To investigate differences in how well-contained or poorly contained incontinence impacts on the experience of living with incontinence for people living with dementia at home and their carers.

Most of the 50 million people living with dementia globally will develop toilet-use and/or incontinence problems during their disease trajectory.  They are at considerably higher risk of incontinence than those of the same age without dementia [1]. Due to the lack of effective treatment, well-contained incontinence is often the main goal. It has been hypothesised that poor containment (rather than the incontinence itself) has a substantial impact on poor outcomes, including residential care home admission [2].  We report on whether achieving well-contained incontinence lessens the impact of living with incontinence for people with dementia living at home and their family carers.

Secondary analysis of a qualitative dataset was undertaken to address the specific research question. The primary research [3] took place in the UK. Semi-structured interviews were undertaken with people living with dementia, carers and healthcare professionals (continence or dementia nurses).  People living with dementia and carers were recruited via www.joindementiaresearch.nihr.ac.uk and via dementia/carer groups. Nurses were recruited via their employers (two National Health Service community trusts and Dementia UK).  Interviews were recorded and transcribed verbatim. Framework approach to analysis was used to identify themes based on the level of containment achieved and the impact that incontinence had on the lives of people living with dementia and their carers.

45 people (26 carers, two people with dementia, nine continence nurses and eight dementia nurses) participated. A low number of people with dementia were recruited to the study, however carers and nurses reported the experiences of people with dementia either verbatim or with in-depth knowledge of the person and their opinions. All person with dementia or carer participants described experiences of using disposable absorbent products to contain incontinence, with or without toilet-use.

Despite poorly contained incontinence, some dementia/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 (Figure 1):

1.	Well-contained incontinence, lower negative impact
•	Leakage usually contained
•	Person with dementia and carer adjusted well
•	Non-problematic communication
•	Incontinence management tasks not causing significant stress or workload

2.	Well-contained incontinence, higher negative impact
•	Leakage usually well-contained, but with high workload
•	Person with dementia has incontinence associated behaviours that challenge (e.g. repetitive habits or resistance to care)
•	Carer incontinence management strategies might be distressing for person with dementia or the carer
•	Emotional distress (e.g. disgust or shame) and/or anticipatory fear for either or both person with dementia and/or carer

3.	Poorly contained incontinence, higher negative impact
•	Frequent ‘out of place’ urine or faeces, with higher workload often including night.
•	Incontinence or management strategies distressing for either/both person with dementia or carer
•	Potentially harmful care strategies (e.g. coercion) and/or behaviours that challenge

4.	Poorly contained incontinence, lower negative impact
•	Frequent ‘out of place’ urine or faeces, but workload manageable
•	Person with dementia might lack insight into their incontinence and therefore experience less associated distress
•	Carer less stressed by ‘accidents’ and plan ahead to cope
•	Good incontinence related communication with wider social connections

Containment is not the only factor influencing the degree of negative impact on people with dementia and their family carers. Well-contained incontinence can still be a considerable problem for one or both members of the care dyad. Variation in incontinence related negative impact (with similar levels of incontinence) appeared to be associated with a number of factors including the degree of disgust and/or shame felt by members of the dyad, carer coping strategies and presence or absence of incontinence associated challenging behaviours.

The preliminary model proposed in this abstract helps to explain that, in addition to supporting person with dementia and carer dyads to effectively contain incontinence, there are a range of varying issues that must be addressed.

Reliable containment is an important goal for people living at home with dementia and incontinence; but it is not the only goal. Other factors, such as behaviours that challenge, emotional response or carer coping strategies, can mean that even well-contained incontinence can have a negative impact. This paper proposes a preliminary model which requires further evaluation to determine its potential for development into a tool that supports clinicians to assess the needs of people living with dementia and incontinence at home.

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Drennan V, Cole L, Iliffe S. A taboo within a stigma? a qualitative study of managing incontinence with people with dementia living at home. BMC Geriatr2011; 11: 75.
Murphy C, De Laine C, Macaulay M, Hislop Lennie K, Fader M. Problems faced by people living at home with dementia and incontinence: causes, consequences and potential solutions. Age Ageing2020; Epub ahead of print. PMID: 33320926