When people with dementia experience problems related to using the toilet
A person with advanced dementia may lose complete control over their bladder and bowels. However, there are many other reasons why a person with dementia may experience difficulties related to using the toilet. We should never assume that the person has become incontinent until these possible reasons have been explored fully.
If problems do occur, we need to be very sensitive and understanding towards the person.
Why is this happening?
Some reasons why a person with dementia might experience problems using the toilet include:
- The person might not be able to find or recognise the toilet.
- The person might have difficulty communicating their need to go to the toilet.
- The person might not be able to get to the toilet or undo their clothing in time.
- The person might experience difficulties with one or several stages of the process of successfully using the toilet.
- The person might have a urinary tract infection or some other kind of physical problem.
- The person might be experiencing side effects from medication.
- The person might have given up trying to use the toilet because they have not been receiving the help they need.
- The person might be incontinent as a direct symptom of their dementia.
To begin, a person with dementia may not remember where the toilet is. Clear signage on toilet doors can help greatly. In group care settings it can also be really helpful if the toilet doors are painted a different colour to all the other doors leading off a corridor, to make them more noticeable. At home, it can help if the toilet door is left open.
Health and disabilities
Sometimes a person may seem to be incontinent, but actually their difficulties are caused by other health problems and disabilities. A urinary tract infection, for example, can result in urgent and frequent ‘calls to nature’ and a person may not be able to get to the toilet in time. Any mobility problems are also likely to affect a person’s ability to get to the toilet quickly enough. It’s really important to ensure that mobility needs are assessed – for example, that a chair is at the right height for a person to rise easily and that a person has mobility aids that are suited to their own needs.
People with dementia can sometimes experience difficulties recognising things and seeing the depth of an object. This can mean that, even though a person is able to see, they may be unable to recognise that a toilet is a toilet or make it out as separate from its surroundings. It’s much easier if the toilet seat is a very different colour from its surroundings, and a black or red seat will be most easily recognised by those with perceptual difficulties.
A complex process
Some people have difficulty with one part of the process of using the toilet. A person with dementia might, for example, sit down on the toilet without pulling down their underwear or forget what to do with toilet paper once they have used it. Knowing which parts of a task are difficult for an individual enables us to give just the help that’s required, and – whenever possible – the person can then be left in privacy to use the toilet.
Picking up clues
The better we know the people with dementia we care for, the easier it is to support their continence. For example, we may discover that one person usually needs to go to the toilet about half an hour after breakfast. Providing a discreet prompt 20 minutes after breakfast – just before the need is likely to arise – will help to ensure that the person gets there in time. Someone who has always hated public toilets may prefer a private individual toilet rather than a cubicle in a row of toilets.
If a person is not able to tell us in words that they need to go to the toilet, we’ll have to get to know the non-verbal signals that the person uses to communicate this. It may be, for example, that someone starts pulling at their clothing when they need to go to the toilet. Someone else might make a particular sound.
It’s so important to do all we can to help people to use the toilet. It’s such a private part of our lives and so embarrassing when something goes wrong. If problems do occur, we need to be very sensitive and understanding towards the person. We also need to be committed to finding out the cause and doing all we can to prevent it from happening again. Incontinence pads should only be used when absolutely necessary as people often find them uncomfortable and embarrassing. Usually it is possible to support people’s individual needs and make sure that people are there in the right place with the right help when they need to go to the toilet – and even if the person chooses to wear a pad for their own peace of mind, it will rarely be used.
All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:
- Activity: Problems related to using the toilet
- What the research says: Difficult situations
Further reading Open
Alzheimer Scotland (2009) ‘Continence management – advice for carers of people with dementia’, Information sheet 24, Edinburgh: Alzheimer Scotland.
Alzheimer’s Society (2011) ‘Managing toilet problems and incontinence’, Factsheet 502, London: Alzheimer’s Society.
Leslie, H. (2004) ‘Urinary continence rehabilitation in the person with dementia’, in M. Marshall (ed) Perspectives on rehabilitation and dementia, London: Jessica Kingsley Publishers.
Poole, J. (2007) The Alzheimer’s Society guide to the dementia care environment, London: The Alzheimer’s Society.
Stokes, G. (2002) ‘Responding to the need to toilet’, in G. Stokes and F. Goudie (eds) The essential dementia care handbook, Milton Keynes: Speechmark.
Useful links Open
Alternatives to antipsychotic medication: psychological approaches in managing psychological and behavioural distress in people with dementia
This 2013 British Psychological Society briefing paper sets out guidance for practitioners on how to respond to distress in people with dementia by following a ‘staged approach’: a series of steps involving identifying, understanding and implementing individualised interventions.
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including many that relate to difficult situations in supporting a person living with dementia: Dementia and aggressive behaviour (509), Sight, perceptions and hallucinations in dementia (520), Managing toilet problems and incontinence (502), Walking about (501), and Sex and intimate relationships (514).
Dementia: Supporting people with dementia and their carers in health and social care
This 2006 guideline jointly published by the National Institute for Health and Clinical Excellence (NICE) and the Social Care Institute for Excellence (SCIE) offers comprehensive best-practice advice on the care of people with dementia and on support for carers.
Positive and proactive care: reducing the need for restrictive interventions
The Department of Health’s 2014 guidance on restraint is aimed at all health and social care staff working with adults in England.
Related pages from this section Open