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Incontinence: the taboo hurting the dignity and health of millions

Published on 22 August 2018 12:50 PM

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Leading charities warn incontinence is one of the biggest issues for countless people with serious health conditions who they support – but taboo around the topic forces those affected to struggle in silence.

Leading charities warn incontinence is one of the biggest issues for countless people with serious health conditions who they support – but taboo around the topic forces those affected to struggle in silence.

Ten organisations including Alzheimer’s Society, Age UK, Marie Curie and Parkinson’s UK held a workshop to discuss common problems and potential solutions with patients, carers, researchers and health and social care professionals. The resulting report recommends tackling the stigma and funding research into this important but often ignored issue.

Published today (Wednesday 22 August), the report details the daily 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 are calling 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 findings

Find out more by downloading the report.

-- Ends --

Notes to editors

[1] Online survey conducted by Opinium on behalf of Age UK between 14th and 18th January 2022. Sample of 1,280 UK residents (65++), weighted to be nationally representative of the 65+ age group.

[1] Online survey conducted by Opinium on behalf of Age UK between 3rd and 8th December 2021. Sample of 2,000 UK adults (18+), weighted to be nationally representative of the 65+ age group.

[1] Online survey conducted by Opinium on behalf of Age UK between 14th and 18th January 2022. Sample of 1,280 UK residents (65++), weighted to be nationally representative of the 65+ age group.

[1] 82 per cent of the 12,508,638 older people in the UK = 10,257,083 people

[1] https://campaigns.ageuk.org.uk/page/96920/petition/1?ea.tracking.id=Website

[1] As reported in the Financial Times, Monday 17th January 2022: https://www.ft.com/content/d246f8b4-80ef-498f-b9f1-7779acc5efd7

[1] On Monday 10th January 2022, the Charity wrote to the Secretaries of State for Business, Energy and Industrial Strategy (Rt Hon Kwasi Kwarteng MP) and for Work and Pensions (Rt Hon Thérèse Coffey MP), calling for immediate action to protect vulnerable older people from the cold this winter. This was the second letter from the Charity in as many months urging Ministers to take decisive action on energy bills to mitigate the potentially devastating impact of the escalating crisis, which will be nothing short of catastrophic for many older people without intervention. In addition, the letter underlined the need for longer-term thinking about how older people with the least ability to pay can be protected from energy price rises in the future. The letter was sent by email.

[1] DWP, 2020. Income-related benefits: estimates of take-up: financial year 2018 to 2019 (Table PC1). Department for Work and Pensions. [Online]. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/929669/pension-credit-tables-2018-2019.ods. Accessed 19/01/2022 

For more information

Contact the Age UK Media team on 020 3033 1430 (out of hours: 07071 243 243).

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Last updated: Jan 21 2022

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