assessment of included research studies
The overall quality across the studies was variable. Two of the four qualitative studies fulfilled all four quality criteria on the MMAT, with the remaining two studies fulfilling three of the quality criteria, but did not report whether the researcher’s role might influence the outcome of the study [74, 87]. The RCT fulfilled three out of the four quality criteria, with the complete outcome data (80% or above) not reported [62]. There were six quantitative non-randomised studies and of these three fulfilled all four quality criteria [60, 61, 63], for two studies it was not possible to ascertain the response rate for the sample [65, 66] and the other did not compare the base line characteristics between those in the control and intervention groups [64]. The remaining three studies were quantitative descriptive, two studies fulfilled all four criteria [67, 68] and the study that did not, we were unable to ascertain what the response rate was for the sample [69].
Narrative synthesis
The first objective was to identify and explore carers’, family members and HCP’s perceptions and experiences of communication and the use of individualised management plans to support continence care for PLWD. Eight themes were identified: communicating in a dignified way, attitudes of HCPs towards continence and continence care, presence of PLWD during outpatient consultations, initiating conversations during outpatient consultations, the language of incontinence during outpatient consultations, the importance of non-verbal cues, finding the appropriate words and symbols to describe the toilet and the importance of individualised continence care. Some aspects of these themes inevitably overlap as they are all in some way related to communication.
Communicating in a dignified way
The importance of protecting personal and social dignity [72, 73, 87] 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 [72, 73] and distressing issue [85]. 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 [73].
The importance of respecting PLWDs right to privacy was also considered important [73, 85, 87]. In order to relieve PLWD perceived embarrassment of accepting assistance [73, 87], HCPs stressed the importance of building rapport and trust, using humour [85] and “acting natural “ [87, 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 [73]. Other strategies to enhance privacy included whispering to the client about toileting issues [73] and keeping these issues secret [87]. However, HCPs acknowledged that PLWD may have difficulties in recognising and communicating their continence needs and that not being verbally being able to request toileting assistance was viewed a barrier to protecting dignity [73]. Closely overlapping with this theme of communication is the issue of HCPs attitudes towards continence care.
The attitudes of HCPs towards continence and continence care
The language used within a care environment is important regarding continence care [81, 84] and is not always respectful [81] but where staff had good knowledge of the people they cared for, then they were respectful and built good relationships with PLWD [81]. Ostaszkiewicz et al., [84] on discussing coercive continence care practices, described them as including the use of verbal or physical force to wash a person, to accept wearing incontinence pads or other forms of incontinence containment and to accept continence checks” [84 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 [74]. 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” [74 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 [74, 87]. Ostaszkiewicz [84] recognised that “Communicating therapeutically about incontinence with any person, including people with dementia, involves the demonstration of warmth, compassion and humanity” [84 p. 523]. This is a skill that requires both clinical knowledge and interpersonal and communication skills, which should all be included within education programs [85]. Both formal caregivers and family carers would benefit from such programs, which would also enable the development of “empathetic understanding” [84 p. 8] to the emotions that a PLWD has in response to incontinence and its care [84].
Presence of PLWD during outpatient consultations
There is a lack of consensus as to whether PLWD should be present with their caregivers during outpatient consultations [70–72]. Health care providers believed that care recipients should be present when discussing continence problems during consultations [72], however, caregivers expressed mixed opinions [70, 71]. 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 [70]. 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 [70]. 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 was not found for spouses. However, time constraints or inability to meet alone with the HCPs prevented in-depth discussions from taking place [71]. Some caregivers suggested that HCPs could explain the problem and management options in simple terms when the care recipient was present in outpatients and then speak separately to the caregiver, providing more details [70].
Initiating conversations during outpatient consultations
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 [70–72]. Caregivers believed that it is the responsibility of HCPs to initiate conversations about incontinence during both initial consultations and follow up appointments [70]. 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 [71]. In contrast HCPs thought that conversation about incontinence should be initiated by the caregiver [70]. 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 [72]. 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 during a specialist secondary care referral [72]. Extended family and friends who were caregivers reported that HCPs don’t always ask about incontinence during consultations [71]. 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 [72]. 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 [72]. 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 nurse in continence care [72].
