Lived Experience Narratives in Dementia

Alzheimer Disease, Caregiver Burden, Caregiver Burnout, Dementia, Neuro-Degenerative Disease

The Lived Experience Narratives in Dementia (LEND) research programme involves five work packages (WP). WP1 explores how people living with dementia use narratives and how narratives can impact them. Findings will support the development of LEND theory. WP 2-3 focus on developing the digital Online LEND Intervention, assessing its usability and acceptability, and conducting a feasibility study within NHS memory assessment and community services. Activities across the first three WPs include interviews, focus groups, user-testing sessions, engagement evaluation interviews, and a two-arm randomised feasibility trial using a range of outcome measures. Findings from this stage will inform refinement of the intervention and determine the feasibility of progressing to a future randomised controlled trial (RCT) of the Online LEND Intervention. WP4 is the Online LEND Intervention two-arm RCT. WP5 involves dissemination. The protocol for WP4 and 5 have not yet been developed and rely on results from WP1-3.

Study Overview The Lived Experience Narratives in Dementia (LEND) Programme is a five-year NIHR-funded research programme designed to develop, optimise, and evaluate a novel digital intervention that delivers personalised lived-experience narratives to people living with dementia and their carers. The ultimate goal is to improve wellbeing and quality of life by providing accessible, relatable, and culturally diverse narratives that promote hope, self-efficacy, independence, and emotional support. Packages (WP) 1-3, includes theory development (WP1), intervention development (WP2), and a randomised controlled feasibility study with long-term follow-up interviews (WP3). LEND prioritises inclusion of under-served communities, including Black and South Asian groups, LGBT+ communities, people with young-onset dementia, and people with rarer dementias (see LEND WP1-3 Protocol v1.0 CLEAN). WORK PACKAGE 1: Development of LEND Theory WP1 develops the theoretical foundations that shape the design and content of the LEND digital intervention. It consists of five interconnected sub-work packages, each addressing a different element of user experience, narrative relevance, and contextual factors affecting engagement. WP1.1: Online or Paper Survey (WP1.1O / WP1.1P) Purpose: To understand how people living with dementia and carers use social media, technology, and online resources over time. Design: A continuous cross-sectional survey, recruiting ≥300 participants per year over five years (minimum n=1,500 total) LEND WP1-3 Protocol v1.0 CLEAN Focus: * Patterns of online behaviour * Barriers and facilitators to digital engagement * Types of narratives accessed, preferred formats, and comfort levels with online content WP1.2: Semi-Structured Interviews Purpose: To explore how lived-experience narratives may benefit people living with dementia and carers, informing LEND theory. Sample: n=30 (15 people with dementia; 15 carers) LEND WP1-3 Protocol v1.0 CLEAN Focus: * Perceived use and impact of narratives * Digital literacy, accessibility, and digital poverty WP1.3a: Narrative Impact Validation Purpose: To test how participants engage with up to five lived-experience narratives selected from an initial pool of \ 30 narratives, including those from ethnic minority and under-served groups. Sample: n=40 (20 people with dementia; 20 carers) LEND WP1-3 Protocol v1.0 CLEAN Focus: * Emotional and cognitive responses to narratives * Comprehension, resonance, and perceived relevance * The development of criteria * Safety considerations (e.g., triggering material, content warnings) WP1.3b: Narrative Rating Purpose: To develop a categorisation framework for dementia narratives based on user ratings and feedback. Sample: Repeat measures from WP1.3a. Focus: * Narrative qualities (tone, genre, turning points, themes) * Degree of helpfulness, clarity, relatability * Score or rate different types of narrative * User preferences to inform algorithmic recommendations WP1.4: Focus Groups Purpose: Conducted in collaboration with the Centre for Ethnic Health Research, WP1.4 prioritises inclusion of Black, South Asian, and other under-served communities. Sample: Four focus groups (n=40 total) LEND WP1-3 Protocol v1.0 CLEAN Focus: * Cultural perceptions of dementia * Barriers to accessing support and digital interventions * Relevance, acceptability, and cultural safety of narratives WP1.5: