Improving quality of life for people living with dementia and their care partners: the development, intervention and evaluation of a dementia specific narrative-based intervention: LEND (lived experiences narratives in dementia)

Background: In the UK, there are 850,000+ people with dementia supported by 700,000 informal carers. Both the diagnosis of dementia and the associated stigma can seriously undermine a person s sense of identity including self-esteem, social engagement, and quality-of-life. These negative impacts cumulatively leading to 'excess disability' where the person may be functioning below their potential, and this is linked to increased care costs. It is an NHS, service user and global priority to improve post-diagnostic dementia support and quality-of-life so people with dementia and carers can better understand dementia symptoms and have improved coping strategies. Lack of information and support is a particular concern for people from disadvantaged groups including ethnic minorities and the variety of LGBTQ+ communities. Technology to improve post-diagnostic support and wellbeing is an under-used resource to address this NHS, service user, and global priority. Research shows people with mental health conditions find viewing, reading or listening to peers personal narratives from others with similar experiences helps their own well-being. The NIHR-funded NEON programme developed and evaluated a web-based lived experience narrative intervention. The NEON-O Trial, involving 1,023 participants with non-psychosis mental health problems, showed an improvement in the primary outcome of quality of life (p = 0.041), reduced NHS costs by £170 per user, and was cost-effective using the NICE threshold for a recommendable cost-effective intervention. We will adapt narrative principles from mental health to develop and evaluate the online Lived Experience Narratives for Dementia (LEND) Intervention, in which a web-based curated collection of recorded lived experience narratives from people with dementia and carers are accessed by participants. A filtering system and machine learning will support selection of the narratives. Our consultations with carers and people with dementia indicated that online narratives would be very helpful to both groups. Aim: improved quality of life for i) people with dementia, and ii) carers by developing and evaluating the LEND Intervention. Method: 1) Identify LEND Intervention core components by adapting NEON programme theory using interviews and a discrete choice experiment study. 2) Create and curate an online collection of dementia lived experience narratives from people with dementia and from informal carers 3) Co-design and develop a personalisable and accessible web application to host these narratives 4) Explore the feasibility and acceptability and longer term impact of LEND in a randomised feasibility trial 5) Evaluate the clinical effectiveness and cost-effectiveness of the LEND Intervention for (a) people with dementia, and (b) carers, through two definitive randomised controlled trials each with a process evaluation. 6) Explore routes to market by identifying, characterising, and explaining mechanisms and factors, that promote or inhibit LEND implementation. Our Lived Experience Advisory Panel (LEAP) will be provided with training and support in patient and public involvement (PPI), research skills and cultural competence training to support involvement. LEAP members will include representatives who self-identify as Black, South Asian and LGBTQ+. The research team and LEAP will work together to develop the LEND Intervention, recruitment strategy and dissemination/implementation plan, and to collect data and interpret results.