Principal Investigator: Dr Catherine Murphy, Senior Research Fellow, School of Health Sciences, University of Southampton. c.murphy@soton.ac.uk

Team: Jane Ward: former carer, Alzheimer’s Society Research Network Member, co-founder of Dementia Friendly Hampshire, Patient Research Ambassador: Prof Miriam Santer: Professor of Primary Care Research, Faculty of Medicine, University of Southampton: Prof Jill Manthorpe: Professor of Social Work, Director of NIHR Policy Research Unit in Health & Social Care Workforce, King’s College London – Associate Director of NIHR School for Social Care Research: Prof Mandy Fader: Professor of Continence Technology, School of Health Sciences, University of Southampton: Dr Leanne Morrison: Lecturer in Health Psychology, School of Psychology & Primary Care Research Centre, University of Southampton.

Partners: Health Innovation Wessex, Alzheimer’s Society, Homecare Association, Carers UK, Queen’s Nursing Institute, Dementia UK, King's College London.

Start: 1/06/2022

End: 1/4/2024

Plain English Summary of Findings

We found that

Healthcare professionals wanted an easy and quick to use intervention to sign-post carers to continence care guidance.

Homecare workers would welcome resources aimed at having difficult continence conversations

The findings led us to develop the first evidence-based website to support healthcare professionals to provide continence advice to the carers of people living with dementia. The intervention also provides carers with detailed, practical self-management guidance. The website is www.demcon.org.uk

A summary of the work can be found in this article: C Murphy, B Bradbury, M Fader, L Morrison, M Santer, J Ward, H Chester. Supporting continence care for people living at home with dementia. 22 APRIL, 2024. Nursing Times

What Next?

The project has provided foundational findings for the next phase of work which includes developing a new intervention to support homecare workers to initiate continence conversations with people living at home with dementia.

This work (DemCon2) is being funded by NIHR Three School’s Dementia Research Programme and will start Autumn 2024.

Initial Summary (2022)

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 we asked people living with dementia, carers and nurses to tell us what information and support they would find useful.  From that, we 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. Therefore, in this study, we 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.

To do this, first we 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. We know that many people living with dementia and carers have regular contact with homecare workers who often help with washing and going to the toilet. Then, we 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. We will ask up to 60 people living with dementia, carers, homecare workers and healthcare professionals to use the resource and tell us what they think. We will then make changes to improve the resource.

We want this resource to be used by as many primary and community healthcare professionals as possible so that they can support homecare workers and family carers. So, throughout this project, we will ask people about the best way to make it both useful and accessible.  It will be freely available via www.continenceproductadvisor.org and we expect adopted and recommended by a range of organisations such as the Alzheimer’s Society, Skills for Care, Homecare Association and professional groups.