Continence management - advice for carers of people with dementia

This information is for carers of people with dementia. If the person with dementia has difficulties with continence there is a lot that can be done to help or even prevent the problem. 

If you require further information about continence or other issues regarding dementia call the freephone Dementia Helpline 0808 808 3000. 

What is incontinence?

Incontinence is the loss of control of the bladder and/or bowel function. Our brains send messages to our bladder and bowel telling them when it is necessary to empty them. Being in control of these functions depends on an awareness of bodily sensations such as having a full bladder and knowing how, when and where to respond.

When someone has dementia they may no longer be able to: 

• recognise the need to go to the toilet
• be able to wait until it is appropriate to go to the toilet
• find the toilet
• recognise the toilet
• use the toilet properly.

Incontinence may happen frequently or the person may just experience occasional leakage.

It is common for people with dementia to do apparently 'odd' things, such as hide wet clothes or wrap faeces in parcels and hide them. This may be because they are embarrassed by what has happened and unable to think of a better way to deal with it. Some people may urinate in inappropriate places such as the wastepaper basket, which they may have mistaken for the toilet. Removing objects from their room which could be mistaken for a toilet and ensuring they go to the toilet regularly may help. Try not to get angry or upset and remember they are behaving in this way because of the dementia.

Facts and figures

According to the Bladder and Bowel Foundation, approximately 60-70% of people with dementia develop incontinence. This is mostly urinary incontinence while bowel incontinence is not common until very late in the illness; but this varies from person to person. 

It is rare for someone in the earlier stages of dementia to have continence problems. More often problems start as the dementia progresses from the moderate to severe stages. 

Feelings

Personal hygiene is a very private issue to all of us and many people find it hard to accept that they need help, even from someone very close to them. Respecting the privacy of the person with dementia and maintaining their dignity is very important. You will need to be tactful and sensitive when helping someone with personal hygiene.

For carers this problem can seem very frustrating, worrying, embarrassing or unpleasant. If you are finding it hard to cope with your feelings, talk with your community/district nurse or continence adviser. 

People with dementia react differently to the experience of incontinence. Some find it very distressing and humiliating; other people appear to just accept it or are even unaware of it.