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Improving the Quality of Life for People Living With Dementia and Carers: The Design and Development of a Dementia Specific Online Narrative-Based Intervention With a Feasibility Study

Status: Recruiting

Location: See all (2) locations...

Intervention Type: Behavioral

Study Type: Interventional

Study Phase: Not Applicable

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

Participation Requirements

Sex: All

Minimum Age: 18

Maximum Age: 99

Healthy Volunteers: t

View:

• Adults aged 18+.

• Able to give informed consent and participate meaningfully in the required tasks.

• Adequate communication ability in the required study language

Locations

Other Locations

United Kingdom

Mental Health & Clinical Neurosciences, Institute of Mental Health

RECRUITING

Nottingham

Nottinghamshire Healthcare NHS Foundation , Highbury Hospital

RECRUITING

Nottingham

Contact Information

Primary

Linda E O'Raw, PhD

linda.o'raw@nottingham.ac.uk

07791598280

Backup

Mark Howells

mark.howells@nottshc.nhs.uk

Time Frame

Start Date: 2025-11-17

Estimated Completion Date: 2029-07

Participants

Target number of participants: 60

Treatments

Experimental: Online LEND Intervention

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.

No_intervention: Treatment as Usual

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.

Related Therapeutic Areas

Alzheimer's Disease

Dementia

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