Lived Experience Narratives in Dementia
Trial statusRecruiting
Trial phaseNot applicable
Trial typeInterventional
Biological sexAll
Age18-99
SponsorUniversity of Nottingham
About this trial
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.
Eligibility criteria
This trial accepts healthy volunteersQualifiers
Adults aged 18+.
Able to give informed consent and participate meaningfully in the required tasks.
Adequate communication ability in the required study language
Disqualifiers
Living in a hospital or healthcare institution at the time of the study.
Refusal or inability to provide informed consent, or lack of capacity to consent.
Inability to comprehend participant information or communicate meaningfully
Trial design
Design model
Parallel
Treatments tested in this trial
Online LEND Intervention
BehavioralThe 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.
Treatment groups
60 Participants
are divided into 2 treatment groupsGroup A: Online LEND InterventionExperimental treatment 1 intervention
Group B: Treatment as UsualNo intervention 0 interventions
Trial outcomes
Primary outcomes
1
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 Months2
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 MonthsSecondary outcomes
1
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 Months2
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 MonthsOther outcomes
1
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 Months2
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 Months3
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 Months4
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 MonthsSponsors and contacts
Click on the lead sponsor to view all of their trials.
University of Nottingham
Lead sponsor
Nottinghamshire Healthcare NHS Trust
Collaborator
Source ClinicalTrials.gov