Background
Methods
Design
Scoping exercise
Stakeholders | Source of contact | Source of information |
---|---|---|
DCAs Young onset team DCA (n = 1) REACT crisis team DCA (n = 1) (when a person has an additional mental health crisis on top of their dementia) Community DCA’s (n = 3) | SOLACE A service within the local University Health Board which exists to provide support to carers and those diagnosed with dementia, depression or severe later life mental illness. Their aim to help prevent admission to hospital and deterioration in relation to being in hospital. | Group discussion followed by individual priority setting exercise |
DCA’s | Liaison Psychiatry A service that covers wards in the general hospital setting. Their role is to help PLWD when they are in hospital if they are struggling and who are exhibiting behaviours that challenge or if they are anxious or agitated such as walking around a lot and the staff are not able to cope | Group interview followed by individual priority setting exercise |
Continence service team Nurse consultant (n = 1) CNSs (n = 7) | NHS Continence Service An outpatient based service. The role of the team is to accept and take referrals from primary care general practitioners district nurses and others to see patients with incontinence and to assess and put in place a suitable management plan for them | Group discussion followed by individual priority setting exercise with CNSs Individual Interview with nurse consultant followed by setting exercise |
Occupational therapist (n = 1) | Facebook Currently works on an elderly ward with both functional patients and PLWD. Previous employment was on a specific dementia ward in a community hospital | Individual interview followed by priority setting exercise |
PLWD (n = 2) Family carers (n = 11) DCA (n = 10) Activities coordinator of local care home (n = 1) Volunteer from the Alzheimer’s society (n = 1) | Dementia Consultation Event A whole day event in which issues around toileting and continence were explored through narrative and creative presentations (through pictures, poems and artistic expression, arts, and discussion. | Group discussion followed by individual priority setting exercise |
Objectives
Eligibility criteria
Participants
Interventions/phenomena of interest
Comparators
Outcomes
Study designs
Context
Searching
Screening, quality appraisal, and data extraction
Synthesis
Results
Description of included material
Characteristics of the included material
Author/s, year, country Aim | Setting Participants | Demographic details for PLWD | Methods MMAT score |
---|---|---|---|
Study 1: Bliss et al. 2013 [61] 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 [62] 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 [63] 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 [64] 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 [65] 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 [66] 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% |
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 (p. 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% |
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. 2009a [70] USA The authors presented three pilot studies that 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 [71] 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 [72] USA To evaluate the effectiveness of an individualised 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 individualised 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 15: Wijk et al. 2018 [73] 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 baseline assessment of incontinence been conducted? Have person centred actions been taken regarding incontinence? Has the resident been given adapted continence aids? MMAT score 75% |
Pre-test/post-test | |||
Study 9: Tanaka et al. 2009 [74] Japan To investigate whether a system of individualised 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 Individualised 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 [75] 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 [75] USA To describe the specific aspects of treatment that were accepted and utilised 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% |
Quality assessment of included research studies
Thematic synthesis
Theme 1: Communication that is dignified, person-centred, and respectful
Communicating in a dignified way
The attitudes of HCPs towards continence and continence care
The importance of non-verbal cues
Finding the appropriate words and symbols to describe the toilet
Strategies for improving communication
Using technology to present instructions
Theme 2: Communication during outpatient appointments
Presence of PLWD during outpatient consultations
Initiating conversations during outpatient consultations
The language of incontinence during outpatient consultations
Theme 3: Delivering individualised continence care
The importance of individualised continence care
Components of individualised care plans
Health care professionals and caregivers working in partnership
Establishing a toileting routine within the home environment
Overarching synthesis
Theme 1: Communication that is dignified, person-centred, and respectful | |
Communicating in a dignified way | |
1. PLWD and their carers find talking about incontinence distressing and embarrassing CERQual: moderate/studies 2, 3, 4 2. 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 | |
