DemCon2

Most people with dementia live in their own home, with help from family or friends. They tend to have more toilet-use and continence problems than others. These can lead to such things as sore skin, infections, worry about going out and the need for costly pads. Dementia can also make coping harder. Such problems really upset many people living with dementia and their family carers. They find it hard to talk about them, even with healthcare staff and paid homecare workers.

In our previous study (DemCon1), we wrote two sets of toilet-use and continence guidance for:

• Family carers: including for example, why people with dementia might not be able to use the toilet, how to help them keep ‘dry’, and how to carry on with ‘normal life’.
• Healthcare staff: to help them offer continence advice to people living at home with dementia.

This is a good start but people with dementia and paid homecare workers have told us that they need guidance written just for them. Plus, all groups have told us that more people would be helped if we added different options such as videos and pictures. 

• Aims

  In our new study (DemCon2), we will write two more sets of toilet-use and continence guidance for:

  • People living with dementia: including tips on talking about continence, how to make plans for the future and how to remain being able to use the toilet without help.
  • Homecare workers: how to support people with using the toilet by themselves and how to talk about future needs.

  We will also make videos and pictures that will be added to all four sets of guidance (for people living with dementia, carers, health professionals and home care workers) and we will make them available on the ‘DemCon’ website.   

   

• Study design and methods

  For the new study we will look at what other people have done when they have been making guidance like ours to see what has worked well. We will then use what people have already told us, plus speak to up to 20 more people who are living with dementia so that we can understand what they need and how the new guidance could help them.

  Then, we will work with family carers, people with dementia, health staff, homecare workers, voluntary groups and others to make the new guidance. Finally, we will ask up to 50 people (people with dementia, family carers and homecare workers) to use the guidance and tell us what they think before we make final changes.

• Sharing the findings

  We want the guidance to help as many people as possible, so we will ask people about the best ways to do this.

  It will be free via www.continenceproductadvisor.org and from groups such as the Alzheimer’s Society, Skills for Care, Dementia UK, Homecare Association and others.