About this guide

This guide has been developed by researchers, together with people who are living with dementia.

Not everyone with dementia will have incontinence but, if they do, this guide aims to help them manage by themself or with support. All quotations are from people who have dementia, sharing their experiences of managing their toilet-use and incontinence.

People who have dementia can (and should) continue to live their life to the full and keep doing the things they enjoy, even if they are experiencing toileting difficulties. This might include doing hobbies, continuing with an active social life, going on short breaks and taking longer holidays. This guide has practical ideas and tips to help you manage your activities if you have concerns about incontinence (now or in the future).

“Once you start to develop incontinence, you start to then think, ‘Well, is this part of it (dementia) or is it just the medication that I'm taking?’ So, that's why I do a lot of research online and look into different stages of what people are going through and it's nice to see what people say and give ideas. So, I think a website like this is valuable to people, quite honestly”.

Roberta lives in N. W. England

How to use this guide

The guide has 11 sections, with some key points for quick reference and more detailed advice if you want it. The guide is full of practical information, with tips highlighted to help you pick out ideas quickly. There are also links to take you to other areas of this website that you may find helpful.

You don’t need to read the whole guide. You can choose the sections from the menu that you think might be useful to you. If you find the subject upsetting, or become worried and would like some help, get in touch with a healthcare professional such as your GP, or talk to a friend or family member.

We understand how difficult it can be to talk about incontinence or to ask for help in managing it. If it does become a challenge for you, we hope this guide will help.