Wouldn’t it be great if the stigma surrounding incontinence was shaken a little? We are seeing this in mental health with people beginning to discuss their experiences just as they might talk about a physical issue such as a broken leg or a cancer. Continence issues have a way to go before people are more open about the impacts and seeking help.
Age UK and The Urology Foundation have come together to get a better understanding and awareness of attitudes to urinary incontinence. We wanted to understand how to best communicate and support people with urinary incontinence and their carers.
Urinary incontinence is a health condition that is prevalent among the whole population. It is more likely to affect older people, but younger people can also suffer. Although it is not a life threatening condition in itself, urinary incontinence can be directly linked to more serious outcomes. For example, we know urinary incontinence contributes to a loss of independence, a reluctance to go out, loneliness and depression, an increased risk of falls and a higher risk of infection.
NHS and social care spending on urinary incontinence and the issues and conditions arising and linked to it is enormous, yet surprisingly amongst the general public and healthcare professionals, knowledge and awareness of the condition remains limited. A real taboo subject.
Recent work undertaken has confirmed what we have suspected for a while – that urinary incontinence and how to form health messages that feel relevant is not an easy task. In part, this is because of the indistinct beginning of some people’s problems – a one-off leak becomes a regular leak, which might develop into incontinence.
People who aren’t incontinent think it will never happen to them, and if it does it will down to old age and bad luck. What is interesting is how people seem to put their heads down and cope with their symptoms, all of the people involved in a small piece of research had been resourceful and self-managed their incontinence.
TUF and Age UK decided to look more closely at this subject because we know that incontinence affects so many older people – at least a fifth of those over 85 according to one cohort study, although it is thought this is an underestimation. It is also understood that this is a condition that can carry stigma and is not something that is easily discussed. We wanted to know what messages would help older people and their carers have a better understanding about what incontinence was, how it could be addressed and how to introduce the subject without causing embarrassment.
Britain Thinks was commissioned to undertake some qualitative research amongst older people (sufferers and non-sufferers), informal carers and healthcare assistants. The research carried out was conducted in 2016. We talked to healthcare assistants working in residential care homes, informal carers for people who were incontinent, older people who had experienced incontinence and older people who hadn’t experienced incontinence.
One of the recurrent themes among three of our groups (older people who have experienced incontinence, carers and HCAs) is that there was a lack of understanding of the treatment options available. All had heard of or used absorbent pads and some were aware that wider health has a bearing on incontinence (such as being overweight, drinking excessive alcohol and eating a healthy diet). But wider knowledge about interventions like physiotherapy to strengthen the pelvic floor muscles, medication or even surgery was not widespread.
This is important because it is another common misconception that self-managing incontinence without embarrassment is the best people can hope for. People who were interviewed thought that incontinence was a common problem for the opposite sex, i.e. men thought more common in women and vice versa, this may be because there is not much discussion about this between the sexes.
Another interesting theme was that carers of incontinent older people were very pragmatic, non-squeamish and open about how they handled caring in these circumstances. All of them had sought help from a GP and used absorbent pads. They were, however, in real need of some more information about how to manage better. For some, the onset of incontinence was the tipping point between ‘just about managing’ and ‘not coping’. More serious options were being considered, such as catheterisation or even a move into a care home. And there were serious emotional and psychological impacts on the carer’s state of wellbeing because caring can be overwhelming and stressful, allowing little time away from the person they cared for.
Healthcare assistants also lacked understanding; they wanted more information about managing incontinence on a daily basis and about how and to whom they could refer people on to for other information about treatments and options.
They managed the everyday symptoms – helped people to go to the toilet as often as they could, (staffing was an issue) sometimes they avoided offering multiple drinks to those at risk of a leak, some changed pads as often as they could (although it was worth noting experienced HCAs were more likely to stick to the arbitrary five pads a day limit set by some organisations).
There was general lack of understanding about people who have a dementia and their incontinence, which could be less physical, but a more cognitive issue.
Despite some of these negative findings, there are some very easy things that organisations like Age UK and TUF can do to help older people, carers and professionals talk about incontinence and promote treatment options.
