The co-production, evaluation and provision of web-based toilet-use and continence care interventions for people living at home with dementia (DemCon 2)
Background
This research study is being undertaken by a team from the University of Southampton and King’s College London and is funded by the National Institute for Health and Care Research. It builds on previous qualitative studies around continence and dementia, which identified that unpaid carers wanted more practical guidance about continence care for people living with dementia. They also sought greater advice from healthcare professionals, particularly their GP and primary care nurses. In turn, healthcare professionals spoke of the need for greater knowledge of dementia-related continence issues in order to provide such support. The outcome from this earlier work was the production of a detailed, practical handbook aimed specifically for unpaid carers. This was followed by the development and evaluation of an intervention for use by healthcare professionals to help them offer continence advice to people living at home with dementia. The resultant bespoke resources for unpaid carers and healthcare professionals, outputs from the initial DemCon research, are sited on the ‘DemCon’ website, which was made available publicly in May 2024: www.demcon.org.uk
During the DemCon study, the research team established that homecare workers see supporting continence care for people living with dementia as central to their role but receive little, if any, dementia-specific continence training and would welcome resources to support their problem-solving approach. They placed particular emphasis on the need for a range of multi-media resources to support two-way continence conversations. During the DemCon fieldwork the team listened to many people (those with dementia, unpaid carers and homecare workers), who stated that people with dementia, particularly in the early stages of the disease, want to stay independent with their continence needs for as long as possible. Unmet information needs include how to talk about continence, how to maintain independent toilet use, and planning for future care. Additionally, interviewees and stakeholders asserted that the diversity of people able to use the DemCon website and its impact would be increased substantially via the addition of a range of multi-media resources including videos, illustrations and audio, in common with other support programmes. Also of note, the use of visual methods in research, such as illustration, has been described as a ‘bridge’ between researchers and lay audiences and may facilitate conversations around perceived difficult topics.
The Principal Investigator of this study is Dr Barbara Bradbury.
Aims and research questions
The aim of this study is to improve the lives of people living at home with dementia through supporting them in managing continence and toilet-use. Four key groups need to be considered: 1) people living with dementia, 2) unpaid carers (i.e. family and friends), 3) healthcare professionals and 4) homecare workers (i.e. paid care workers). A different intervention is needed to help each group in their varying roles. Two of these groups, namely unpaid carers and healthcare professionals, have been the focus of a previous research project (DemCon).
The DemCon 2 project will build on DemCon by developing, evaluating and providing resources specifically for 1) people living with dementia and 2) homecare workers, plus the development of multi-media resources for all sections. These resources will provide online information and advice tailored to the needs and priorities of each user group, alongside practical tools and behavioural components to support users to enact the guidance provided. On completion, the interventions and multi-media resources will be added to the DemCon website.
Timescale
1 Jan 2025 – 31 Dec 2026
Funding
NIHR Three Schools’ Dementia Research Programme
Methods
Drawing on complex intervention development guidance, we will take a theory, evidence and Person Based Approach (PBA) to developing these resources, 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 for use by people with dementia. This will inform the Topic Guides used to interview people with dementia.
Phase 2: Stakeholder workshops with homecare workers to further develop and refine homecare worker resources from DemCon. Semi-structured interviews with people with dementia from different areas in England to capture content, usability and acceptability data. Interviews will be transcribed and analysed using thematic framework analysis to inform 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.
Expected Outcome
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 the public (people with dementia and carers), homecare workers, and primary and community HCPs.
We want this resource to be used by as many people as possible. 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 Barbara Bradbury, Principal Investigator (University of Southampton): https://orcid.org/0000-0002-6732-3168 | Prof Cathy Murphy, (University of Southampton): https://orcid.org/0000-0003-1244-5106 | Dr Fauzia Knight (King’s College London): https://orcid.org/0000-0003-0845-9011 | Dr Monica Leverton (King’s College London): https://orcid.org/0000-0001-6678-5865 | Professor Miriam Santer (University of Southampton): https://orcid.org/0000-0001-7264-5260 Dr Leanne Morrison (University of Southampton): https://orcid.org/0000-0002-9961-551X
Eric Deeson and Jane Ward are lived experience co-applicants.
See also
Two earlier studies on which this study builds:
Continence support for people living at home with dementia (DemCon Homecare) | King's College London – 2023-2024