The language of incontinence during outpatient consultations
Caregivers desired “straight talk” from HCPs about incontinence and its management in relation to PLWD [70]. Hispanic caregivers stressed that it was essential for providers to discuss incontinence using language that those with English as a second language can understand. They strongly supported having written materials about incontinence in PLWD and treatment plans available in Spanish [71]. During outpatient consultations caregivers rarely used the term incontinence, instead use terms such as having accidents, leaking, losing control, wetting or messing their pants, having a urine/bowel problem, urgency, diarrhoea, loose bowels, being unable to hold it, and not getting there in time, difficulty in getting to the bathroom, leaking, soiling themselves [70, 72]. Health care providers also tend to adopt these terms when discussing incontinence with family caregivers or patients [72]. Caregivers when questioned said that they did not know the right terms and didn’t want to be disrespectful to their care recipients. However, once they were made aware of the term incontinence, they were happy to use it [70].
The importance of non-verbal cues
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, 60, 61, 65–67, 70, 72, 73, 78, 79, 81, 87]. It is therefore important to recognised the non-verbal signals, body language, facial expressions, behaviours and any signs that the PLWD uses to communicate in such instances [78, 79, 81, 87] so that their wishes can be acknowledged [81]. Listening carefully to the words or phrases that PLWD use for describing the toilet [67, 77, 79–81] as well as being able to recognise familiar gestures [67, 80, 81] is seen as important. New staff should be trained to recognize the importance of toileting and to how to understand individual behaviours and non-verbal cues in relation to toileting [87].
A range of different non-verbal cues had been observed or reported and include:
-
someone pulling/taking off their clothing when they need to go to the toilet [10, 68, 78]
-
making particular sounds such as moaning or grunting [68, 78, 87]
-
assuming a different posture [37]
-
someone looking around [87]
-
fidgeting [10, 77, 86, 87]
-
getting up and walking around or pacing [76, 77, 86, 87] or restlessness [10, 68]
-
holding their crotch or their stomach [10, 77, 87]
-
different facial expressions such as worry [10] or sorrow [68]
-
going to the corner of the room [77]
-
pulling at their clothes [10, 86]
Hutchinson et al., [87] also reported a number of affective cues which included anger, profanity and acting frustrated and irritable. One study investigated common behaviours when PLWD experience either bowel movement or urination needs, found that anxiety, restlessness, and taking off/putting on clothes inappropriately occurred in more than 30% of patients [68].
Finding the appropriate words and symbols to describe the toilet
Wilkinson et al., [67] 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 there in some institutions there was no labelling (22%). 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”. A further survey was conducted with participants living with dementia and was reported within the same publication and the preferred word and symbol for toilet varied significantly (p < 0.05) according to their level of dementia (which had been assessed using the Folstein mental state examination and classified as normal, mild, moderate and advanced). “Ladies” or “Gents” was preferred by those with normal cognition and “toilet” by those with moderate dementia. The international symbol (male and female symbols) was preferred by people with normal cognition or mild dementia whilst the toilet symbol was preferred by those with more advanced dementia [67].
The importance of individualised continence care
Targeted and individualised/person centred continence care [10, 33, 73, 75, 79, 82] that is established after a thorough clinical assessment has taken place [10, 33, 84, 86] is seen as being important. This would include the use of a bladder diary [10]. Individualised care continence care is described as about what is best for the PLWD [10, 79], avoiding harm [10] and about promoting autonomy and independent living [10].
Objective two
The second objective was to identify and explore the communication strategies and individualised management plans that carers’, family members and HCPs use in response to the continence needs of PLWD. Six themes were created: general communication strategies, communication strategies for outpatient appointments, using technology to present instructions, components of individualised care plans, HCPs and caregivers working in partnership and establishing a toilet routine within the home environment.
General communication strategies
A number of general communication strategies between HCPs and PLWD have been suggested.
-
To reduce anxiety/fear / embarrassment it is important to check HCPs awareness of good communication techniques when working with PLWD [69]
-
Prompting [10, 78, 80, 81]
-
Get to know the PLWD [78] and how they communicate [79]
-
Health care providers introducing themselves and seeking PLWD approval before performing tasks [73]
-
Ask the PLWD how you can help them manage their continence [77]
-
Communicate with the family to determine usual behaviour patterns [87]
-
Get to know the PLWD such as previous routines, habits and lifestyle [77, 79]
-
Don’t make assumptions and see the person as an individual [79]
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 [71]. They wanted support and reassurance 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 [70].
