Hypothesis / aims of study
Most people living with dementia develop urinary or faecal incontinence in the mid or late stages of illness. Maintaining independent toilet-use or high-quality continence care for as long as possible can help support health and wellbeing and reduce care workload but can be challenging for this population. The lack of continence support for people living at home with dementia is widely acknowledged. Therefore, we aimed to develop an evidence-based continence care website with specific sections for four key groups (people with living with dementia, family carers, homecare workers and healthcare professionals).
Study design, materials and methods
Iterative work phases developed and evaluated resources for four groups in England (2020-2026). Ethical approval was obtained and informed consent provided by all participants.
1. Family carers:
• Development: semi-structured interviews with carers (n=26) and literature review of existing resources.
• Evaluation: semi-structured interviews with family carers (n=40).
2. Health professionals:
• Development: Systematic review to identify the intervention features required to address clinician needs and support effective intervention engagement (searches in MEDLINE, PsycINFO, EMBASE, CINAHL and Cochrane Central Register of Controlled Trials CENTRAL) and semi-structured interviews with primary and community clinicians (n=31).
• Evaluation: semi-structured interviews with professionals and carers via semi-structured and think aloud interviews (n=40).
3. Homecare workers:
• Development: Structured stakeholder engagement with homecare workers and managers (n=17).
• Evaluation: semi-structured and think-aloud interviews (n=9, on-going Spring 2026)
4.People living with dementia:
• Development: A rapid review of literature (searches in MEDLINE, PsychINFO, SCOPUS and CINAHL) to identify what is known about the views of people living with dementia on how to design self-management online resources. Interviews with people living with dementia to develop resources (n=23).
• Evaluation: semi-structured and think-aloud interviews over Summer 2026 (on-going).
Results
Key findings:
1. Family carers: Participants and literature highlighted the lack of continence care information/support, emphasising the need for proactive health and care professional input, but reporting that most professionals lack dementia specific continence knowledge. Prototype DemCon website received highly positive feedback with suggestions to clarify language.
2. Health professionals: 12 relevant papers (from 5,547 reviewed) highlighted the need for targeted and tailored resources and user involvement in their development. Interviews reported the need to address the challenges of initiating dementia/continence conversations, to be succinct, support sign-posting and develop dementia/continence knowledge.
3. Homecare Professionals: Interviews highlighted specific needs for information to support context-specific, variable challenges. Prototype evaluation is on-going.
4. People living with dementia: 9 relevant papers (from 1901 reviewed) reported that barriers to engagement include limited carer-focused content, low digital confidence, use of complex language, excessive text, distracting visuals, and poor navigation. Interviews highlighted that clear information using a hopeful/positive/solution-oriented tone, hearing the experiences of other people living with dementia, and support for talking about continence with others are all valued.
Interpretation of results
With input from over 180 participants, the DemCon website (Figure 1) provides an urgently needed resource for all key groups involved with continence care for people living at home with dementia. Whilst some information needs cut across all groups (e.g. “Why people living with dementia are more likely to experience incontinence” and “How to talk about dementia and incontinence”) the importance of having sections tailored to their distinct needs was emphasised by all groups.