King's College London

Background

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. Many people living with dementia and their carers find dealing with incontinence hugely distressing. Research by team members has found that many 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.

The Principal Investigator of this study is Dr Cathy Murphy (University of Southampton). See other members of the research team, including Helen Chester and Jill Manthorpe of King's, below.

Aims and research questions

This research builds on previous studies by the research team which asked people living with dementia, carers and nurses to tell us what information and support they would find useful. The outcome of that research was a detailed, practical handbook specifically for carers.

The aim of this study is to build on this handbook to develop a new scalable, low-cost and sustainable intervention to be used by healthcare professionals to equip them to:

• start conversations about continence with people living with dementia, their carers and homecare workers
• discuss continence problems and help people choose goals
• deliver practical advice to carers and homecare workers.

Research Question: Can we develop an acceptable, useful and scalable intervention to help primary and community healthcare practitioners to deliver practical and relevant continence self-management guidance (including initiating conversations and prioritising needs) to people living with dementia, their carers and homecare workers?

Timescale

2022 – 2024

Funding

NIHR Three Schools' Dementia Research Programme

Ethical Approval

In progress

Methods

Drawing on complex intervention development guidance, we will take a theory, evidence and Person Based Approach (PBA) to developing this intervention throughout the four phases of the study with public contributors and stakeholders involved throughout. The four phases comprise:

Phase 1: Rapid review and narrative synthesis of relevant literature to identify lessons learnt from other interventions delivered by healthcare professionals in primary and community settings to similar populations.

Phase 2: Semi-structured interviews with primary care and community health care professionals and home care workers from different areas in England. The development of a prototype for the intervention by the research team and its refinement with public contributors and stakeholders.

Phase 3: Well-established field-testing methods will be used to assess and iteratively strengthen the real-world useability, usefulness & acceptability of the intervention. This will include ‘think aloud methods’ and semi-structured interviews which will include questions around the intervention’s acceptability and usefulness. The intervention will then be modified based on these findings and further interviews will follow. This process of rapid refinement will be guided by the Person Based Approach referred to above.

Phase 4: The intervention will be finalised and made publicly available on www.continenceproductadvisor.org. Promotion and dissemination activities will take place with the support of relevant professional bodies.

Expected outcome and impact

A low-cost intervention to support the delivery of practical and relevant continence self-management guidance to people living with dementia, their carers and homecare workers that is widely used by primary and community HCPs.

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. Accordingly, we will involve stakeholders and public contributors throughout this project and 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 it to be adopted and recommended by a range of organisations and professional groups. There will also be several peer-reviewed publications from the study.

ORCID ID NUMBERS

Dr Cathy Murphy, Principal Investigator (University of Southampton):  https://orcid.org/0000-0003-1244-5106  |  Professor Mandy Fader (University of Southampton): https://orcid.org/0000-0002-0801-543X  |  Professor Jill Manthorpe (King’s College London): https://orcid.org/0000-0001-9006-1410  |  Professor Miriam Santer (University of Southampton): https://orcid.org/0000-0001-7264-5260  |  Dr Helen Chester (King’s College London): https://orcid.org/0000-0001-6587-6618  |  Dr Leanne Morrison (University of Southampton): https://orcid.org/0000-0002-9961-551X | Dr Barbara Bradbury (University of Southampton): https://orcid.org/0000-0002-6732-3168

See also

• Home Care Research Forum (May 2023)
• The follow-on study: Continence support for people living at home with dementia (DemCon Homecare)