1. What is incontinence and will I become incontinent?

Why might people with dementia have incontinence or problems using the toilet?

Many people (whether they have dementia or not) live with incontinence but people with dementia are more likely to have problems than other people, for a range of reasons. Dementia affects people’s brains in different ways. Common reasons why someone might develop dementia related incontinence and toilet-use issues are that they:

• Don’t recognise the signals that they need the toilet.
• Don’t remember how to get to the bathroom or toilet.
• Forget what to do when they get to the toilet, such as lifting the toilet lid or seat up.
• Have difficulty managing their clothing when they go to use the toilet.Don’t recognise the toilet and use something else, such as a bin.
• Don’t have enough time to get to the toilet and are ‘caught short’.

People with dementia might also have other causes of incontinence (like a weak pelvic floor or prostate problems) that are more common as we get older.

“Sometimes I get to a point where I feel, my God, I might just not be able to stop it happening and I'm not even at a toilet. But I'm pretty organised about making sure that doesn't happen. I mean, fortunately, my dementia hasn't impacted my abilities to keep organised about things”.

Jeffery lives in S. E. England

Will I become incontinent?

Although people with dementia are more likely to have problems with incontinence, not everyone with dementia will have problems with incontinence or toilet use. We do not know which types of dementia are more likely to cause these problems. We cannot predict who will develop continence problems and who will not.

People with dementia who have incontinence have told us that they can have good days and bad days. Not every day feels the same. Things that can affect continence include:

• Other health problems
• Diet
• Feeling stressed
• Some medications

People with dementia might also have other causes of incontinence (like a weak pelvic floor or prostate problems) that are more common as we get older.

“My bladder control, it kind of switches off a little bit when I'm highly stressed or if I find that my anxiety levels have increased”.

Roberta lives in N. W. England