Living with incontinence: The experience of people with dementia

Cole, Laura; Drennan, Vari

doi:10.1177/1471301217731171

Cited by 15 publications

(25 citation statements)

References 24 publications

(41 reference statements)

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…The Consolidated Criteria for Reporting Qualitative (COREQ) Research guideline statement assists the reporting [ 16 ]. Ethical Approval was received from NHS Health Research Authority, London—City & East Research Ethics Committee (reference 18 LO 1836). This research was supported by funding from Alzheimer’s Society (grant number AS-JF-17-012).…”

Section: Methodsmentioning

confidence: 99%

A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment

et al. 2021

View full text Add to dashboard Cite

Background most people living with dementia (PLWD) will develop incontinence problems with associated harmful consequences. Well-contained incontinence is often the main treatment goal. It would therefore be expected that poorly contained incontinence would have a negative impact. Aim to investigate differences in how well-contained or poorly contained incontinence impacts on the experience of living with incontinence for PLWD at home and their carers. Design secondary analysis of a qualitative study. Methods semi-structured interviews were undertaken with PLWD, carers and healthcare professionals (continence or dementia nurses). PLWD and carers were recruited via www.joindementiaresearch.nihr.ac.uk and via dementia/carer groups. Nurses were recruited via their employers. Interviews were recorded and transcribed verbatim. Framework analysis was used. Results forty-five people (twenty-six carers, two PLWD, nine continence nurses and eight dementia nurses) participated. Despite poorly contained incontinence, some PLWD/carer dyads appeared relatively unaffected by incontinence. Conversely, one or both members of some dyads who achieved good containment found incontinence care highly challenging. Four themes were identified, together forming a preliminary model of incontinence containment and impact, as follows: Conclusion reliable containment is an important goal for PLWD living at home and their carers, but it is not the only goal. Other factors, such as behaviours that challenge or carer coping strategies, can mean that even well-contained incontinence can have a negative impact. This paper proposes a preliminary model for evaluation.

show abstract

Section: Methodsmentioning

confidence: 99%

A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment

et al. 2021

View full text Add to dashboard Cite

show abstract

“…While ISC may not be an option in patients with severe cognitive impairment, we found that patients with earlier/milder disease appear to still be suitable candidates. Research on continence in patients with cognitive impairment reveals that for disclosure of issues surrounding UI, the self-referral rate for UI among the elderly is lower [ 23 ]. Drennan et al recorded that carers would try to preserve patient dignity and therefore tended to under-report the extent of the problem(s) [ 5 ].…”

Section: Discussionmentioning

confidence: 99%

“…We also found that time and active listening were required for patients to reveal continence problems. Cole et al added to this by finding that patients often prefer not to complain as they do not want to burden the carer [ 23 ]. Of the many stigmas held by individuals and society, the shame associated with lack of self-control of urine and faeces can be very powerful [ 24 ], such as the human response to such a matter that powerful emotions and tensions can be triggered [ 25 ].…”

Section: Discussionmentioning

confidence: 99%

Understanding the Impact of Urinary Incontinence in Persons with Dementia: Development of an Interdisciplinary Service Model

Juliebø‐Jones

Coulthard

Mallam

et al. 2021

Advances in Urology

View full text Add to dashboard Cite

Introduction. Prevalence of urinary symptoms such as incontinence (UI) in patients with dementia is estimated to exceed 50%. The resultant psychological and socio-economic burden can be substantial. Our aim was to develop a dedicated urology service within a cognitive impairment clinic in order to treat and better understand the bothersome urinary symptoms suffered by persons with dementia. Methods. Patients attending this clinic were invited to be assessed and interviewed by urologist, together with their family and/or carer. In addition, formal history, examination and relevant investigations, themes of importance such as quality of life, and select question items were drawn from validated questionnaires. Multidisciplinary team (MDT) meeting was carried out on the same day. Outcomes of the first 75 patients with UI and dementia have been reported. Results. Average age was 70 years (range 58–98). Majority of persons had a diagnosis of Alzheimer’s disease (n = 43, 57%). Average score for how much urine leakage interferes with everyday life was 7.7/10 (range 2–10). 58.7% (n = 44) revealed some degree of sleep disturbance due to UI. 83% (n = 62) stated daily activities were limited due to UI. Two-thirds of persons with dementia (n = 50) stated their bladder problem makes them feel anxious. 88% (n = 67) felt the topic was socially embarrassing. All carers stated that the person’s continence issues affect the care they provide. Less than one-third of carers (30.7%, n = 23) were aware of or had been in contact with any bladder and bowel community service. More than half of the carers (n = 46, 65%) were concerned incontinence may be a principal reason for future nursing home admission. Conclusion. UI can be distressing for persons with dementia. Care partners were concerned about loss of independence and early nursing home admission. Awareness of bladder and bowel services should be increased.

show abstract

“…These factors are also associated with a greater financial burden, prolonged hospitalisation, re-admission, and increased mortality [ 29 – 31 ]. Incontinence is recognised as potentially emotionally demeaning [ 32 ], humiliating, and embarrassing [ 33 ] for the person, and combined with dementia, increases the stigma [ 34 ] PLWD already experience [ 35 – 37 ], which can have significant negative impacts on quality of life [ 38 ].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2021

View full text Add to dashboard Cite

Background People living with dementia (PLWD) are at significant risk of developing urinary and/or faecal incontinence and are also at risk of functional incontinence or being labelled as being incontinent. Despite the growing population of PLWD and importance of continence care, little is known about the appropriate management, organisation, and interactional strategies for PLWD admitted to acute hospitals. This mixed methods systematic review and thematic synthesis sought to identify successful strategies across all care settings that could then be used to inform innovations in continence care for PLWD in the acute hospital setting. Methods In phase 1, a scoping search of two electronic databases (MEDLINE and PsycINFO) and a consultation with stakeholders was undertaken. Findings were presented to the project steering group and two priority areas for phase 2 were identified which were communication and individualised care plans. In phase 2, eight databases and relevant UK government and other organisational websites were searched for English language citations from inception to August 2020. Critical appraisal was conducted using the Mixed Methods Appraisal Tool (MMAT Version 11). Thematic synthesis was employed and the strength of synthesised findings for the intervention studies was assessed using the GRADE approach and the confidence in synthesised qualitative and survey findings was assessed using the CERQual approach. Results In phase 1, 1348 citations were found and 75 included. In phase 2, 6247 citations were found, 14 research studies and 14 policy and guidance documents were included. The quality of studies varied. Material was synthesised into three overarching syntheses which were: communication this is dignified, person-centred and respectful; communication during outpatients apointments and delivering individualised continence care. Conclusions Recognising that PLWD are not always able to communicate their continence needs verbally is important. Incorporating interpersonal and communication skills into the context of continence care within training for those working with this patient group is crucial for continence to be maintained during an acute admission. Continence care in the acute setting should be tailored to the individual and be developed in partnership with staff and caregivers. Trial registration PROSPERO: CRD42018119495.

show abstract

Living with incontinence: The experience of people with dementia

Cited by 15 publications

References 24 publications

A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment

A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment

Understanding the Impact of Urinary Incontinence in Persons with Dementia: Development of an Interdisciplinary Service Model

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

Contact Info

Product

Resources

About