The 10 charities, including Alzheimer’s Society, Age UK, Marie Curie, warned that the taboo around the topic forces those affected to struggle in silence and more research is needed.
“We need to tackle the stigma, and this report is a vital step towards that”
Doug Brown
As a result, the organisations held a workshop where common problems and solutions for incontinence issues were discussed by patients, carers, researchers and clinicians.
Others involved include Parkinson’s UK, Guts UK, the Urology Foundation, Devices for Dignity, the National Institute for Health Research, and the James Lind Alliance.
A report based on the meeting – titled My bladder and bowel own my life and published today – recommends tackling the stigma and funding research into the issue.
The report calls for more economic research to examine the cost of continence problems from the perspective of patients, carers, health and social care providers and the NHS. It also recommends that relevant funding bodies should respond to the need for research regarding incontinence issues.
“We’re delighted to be part of this unique and important collaboration between different organisations”
Sabine Best
In particular, the report backs the prioritisation of non-drug and non-surgical interventions, which in turn promote self-management of continence issues, it said.
The charities said they believed their workshop demonstrated there were people willing to share their experiences and help to shape research, despite sensitivity around the topic.
The report also details the daily impact of incontinence on older people across the UK, especially those living with terminal illnesses or long-term health conditions like dementia.
Its authors are calling for evaluation of the economic impact of incontinence, more dedicated services to support patients and better training for health and care professionals.
Dr Doug Brown, chief research and policy officer at Alzheimer’s Society, described the report as a “vital step” in helping to tackle the stigma against incontinence problems. He 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,” he noted.
“As well as practical solutions, we need to tackle the stigma, and this report is a vital step towards that,” added Dr Brown.
“It is very encouraging to note this detailed report on bowel and bladder function with specific insights”
Ramesh Arasaradnam
Dr Sabine Best, head of research at Marie Curie, highlighted that incontinence problems could 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,” she said.
“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,” said Dr Best.
She added: “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.”
Professor Ramesh Arasaradnam from the 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,” he said. “Further research, taking recommendations from public and patient representatives, is vital to improve the lives of those with incontinence.”