The University of Southampton
University of Southampton Institutional Repository

Problems facing people living at home with dementia and incontinence: causes, consequences and potential solutions

Problems facing people living at home with dementia and incontinence: causes, consequences and potential solutions
Problems facing people living at home with dementia and incontinence: causes, consequences and potential solutions
Background: many people living at home with dementia (PLWD) also have poorly managed toilet-use or incontinence problems with damaging consequences for both people with dementia, unpaid carers and health care professionals. Currently, there are no theoretically or empirically based interventions to help. The underlying causes and subsequent consequences of these problems need to be fully understood in order to support the development of interventions that have the potential to decrease the impact of these problems on people’s lives.

Aim: to establish the range of causes, consequences and potential solutions of toilet-use and incontinence problems for PLWD and their carers.

Method: a qualitative design was used. 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 digitally recorded and transcribed verbatim. Framework analysis was used to interpret the data to address the goal of the research.

Results: 45 people (26 unpaid carers, 2 people with dementia, 9 continence and 8 dementia healthcare professionals) took part. The causes of toilet-use and incontinence problems were reported to be multi-faceted and complex including those related to dementia (e.g. lack of insight into toileting needs or how to use the toilet), those which are physical (e.g. existing bladder or bowel issues or poor mobility), psychosocial (e.g. inability to ask for help for incontinence) or societal (e.g. fear of stigma), or related to care systems (e.g. lack of expert knowledge) or products (e.g. poor fit or confusing for users). Consequences included harms to physical and mental health, social isolation, increased carer workload and care system resource implications.

Conclusion: this study provides the first detailed characterisation of the causes and consequences of and potential solutions for incontinence problems for PLWD at home and their carers. Multifaceted and complex problems were identified, layering dementia, physical, psychosocial, societal and care system factors and highlighting contextual variation. This new knowledge provides the essential basis for the (now underway) development of urgently needed practical and implementable interventions for this underserved population.
0002-0729
Murphy, Catherine
b7f2dd56-3a8a-412a-9f6a-bf468ce7f749
De Laine, Christine
ef803c2f-cd45-4541-a093-5738fd5c19bc
Macaulay, Margaret
505970d3-1e67-4c1f-8291-3a950d336c6b
Hislop Lennie, Kelly
4489bd0e-403e-4636-baf9-606762504ce4
Fader, Miranda
c318f942-2ddb-462a-9183-8b678faf7277
Murphy, Catherine
b7f2dd56-3a8a-412a-9f6a-bf468ce7f749
De Laine, Christine
ef803c2f-cd45-4541-a093-5738fd5c19bc
Macaulay, Margaret
505970d3-1e67-4c1f-8291-3a950d336c6b
Hislop Lennie, Kelly
4489bd0e-403e-4636-baf9-606762504ce4
Fader, Miranda
c318f942-2ddb-462a-9183-8b678faf7277

Murphy, Catherine, De Laine, Christine, Macaulay, Margaret, Hislop Lennie, Kelly and Fader, Miranda (2020) Problems facing people living at home with dementia and incontinence: causes, consequences and potential solutions. Age and Ageing, [afaa262]. (doi:10.1093/ageing/afaa262).

Record type: Article

Abstract

Background: many people living at home with dementia (PLWD) also have poorly managed toilet-use or incontinence problems with damaging consequences for both people with dementia, unpaid carers and health care professionals. Currently, there are no theoretically or empirically based interventions to help. The underlying causes and subsequent consequences of these problems need to be fully understood in order to support the development of interventions that have the potential to decrease the impact of these problems on people’s lives.

Aim: to establish the range of causes, consequences and potential solutions of toilet-use and incontinence problems for PLWD and their carers.

Method: a qualitative design was used. 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 digitally recorded and transcribed verbatim. Framework analysis was used to interpret the data to address the goal of the research.

Results: 45 people (26 unpaid carers, 2 people with dementia, 9 continence and 8 dementia healthcare professionals) took part. The causes of toilet-use and incontinence problems were reported to be multi-faceted and complex including those related to dementia (e.g. lack of insight into toileting needs or how to use the toilet), those which are physical (e.g. existing bladder or bowel issues or poor mobility), psychosocial (e.g. inability to ask for help for incontinence) or societal (e.g. fear of stigma), or related to care systems (e.g. lack of expert knowledge) or products (e.g. poor fit or confusing for users). Consequences included harms to physical and mental health, social isolation, increased carer workload and care system resource implications.

Conclusion: this study provides the first detailed characterisation of the causes and consequences of and potential solutions for incontinence problems for PLWD at home and their carers. Multifaceted and complex problems were identified, layering dementia, physical, psychosocial, societal and care system factors and highlighting contextual variation. This new knowledge provides the essential basis for the (now underway) development of urgently needed practical and implementable interventions for this underserved population.

Text
Problems facing people living at home with dementia and incontinence Causes, Consequences and Potential Solutions - Accepted Manuscript
Restricted to Repository staff only until 16 December 2021.
Request a copy

More information

Accepted/In Press date: 9 November 2020
e-pub ahead of print date: 16 December 2020

Identifiers

Local EPrints ID: 445177
URI: http://eprints.soton.ac.uk/id/eprint/445177
ISSN: 0002-0729
PURE UUID: bc91eecb-fdce-432e-8b3b-95ec2fbd4a93
ORCID for Margaret Macaulay: ORCID iD orcid.org/0000-0003-1737-4589
ORCID for Kelly Hislop Lennie: ORCID iD orcid.org/0000-0001-8242-8665

Catalogue record

Date deposited: 24 Nov 2020 17:33
Last modified: 20 Feb 2021 02:52

Export record

Altmetrics

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×