One further study described how nursing staff communicated with residents’ families about methods to manage incontinence when taking the PLWD “on an outing”[73 p. 2432] The advice included information about how to check and change pads, how to assist the resident to the toilet, and how long pads could potentially last without needing to be changed [73].
Communication strategies for outpatient appointments
There were a number of recommendations presented by both caregivers and HCPs in terms of resources that could be provided for the caregivers attending outpatient consultations [70–72] for example:
-
A guide for caregivers was developed that covered talking to a health care provider about these problems; with definitions of common clinical terms [70]
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A pre-visit check list or written materials of some type so that patients/caregivers could indicate whether incontinence was present, this could then prompt the HCP to start a discussion during the consultation [72]
-
Readily available handouts that would offer more detailed explanations of what had been covered during the appointment [72]
-
Short, focused handouts that could stand alone and address a single concern [72]
Using technology to present instructions
Two pilot studies [60, 61] conducted by the same authors explored the effectiveness of verbal instructions, presented automatically through simple technology, in helping persons 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 [60, 61].
Components of individualised care plans
A number of different components that may be considered as part of individualised care plans have been identified which include; being theory based [33], being concerned with the practical issues [75], and involved multi-components exploring both day time and night care of incontinence [33]. There was a general consensus that the needs of both PLWD and their caregivers need to be considered [10, 33, 82–84]. The advice given by the Alzheimer’s Society was that a continence care plan should be tailored to the individual. This should aim “to cure toilet problems or incontinence wherever possible” [75 webpage]. Other components to consider include changing medication [75], changes to lifestyle [75], exercise [75], skin care [33, 84], manipulating the type, quantity and timing of food and drink [75], describe support available from HCPs [75] and follow up advice [75].
Ostaszkiewicz et al., [84] comments that nurses and care workers need support in order to develop individualised strategies to ”optimize the care-dependent person’s rest/sleep in the context of the person’s concurrent need for continence and skin care” [84 p524/5]. Three studies described individualised care plans as part of wider interventions [63, 65, 66]. One was conducted within nursing homes and one member of staff from each home was selected to take part in a training program who then became responsible for educating other staff members. The intervention in this instance was multi-faceted covering individualised and comprehensive care that focused on providing adequate fluids and meals, encouraging patients to use toilets and reducing the size of their incontinence pads. This approach differed significantly from the usual UI care in which incontinence pads would be changed only at scheduled times. Improvements across the different methods of urination were observed (incontinence pads, commode, urinary chamber pot) with only 11% of residents showing improvements during the day which were non-significant, whereas 19% of residents showed significant improvement during the night, changing from using incontinence pads to using the toilet. Overall a large number of residents’ toileting remained unchanged following the intervention [63].
Two studies [65, 66] evaluated an environmental skill-building program which was a home environment individualised intervention delivered by occupational therapists, which included toileting and incontinence. The intervention was designed to enhance the caregiver's ability to problem solve about their environment and to develop effective solutions to situations they considered problematic. The study by Gitlin and Corcoran [66] was a pilot study and the 59% of caregivers reported incontinence as problematic in their daily management routine. Problems included night-time and/or daytime incontinence of the bladder and/or bowel, resistance to toileting, or confusion as to how to perform an aspect of the toileting task. Seventeen effective caregiver initiated environmental solutions for incontinence were observed and of these, nine solutions (53%) were accepted by the caregivers and integrated into their management routine by visit five of the intervention. For the later study by Corcoran and Gitlin [65] 29% of caregivers identified continence as a problem area that needed addressing. Twenty-six attempted strategies that involved assistive devices and of these, 21 (81%) were used. Fifty-one attempted strategies to manipulate the type, quantity and timing of food and drink and 46 (90%) were used. The authors did not provide any further detail on the nature of the assistive devices.
One further study implemented a person-centred approach that focused on incontinence for residents with cognitive decline in residential treatment facilities [64]. The health workers were provided with training, however only 20 out of 100 participated although the process outcomes were measured among all residents who agreed to participate in the study. There were no statistically significant mean differences in quality of life scores before and after the intervention or between control and intervention participants. However, the quality of care improved for the intervention participants in that, fewer aids were needed to manage incontinence and an increased number of UI assessments were conducted.
