Abstract

Most of the 850,000 people living with dementia in the UK live in their own homes with support from family or friend carers. Dementia puts people at much greater risk of developing continence problems (with urine/wee or faeces/poo) than people without dementia of the same age. Continence and toilet-use difficulties cause many problems for both people living with dementia and carers, for example, sore skin, infections, embarrassment, anxiety, fear of going out, relationship breakdown, and expenses such as cleaning carpets or laundry. Dementia can mean that using pads or reminders do not work well for people as time goes by.

Many carers find dealing with incontinence hugely distressing. They describe feeling poorly prepared and alone. Many find it difficult to talk about and want better support from health and care professionals. Recently the research team asked people living with dementia, carers and nurses to tell us what information and support they would find useful. From that, they developed a detailed, practical handbook specifically for carers, covering:

understanding why someone with dementia might become incontinent
helping people keep ‘dry’
managing incontinence
talking about incontinence
continuing with daily activities and socialising.
The handbook contains many ‘real-world’ quotes from carers and will be made freely available on www.continenceproductadvisor.org (an NHS endorsed website).

This is a good start but requires carers to find and use the handbook by themselves. Most carers want proactive support from the professionals they see (either healthcare or homecare workers), but healthcare professionals often feel ill-equipped to help carers or advise homecare workers.

Aims

This study will develop a new resource that will build on the handbook and equip healthcare professionals to:
-Start conversations with carers and homecare workers
-Discuss continence problems and help people choose goals
-Deliver practical advice to carers and homecare workers.
Methods
To do this, first the research team will review research on similar resources and speak to up to 45 primary and community healthcare professionals and homecare workers to fully understand their needs and how a new resource could be used and useful. Then, they will work with carers, people living with dementia, healthcare professionals, homecare workers, care commissioners or funders, voluntary groups and professional bodies to develop the resource. They will ask up to 60 people living with dementia, carers, homecare workers and healthcare professionals to use the resource and share their thoughts. Changes will then be made to improve the resource.