Each September people from across the world unite to raise awareness and challenge the stigma that persists around Alzheimer's disease and other forms of dementia. So, this feels like a very apt opportunity to shine a light on some of the issues relating to continence and dementia.

Throughout my career I have been very aware of the negative impact incontinence has on people with dementia and their family carers, and as such have worked tirelessly with those affected to develop strategies which might improve their ability to remain continent but recognised that that there was minimal evidence available to inform practice.

A lack of evidence-based strategies and guidance does nothing to challenge the misconception that nothing can be done if a person with dementia experiences episodes of incontinence of urine, faeces or both. Whilst there is still much to be done, I challenge the position that there is nothing that can be changed as improving the identification, assessment and management of continence issues for people with dementia can not only enable people with dementia to maintain their dignity and improve their health, but it can also improve their sense of wellbeing and quality of life. Furthermore, there is the possibility to improve relationships and reduce carer burden thus reducing the risk of premature transitions into residential care (Aldridge and Harrison Dening, 2021), all too often I have seen family carers reaching breaking point as a result of feeling unable to manage incontinence in the family home which has often not been acknowledged until they have reached crisis point .

People with dementia often feel stigmatised by their dementia diagnosis and it is likely that there is an underreporting of issues relating to incontinence due to fears of further stigmatisation. Yet evidence suggests that people living with dementia are three times more likely to experience urinary incontinence and four times more likely to experience faecal incontinence compared to those of a similar age without dementia, so we need to be more proactive in asking about incontinence when engaging with people with dementia.
 

Given my interest in this area of practice I was delighted to have been invited to join the steering group for the National Institute for Health and Care Research (NIHR) themed review Continence, dementia and care that improves dignity (NIHR, 2022), although saddened that societally we have not done more to address the challenges faced by those affected before now. The review concurred that many people living with dementia whether it be at home, in hospital or in care homes do not receive adequate continence care. The review went on to highlight that there is a need to improve assessments for people with dementia and improve the support offered to those caring for them. To achieve this there is a need to improve the confidence and competence of professionals through training, but also further research is needed to offer more evidence based interventions and strategies. A further study by Professor Katie Featherstone and colleagues (2022) identified ‘pad cultures’ in hospital whereby routinely people with dementia were given incontinence pads whether they were incontinent or not highlighting further evidence of a need for urgent change.

I urge you all to read the NIHR review and the findings of Professor Featherstone et al (2022), and I would like to seize this opportunity to deliver a call to arms for all of you who are working and interested in the field. It is time to galvanise the evidence we do have, to start making some positive changes that can be a catalyst to improve the outcomes and the quality of life for those affected. Given that it is estimated that there are around 900,000 people living with dementia in the UK, a number expected to increase significantly in coming years, there is much to be done. We need to turn the tide, and you can all play your part in doing just that. Trust me, even the smallest change can really make a significant difference.
 

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References:

Aldridge Z, Harrison Dening K (2021) Dementia and continence issues. J Community Nurs 35(5): 58-62

Featherstone K, Northcott A, Boddington P, et al (2022) Understanding approaches to continence care for people living with dementia in acute hospital settings: an ethnographic study. Health Soc Care Deliv Res 10(14). Available online: https://www.journalslibrary.nihr.ac.uk/hsdr/QUVV2680/#/abstract

NIHR (2022) Continence, dementia, and care that preserves dignity. Available online: https://evidence.nihr.ac.uk/themedreview/continence-dementia-and-care-that-preserves-dignity/