Health care professionals and caregivers working in partnership
The importance of HCPs and caregivers working together to deliver individualised/person centred continence care was a feature of three intervention studies [62, 65, 66] and was encouraged within four pieces of non-research material [75, 79, 82, 83]. 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 [62]. Occupational therapists worked with the caregivers in a further two intervention studies [65, 66] to deliver solutions to toileting and incontinence problems, which consisted of five visits over two [65] or three months [66]. Other HCPs that work with PLWD and their caregivers include continence advisors [75] or other HCPs specialising in continence care [79]. Working in partnership with caregivers and PLWD is important [75, 79, 83] and enables HCPs to gather their personal story [82] 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 [75].
Establishing a toileting routine within the home environment
The importance of developing a regular toileting schedule was discussed briefly within one study [66] and one piece of non-research material [10] and was the focus of one intervention study [62]. The intervention group in the study by Jirovec and Templin [62] were taught an individualised scheduled toileting procedure, which compensated for cognitive impairment by providing memory impaired patients with toileting reminders such as verbal prompts. Initially, assignment was to one of two intervention groups: one group of participants was visited every two months, and the other group after a six-month interval. There was also a control group. At the six-month follow-up, the two intervention groups did not differ with respect to UI, therefore the original two intervention groups were combined, leaving a single intervention group and 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 six 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 in the experimental group (Z = − 1.83, p < .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, 88].
Objective three and overarching synthesis
The third objective was to identify the facilitators and barriers around developing communication strategies and individualised management plans in response to the continence needs of PLWD. In addressing this objective, a matrix that consisted of three overarching final synthesised findings (communication that is dignified, person centred and respectful, communication during outpatients appointments and delivering individualised continence care) was juxtaposed with barriers and facilitators alongside the results of interventions was produced (see Table 5). The extent to which the review findings are reasonable representations of each theme using the GRADE and CERQual approach is presented alongside each component of the overarching syntheses. Where there were no research studies that presented information on barriers or facilitators, we drew on the information within the non-research material.
Table 5
Overarching synthesis matrix that juxtaposed barriers and facilitators alongside the results of interventions
View on barriers and facilitators
|
Interventions that address
barriers or build on facilitators
|
Synthesised finding 1: Communication that is dignified, person centred and respectful
|
Barriers
|
Facilitators
|
Interventions
|
Communicating in a dignified way
|
PLWD & their carers find talking about incontinence distressing and embarrassing
CERQual:Moderate / Studies 2, 3,4
|
HCPs to build trust and rapport through using humour, having appropriate knowledge and skills by speaking quietly and keeping incontinence issues secret
CERQual:Moderate / Studies 2, 3,4
|
None identified
|
The attitudes of HCPs towards continence and continence care
|
HCPs often ignore toileting requests or avoid routine toileting citing being busy or being uncomfortable with or disinterested in toileting
CERQual:Very Low / Study 2, 12
Staff in acute settings do not consistently promote continence
CERQual:Very Low / Study 14
|
HCPs having respect building relationships and using appropriate language
CERQual: Very Low / Study 2
Interpersonal and communication skills are important and should be a focus of education programs [83, 84]
(Non research:Ungraded)
|
None identified
|
The importance of non- verbal cues
|
PLWD are not always able to recognise and communicate that they need to go to the toilet or indicate that they need assistance [37, 78–80] and they use a variety of non-verbal cues to indicate that they need to go to the toilet [37, 76, 77, 79, 85]
CERQual High: Study 1, 2, 3, 4, 5, 6, 7, 10, 11, 12
(Non research:Ungraded)
|
Finding out what words or phrases that PLWD use for describing the toilet [38, 67, 77, 79, 80] as well as being able to recognise familiar gestures or is seen as important [38, 67, 80]
Non research:Ungraded
HCPs checking PLWD awareness of communication techniques including non-verbal cues through communicating with the family
CERQual: Low / Studies 2, 13
HCPs being able to recognize the non-verbal signals, body language, facial expressions, behaviours and signs that PLWD use to communicate that they need to go toilet and this should be a focus education programs for new staff
