Lived Experience Narratives in Dementia (LEND) Work Packages 1-3
Research type
Research Study
Full title
Improving the Quality of Life for People Living with Dementia and Carers: The Design, Development and Feasibility of a Online Narrative-Based Intervention for People Living with Dementia and Carers
IRAS ID
351969
Contact name
Mark Howells
Contact email
Sponsor organisation
Nottinghamshire Healthcare NHS Foundation Trust
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
The Lived Experience Narratives in Dementia (LEND) programme is a primary research initiative examining how personal narratives can enhance the quality of life for individuals with dementia and their carers. Emphasising inclusivity, it targets under-served groups, including ethnic minorities and LGBTQIA+ communities. This application pertains to Work Packages (WPs) 1- 3; subsequent WPs 4 and 5 will require a separate application.
WP1 involves developing LEND theory by exploring how and why individuals engage with narratives, and the impact of these on users. A user-centred, mixed-methods approach is employed, including semi-structured interviews, focus groups, rating scales, and experimental choice tasks, alongside guidance from a Lived Experience Advisory Panel (LEAP). A Discrete Choice Experiment (DCE) will be designed to determine which narrative features offer the greatest value.
WP2 applies LEND theory to design and develop the Online LEND Intervention and expand the LEND Collection, a database of dementia-related narratives. These are sourced from individuals with dementia, carers, and third-party organisations. Inclusion criteria will be developed using an adapted version of the INCRESE tool to form an INCRESE-D inventory.
WP3 is a feasibility study focusing on research systems, outcome measures, and the long-term qualitative impact of the Online LEND Intervention.
Through rigorous methodology and user-informed design, the LEND programme aims to embed storytelling as a means of enhancing inclusivity, emotional well-being, and representation within dementia care, ultimately informing future interventions and systems.REC name
East Midlands - Leicester Central Research Ethics Committee
REC reference
25/EM/0199
Date of REC Opinion
14 Oct 2025
REC opinion
Further Information Favourable Opinion