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.

Eligibility

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

Conditions6

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