Continence and using the toilet

People with dementia may face a number of difficulties with using the toilet, particularly as the illness progresses. These can include:

Memory: Forgetting to go to the toilet, where it is, or how to use it.
Sequencing: Struggling to perform the different physical steps in the right order.
Communication: Not being able to say when they need to go, or when, how and why they are experiencing problems.
Recognition: Not recognising the body’s physical messages that they need to go, or not realising what the toilet is and going elsewhere instead.
Environment: Finding the toilet may be difficult. Colours, mirrors and surfaces may cause confusion.

This guide looks at four common situations for people with dementia — and suggests ideas to offer support.

What to do if a person has difficulty getting to the toilet in time
What to do if a person is afraid to go into the toilet
What to do if a person doesn’t sit long enough to finish what they are doing
Getting the environment right
Things to avoid
Useful resources

What to do if a person has difficulty getting to the toilet in time 

Ask the person

Do they have ideas about how to tackle the problem? If they can’t explain in words, are they trying to tell you through their gestures or actions? Find out more about the person’s routines, for example, do they use the toilet before showering or after a meal? Remember that, for most people, these are very challenging conversations.

Be observant

Watch the person’s body language, behaviour or any signs that they may need to use the toilet, for example restlessness or fidgeting. Women, for example, often pull their skirt up above their knees. In the bathroom, check if they are struggling with their clothing – this may be slowing them down.

Communicate clearly

Try short, simple prompts in the person’s preferred language, and check understanding. It may be necessary to use physical gestures, pictures or cue cards to get the point across.

Keep a record

Note any patterns and use this to help predict when best to support the person to go to the toilet.

What to do if a person is afraid to go into the toilet

Ask the person

What are they afraid of? Could it be physical pain or embarrassment? Do you know the person’s life history and does this offer any clues to explain their fears? Could cultural issues or gender differences explain their feelings?

Communicate clearly

It may be necessary to talk through each of the steps involved in going to the toilet. Stay calm and use short, simple sentences.

Be creative

Playing music or doing a little dance on the way to the bathroom may help to offer reassurance and help encourage the person to the toilet.

Be flexible

Use a commode or urine bottle if needed.

What to do if a person doesn’t sit long enough to finish what they are doing

Communicate clearly

Gently remind the person to remain seated. It may be necessary to use a cue card or sign to remind the person, or to direct them through the steps for going to the toilet.

Offer distractions

Some people like to flick through a magazine or book while they are in the bathroom.

Run water in the basin

For some people, hearing this sound can make the person feel the urge to go to toilet.

Be observant

What is prompting the person to exit early? Fear of lack of time? Lack of privacy? Can they see and reach the toilet roll? Perhaps there are distracting noises or activity near the bathroom. Check these possibilities, offer reassurance and take any necessary action.

Getting the environment right

Is it obvious where the toilet is?

Put up signs with a picture and the word ‘toilet’ (in preferred languages, contrasting colours and large print) on the toilet door. Place similar signs but with direction arrows also around the home or facility.

Is it well lit?

Ensure the bathroom is well lit day and night, and use luminous tape or plug-in lights to mark the route to the toilet.

Is it familiar?

If the toilet is in a care facility, if possible try to copy any features of the person’s bathroom at home, such as door colour or pictures. Many people feel on guard or anxious using public toilets, and toilets in care facilities may prompt similar feelings. It may help to place a picture the person likes on a wall near the toilet door entry and ask them to look at it or talk about it.

Is it comfortable?

Is the temperature ok? What is the smell like? A padded commode chair may be more comfortable.

Check mirrors

Mirrors can cause distress or confusion as the person with dementia may have difficulty recognising faces – their own, and/or other people’s. If so, cover the mirrors, perhaps with a small pull-down blind, so it can be done quickly.

Check colours and contrast

The toilet should be a different colour to the floor and wall behind, and if the toilet seat is coloured, this will help the person to see it better. Remove mats that are a different colour to the floor or are shiny. Actual colour is not the issue – you can use different colours with the same tone. The issue is contrast in tone. Ensure that the tone of the floor is consistent since changes may be perceived as a step.

Things to avoid

No matter the situation, remember never to:

  • Scold the person for ‘accidents’, or in any way blame the person.
  • Drag or force the person into the toilet or use inappropriate restraint while on the toilet.

Expect the person to remember where the toilet is.

Useful Resources

Dementia and its impact on continence

The website for the Continence Foundation of Australia has written information and six short films looking at continence issues arising for people with dementia.

Promoting continence for people living with dementia and long-term conditions

This 2015 leaflet from the Care Inspectorate Scotland is written in the voice of a person with dementia (e.g. “What I need to stay continent and how you can help”) and sets out practical suggestions for ways to support a person with dementia with going to the toilet independently.

[You can download Toilet Talk here]

This resource material is informed by literature and associate practice evidence. This guidance should be applied within your organisations policies and procedures.
©HammondCare Dementia Centre November 2018 (next review date November 2020)