CERQual: Low / Studies 2, 12
|
None identified
|
Finding the appropriate words and symbols to describe the toilet
|
|
People living with moderate dementia preferred the word toilet compared to those with normal cognition and those with advanced dementia preferred the international symbol for toilet compared to those with mild or normal cognition
CERQual:Very Low / Study 7
|
|
General communication strategies
|
|
HCPs introducing themselves and seeking PLWD approval before performing tasks
CERQual:Very Low / Study 4
A range of strategies have been identified that include getting to know the PLWD & how they communicate and manage their continence, communicating with the family, prompting, seeing the person has an individual, and checking HCPs communication skills [37, 38, 77–80, 86]
(Non research:Ungraded)
|
|
Using technology to present instructions
|
|
|
Verbal instructions, presented automatically through simple technology has the potential to be effective in helping persons with mild or moderate levels of AD go to the toilet independently by presenting simple step wise sequential instructions Grade:Very Low / Studies 5, 6
|
Synthesised finding 2: Communication during outpatient appointments
|
Barriers
|
Facilitators
|
Interventions
|
Presence of PLWD during outpatient consultations
|
Caregivers felt having the PLWD with them during outpatient consultations could cause unnecessary anxiety
CERQual:Very Low / Study 1
|
Caregivers felt having the PLWD with them during outpatient consultations would allow greater cooperation with management strategies
CERQual:Very Low / Study 1
HCPs felt it was important that PLWD were present at appointments
CERQual:Very Low / Study 3
|
None identified
None identified
|
Initiating conversations during outpatient consultations
|
Uncertainty over who should initiate conversations during consultations
CERQual: Very Low / Study 3
|
HCPs suggested developing a pre-visit checklist to prompt conversation during consultations
CERQual:Very Low / Study 3
|
None identified
|
The language of incontinence during outpatient consultations
|
Incontinence and management options after often explained in terms that caregiver find difficult to understand.
CERQual: Low / Study 1, 3
|
HCPs suggested handouts that could offer more detailed explanations to take home
CERQual:Very Low / Study 3
|
None identified
|
Communication strategies for outpatient appointments
|
|
Caregivers and HCPs suggested developing a caregiver guide that would be available prior to the consultation or handouts that caregivers could take away with them afterwards
CERQual:Low / Study 1, 3
|
None identified
|
Synthesised finding 3: Delivering individualised continence care
|
Barriers
|
Facilitators
|
Interventions
|
Importance of individualised continence care
|
|
Targeted and individualised/person centred continence care that is established after a thorough assessment has taken place is seen as important [31, 37, 73, 75, 79, 81, 83, 85]
(Non research:Ungraded)
Individualized continence care is about what is best for the PLWD and avoiding harm and about promoting autonomy and independent living [37, 79]
(Non research:Ungraded)
|
None identified
|
Components of individualised care plans
|
|
Individualised care plans should consider the needs of both PLWD and their caregivers and involve multi-components exploring both day-time and night care of incontinence are helpful in addressing incontinence in the home care setting [31, 37, 75, 81–83]
(Non research:Ungraded)
|
An intervention that involved individualized and comprehensive care for residents in a care home that focused on providing adequate fluids and meal by encouraging patients to use toilets was effective for 19% of residents in reducing the proportion of diapers used
Grade:Very Low / Study 9
An intervention that involved individual treatment strategies delivered by an occupational therapist and designed to enhance the caregiver's ability to problem solve about their environment. A post intervention survey reported that this approach enabled caregivers to develop effective solutions to situations they considered problematic which included toileting
CERQual:Very Low / Studies 10, 11
An 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 / Study 14
|
Health care professionals and caregivers working in partnership
|
|
It is important that HCPs and caregivers work together to deliver individualized/person centred continence care [75, 79, 81, 82]
(Non research:Ungraded)
|
None identified
(although a feature of three intervention studies (62,65,66)
|
Establishing a toileting routine within the home environment
|
|
The importance of developing a regular toileting schedule was highlighted by caregivers [37]
CerQUAL: Very Low / Study 10
(Non research:Ungraded)
|
An individualized scheduled toileting program that compensated for cognitive impairment by providing memory-impaired patients with toileting reminders was not been shown to any significant benefits in terms of improving the number of incontinent episodes for PLWD in a home care setting
Grade:Very Low / Study 8
|
Key: HCP: health care professional; PLWD: People living with dementia |