Lived Experience Narratives in Dementia
NCT07757178 · Status: RECRUITING · Phase: NA · Type: INTERVENTIONAL · Enrollment: 60
Last updated 2026-08-11
Summary
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.
Conditions
- Dementia
- Neuro-Degenerative Disease
- Alzheimer Disease
- Caregiver Burden
- Caregiver Burnout
Interventions
- BEHAVIORAL
-
Online LEND Intervention
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.
Sponsors & Collaborators
-
Nottinghamshire Healthcare NHS Trust
collaborator OTHER_GOV -
University of Nottingham
lead OTHER
Principal Investigators
-
Martin Orrell · University of Nottingham
Study Design
- Allocation
- RANDOMIZED
- Purpose
- SUPPORTIVE_CARE
- Masking
- SINGLE
- Model
- PARALLEL
Eligibility
- Min Age
- 18 Years
- Max Age
- 99 Years
- Sex
- ALL
- Healthy Volunteers
- Yes
Timeline & Regulatory
- Start
- 2025-11-17
- Primary Completion
- 2029-03-31
- Completion
- 2029-07-31
Countries
- United Kingdom
Study Locations
More Related Trials
-
Virtual Peer-to-peer Support Programme for Carers of MND
NCT04695210 ·Status: COMPLETED ·Phase: NA
-
Dementia Caregivers and Contemplative Practice: A Pilot Study
NCT06075329 ·Status: COMPLETED ·Phase: NA
-
Systematic Care for Informal Caregivers of Dementia Patients: An Efficient Approach?
NCT00147693 ·Status: COMPLETED ·Phase: NA
-
Exploring the Effectiveness the Attitude, Competence of Care, Empathy Among the Home Care Workers With Dementia People
NCT05541575 ·Status: COMPLETED ·Phase: NA
-
A Study on Self-Compassion,Depression,and Quality of Life Among Primary Caregivers of People With Dementia
NCT06301269 ·Status: RECRUITING
-
Feasibility Study of Project Carer Matters for Family Caregivers of Persons With Dementia
NCT05205135 ·Status: UNKNOWN
-
Care Planning for a Loved One With Dementia: Knowledge, Preparing for Decisions, and Emotions
NCT05165186 ·Status: RECRUITING ·Phase: NA
-
Mindfulness-based Lifestyle Modification Programme for Caregivers of People With Neurodegenerative Disorders: A Pilot Randomised Controlled Trial
NCT06583018 ·Status: ACTIVE_NOT_RECRUITING ·Phase: NA
-
Exploration of an Online Education Program to Support Caregivers' Knowledge Transfer
NCT07377331 ·Status: RECRUITING ·Phase: PHASE1
-
Self-compassion and Quality of Life After Dementia Diagnosis
NCT06465173 ·Status: COMPLETED
-
Sharing the Outcome of a Memory Assessment
NCT04935060 ·Status: COMPLETED ·Phase: NA
-
Volunteers Adding Life in Dementia
NCT01646723 ·Status: COMPLETED ·Phase: NA
-
A Simulation Training Program for Person-Centered In-Home Dementia Care
NCT06850883 ·Status: COMPLETED ·Phase: NA
-
In-Home Technology for Dementia Caregivers
NCT03828383 ·Status: COMPLETED ·Phase: NA
-
Telephone Support for Dementia Caregivers
NCT00735800 ·Status: COMPLETED ·Phase: PHASE2
-
Improving Mood and Behavior in Assisted Living Residents Through Skills Training for Their Caregivers
NCT00255866 ·Status: COMPLETED ·Phase: PHASE2/PHASE3
-
Intervention Programs for Decreasing Caregiver Burden in Caregivers of Patients With Dementia
NCT02397980 ·Status: UNKNOWN ·Phase: NA
-
Efficacy of VR Educational Program on Empathy and Attitudes Toward Dementia in Caregivers
NCT06072274 ·Status: COMPLETED ·Phase: NA
-
Supporting Family Caregivers With Technology for Dementia Home Care
NCT02483520 ·Status: COMPLETED ·Phase: NA
-
Self-Care Training for Family Caregivers of Persons With Neurodegeneration
NCT06200909 ·Status: RECRUITING ·Phase: NA
-
Achieving Patient-Centered Care and Optimized Health In Care Transitions by Evaluating the Value of Evidence
NCT02354482 ·Status: COMPLETED
-
Use of Socially Assistive Robots for Long Term Care Older Adults With Cognitive Impairment and Apathy
NCT05178992 ·Status: COMPLETED ·Phase: PHASE1/PHASE2
-
Developing and Testing a Brief Mindfulness Just-in-time Adaptive Intervention for Reducing Stress of Dementia Caregivers
NCT07714681 ·Status: COMPLETED ·Phase: NA
-
MEMORA-Caregiver : Risk Factors of Caregiver Burden Among Patients With Neurocognitive Disorders or Subjective Cognitive Complaint
NCT02825732 ·Status: COMPLETED
-
The Talking Sense Communication Programme for Dementia Carers
NCT01481363 ·Status: COMPLETED ·Phase: PHASE1/PHASE2