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
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:
Well-contained incontinence, lower negative impact
Well-contained incontinence, higher negative impact
Poorly contained incontinence, higher negative impact
Poorly contained incontinence, lower negative impact
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.
Dementia, Family carers, Incontinence, Independent living, Older people, Qualitative, Toilet-use
Murphy, Catherine
b7f2dd56-3a8a-412a-9f6a-bf468ce7f749
De Laine, Christine
ef803c2f-cd45-4541-a093-5738fd5c19bc
Macaulay, Margaret
505970d3-1e67-4c1f-8291-3a950d336c6b
Avery, Miriam
ad9dda5f-a7da-42dc-8cb7-83a8ca37e6ef
Fader, Mandy
c318f942-2ddb-462a-9183-8b678faf7277
1 January 2022
Murphy, Catherine
b7f2dd56-3a8a-412a-9f6a-bf468ce7f749
De Laine, Christine
ef803c2f-cd45-4541-a093-5738fd5c19bc
Macaulay, Margaret
505970d3-1e67-4c1f-8291-3a950d336c6b
Avery, Miriam
ad9dda5f-a7da-42dc-8cb7-83a8ca37e6ef
Fader, Mandy
c318f942-2ddb-462a-9183-8b678faf7277
Murphy, Catherine, De Laine, Christine, Macaulay, Margaret, Avery, Miriam and Fader, Mandy
(2022)
A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment.
Age and Ageing, 51 (1), [afab221].
(doi:10.1093/ageing/afab221).
Abstract
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:
Well-contained incontinence, lower negative impact
Well-contained incontinence, higher negative impact
Poorly contained incontinence, higher negative impact
Poorly contained incontinence, lower negative impact
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.
Text
A qualitative study and preliminary model of living with dementia and incontinence ...
- Accepted Manuscript
Text
afab221
- Version of Record
More information
Accepted/In Press date: 21 October 2021
e-pub ahead of print date: 13 November 2021
Published date: 1 January 2022
Keywords:
Dementia, Family carers, Incontinence, Independent living, Older people, Qualitative, Toilet-use
Identifiers
Local EPrints ID: 452738
URI: http://eprints.soton.ac.uk/id/eprint/452738
ISSN: 0002-0729
PURE UUID: c485ed05-21a7-40f6-b970-58e304d5c657
Catalogue record
Date deposited: 17 Dec 2021 17:47
Last modified: 05 Jul 2025 04:01
Export record
Altmetrics
Contributors
Author:
Miriam Avery
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
