The DINAH study – helping remove the stigma from dementia and incontinence

We interviewed Dr Cathy Murphy, a Senior Research Fellow in Bladder and Bowel Management at the University of Southampton, about the Wessex-led DINAH study, which is investigating bladder and bowel related issues for people with dementia, their carers and families. 

"Around 10 years ago there was a seminal paper on the taboo and stigma associated with incontinence that is experienced by dementia patients but there have been few interventions. We know that incontinence is a problem for many people with dementia, but we are still in the early stages of helping people to self-manage the condition successfully.

"It’s an issue that is incredibly important to address because it can have a big impact on the lives of people with dementia themselves and their carers; whether they are family members or external care providers. It can lead to increasing social isolation, because of the restrictive nature of incontinence and the anxiety it causes, but can also result in premature admittance into a care setting because carers feel they cannot cope.

"The DINAH study is an incredibly important piece of research because enabling a greater level of self-management can result in a greater quality of life for dementia patients with incontinence and can help to keep them at home for longer.

"We began the study back in 2018, funded by an Alzheimer’s Society Fellowship, and we split the study into two research areas; conducting interviews with 45 patients and then conducting an online survey for 113 carers which was set up through the Join Dementia Research website.

"Join Dementia Research is a service developed by the National Institute for Health Research (NIHR) in partnership with Alzheimer Scotland, Alzheimer's Research UK and Alzheimer's Society, which allows people to register their interest in participating in dementia research.

"We recruited up until February 2021 but, thankfully, our research wasn’t impacted by COVID-19 as all of our surveys were done online. This has probably helped the DINAH study to become the top recruiting study within Dementias and Neurodegenerative Diseases Research Network (DeNDRoN).

"We needed qualitative data that could directly address the problems people face when dealing with incontinence and dementia. For some it is the embarrassment and shame of what is happening to them, for others that is experienced on the carer’s side – completely changing a relationship dynamic, whether that is parent and child or a partner.

"Asking about the problems they face and what would have been helpful for them to manage the condition more successfully, has been a really important first step to devising an intervention. For some, they needed more advice on the products available to them. For others, it can be emotional support to help deal with the feelings around incontinence. There is an enormous amount of shame and embarrassment associated with incontinence.

"Incontinence is a hidden aspect of dementia and the issues are complex and varied, differing hugely on a case-by-case basis which makes the challenges greater. There is also currently no joined-up approach to services – dementia and continence problems are treated separately, which can make managing them together overwhelming for many carers.

"At the moment, we are devising a handbook based on our research findings that we hope will provide carers with help and reassurance. We can signpost people towards relevant resources (like the Continence Product Advisor website) and services that will make a positive impact. But even this presents a challenge in itself.

"So often, when people are diagnosed with an illness, they are bombarded with information at the point of diagnosis. For us, there is another challenge to ensure that we deliver the handbook to the right person at the right time – without leaving it too late or delivering it too early.

"We also plan to deliver the handbook to primary care health professionals as a resource, which will hopefully begin conversations around the issues earlier so that it doesn’t become a bigger problem further down the line within a person’s care plan.

"Issues like incontinence and dementia are multi-disciplinary and the DINAH study has an advisory group with nurses, the Alzheimer’s Society, Dementia UK, local clinicians, Bladder & Bowel Group representatives, engineers and microbiologists all providing insight. Having such a large network of advisors is essential because incontinence changes as dementia progresses – what works for a while will then change and something different will be needed. People are constantly required to reflect on the challenges they face and the potential solutions available.

"I’m hopeful that the resource will be available to carers in summer 2022 and in the meantime we are applying for funding to conduct a study that evaluates what assistive technology could be helpful to patients with dementia and incontinence. This could be digital technology products that give reminders about going to the loo, toilet adaptions and continence products – it’s another essential arm of this research to help us provide people, and their carers, with a better quality of life."