The attitudes of HCPs towards continence and continence care | |
3. HCPs often ignore toileting requests or avoid routine toileting citing being busy or being uncomfortable with or disinterested in toileting CERQual: moderate/studies 2, 14 4. Staff in acute settings do not consistently promote continence CERQual: very low/study 14 5. HCPs having respect building relationships and using appropriate language CERQual: very low/study 2 6. Interpersonal and communication skills are important and should be a focus of education programs [86, 87] (non-research: ungraded) | |
The importance of non-verbal cues | |
7. PLWD are not always able to recognise and communicate that they need to go to the toilet or indicate that they assistance [10, 80, 81, 83] and they use a variety of non-verbal cues [10, 79, 81‐83, 85, 87] CERQual: high: studies 1, 2, 3, 4, 5, 6, 7, 10, 11, 12 and non-research: ungraded 8. HCPs checking PLWD awareness of communication techniques including non-verbal cues through communicating with the family CERQual: moderate/studies 2, 13 9. HCPs being able to recognise the non-verbal signals, body language, facial expressions, behaviours, and signs that PLWD use to communicate that they need to go toilet is crucial [79‐81] and this should be a focus education programs for new staff CERQual: moderate/studies 2, 12 and non-research: ungraded | |
Finding the appropriate words and symbols to describe the toilet | |
10. Finding out what words or phrases that PLWD use for describing the toilet is seen as important [79, 81‐83] CERQual: very low Study 7 and non-research: ungraded 11. People living with moderate dementia preferred the word toilet compared to those with no cognitive impairments and those with advanced dementia preferred the international symbol for toilet compared to those with mild dementia or no cognitive impairment CERQual: very low/study 7 | |
Strategies for improving communication | |
12. HCPs introducing themselves and seeking PLWD approval before performing tasks CERQual: very low/study 4 13. 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 [10, 80‐83] CERQual: moderate/studies 4, 13 and non-research: ungraded | |
Using technology to present instructions | |
14. Verbal instructions, presented automatically through simple technology has the potential to be effective in helping persons with mild or moderate AD go to the toilet independently by presenting simple step wise sequential instructions Grade: very low/studies 5, 6 | |
Theme 2: Communication during outpatient appointments | |
Presence of PLWD during outpatient consultations | |
15. Caregivers felt having the PLWD with them during outpatient consultations could cause unnecessary anxiety CERQual: very low/study 1 16. Caregivers felt having the PLWD with them during outpatient consultations would allow greater cooperation with management strategies CERQual: very low/study 1 17. HCPs felt it was important that PLWD were present at appointments CERQual: very low/study 3 | |
Initiating conversations during outpatient consultations | |
18. Uncertainty over who should initiate conversations during consultations CERQual: very low/study 3 19. HCPs suggested developing a pre-visit checklist to prompt conversation during consultations CERQual: very low/study 3 | |
The language of incontinence during outpatient consultations | |
20. Incontinence and management options are often explained in terms that caregiver find difficult to understand. CERQual: low/studies 1, 3 21. Caregivers and HCPs suggested a variety of written information resources that could be provided CERQual: low/studies 1, 3 | |
Theme 3: Delivering individualised continence care | |
Importance of individualised continence care | |
22. Targeted and individualised/person centred continence care that is established after a thorough assessment has taken place is seen as important [10, 33, 77, 81, 84, 86‐88] non-research: ungraded 23. Individualised continence care is about what is best for the PLWD and avoiding harm and about promoting autonomy and independent living [10]. non-research: ungraded | |
Components of individualised care planning | |
24. Individualised care planning 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 [10, 33, 77, 84‐86] non-research: ungraded 25. An intervention that involved individualised 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 26. 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: low/studies 10, 11 27. 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 15 | |
Health care professionals and caregivers working in partnership | |
28. It is important that HCPs and caregivers work together to deliver individualised/person centred continence care [77, 81, 84, 85] non-research: ungraded | |
Establishing a toileting routine within the home environment | |
29. The importance of developing a regular toileting schedule was highlighted by caregivers [10] CerQUAL: very low/study 10/non-research: ungraded 30. An individualised scheduled toileting program that compensated for cognitive impairment by providing memory-impaired patients with toileting reminders was not shown to have any significant benefits in terms of improving the number of incontinent episodes for PLWD in a home care setting Grade: very low/study 8 |