The Dementia and Continence (DemCon) advice website

  • There are many reasons why it can be difficult to discuss continence problems when consulting with carers or people living at home with dementia. Time is constrained, problems are not always raised, everyone’s experience is different and can change day-to-day. That’s why we have developed this DemCon website.
    • Healthcare professionals can signpost carers to the website.
    • Carers can then explore the sections that are most relevant to their needs and experiences.
  • Supporting carers to confidently manage continence problems may lessen the need for further support from healthcare services later with, for example, skin breakdown or urinary tract infections.
  • The website has been developed by clinical researchers at the University of Southampton and King’s College London with support from people living with dementia, carers, clinical experts and funding from Alzheimer’s Society and the NIHR.
  • The Carer’s Guide includes quotes from carers who have taken part in our research. These are designed to provide useful tips and help people who are new to caring for continence problems feel less alone.

The website has two sections:

A quick access reference summary section for Healthcare professionals contains a brief summary about dementia and continence problems (and can be read in conjunction with the carers guide for more detailed information if you wish).

How can I support carers?

  • Provide the website link so the carer can look at the website in their own time
  • Read the Continence Conversations section to support you in conversations about continence care with carers (3 minute read)

The Carers section of the website gives practical advice on a wide range of continence and toilet use problems, providing management strategies as problems change through the caring journey or whilst they are waiting to see specialist services (e.g. Bladder and Bowel service). The DemCon website for carers can be accessed from the button to the top right of this page or wherever you see this link. It is divided into 14 sections, each focussing on a different practical element of continence management. As well as advice based on evidence and expert opinion, each section provides quotes from carers.

Why it is important to talk about dementia and continence

  • Many carers of people living with dementia find continence and toilet use problems both challenging and distressing. Often carers don’t ask for help until they’ve reached crisis point. People need proactive practical advice to help them manage before care at home breaks down.
  • Taking the opportunity to signpost to advice and support early can help people to live at home for as long as possible and help carers continue in their caring role.
  • It can be a difficult topic to raise with people, but avoiding the conversation leaves people to suffer in silence, causing more problems later on. Don’t assume that the carer will ask for help or that someone else will offer support.
  • Many carers don’t want to bring up the topic themselves. This can be because they are embarrassed, want to protect the dignity of the person they care for or because they don’t think any help is available. But most carers do want to talk to their healthcare professional.