Managing toilet problems and incontinence
Difficulties with using the toilet, accidents and incontinence can all be problems for people with dementia, particularly as the condition progresses. These problems can be upsetting for the person and for those around them. However, incontinence is not an inevitable consequence of dementia and support is available. This factsheet looks at what causes problems with using the toilet and incontinence, and how they might affect a person with dementia. It gives practical tips to help prevent, manage or (in some cases) cure incontinence, and looks at the professional support available.
What is incontinence?
Incontinence is the involuntary leakage of urine or faeces, or both ('double incontinence').
Urinary incontinence may be a small occasional leak, trickling after passing urine, or total loss of bladder control.
Urinary incontinence has several different forms. Probably the most common in people with dementia is overactive bladder, where there is a sudden and intense need to go, and frequent urination.
Women are at particular risk of stress incontinence, when a cough, sneeze or laugh causes a small leak of urine.
Faecal incontinence may range from passing a small amount of stool when breaking wind, to having no bowel control at all. Faecal incontinence is less common than urinary incontinence. It affects men and women about equally.
Why might someone with dementia become incontinent?
Incontinence in older people
Older people in general are at increased risk of incontinence. In some cases this is because of a medical condition, which may be treatable. Medical causes of incontinence, in older people with or without dementia, include:
- Urinary tract infections - these usually respond to treatment with medication (see factsheet 528, Urinary tract infection (UTI) and dementia for more information).
- Prostate gland trouble - this affects men, and may be treatable.
- Constipation - this is uncomfortable and also makes both bladder emptying and 'holding on' more difficult to control. Constipation is also a very common cause of faecal incontinence, for example when liquid faeces flow around a hard, impacted stool.
- Side effects of medication - the GP may be able to address this by changing the person's prescription or altering the dose.
- Other bowel conditions such as irritable bowel syndrome.
Many people do not seek help from health professionals about these problems because of embarrassment. But it is important that they are raised with GPs or specialists, as medical causes can often be treated or managed.
Incontinence and toilet problems in people with dementia
Someone with dementia is more likely to have accidents, problems with the toilet or incontinence than a person of the same age without dementia. There are many reasons.
Causes of accidents and problems can include:
- not being able to react quickly enough to the sensation of needing to use the toilet
- failure to get to the toilet in time, sometimes due to mobility problems caused by other conditions such as arthritis
- not being able to communicate the need to go to the toilet
- inability to find, recognise, or use the toilet; 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
- not understanding a prompt from someone to use the toilet
- not managing the personal activities of toileting, such as undoing clothing and personal hygiene
- not letting others help with toileting - perhaps because of embarrassment or not understanding the offer of help
- not making any attempt to find the toilet - this could be due to lack of motivation or depression, or because the person is distracted
- embarrassment after an accident, which the person unsuccessfully tries to deal with. Wet or soiled clothes or faeces may be put out of sight (for example, wrapped up and put at the back of a drawer) to be dealt with later, but then forgotten.
In some people incontinence develops because the nerve pathways that tell the brain that the bladder or bowel is full, and also control emptying, are damaged. However, this is an uncommon cause of toilet problems and incontinence in people with dementia. It typically occurs only when dementia is more advanced.
Tips for carers: importance of a healthy bladder and bowels
Keeping the urinary tract and bowels healthy is a good first step to preventing toilet problems and incontinence. It can be helpful if carers can work with the person with dementia to ensure the following:
- The person should drink six to eight glasses of fluids each day - more if they have hard stools. Cutting down fluids or not drinking them for long periods of time (for example to avoid the need to urinate at night) can cause urinary tract infections and constipation.
- They should eat a balanced diet with at least five daily portions of fruit and vegetables, and enough fibre to ensure a regular bowel movement.
- The person should keep as mobile as they can. If they are able, walking every day helps with bowel movements.
- Ensure a regular time, and allow enough time on the toilet, to empty bowels. There are biological reasons why trying to go a few minutes after a meal works - many people favour going after breakfast.
If a health professional has suggested the person might have an overactive bladder, they will also advise replacing drinks which irritate the bladder (eg tea, coffee, cola or alcohol) with water, herbal teas, squash and fruit drinks.
Women with mild dementia and urinary stress incontinence sometimes learn pelvic floor exercises, with the support of specialist continence nurses or physiotherapists. These exercises can cure stress incontinence caused by weakness of the pelvic floor muscles due to childbirth or ageing.
Laxatives are widely available over the counter for people with constipation. However, they should not be used for long without seeking advice from a GP or pharmacist, as the symptoms may mask another condition.
If constipation is the cause of faecal incontinence, carers can learn to massage the person's abdomen to relieve the blockage. Specialist continence nurses can train carers in this technique, though it requires co-operation and is not to everyone's liking.
