Lived Experience Narratives in Dementia

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.

Interventions

• Online LEND Intervention · BEHAVIORAL

  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.

Published eligibility criteria

Verbatim from the registry. Only the site can decide how these apply to a specific patient.

General Inclusion Criteria (apply across WP1-WP3)

* Adults aged 18+.
* Able to give informed consent and participate meaningfully in the required tasks.
* Adequate communication ability in the required study language

General Exclusion Criteria (apply across WP1-3)

* 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

Sites (2)

• Mental Health & Clinical Neurosciences, Institute of Mental Health, Nottingham, England, United Kingdom · RECRUITING
• Nottinghamshire Healthcare NHS Foundation , Highbury Hospital, Nottingham, United Kingdom · RECRUITING