Discrete Choice Experiment (DCE) Purpose: To determine which narrative features are most valued by people with dementia, carers, and the general public. Sample: * n=10 people with dementia * n=10 carers * n=10 general public LEND WP1-3 Protocol v1.0 CLEAN Focus: * Trade-offs between different narrative types * Preferences relating to narrator characteristics, narrative tone, format, and content * Input directly informing later intervention design WORK PACKAGE 2: Development of LEND Intervention WP2 focuses on building the digital intervention through iterative, user-centred development. WP2.3: Development of the LEND Digital Intervention WP2.3 is a multi-phase iterative development process consisting of workshops, prototype development, usability testing, accessibility refinement, and preparation for feasibility evaluation. Phase 1: Co-production Workshops (Months 10-12) Using LEAP (Lived Experience Advisory Panel) members and developers: * Identify essential features of the LEND Portal and Online LEND Intervention * Determine accessibility requirements and inclusive design priorities Phase 2: First Working Version (Months 12-14) * Build initial prototype of the LEND web application * Conduct first stage of usability testing with n=20 participants (10 carers, 10 people with dementia) * Develop expert rules for relevance-based narrative retrieval Phase 3: Second Working Version & Testing (Months 14-18) * Refine interface based on feedback * Achieve AA-level accessibility compliance (WCAG & EN 301 549) * Conduct second usability testing cycle with n=20 (balanced sample) Phase 4: Third Working Version (Months 18-36) * Produce pre-feasibility version of intervention * Conduct in-vivo user testing * Recruit from earlier phases to conduct extended testing Key Features of Intervention (developed across WP2.3): * Web-based LEND Portal (registration, consent, outcome measures) * Machine-learning narrative recommender * Narrative filtering and content warnings * Ability to rate, block, or bookmark narratives * Optional LEND eBooklet for digital inclusion (low-tech video player) All narratives used are categorised using the INCRESE-D system developed in WP2.1 and curated into the LEND Collection (WP2.2). WORK PACKAGE 3: Feasibility Study and Long-Term Impact WP3 evaluates feasibility, acceptability, and preliminary signals of impact in preparation for a full-scale RCT. WP3.1: Randomised Controlled Feasibility Study Design: * Parallel-group RCT with 1:1 randomisation * Intervention (Online LEND Intervention) vs. Treatment as Usual (TAU) * Stratified by co-resident carer status * Remote computerised randomisation via Bangor Clinical Trials Unit * Analysts blinded to allocation Sample: n=60 * 30 people with dementia * 30 carers Duration: 6-month follow-up period Outcome Measures (all self-report via LEND Portal): Primary outcomes include: * QoL-AD (PWoD only) * SWEMWBS (both groups) Secondary outcomes include: • EID-Q, RSES, GSES, CSES, Zarit Burden, EQ-5D-5L, ICECAP-O, Adult Hope Scale, CSRI Feasibility Outcomes: * Recruitment rates and retention * Adherence and engagement with intervention (time spent, narratives accessed) * Acceptability and suitability of intervention in real-world contexts * Data completeness and technical viability of digital data collection WP3.2: Long-Term Impact Interviews Purpose: To evaluate longer-term influence of the LEND intervention among those who received it in WP3.1. Sample: n=20 * 10 people with dementia * 10 carers Timing: * 12 months post-randomisation * 18 months post-randomisation Focus: * Sustained changes in wellbeing, confidence, independence, and support * Usability, acceptability, suitability over longer durations * Experiences with platform features and narrative engagement * Identification of risks, barriers, or unintended consequences Interviews are recorded, transcribed, and linked to participants' engagement and demographic data using a pseudonymised UID system Integrated Purpose of WP1-3 Collectively, these work packages: * Establish the theoretical foundation (WP1) * Develop a user-centred and accessible digital intervention (WP2) * Evaluate feasibility, acceptability, and preliminary outcomes required for a future fully powered clinical trial (WP3) This integrated, iterative design follows the MRC Framework for Developing and Evaluating Complex Interventions (2021) and aligns with NICE digital technology evidence standards. WP4 and WP5 will be determined following the evaluation of WP1-3.

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