Tips for carers: helping to reduce accidents
Help with using the toilet at home
The following ideas may help someone to find, recognise and use the toilet more easily:
- Help the person identify where the toilet is. A sign on the door, including both words and a picture, may help. It will need to be clearly visible, so place it within the person's line of vision and make sure the sign is bright so it's easy to see. Help the person know when the toilet is vacant; leaving the toilet door open when not in use makes this obvious. Check the placement of mirrors in the bathroom. The person with dementia may confuse their reflection for someone else already in the room, and not go because they believe the toilet is occupied.
- Help the person make their way easily to the toilet. Move any awkwardly placed furniture or prop ajar any doors that are hard to open. The room and the route to the toilet should be well lit, especially at night. Movement sensor lights in the bedroom and bathroom can help at night. These are available from shops selling independent living aids and equipment, or through occupational therapists.
- Make using the toilet easier for people with mobility problems. Aids such as handrails and a raised toilet seat may help. Occupational therapists can give free advice on these, or you can ask someone at a local independent living shop.
- Help the person identify and use the toilet. A contrasting colour (eg black seat on a white base) can make it easier to see. Some men who have poor mobility or balance, or who can no longer direct their penis when urinating, may find it easier to sit rather than stand.
- Help the person undo, remove and replace clothing easily. Trousers with an elasticated waist (eg tracksuit bottoms) are often easier than zips. Some people find Velcro™ fastenings easier to use than zips or buttons.
- If getting to the toilet becomes too difficult because of mobility problems, an aid such as a commode may be useful. Using this will require the person to recognise the commode, be willing to use it, and find it an acceptable piece of furniture. PromoCon (see 'Other useful organisations') and independent living shops provide information on commodes and other aids. Alternatively, you can ask the occupational therapist, community nurse or social services.
- The person should have privacy in the toilet, but make sure they don't have difficulty managing locks. Some people with dementia struggle with this. To avoid the person locking themselves in, disable locks or ensure you can open them quickly from the outside.
Help when out and about
There are several ways to make travelling or being outside easier for the person with dementia. Being more confident and able to cope with accidents is important, because toilet problems can lead to giving up activities or becoming isolated.
- Plan in advance. Find out where accessible toilets are.
- Go prepared. Fit a light pad (the kind that attaches to underwear) and carry spare clothing and pads, as well as a bag for soiled items.
- Buy a RADAR key (see 'Other useful organisations'). This gives disabled people - including people with dementia - independent access to thousands of locked public toilets around the country.
- Carry a Just Can't Wait toilet card. These can be bought from the Bladder and Bowel Foundation (see 'Other useful organisations'). The card should encourage places such as shops to help with access to toilets. Use the disabled toilet if the person needs you to help them with the toilet (particularly if you are of a different gender).
Help with remembering to go to the toilet
Giving regular reminders about using the toilet is a common approach to help with accidents. For someone with urinary incontinence, the carer asks regularly (eg every 2-4 hours) whether the person needs the toilet. The person is given encouragement and assistance with using the toilet if they ask for help. It is important to check that the person has used the toilet, and not forgotten or become distracted. There is evidence that, over time, this can help some people reduce the number of accidents.
Prompting needs to be done sensitively, to avoid patronising or annoying the person with dementia. Watch discreetly for signs that the person wants to go to the toilet, even if they cannot communicate this directly. These signs may include fidgeting, pacing, getting up and down, or pulling at their clothes.
Help with scheduled use of the toilet
For someone who is regularly wet it may be better to develop a timetable to offer help or reminders for going to the toilet, for example when they wake up, before each meal, at morning and afternoon coffee or tea, and before bed.
For faecal incontinence, it is often possible to re-establish continence by going to the toilet at a set time each day and helping the person stay long enough to have a bowel movement.
Help with night-time problems
Many older people wake during the night to urinate. A person with dementia may wake disorientated and unable to act quickly enough to find (or get to) the toilet. Ideas that might help include:
- light motion sensors and/or night lights in the bedroom, passage ways and bathroom
- a urinal bottle (designed for men and women) or commode next to the bed at night
- not having drinks for two hours before going to bed, but remember that the person should still drink enough during the day to avoid becoming dehydrated.
Tips for carers: dealing with an accident
Hygiene is a very personal issue. From a young age, people are trained to control urges to go to the toilet, so having problems or being incontinent can make a person feel like they are losing control. This can affect their 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 the help is from someone very close to them.
Every individual will react differently to the experience of incontinence. Some people find it very upsetting, while others find it easier to accept. Approaching the problem with understanding, matter-of-factness and humour can help to improve the situation for all concerned.
If someone has an accident, it is important for carers and friends to:
- remember that it's not the person's fault
- try to overcome any embarrassment or distaste they may feel
- avoid being angry or appearing upset.
This may not always be easy. If as a carer you find feelings about incontinence difficult to handle, it is a good idea to talk things through with a health professional. This could be the GP, a community nurse or a continence adviser (a nurse with specialist training in management of incontinence). It is important to try not to let dealing with incontinence get in the way of your relationship with the person you are caring for.
