{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,24]],"date-time":"2026-06-24T14:49:56Z","timestamp":1782312596688,"version":"3.54.5"},"reference-count":28,"publisher":"Public Library of Science (PLoS)","issue":"5","license":[{"start":{"date-parts":[[2022,5,26]],"date-time":"2022-05-26T00:00:00Z","timestamp":1653523200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000143","name":"Alzheimer Society","doi-asserted-by":"publisher","award":["AS-JF-17-012"],"award-info":[{"award-number":["AS-JF-17-012"]}],"id":[{"id":"10.13039\/501100000143","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:sec id=\"sec001\"><jats:title>Introduction<\/jats:title><jats:p>Incontinence is a major problem for people with dementia (PWD) and their family\/friend caregivers, often causing substantial harm, including residential care admission. The incontinence needs of PWD are complex and different from those of people without dementia.<\/jats:p><jats:p>The aim of this study was to investigate carer and nurse perceptions of continence service provision and potential improvements.<\/jats:p><\/jats:sec><jats:sec id=\"sec002\"><jats:title>Methods<\/jats:title><jats:p>A secondary analysis of qualitative data was undertaken. Semi-structured interviews (n = 45) were undertaken with PWD, family caregivers and healthcare professionals (continence or dementia nurses) in the UK. PWD and caregivers were recruited via<jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"http:\/\/www.joindementiaresearch.nihr.ac.uk\/\" xlink:type=\"simple\">www.joindementiaresearch.nihr.ac.uk<\/jats:ext-link>and via dementia\/carer groups. Nurses were recruited via their employers. Framework analysis was used. The COREQ Research guideline statement assists reporting.<\/jats:p><\/jats:sec><jats:sec id=\"sec003\"><jats:title>Results<\/jats:title><jats:p>Four themes were found. Firstly, there was a lack of awareness of the service and waiting time. Many caregivers were unaware of continence services and dementia nurses often viewed it as a pad provision service. Caregivers reported long waits not meeting their urgent needs. Secondly, product provision was often inadequate. Most caregivers self-purchased all or many products and substantial variation in product provision was found. The number of products provided was often inadequate. Thirdly, a sense that \u201cnothing can be done\u201d was observed by some nurses and caregivers. Caregivers believed that, if nothing else, care information should be provided. Finally, suggestions for improvements were made, including proactive service signposting, joint clinics with dementia services, improved information before crisis point, dementia training for continence nurses and improved product provision.<\/jats:p><\/jats:sec><jats:sec id=\"sec004\"><jats:title>Conclusion<\/jats:title><jats:p>Continence service inadequacies for PWD and caregivers have been reported for many years. This study demonstrates service provision remains unsatisfactory in the UK. Stakeholders propose a range of service improvements. It highlights that listening to the voices of PWD, caregivers and nurses is crucial for services seeking to improve continence services for PWD living at home.<\/jats:p><\/jats:sec>","DOI":"10.1371\/journal.pone.0268900","type":"journal-article","created":{"date-parts":[[2022,5,26]],"date-time":"2022-05-26T17:44:46Z","timestamp":1653587086000},"page":"e0268900","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":8,"title":["A qualitative study of continence service provision for people living with dementia at home in the UK: Still inadequate?"],"prefix":"10.1371","volume":"17","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1244-5106","authenticated-orcid":true,"given":"Cathy","family":"Murphy","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine","family":"De Laine","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Margaret","family":"Macaulay","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mandy","family":"Fader","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2022,5,26]]},"reference":[{"issue":"1","key":"pone.0268900.ref001","doi-asserted-by":"crossref","first-page":"63","DOI":"10.1016\/j.jalz.2012.11.007","article-title":"The global prevalence of dementia: a systematic review and metaanalysis","volume":"9","author":"M Prince","year":"2013","journal-title":"Alzheimers Dement"},{"issue":"8","key":"pone.0268900.ref002","doi-asserted-by":"crossref","first-page":"e1001505","DOI":"10.1371\/journal.pmed.1001505","article-title":"First diagnosis and management of incontinence in older people with and without dementia in primary care: a cohort study using The Health Improvement Network primary care database","volume":"10","author":"RL