12. Difficult problems

Key points

Sometimes there are no easy answers.
Common difficult problems include:
- The person not remembering that they have continence problems.
- Rejecting help.
- Repetitive habits.

Together, dementia and continence problems can lead to some really difficult problems. In some cases you might not be able to solve the problem, but you might be able to reduce the harm done. Here are some common problems and ideas that might help depending on your situation.

The person you care for doesn’t know that they have continence problems

It can be very frustrating if the person you care for does not know that they need to use the toilet or that they have been incontinent. Sometimes people do not know that they have been incontinent even when their clothes or furniture is wet. They might be shocked or angry that someone else has made this mess in their home. They might remove pads from their underwear because they don’t think that they should be there. They might handle poo because they don’t recognise it.

Carers have suggested some tips that might be useful to manage the situation:

Telling the person that they have a continence problem often won’t help because they can’t remember and it might cause an argument.
Help the person to use the toilet when possible (see section 2).
Consider replacing normal underwear with continence pants (either disposable or washable). These are available in different styles and colours and you can try to find some that are most like the person’s normal underwear (for example, boxer style or dark coloured).
It might help to put these pants in the person’s underwear drawer and remove their normal underwear.
If the person uses a continence pad but keeps removing it, try continence pants instead (see section 4).
For men, think about using pads designed specifically for men – they don’t go between the legs and might be more comfortable (see section 4).
Protect the home in advance (see section 6).
Think about communication skills (see section 11). Don’t try to force the person to agree that they have had an accident – it will probably just cause an argument.

“You go in and it’s all over the bathroom and there’s a bucket and the pants are in the bucket. But she refuses to have any help.”

Daughter in law

Rejecting help

People living with dementia might refuse offers of help or requests, for example, to change wet underwear. This can be very hard to cope with for carers.

Try to work out what is stopping the person from accepting help. Are they embarrassed? Are they angry or scared? Are they uncomfortable? This will help to understand what the person is feeling and perhaps find ways to help.
Encourage the person to accept help by explaining what you want them to do in a simple and calm way. Try not to rush.
Try to make the task as comfortable as possible. For example, this could mean making sure that the room is warm enough, that water is the right temperature or putting the radio on. It could also mean looking after the person’s dignity. Examples of this could be providing a towel to keep covered up whilst changing or by chatting about something the person finds interesting.

“You are only doing it for her own benefit, but at the end of the day if she totally refuses what do you do? Not wanting her pad changed. That’s the main thing.”

Husband

Repetitive habits

Most people have a strong desire to use the toilet and avoid the embarrassment of being incontinent or making a mess. For people living with dementia this can lead to habits such as repetitively going to the toilet or repeated wiping or handwashing as they try to ‘do the right thing’ but can’t quite remember how. These habits can cause problems for the person with dementia and those around them.

It’s important to think about whether there might be something wrong, such as a bladder infection or constipation, that could be making the person feel like they need to keep going to the toilet.
If there doesn’t seem to be a reason, then it can help to try to distract the person from the habit. Ideas include doing an activity that the person enjoys, putting the television on, having a cup of tea, playing music or talking. For more ideas on distraction ideas, visit the Alzheimer’s Society website (www.alzheimers.org.uk).
If the habit is linked to toilet paper (for example, blocking the toilet by using too much), some carers limit the amount of paper available.

“He’s now decided that he has to wipe his backside every time he goes to the toilet. So I’m getting through vast quantities of loo rolls now because he just keeps on and on.”

Wife

“He started peeing out the backdoor, which, although it keeps the foxes away, was smelly and the rest of it and I used to get a bit annoyed with him.”

Wife

Pee or poo in the ‘wrong place’

Pee and poo in the ‘wrong place’ can be very distressing. For example, the person might urinate in the corner of a room or put used pads in a drawer.

Make the correct place to go to the toilet or way to dispose of pads as clear as possible (see sections 2 and 4). If the person regularly urinates in one place, consider keeping a leak-proof container in that place (for example, if a person uses a wicker wastepaper bin, consider replacing it with a plastic bin). This isn’t a perfect solution, but might help limit leakage.
See section 6 on tips on looking after the home.
If you don’t live with the person you care for and they have home care workers who visit, talk to the worker about what’s going on, for example, any common hiding places for pads.

Aggression

Sometimes people living with dementia can become aggressive (for example, shouting or hitting). This is often because something is wrong, but they don’t know what to do about it. If this happens:

It’s OK (and sometimes essential) to walk away.
Try not to argue with the person. Look for triggers so you can try to avoid them for example, overwhelming the person with questions or choices.
Seek help from your Healthcare professional. Get more advice from the Alzheimer’s Society website (www.alzheimers.org.uk).

“Then it was just worse and worse at night as well. I ended up having to get a hospital mattress. He still denied it was happening, that was quite sad.”

Wife

“She will not wear pads and I’ve noticed when I’ve sat in the chair there were a couple of marks. Oh she says it’s the dog and I thought no that’s because you’ve gone through your pants, gone through your trousers and you are sat in that chair.”

Niece

“I’ve had a few women whose husband found it very degrading that their wife is now having to change their underwear or pads and become frustrated and aggressive. That’s not what they’ve normally been like in the past and the wife finds it really difficult.”

Dementia nurse