Ensuring good personal hygiene
Incontinence can lead to skin irritation and a general feeling of discomfort. After an accident, it is important to act quickly to make sure the person feels comfortable again and to ensure good hygiene.
- If someone has become wet or soiled, they should wash afterwards with mild soap and warm water, and dry carefully before putting on clean clothes and fresh pads, with assistance if necessary.
- Soiled clothes, reusable pads or bedding should be washed immediately, or soaked in an airtight container until they are washed.
- Used pads should be stored in an appropriate container and disposed of as soon as possible.
- Moist toilet tissues may be suitable for minor accidents, but be aware that some can cause an irritating rash.
It can be hard to seek professional help for incontinence. Many people do so only at a point of crisis, as it may feel like a loss of dignity for the person with dementia. Some may see incontinence as inevitable, but for many people with dementia, given the right advice and patience, accidents and incontinence can be managed or sometimes even cured
The GP should be the first port of call. The doctor should review the symptoms and any underlying medical conditions (eg urinary tract infection or constipation), diet or medications that might be causing the problems. The doctor may do an internal examination of the bowel.
If this assessment is unable to resolve things, ask to have the person referred to a continence adviser. You may have to be persistent here: NHS continence services across the country are quite variable and you may have to push to see someone who understands incontinence in people with dementia. There may be a wait for these services.
The continence adviser will assess the problems and how they are affecting quality of life for the person and any carer. It is common to be asked to keep a chart of toilet habits.
After a thorough assessment the continence adviser will write up a continence care plan tailored to the individual. The plan should include things that the person with dementia and any carer can do to help. It should also describe the support that professionals should provide, as well as follow-up and next steps.
The goal - agreed with the person with dementia and carer - should be to cure toilet problems or incontinence wherever possible. In many cases, identifying and addressing practical issues, changing medications or making simple changes to lifestyle (diet, fluids, exercise) are sufficient to achieve this.
In a few cases referral to further specialists (eg geriatrician, urologist or gynaecologist) will be needed. For some people, advice will focus not on cure but on containing the incontinence as comfortably as possible using aids.
Other health professionals can visit at home and offer support:
- A community nurse can help with access to NHS-funded continence products and advise on management, hygiene and how to protect the skin.
- An occupational therapist can advise on adaptations and equipment.
- A physiotherapist can advise if manual dexterity is the problem.
- A community psychiatric nurse, Admiral Nurse or the community mental health team can help if behavioural changes are affecting how someone uses the toilet.
Ask the GP about being referred to these professionals.
It may be that everything has been tried and toilet problems and incontinence persist. In this case, use of aids can help ensure greater comfort and protect clothing, furniture and bedding. The main aids are listed below.
- Incontinence pads and pull-up pants. These can be worn day and night, or during the night only, to draw fluids away from the skin. It is important to find the right type and absorbency for the individual: they should be comfortable without chafing or leaking. They should be changed as often as necessary.
- Male continence sheath. This is a silicone condom which drains into a bag attached to the leg. It may be especially helpful when worn at night.
- Waterproof mattress protector. This is often used in combination with an absorbent bed pad. The protector should not come into contact with the skin, as it may cause chafing and soreness. You can also buy special protective duvet covers and pillowcases.
- Absorbent bed pad. This is an undersheet which provides a dry surface on a bed or chair. These are available as washable or disposable products.
Talk to the continence adviser or community nurse for advice and how to obtain NHS-funded supplies. The NHS should supply incontinence products in sufficient amounts according to assessed clinical need. The details of what is supplied by the NHS vary across the country and many people top up supplies or buy different versions of products privately with their own money. You can get advice and buy products from independent living shops or large branches of high-street chemists. For national organisations that can help, see 'Other useful organisations'.
Other useful organisations
Bladder and Bowel Foundation
SATRA Innovation Park
Kettering NN16 9JH
A charity for adults affected by bladder and bowel problems. It provides information and support for individuals, patients, carers and healthcare professionals. The Foundation also sells the Just Can't Wait toilet card.
10 Priestley Road
Wardley Industrial Estate
Manchester M28 2LY
Provides a national service to improve life for all people with bladder or bowel problems by offering product information, advice and practical solutions to professionals and the general public.
RADAR - the Disability Rights People
Disability Rights UK
12 City Forum
250 City Road
London EC1V 8AF
The RADAR National Key Scheme offers disabled people independent access to locked public toilets around the country. Toilets fitted with National Key Scheme locks can now be found in shopping centres, pubs, cafés, department stores, bus and train stations and many other locations in most parts of the country.
Last reviewed: June 2013
Next review due: June 2016
Reviewed by: Professor Vari Drennan, Faculty of Health and Social Care Sciences, Kingston University and St George's University of London and Dr Ann Capewell, Consultant Physician, St Helens and Knowsley Teaching Hospitals NHS Trust, Merseyside
This factsheet has also been reviewed by people affected by dementia.
A list of sources is available on request.