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
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De Laine, Christine R
ef803c2f-cd45-4541-a093-5738fd5c19bc
Macaulay, Margaret
505970d3-1e67-4c1f-8291-3a950d336c6b
Avery, Miriam
ad9dda5f-a7da-42dc-8cb7-83a8ca37e6ef
Fader, Mandy
659b0223-ebb9-4717-9d6d-9ec7b7ad2971
1 January 2022
Murphy, Catherine
b7f2dd56-3a8a-412a-9f6a-bf468ce7f749
De Laine, Christine R
ef803c2f-cd45-4541-a093-5738fd5c19bc
Macaulay, Margaret
505970d3-1e67-4c1f-8291-3a950d336c6b
Avery, Miriam
ad9dda5f-a7da-42dc-8cb7-83a8ca37e6ef
Fader, Mandy
659b0223-ebb9-4717-9d6d-9ec7b7ad2971
Murphy, Catherine, De Laine, Christine R, 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.
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afab221 (1)
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e-pub ahead of print date: 13 November 2021
Published date: 1 January 2022
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© The Author(s) 2021. Published by Oxford University Press on behalf of the British Geriatrics Society.
Keywords:
Dementia, Family carers, Incontinence, Independent living, Older people, Qualitative, Toilet-use
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Local EPrints ID: 468325
URI: http://eprints.soton.ac.uk/id/eprint/468325
ISSN: 0002-0729
PURE UUID: 2e383b21-7cf8-4e76-b1ee-4a715beae9db
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Date deposited: 10 Aug 2022 18:08
Last modified: 17 Mar 2024 03:48
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Author:
Miriam Avery
Author:
Mandy Fader
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