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 healthcare professionals (HCPs). 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 HCPs (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 in total, 45 people (26 unpaid carers, 2 people with dementia, 9 continence and 8 dementia HCPs) 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.

No 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: 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.

This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY

Background People with dementia are more likely than other people of the same age to experience bladder or bowel incontinence. This can be distressing and difficult to manage for both the person with dementia and family carers, potentially contributing to the breakdown of care at home. The aim of this work was to understand the range of problems that people face and their opinions on what could be done to better manage these problems and enable people to get on with their daily lives. Methods Using a semi‐structured topic guide, participants were interviewed about their experiences and views on the problems associated with living at home with both dementia and incontinence and the support that people would like to receive. People with dementia and family carers were invited via www.joindementiaresearch.nihr.ac.uk, dementia cafes and their nurses (dementia or continence specialists). Healthcare professionals (dementia care and continence care specialists) were invited via their employer. The interviews were transcribed and constant comparison techniques were used to interpret the data. Results 45 people (27 family carers, 2 people with dementia and 16 healthcare professionals) took part. Many carers found coping with incontinence to be the most challenging part of their caring experience. They reported feeling unsupported, lacking information and expert advice, plus continence management product provision was often found to be inadequate. Dementia nurses reported little knowledge of continence care and continence nurses had not received any dementia specific training. When continence problems develop, carers generally rely on continence information from peers or product manufacturers. Many said they had initially viewed incontinence problems as a “red line” beyond which they would no longer be able to provide care. For some, this was the case, but others adapted to providing continence support. Many carers reported a distressing period of trial and error when learning how to manage with new onset continence issues. Conclusion Far more could be done to help support people to live well with the combination of dementia and incontinence. Currently there is little or no support or expertise available. There were two urgent priorities: Better information/advice and appropriate product provision.