Advice

How do I support a person with dementia if they keep trying to pull off their stoma bag?

Question:

My dad has dementia and lives at home. He also has a stoma bag but repeatedly pulls it off – what can we do?

Answer:

Living with a stoma has its challenges – even more so if the person has dementia. If they don’t recognise why they have a stoma bag, it’s not uncommon for them to try to pull it off.

This puts them at risk of damaging their stoma and getting an infection. It also means going through more bags and other supplies.

What is a stoma?

A stoma is an opening made in a person’s tummy. It allows their poo or pee to be collected in a bag on the outside of their body.

Someone may need a stoma if they have certain conditions. These include bowel cancer, Crohn’s disease and diverticulitis.

Comfort and routine

Try to figure out why your dad might be pulling off his bag.

Could it be causing pain or discomfort? Are you using the right bag, and is it fitted properly? Is his skin irritated?

Keep the area around the stoma clean and dry. Avoid creams or soaps that might irritate his skin or affect how well the bag sticks to his body.

A common reason for someone to fiddle with their stoma bag is that it’s become full and heavy.

Keeping a diary could reveal patterns that help you know when to change the bag. Talk to a stoma care nurse or community nurse about how and when to make changes.

Feeling distressed by a bag change could make your dad more likely to focus on the bag afterwards. Make changes as comfortable as possible for him, speaking and acting in a reassuring way.

Try to establish a consistent routine in a quiet and familiar setting. Is there something more pleasant that could occupy his attention during a bag change?

Think about triggers

Look for any ‘triggers’ that prompt your dad to try to remove his bag.

Does it happen at certain times of day, while he’s in a particular room or doing something specific? 

Does he do it more if he is anxious, stressed or bored?

Sometimes you can remove a trigger. If not, you might be able to reduce its impact by helping him focus on something else.

Talk about his hobbies or interests when he starts reaching for the bag. Turn on a favourite TV or radio programme, or offer him a book or photos to look through.

Make it less noticeable

There might be ways to make it less easy for your dad to notice the stoma bag or to try pulling it off.

Could he wear net pants or high-waisted trousers, or can you tuck his top into his underwear?

Specialist clothing may help to make the bag less noticeable and accessible. This could prevent him from reaching for it. It could also give you a better chance of gently distracting him if he does reach for it.

Speak to his doctor or a stoma care nurse about ways to make the bag less noticeable or harder to take out.