Coping with incontinence

Incontinence can be humiliating for a person with dementia and upsetting for those around them. However, although it can be a distressing problem, it is a surprisingly common one, and the good news is that there is plenty of help out there. This factsheet looks at what causes the problem and suggests some ways to help, as well as highlighting the support available.

What is incontinence?

There are two types of incontinence:

Urinary incontinence - when someone loses control of their bladder.
Faecal incontinence - when someone loses control of their bowels.

This may happen all or most of the time, or may just be a case of occasional leakage. Urinary incontinence is far more common than faecal incontinence. Both types of incontinence may be treatable, so it is always important to consult the doctor.

Why is incontinence so distressing?

Hygiene is a very personal issue. From a very young age, we are trained to control our urges to go to the toilet, so being incontinent can make it feel as if one is losing control. This can affect a person's sense of dignity and self-esteem. Many people find it very hard to accept that they need help from someone else in such an intimate area of their life − even (or sometimes, especially) if from someone very close to them.

Why might someone with dementia become incontinent?

Incontinence is not an inevitable symptom of dementia, but there are a number of reasons why someone with dementia could become incontinent. These include various medical conditions, a number of which are treatable.
Medical causes include:

Urinary tract infections - these usually respond to treatment with medication.
Prostate gland trouble - this affects men, and may be resolved with an operation.
Side-effects of medication - the GP can address this by changing the person's prescription or altering the dose.
Severe constipation - constipation can put pressure on the bladder, and can also lead to faecal incontinence. Eating foods that are high in fibre, drinking plenty of fluids and keeping physically active can help prevent this.

Non-medical causes may include:

forgetting to go to the toilet
not recognising the need to go to the toilet, because of the damage caused by dementia
forgetting where the toilet is.

How may a person with dementia react to being incontinent?

Every individual will react differently to the experience of incontinence. Some people find it very upsetting, while others find it easier to accept. Common occurrences among people with dementia include:

Hiding the evidence − If someone feels very ashamed of their incontinence, they may try to hide the evidence − they may take off their wet or soiled clothes and hide them, or wrap faeces in a parcel and try to throw it away.
Going to the loo in the wrong place − If someone becomes confused about their surroundings, they may urinate in an inappropriate place, such as a wastepaper basket, because they have mistaken it for a toilet.

Tips: dealing with an accident

Approaching the problem with understanding, matter-of-factness and humour can improve the situation for everyone concerned.

If someone has an accident, the three most important things that a carer can do are to:

try to overcome any embarrassment or distaste they may feel
avoid being angry or appearing upset
remember that it's not the person's fault.

However, this may not always be as easy as it sounds. If a carer finds their feelings about incontinence difficult to handle, it's a good idea talk things through with a community nurse or continence adviser. It is important not to let dealing with incontinence get in the way of the relationship with the person being cared for.

Tips: ideas to reduce accidents

When someone has problems with incontinence, the first thing to check is whether they are able to get to the toilet without any problems. They may want to use the toilet but be unable to use it, or even to find it. The following ideas may help:

Make sure the person knows where the toilet is. A sign on the door may help. A visual reminder, such as a picture, may be more effective than words. This must be clearly visible, so put it within the person's line of vision (not too high on the door), and make sure the image is bright so it's easy to see.
Make sure that there are no obstacles in the way, such as awkwardly placed furniture or doors that are hard to open, obstructing the way to the toilet.
Leave the toilet door open when not in use so it is obvious when the toilet is vacant.
Check the placement of mirrors in the bathroom. The person with dementia may confuse the image they see for someone else in the bathroom.
Make sure the toilet is easy to use. If aids such as handrails might be helpful, ask the doctor put you in contact with an occupational therapist, who will offer advice free of charge.
Consider changing the colour of the toilet seat. A black seat and a white pan can make it easier to see. People with dementia may experience orientation difficulties if the bathroom facilities are all the same colour.
Make sure any clothing can be quickly removed and unfastened. Some people find Velcro fastenings easier to use than zips or buttons.

If the person has accidents, carers or professionals may find it helps if they do the following:

Remind the person to go to the toilet, or take them there, at regular intervals. Taking the person to the toilet at a set time can help prevent faecal incontinence, if their habits are regular.
Be aware of signs that the person wants to go to the toilet. These may include fidgeting, getting up and down, or pulling at their clothes.
If the person is incontinent at night, encourage them to avoid drinks for two or three hours before going to bed. However, make sure that they drink plenty of fluids during the day.

If it becomes too difficult for the person to get to the toilet, an aid such as a commode may be useful. Ask the community nurse for advice.

Incontinence aids

If you've tried everything you can and the person is still experiencing problems with incontinence, there are plenty of ways to help them feel more comfortable while also protecting items such as clothes and bedding. Various products are available from your local continence adviser or community nurse. Others are available at the chemist.

Waterproof bedding − This will protect the mattress. However, make sure the sheet doesn't come into contact with the skin, as it may become chafed and sore. You can also buy special protective duvet covers and pillowcases.
Absorbent undersheets − Reusable undersheets provide a dry surface on beds and chair beds.
Incontinence pads and pants − These can be worn day and night, or during the night only, to keep the area next to the skin dry. It is important to make sure they are the right absorbency, that they do not chafe, and that they are changed as often as necessary.

For more advice on these and other aids, talk to your community nurse or continence adviser.

Ensuring good personal hygiene

Incontinence can lead to skin irritation and a general feeling of discomfort. After someone has had an accident it is important to act quickly, to make sure they feel comfortable again and to ensure good hygiene.

If someone has become wet or soiled, help them to wash afterwards with mild soap and warm water, and dry them carefully before putting on fresh pads and clothes.
Wash soiled clothes or bedding immediately, or soak them in an airtight container until they are washed.
Put used pads in an appropriate container.
Use moist toilet tissues for minor accidents.

Where to get support

If you are affected by this issue, your doctor should be your first port of call. Whatever you think the cause is, pay a visit to the GP. Even if there is no immediate treatment, they may be able to put you in contact with your local community nurse, continence adviser or occupational therapist, who will make a home visit to assess the situation and suggest ways to make it easier to cope.