A qualitative study of continence service provision for people living with dementia at home in the UK: Still inadequate?

INTRODUCTION: Incontinence is a major problem for people with dementia (PWD) and their family/friend caregivers, often causing substantial harm, including residential care admission. The incontinence needs of PWD are complex and different from those of people without dementia. The aim of this study was to investigate carer and nurse perceptions of continence service provision and potential improvements. METHODS: A secondary analysis of qualitative data was undertaken. Semi-structured interviews (n = 45) were undertaken with PWD, family caregivers and healthcare professionals (continence or dementia nurses) in the UK. PWD and caregivers were recruited via www.joindementiaresearch.nihr.ac.uk and via dementia/carer groups. Nurses were recruited via their employers. Framework analysis was used. The COREQ Research guideline statement assists reporting. RESULTS: Four themes were found. Firstly, there was a lack of awareness of the service and waiting time. Many caregivers were unaware of continence services and dementia nurses often viewed it as a pad provision service. Caregivers reported long waits not meeting their urgent needs. Secondly, product provision was often inadequate. Most caregivers self-purchased all or many products and substantial variation in product provision was found. The number of products provided was often inadequate. Thirdly, a sense that "nothing can be done" was observed by some nurses and caregivers. Caregivers believed that, if nothing else, care information should be provided. Finally, suggestions for improvements were made, including proactive service signposting, joint clinics with dementia services, improved information before crisis point, dementia training for continence nurses and improved product provision. CONCLUSION: Continence service inadequacies for PWD and caregivers have been reported for many years. This study demonstrates service provision remains unsatisfactory in the UK. Stakeholders propose a range of service improvements. It highlights that listening to the voices of PWD, caregivers and nurses is crucial for services seeking to improve continence services for PWD living at home.

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. 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.

Problems faced by 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 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.

Development and randomised controlled trial of a Continence Product Patient Decision Aid for men postradical prostatectomy.

AIMS AND OBJECTIVES: To develop and evaluate an evidence-based Continence Product Patient Decision Aid (CP-PDA) to reduce decisional conflict and support continence product choice for men postradical prostatectomy. BACKGROUND: In 2018, 1.3 million men globally were diagnosed with prostate cancer. A common treatment is radical prostatectomy, usually leading to sudden onset of urinary incontinence. For people experiencing incontinence, products to contain leakage are fundamental to health-related quality of life, but many product users and healthcare professionals are unaware of available options. No evidence-based guidance on choosing products exists despite known physical and psychological burdens of poorly managed leakage (e.g. isolation, anxiety, depression, skin damage). DESIGN AND METHODS: 4 phases, underpinned by international decision aid guidance. Evidence/expert opinion: Literature review; consultation with specialist continence clinicians (n = 7) to establish evidence base. Prototype: CP-PDA developed with continence specialist (n = 7) feedback. Alpha testing (stakeholders): CP-PDA materials were provided to expert patients (n = 10) and clinicians (n = 11) to assess content/presentation. Beta testing (field) following CONSORT guidelines, registered NIHR CPMS 31077: Men (n = 50) postradical prostatectomy randomised to evaluate usability and decision-making using the Decisional Conflict Scale compared with usual care. RESULTS: An algorithm differentiating patients by mobility, dependency, cognitive impairment and type/level of leakage, leading to 12 user groups, was developed. For each group, an option table and associated product information sheets guide product choice. Total Decisional Conflict Score for men using the CP-PDA was significantly better than for men without. CP-PDA users reported greater confidence in product knowledge and choice. CONCLUSION: This is the first evidence-based CP-PDA, developed using an internationally recognised method. Compared to usual care, it significantly reduced decisional conflict for men choosing continence products postprostatectomy. RELEVANCE TO CLINICAL PRACTICE: The CP-PDA provides nurses with the first comprehensive, evidence-based intervention to help postprostatectomy men in complex continence product choices. An online version is available: www.continenceproductadvisor.org.

Continence care and policy initiatives.

Nurses are key professionals in the provision of continence care. The authors examine the implications of recent policy initiatives on the provision of continence care to older people, both in general terms and focusing on the issue of abuse.