Caring for a loved one with a stoma and dementia

Hear from Sarah our Clinical Advisor

From A Bigger Life

This article shares hints and tips on how to help a loved one with dementia who has a stoma and is trying to manage it independently.

So, what is dementia? Dementia is a syndrome, it’s a group of related symptoms and it is associated with an ongoing decline of your brain functioning. It can include problems such as:

1. Memory loss
2. A slow thinking speed
3. Your mental sharpness and quickness is impaired
4. Your language won’t be as coherent as previously
5. Your understanding of social situations may be a little different
6. Your mood can drop and can be lower
7. You’ll move a bit slower and you won’t be as comfortable going about your normal daily activities.

There are many causes of dementia and people with dementia can become disinterested in their usual everyday activities and they have problems controlling their emotions. They can find social situations quite challenging. A person with dementia can lose that understanding and empathy for others and situations. People with dementia might not remember the sequence of events and how things are suppose to happen. They might find organising themselves and organising others more difficult as to how they previously managed, so managing their independence can be a big problem.

Managing with a stoma and dementia

So, when you add a stoma into this mix, it’s a complicated picture that health professionals, friends and family have to deal with. It is possible some instances in the early stages, for people with a stoma who have developed dementia to continue managing their stoma because they do remember some sequences. But some little hints and tips that might help would be to have a printed version of a step by step guide with pictures and words and put it in the bathroom where they would normally change their appliance.

Another little tip would be for the family to prepare the kit in advance. So the little disposable bag you get complimentary from a lot of places, you put your stoma pouch in it, you put some wipes in it for washing and drying and you have this all supplied and prepared maybe for a few days in advance. You could keep all of this in a box, in the bathroom, so the person who is coming in maybe with early stages of dementia and trying to maintain their independence and dignity, just have to lift one thing and they have everything together to get out. They can use the step by step guide just as a little aid memoir so they can remember exactly what to do, in the sequence that it’s supposed to happen and then they can once again look after themselves.

A complex situation would be is somebody who has dementia and who has a stoma and who is not able to maintain their independence and when they’re relying on others to look after their stoma for them. They may start to grab and feel for the stoma bag that’s on their tummy, so you’d want to develop hints and tips to maybe prevent that. One would be tucking their shirt into their underpants so the access to the stoma pouch is limited. You can maybe use flange extenders so you’re increasing the security of the pouch onto the abdomen and to make it more difficult for someone to pull their pouch away.

Using a stoma belt might be an idea because it increases the security and perhaps even a light support belt because it wraps around the whole abdomen and would help prevent the person getting access to their stoma.

What might be happening is that the stoma pouch could be causing a little irritation or pain, so at each change it is really important to check the shape and size of the stoma, to check the peristomal skin and to check the pouch matches the size and shape of the stoma. Things can change and it’s really to act on any problems that might be developing.

Also, constipation may be an issue with someone with a colostomy and just have a look at the bowl motion is looking like on a weekly basis and to add in some fibre or a laxative to ensure that the bowel motion is coming through easily. But, don’t suffer with problems alone, contact your stoma care nurse or go on to some of the dementia support websites because they’re starting to gain a little bit of traction on forums about people helping their loved ones trying to maintain their independence, also people who are carers and people are coming up with novel ideas to help you look after your loved one with stoma. Something else that might work whenever you are caring for you loved one would be to give them something in their hands to distract them, or get them to brush their hair, that seems to be a distraction technique and you can go about managing their a stoma without them becoming distressed.


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