Grant","year":"2013","journal-title":"PLoS Med"},{"issue":"1","key":"pone.0268900.ref003","doi-asserted-by":"crossref","first-page":"33","DOI":"10.1111\/j.1471-6712.2007.00588.x","article-title":"Urinary incontinence and use of pads\u2014clinical features and need for help in home care at 11 sites in Europe","volume":"23","author":"LW S\u00f8rbye","year":"2009","journal-title":"Scand J Caring Sci"},{"issue":"3","key":"pone.0268900.ref004","doi-asserted-by":"crossref","first-page":"944","DOI":"10.1093\/ageing\/afaa262","article-title":"Problems faced by people living at home with dementia and incontinence: causes, consequences and potential solutions","volume":"50","author":"C Murphy","year":"2021","journal-title":"Age Ageing"},{"issue":"6","key":"pone.0268900.ref005","doi-asserted-by":"crossref","first-page":"1588","DOI":"10.1002\/nau.23160","article-title":"Urinary incontinence, but not fecal incontinence, is a risk factor for admission to aged residential care of older persons in New Zealand","volume":"36","author":"PJ Schluter","year":"2017","journal-title":"Neurourol Urodyn"},{"key":"pone.0268900.ref006","doi-asserted-by":"crossref","first-page":"75","DOI":"10.1186\/1471-2318-11-75","article-title":"A taboo within a stigma? a qualitative study of managing incontinence with people with dementia living at home","volume":"11","author":"VM Drennan","year":"2011","journal-title":"BMC Geriatr"},{"key":"pone.0268900.ref007","author":"Alzheimer Europe","year":"2014","journal-title":"Improving continence care for people with dementia living at home"},{"issue":"5","key":"pone.0268900.ref008","doi-asserted-by":"crossref","first-page":"553","DOI":"10.1016\/j.gerinurse.2020.02.006","article-title":"Permanent transition of homecare recipients with dementia to nursing homes in New York State: Risk factors","volume":"41","author":"Y Young","year":"2020","journal-title":"Geriatr Nurs"},{"key":"pone.0268900.ref009","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1186\/1471-2318-12-77","article-title":"Conservative interventions for incontinence in people with dementia or cognitive impairment, living at home: a systematic review","volume":"12","author":"VM Drennan","year":"2012","journal-title":"BMC Geriatr"},{"issue":"3\u20134","key":"pone.0268900.ref010","doi-asserted-by":"crossref","first-page":"356","DOI":"10.1111\/jocn.13582","article-title":"Continence care for people with dementia living at home in Europe: a review of literature with a focus on problems and challenges","volume":"26","author":"D Gove","year":"2017","journal-title":"J Clin Nurs"},{"key":"pone.0268900.ref011","author":"NHS England","year":"2018","journal-title":"NHS England Excellence in Continence Care"},{"key":"pone.0268900.ref012","author":"Continence Care Steering Group","year":"2014","journal-title":"Minimum Standards for Continence Care"},{"key":"pone.0268900.ref013","author":"Royal College of Nursing","year":"2019","journal-title":"Bowel Care Guidelines"},{"key":"pone.0268900.ref014","article-title":"A research agenda for promoting continence for people living with dementia in the community: Recommendations based on a critical review and expert-by-experience opinion","author":"Centre for Ageing, Dementia Research, Expert Review Group on Continence, Dementia","year":"2020","journal-title":"J Clin Nurs"},{"issue":"3\u20134","key":"pone.0268900.ref015","doi-asserted-by":"crossref","first-page":"339","DOI":"10.1111\/j.1365-2702.2012.04125.x","article-title":"Addressing incontinence for people with dementia living at home: a documentary analysis of local English community nursing service continence policies and clinical guidance","volume":"22","author":"VM Drennan","year":"2013","journal-title":"J Clin Nurs"},{"issue":"13\u201314","key":"pone.0268900.ref016","doi-asserted-by":"crossref","first-page":"1935","DOI":"10.1111\/j.1365-2702.2009.03136.x","article-title":"Actively involving people with dementia in qualitative research","volume":"19","author":"J McKeown","year":"2010","journal-title":"J Clin Nurs"},{"key":"pone.0268900.ref017","first-page":"173","volume-title":"Qualitative data analysis for applied policy research","author":"J Ritchie","year":"1994"},{"key":"pone.0268900.ref018","doi-asserted-by":"crossref","first-page":"117","DOI":"10.1186\/1471-2288-13-117","article-title":"Using the framework method for the analysis of qualitative data in multi-disciplinary health research","volume":"13","author":"NK Gale","year":"2013","journal-title":"BMC Med Res Methodol"},{"issue":"7227","key":"pone.0268900.ref019","doi-asserted-by":"crossref","first-page":"114","DOI":"10.1136\/bmj.320.7227.114","article-title":"Qualitative research in health care. 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