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Incontinence is one of the most common health complaints among people living with dementia, affecting around one third of sufferers. It is also one of the most stigmatised of all health ailments, generally, meaning conversations around the subject are often avoided.
Professor Joan Ostaszkiewicz, a research director and former district nurse, believes the hushed nature of the condition affects the quality of support provided to people living with dementia, as well as the working conditions of carers.
She says there are effective, evidence-based strategies that can delay the onset of incontinence and improve quality of life for people who experience it. She is calling for greater awareness of the issue.
“Incontinence is poorly recognised in the dementia world, in part due to the feelings of shame it engenders,” Prof Ostaszkiewicz said, ahead of the National Dementia Conference, hosted by Informa Connect.
“From early childhood we learn to associate continence with competence, meaning people typically feel a sense of shame when their mind or body does not work the way they want it to. In turn, this can cause people with incontinence – and their carers – to conceal the condition in the best way they can.”
The lack of information around incontinence in dementia can mean carers are unprepared for the physical and psychological issues that might arise. They may also lack skills on how to protect a person’s dignity whilst providing intimate care, Prof Ostaszkiewicz highlights.
“Research shows that not all techniques that carers use when managing incontinence are understood by people with dementia. If the person doesn’t understand or accept those techniques, they can understandably become frustrated and refuse help to go the toilet, to change a wet pad, or to be washed.”
Prof Ostaszkiewicz says it is important carers understand the reasons for these behaviours and use personalised strategies to reduce any trauma associated with toileting.
Together with colleagues and partners at Deakin Future Learning, she recently acquired funding from the Dementia Centre for Research Collaboration and established a project advisory group to devise some incontinence strategies. To inform these, people with dementia, their family and carers, and aged care employees, each shared their experiences, over the span of two years.
Among the takeaways, trust-building was one of the most important prerequisites for helping someone manage incontinence, Prof Ostaszkiewicz said.
“It’s essential for people living with dementia to trust the people who care for them. If they are receiving this highly intimate form of care from someone they don’t trust, they can feel violated,” she said.
To foster trust, the carer needs to get to know the service user the best way then can and tailor their approach to minimising embarrassment. Equally, they need to develop strategies for managing their own emotions and frustrations.
“You need to know the person and what is acceptable to them. For some people, humour might be useful, for others not so much. You also need to project a sense of ‘calm competence’ when managing the condition.”
To minimise psychological trauma, the caregiving encounter will also need to feel as safe as possible. Here, communication strategies are key, she added.
“Clearly warmth and kindness in your voice goes a long way for anyone, but you might also wish to adapt your style to the personality of your client.”
Simple choices, such as ‘would you like to go to the toilet now?’ should be offered whenever possible, with long or convoluted language avoided.
“I recommend using simple language with minimal wording. Dementia can affect information processing, so if you use too many words or ask too many questions, it can cause frustration.”
Lastly, carers must also be flexible when managing incontinence in dementia, and always anticipate changes in the person’s abilities.
“Carers told us that ‘capabilities that weren’t present yesterday, could reappear today’, so carers need to respond to the evolving needs of their clients,” Prof Ostaszkiewicz said.
Professor Joan Ostaszkiewicz is Director of the Aged Care Research Program at the National Ageing Research Institute Joan is a Principal Research Fellow and Director of the Aged Care Division at the National Ageing Research Institute.
She is also an Adjunct Professor, Health at the Innovation Transformation Centre, Federation University, and Honorary Associate Professor, at the Faculty of Medicine, Dentistry and Health Sciences at the University of Melbourne.
She is due to present at the National Dementia Conference, where she will share more details of her research and further strategies for managing incontinence in dementia.
Learn more and register your place here.
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