Helpline Q&A

Dementia and incontinence

Some of the most difficult issues on dementia are raised with nurses on the National Continence Helpline 1800 33 00 66 and on the online incontinence support forum.

Advice is provided by continence nurse and researcher Jenny Verbeeck, and Dr Joan Ostaszkiewicz, a registered nurse and research fellow in the School of Nursing and Midwifery at Deakin University. Their area of interest is the care of older people, particularly those with dementia and incontinence, and their carers.

These edited extracts typify the issues being raised.

My father was recently diagnosed with dementia. Does this mean he will lose control of his bladder and bowel?

Yes and no. In the early stages of dementia, most people can remain continent, particularly if they are in a familiar environment. Studies have shown that one of the most important factors to help people with dementia to maintain bladder and bowel control is to ensure the toilet is visible and accessible.

However, as a person’s dementia progresses, they usually need increasing levels of assistance. Dementia, particularly Alzheimer’s’ type dementia, affects the person’s abilities to plan and carry out activities of daily living that most of us take for granted. They may need assistance to locate the toilet. They might also need increasing levels of help to recall the tasks associated with using the toilet, such as adjusting their clothing, lifting the toilet seat (for men), sitting on the toilet, using toilet paper, readjusting their clothing, flushing the toilet and washing their hands (Joan).

My mother, who has early-stage dementia, sometimes loses control of her bladder. The main problem is she is a very private person and still thinks she is in control and won’t let me help her change her pads or clean her when she is incontinent. Why is she behaving like this?

Being incontinent and/or dependent on another person for help to manage bladder and bowel elimination has a powerful impact on a person’s psychological wellbeing, causing them to feel ashamed and embarrassed. This is because the capacity to control one’s bladder or bowel is a taken-for-granted and valued aspect of everyday life.

The emotional impact is just as significant for people with mild dementia who are still aware of the social rules about bladder and bowel control.

However, as dementia progresses, a person’s insight diminishes. Your mother’s behaviour suggests that, like most people, she is attempting to maintain her independence with bladder and bowel control.

When people with dementia resist help with such highly personal matters, it can cause carers to feel powerless. Indeed, caring for a person with dementia involves a complex change in relationships, particularly if the person is finding it difficult to maintain control of their bladder or bowel (Joan).

My mother has dementia and won’t stay on the toilet long enough to open her bowels. How do I get her to stay?

Most people usually have a lifelong routine time of the day when their bowels open. Some open their bowels daily, others two to four times a week. Try recalling the pattern and time of day that your mother went to the toilet before being diagnosed with dementia. By maintaining that old routine, there may be less likelihood of accidents, and possibly better compliance with staying on the toilet.

Consider things such as comfort and temperature. Try pasting a picture of a toilet on the back of the door to help orientate her. If she was in the habit of reading on the toilet, give her something to read. (Even if they can’t read anymore, the familiarity settles them.) Try giving her a knotted pair of socks or panty hose to keep her occupied, or try some music. Above all, remain calm. If all else fails, consult a continence nurse experienced with dementia clients. This is a common scenario and there is often no easy answer as each situation presents its own variations (Jenny).

My husband refuses to use the toilet while we’re out, and then wets himself on the way home in the car. Do you have any suggestions?

You might try asking him to accompany you to the toilet because you need to go, and he should hopefully follow without resisting. You can then help him go as well (you may have to explain the situation to the other toilet users).

People with dementia, when confronted with an unknown situation or environment, are likely to refuse to comply. There are many steps involved in the process of toileting (21 in all), which can be terrifying if you don’t have the cognitive capacity to organise yourself. (Jenny)

How can I respond to my mother’s episodes of incontinence in a way that maintains her sense of dignity?

Incontinence can have a devastating effect on a person’s self-esteem, and maintaining her sense of dignity involves emphasising her remaining abilities and minimising her “mistakes” or inabilities. There is nothing to be gained by making her aware of her incontinence.

When people with dementia resist attempts to help, many carers find it useful to back off and come back at a later stage, when they might be more accepting.

Distracting your mother and interacting with her in a humorous manner may also help.

At a practical level, make sure the toilet is always visible and prompt your mother to go at regular intervals.

If your mother is refusing to wear absorbent pads, try inserting a pad into their usual underwear, or encourage her to wear a pull-up-pant. 

The physical presence of urine or faeces is not easy to ignore and, as your mother’s dementia progresses, you could find yourself increasingly pulled into a situation of having to intervene in order to optimise her continence and/or manage incontinence. For some carers, this involves a considerable change in relationships and roles (Joan).

Professional support from the Continence Foundation about continence care issues in people with dementia is available from the National Continence Helpline 1800 33 00 66. The Continence Foundation website also has an online continence support forum, where many carers find support from listening and talking to other carers.