Dementia affects over 850,000 people in the UK and 700,000 carers, often leading to loss of identity, reduced quality of life, and "excess disability".
About the LEND project
Dementia affects over 850,000 people in the UK and 700,000 carers, often leading to loss of identity, reduced quality of life, and "excess disability."
Support gaps are particularly stark for disadvantaged and minority groups. Research shows that personal stories can improve coping and wellbeing.
Building on the successful NEON study in mental health, this project will develop the Lived Experience Narratives in Dementia (LEND) Intervention, an online platform of diverse first-person stories from people with dementia and carers. Stories will be safely collected, culturally tailored, and accessible via text, audio, and video, with filters to help users find personally meaningful accounts.
Two clinical trials will evaluate LEND's benefits and cost-effectiveness for people with dementia and their carers. A Lived Experience Advisory Panel will co-develop the intervention, ensuring cultural competence, relevance, and impact.
Who we are
We are a mix of academics, clinical psychologists, psychiatrists, economists, statisticians, technologists, and people with lived experience of dementia. The project lead is Professor Martin Orrell, who is the Director of the Institute of Mental Health at the University of Nottingham.
Professor Martin Orrell
University of Nottingham
Professor of old age psychiatry and Director of the Institute of Mental Health. Expertise in dementia care research, complex intervention development, digital interventions for people living with dementia, outcome and well-being interventions, programme leadership, and complex psychosocial trials. Experience as a family carer for my mother who had dementia.
Professor Mike Slade
University of Nottingham
Clinical psychologist with expertise in mental health recovery, complex interventions, lived experience narratives and systematic review. Also adds expertise as Chief Investigator NEON programme.
Professor George Christopher Fox
University of Exeter
Old age psychiatrist with expertise in dementia, development and evaluation of complex interventions, digital platforms. Lead of feasibility study WP3.
Professor Rhiannon Tudor Edwards
Bangor University
Health economics, cost consequence evaluations, dementia health economic evaluations. Lead of health economic evaluation.
Dr Zoe Hoare
Bangor University
Interim director of NWORTH CTU, principal senior statistician with expertise in design, methodology, statistics and experience in dementia trials and programme grants.
Professor Neil Coulson
University of Nottingham
Registered health psychologist, expertise in psychosocial aspects of chronic illness, intervention development and behaviour change, systematic reviews. Joint lead of work package 5.
Professor Praminda Caleb-Solly
University of Nottingham
Computer science, machine learning, technologies to assist people with age related disabilities and long term conditions. Joint lead of LEND Intervention work package 2.
Dr Claudio Di Lorito
University College London
Qualitative research, process evaluation, realist methods, PPI, dementia, inclusion of people who identify as LGBT+ in research. Lead of process evaluation.
Dr Stefan Rennick-Egglestone
University of Nottingham
Joint lead for development of LEND Intervention work package. Rennick-Egglestone has experience of digital intervention development, the use of lived experience narratives in health research and practice, and a background that encompasses trial management, systematic reviewing, human computer interaction research, and research data management practice. He has personal experience as a carer for a relative with dementia for 10 years, including as the primary carer for three.
Dr Fiona Ng
University of Nottingham
Expertise in mental health, behaviour change, qualitative methods, developing programme theory. Lead of programme theory work package 1. Named Point of Contact for Training with success in 3 fellowship awards.
Mrs Morag Whitworth
University of Nottingham
I am a member of the PPI group 'Dementia, Frail Older People and Palliative Care' which is facilitated by The School of Health Sciences at the University of Nottingham. The group reads and comments on many research proposals that are presented to the group by researchers at all levels for comment and advice - some have gone no further, some have been funded. I have been a member of the group for around 6 years and have been involved in a number of projects during that time.
The Project started
June 2024
The Project will end
May 2029