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Destigmatise Incontinence

Paul Edwards, Director of Clinical Services, Dementia UK

How to Destigmatise Incontinence for Families with Dementia and Wider Society 

Incontinence can be a particularly challenging part of dementia. In this piece, Paul Edwards, Director of Clinical Services at Dementia UK, looks at some of the issues faced and practical ways for families with dementia to manage it.

Dementia results in quite significant changes to the brain which can then mean that someone has difficulty going to the toilet. This can be because of problems in finding the toilet or reaching it in time as well as problems around coordination and movement. It can be separated into three different types: urinary incontinence (an involuntary leakage of urine), faecal incontinence (an involuntary leakage of faeces) and double incontinence (a mixture of the two).

For some families with dementia, incontinence can be the ‘final straw’ and a reason why they decide on a move into long-term residential care. But it’s important to talk openly about it to give families the confidence to manage it and to continue living their lives as comfortably as possible. To make this happen, we need to ensure that we’re focussed around:

  1. Prevention of unexpected incontinence
  2. Knowing what to do when you’re in the moment
  3. Getting help


It’s important to make sure the person with dementia is well hydrated and has a good, healthy, and balanced diet. Sometimes infections and constipation can be a major cause of incontinence.

You can try to observe signs of the person with dementia becoming restless or anxious. The person with dementia could be trying to undress their clothing. These might be key triggers to let you know that the person needs to use the toilet.

One of the really helpful tips of prevention is setting up a plan for continence management. If you know the person regularly goes to the toilet at certain times of the day, you can make sure you prompt the person just ahead of those times.

The person with dementia also needs to find the toilet. This can be difficult during the night time so you can leave the light on to help guide a person to the toilet.

Knowing what to do when you’re in the moment

An important part of destigmatising incontinence is remembering that it’s not the person with dementia’s fault. It is also nothing to be ashamed of. Accidents can of course happen when you’re out in public, which some people can be intolerant towards. If this happens, the simple advice is to ignore them as that is a problem with them rather than with you.

In these scenarios, you can help the person with dementia be comfortable and clean as you don’t want to introduce infections. Gloves, incontinence aids and sometimes a change of clothing can all be brought with you when you’re out in public. A scout of the area can allow you to see where the toilets are so you know exactly where to go if unexpected incontinence occurs.

A key part of managing incontinence with people with dementia is realising that they can be ashamed and embarrassed about the situation but they may not be able to express these feelings.

Getting help

GPs and local continence advisory services will be able to provide help, advice and suggestions. People can also contact the Admiral Nurse Dementia Helpline, staffed entirely by specialist dementia nurses, who can provide practical suggestions.

There are many people experiencing incontinence and the more we talk about it, the more comfortable people will be in getting the help they need, without embarrassment. These feelings shouldn’t be a barrier to getting advice and support.



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