Incontinence: the taboo hurting the dignity and health of millions

Date: 07 September 2018

Patients, carers and clinicians have highlighted continence issues as being important across James Lind Alliance Priority Setting Partnerships (PSPs) in Parkinson’s, Palliative and end of life care, Inflammatory Bowel Disease, Dementia and MS.

These PSPs worked with other organisations, including Age UK and The Urology Foundation, to set up a workshop to discuss common problems and potential solutions with patients, carers, research and health and social care professionals.

The report from that workshop warns that incontinence is one of the biggest issues for countless people with serious health conditions – but taboo around the topic forces those affected to struggle in silence. It recommends tackling the stigma and funding research into this important but often ignored issue.

Published in August 2018, the report talks about the impact of incontinence on older people and people living with long-term health conditions and terminal illnesses like dementia, Parkinson’s disease, cancer, urinary and gastric issues. Shelagh Robinson, who is living with dementia and affected by incontinence, explained: “People are unwilling to talk about this, but until we do it is going to restrict what we can do.”

The report authors call for evaluation of the economic impact of incontinence, more dedicated services to support people affected, better training for health and care professionals, and investment in research with a focus on non-drug and non-surgical interventions that allow people affected to take control of their own needs.

Dr Doug Brown, Chief Research and Policy Officer at Alzheimer’s Society, said: “People with dementia are 50% more likely than other people their age to be incontinent. As dementia progresses, people can forget where the toilet is or when they last went, and eventually stop recognising the need to go at all – so it’s a vital concern for the 850,000 people currently living with dementia across the UK.

“Alzheimer’s Society is funding research to help people with dementia and their carers to find better incontinence products that meet their needs, but as well as practical solutions we need to tackle the stigma, and this report is a vital step towards that.”

Dr Sabine Best, Head of Research at Marie Curie, explained: “Incontinence can have a profound impact on a person’s quality of life. For those receiving palliative care, incontinence can cause undue stress to both patients and those caring for them. It is important that more research involving people affected by incontinence is funded, leading to improved treatments and care as well as better ways for people to self-manage this distressing symptom.

“We’re delighted to be part of this unique and important collaboration between different organisations, including research funders, who have recognised a need and are working towards addressing it. Controlling symptoms is hugely important for people with advanced illnesses such as terminal cancer, dementia or Parkinson’s, and is a key priority for palliative and end of life care. Joined up working of research funders is essential to making a difference.”

Claire Bale, Head of Research Communications and Engagement at Parkinson’s UK, said: “We know incontinence can be incredibly debilitating for people with Parkinson’s. It’s a complex condition with more than 40 symptoms, and yet people living with the condition have told us that urinary problems are one of their top ten research priorities for improving quality of life.

“Through further research into new treatments, but also by removing the stigma around incontinence, we can help people take control and overcome the challenges that incontinence can present on a daily basis.”

Lesley Carter, Clinical Lead at Age UK, warned: “Incontinence can have a big impact on an older person’s quality of life, their wellbeing and independence. Too often, people are left to manage alone because they feel too embarrassed to seek help, or when they do, adequate support is not available.

“We urgently need to break the taboo around incontinence, and invest in dedicated services and training for staff to support people to manage incontinence effectively and remain independent. As our population ages, more and more people will be likely to experience incontinence and as a society, we must act now to end the stigma.”

Professor Ramesh Arasaradnam, Deputy Lead CRN Gastroenterology (Midlands) at British Society of Gastroenterology, added: “It is very encouraging to note this detailed report on bowel and bladder function with specific insights from patients and health care professionals. This affects a large population including those with less known yet common conditions such as bile acid diarrhoea. Further research, taking recommendations from public and patient representatives, is vital to improve the lives of those with incontinence.”

Read the report.



  • Summary:
    Patients, carers and clinicians have highlighted continence issues as being important across James Lind Alliance Priority Setting Partnerships (PSPs) in Parkinson’s, Palliative and end of life care, Inflammatory Bowel Disease, Dementia and MS.
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