Problems faced by people living at home with dementia and incontinence: causes, consequences and potential solutions

Abstract

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.

A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment

“…A summary of participants including place of carer residence and relationship with the PLWD is given in Table 1 . Full details of the primary analysis on the causes and consequences of and potential solutions for dementia-associated continence problems are provided elsewhere [ 6 ]. Due to the low number of PLWD recruited to the study, the experiences of PLWD included here are largely second-hand, but many carers and HCPs reported the responses of PLWD either verbatim or with substantial knowledge of the person and their opinions.…”

“…These problems come with health, financial and social consequences for both the PLWD and their carers, including influencing residential care home admission [ 3 ]. Despite this, no interventions designed to minimise these problems for people living at home have been found to be effective [ 4 ] and it is acknowledged that these PLWD/carer dyads are poorly supported [ 5 , 6 ]. A number of interventions have been evaluated but have failed to demonstrate an improvement in outcomes; these have predominantly focused on strategies to support toilet-use such as prompted voiding or scheduled toilet-use [ 4 ].…”

“…Lack of efficacy is perhaps not surprising as incontinence problems for PLWD and their carers are complex, comprising dementia, physical, psychosocial, societal and care system factors, with considerable contextual variation (e.g. relationship between PLWD and carer, type of dementia and degree of incontinence) [ 6 ].…”

“…Moreover, it has been hypothesised that the poor containment of incontinence (rather than incontinence itself) is a key factor influencing carer strategies and their decisions regarding care home admission [ 14 ]. The primary analysis [ 6 ] of the data on which this paper is based addressed the causes, consequences of problems associated with dementia and incontinence and listed a number of potential solutions proposed by participants. In this paper, we present the results of a secondary analysis of the data investigating whether attaining well-contained incontinence diminishes the negative impact of living with incontinence for PLWD and their carers (and conversely whether poorly contained incontinence increases the negative impact).…”

Is comprehensive geriatric assessment hospital at home a cost-effective alternative to hospital admission for older people?

“…This might reflect the challenge in realigning healthcare for people with two or more long-term health conditions who experience a decline in functional and cognitive capacity, and require integrated care across health and social care sectors [ 32–34 ]. Providing adequate support to informal carers, who inevitably become involved in the delivery of healthcare in the home, is crucial to prevent burdening older people and their support networks [ 35 , 36 ].…”