Hypothesis / aims of study
The aim of this study is to characterise the causes and consequences of toilet-use and incontinence problems faced by people with dementia who live at home and their unpaid carers. This is the first study to characterise the causes and consequences of incontinence problems for people living at home with dementia. Around 50 million people are living with dementia. The majority live in their own homes and are more likely than other people of the same age to experience bladder or bowel incontinence necessitating the use of management and containment strategies, either by the person with dementia or unpaid carers (1). Incontinence has a negative impact on the health and quality of life of both the person with dementia and their carers and can contribute to the breakdown of care (2). However, there are no evidence-based conservative management interventions demonstrated to support the often devastating incontinence needs of this population. The first stage of intervention development is to understand in detail the problem being addressed.
Study design, materials and methods
Using a qualitative design, people with dementia (PWD), unpaid carers and healthcare professionals were interviewed with semi-structured topic schedules guiding conversations on their perceptions of the causes and consequences of toilet-use and incontinence problems for PWD living at home and their unpaid carers. PWD and carer participants were invited via www.joindementiaresearch.nihr.ac.uk, dementia care groups and care teams within two English counties. Healthcare professionals (dementia care and continence care nurses) were recruited via their employers (two NHS Community Trusts and Dementia UK). Recruitment continued until no new major themes arose for two consecutive interviews and the research was deemed to be addressed sufficiently. The interviews were transcribed and framework analysis used to interpret the data based on a priori goals of determining causes and consequences. Data collection took place between January and October 2019.
Results
45 people (27 family carers, 2 people with dementia, 8 continence nurses and 8 dementia nurses) took part. Considerable attempts were made to recruit further PWD without success. This limitation was in part addressed by other participants who recounted relevant conversations with PWD. Two key themes (1. Causes and exacerbating factors and 2. Consequences) and associated sub-themes were identified and are outlined in Table 1. The underlying causes and exacerbating factors of toilet-use and incontinence problems were multifaceted and complex, with six sub-themes identified: Dementia, physical, psychosocial (for either the PWD or the carer), societal, care system and containment product factors all played a role in either causing or exacerbating incontinence problems. Most participants described situations (either their own or other people’s) where there were multiple causes or exacerbating factors combined. For example, a PWD might fail to recognise the signals that their bladder required emptying (dementia factor), this issue could be exacerbated by lack of adequate continence products (care system factor) and family avoidance (societal factor- stigma). Similarly, the consequences of these incontinence problems are numerous, diverse and complex. Context was important to understanding how individuals and dyads were impacted differently, for example, factors such as whether the carer lived with the PWD and the nature of their relationship (e.g. spouse or adult child) influenced how much personal support carers were willing or able to provide.
Interpretation of results
Dementia adds an extra layer of complexity to both the causes and the consequences of incontinence problems. Some of the causes and consequences can be found in the wider population, but many are specific to the dementia population. Multiple factors can come together in varying combinations and in different contexts to generate the unique problems faced by individual PWDs and their carers. Likewise, the same causal factors might lead to different consequences for different individuals. When considering how to tackle these multifaceted problems, it is likely that multi-component interventions, that can be tailored to individual situations will be required. Intervention development should be prioritised by mapping to where they are likely to make the most impact in a wide range of circumstances. We must ask which problems are potentially modifiable, how and under what circumstances?
Concluding message
This study, the first of its kind, provides detailed characterisation of the causes and consequences of incontinence problems for PWD living at home and their carers, identifying multifaceted and complex, layering dementia, physical, psychosocial, societal and care system factors. This new understanding provides the essential basis for the now underway development of urgently needed practical and implementable interventions for this underserved population.