An interventional study of Online LEND Intervention in Dementia, Neuro-Degenerative Disease and Alzheimer Disease, sponsored by University of Nottingham. Recruiting at 2 sites in United Kingdom. Open to participants aged 18 Years to 99 Years, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-08-11.
Sponsored by University of Nottingham · Not applicable, Interventional, and Supportive care
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:
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:
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:
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:
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:
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:
Focus:
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:
Key Features of Intervention (developed across WP2.3):
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:
Outcome Measures (all self-report via LEND Portal):
Primary outcomes include:
Secondary outcomes include:
Feasibility Outcomes:
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
Timing:
Focus:
Integrated Purpose of WP1-3
Collectively, these work packages:
WP4 and WP5 will be determined following the evaluation of WP1-3.
General Inclusion Criteria (apply across WP1-WP3)
General Exclusion Criteria (apply across WP1-3)
Participants in WP3, the feasibility trial, are allocated to this arm receive access to the LEND digital intervention. The intervention consists of a web-based platform that provides personalised lived-experience narratives curated for people with dementia and their family carers. Content includes written, audio, and video narratives covering themes such as coping strategies, identity, emotions, daily living, social relationships, and adjusting to diagnosis. Participants are able to browse and select narratives; receive recommendations based on preferences; bookmark or rate content; and use accessibility features designed to support cognitive needs, including simplified navigation, adjustable text, and audio playback. The intervention is used independently at home for 4 to 6 weeks, with no minimum usage requirement. Participants also complete baseline and follow-up outcome measures through the integrated LEND Portal prior to randomisation.
Behavioral: Online LEND Intervention
Participants randomised to this arm continue to receive their standard care and support as normally provided. This may include by NHS Memory Assessment Services, community mental health teams, primary care, and other relevant voluntary-sector and non voluntary-sector organisations. They do not receive access to the Online LEND Intervention during the feasibility study period. Prior to randomisation, participants complete the same baseline outcome measures. Access to the LEND portal, but not the Online LEND Intervention, is continued as follow-up outcome measures are required after 6 months period, paralleling the intervention arm.
The Online LEND Intervention is a web-based platform that provides personalised lived-experience narratives for people with dementia and their carers. It aims to support wellbeing, confidence, and self-efficacy by offering relatable stories from others with similar experiences. The final design is still in development but is expected to include personalised recommendations, simplified navigation, adjustable text, audio playback, captioning, and content warnings. Users will be able to bookmark, rate, or hide stories and access the intervention independently at home over a 4 to 6-week period. The platform will be accessed via the secure LEND Portal, where participants also complete study measures. LEND does not provide clinical advice; it offers supportive, ethically reviewed narratives to promote connection and empowerment.
Quality of Life (QoL-AD)
The Quality of Life in Alzheimer's Disease (QoL-AD) scale is a validated measure captures wellbeing across multiple domains including mood, relationships, daily activities, memory, and overall life satisfaction. The feasibility study will assess completeness of data, variability, and acceptability of QoL-AD as the primary endpoint for a future definitive RCT.
Time frame: Baseline and Six Months
Mental Wellbeing (SWEMWBS)
The Short Warwick-Edinburgh Mental Wellbeing Scale (SWEMWBS). This seven-item scale assesses emotional functioning, optimism, and psychological wellbeing. The feasibility study will evaluate suitability, recruitment, retention, and response characteristics of SWEMWBS as the primary carer outcome for the full trial.
Time frame: Baseline and Six Months
Engagement and Independence in Dementia Questionnaire (EID-Q)
For people with dementia only. Assesses engagement in meaningful activities, independence, autonomy, and perceived capabilities in daily life.
Time frame: Baseline and Six Months
Rosenberg Self-Esteem Scale - Brief Version (RSES)
For both people with dementia and family carers. Measure of global self-esteem and self-worth.
Time frame: Baseline and Six Months
General Self-Efficacy Scale (GSES)
For both people with dementia and family carers. Evaluates confidence in ability to cope with challenges, problem-solve, and exert control over important aspects of life.
Time frame: Baseline and Six Months
Caregiver Self-Efficacy Scale (CSES)
For Family carers only. Assesses carers' perceived ability to manage caregiving tasks, access support, and maintain personal wellbeing.
Time frame: Baseline and Six Months
Zarit Burden Interview - Short Version (ZBI-12)
For family carers only. Measures subjective caregiver burden, including emotional strain, role stress, and perceived overload.
Time frame: Baseline and Six Months
EQ-5D-5L
People with dementia and carers. Assesses health-related quality of life across five domains: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression.
Time frame: Baseline and Six Months
ICECAP-O (ICEpop CAPability Measure for Older People)
People with dementia only. Evaluates broader wellbeing and capability across domains including attachment, security, role, enjoyment, and control.
Time frame: Baseline and Six Months
Adult Hope Scale (AHS)
For people with dementia and carers. Measures goal-directed thinking, including pathways (planning routes to goals) and agency (motivation to pursue goals).
Time frame: Baseline and Six Months
Client Service Receipt Inventory (CSRI)
For people with dementia and carers. Captures service use, support needs, and associated costs from both health and social care perspectives.
Time frame: Baseline and Six Months
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Plan to share: No — Only anonymised data will be shared for the purposes of analysis and interpretation.
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