Lived Experience Narratives in Dementia (LEND) Work Packages 1-3
The Lived Experience Narratives in Dementia (LEND) study wants to understand what life with dementia is truly like, from the perspective of those living with it and their carers. By gathering these powerful stories, the study aims to create an online learning tool. This tool will help people explore real-life experiences, fostering greater understanding and improving care. The project involves various activities, from surveys and interviews to rating stories and group discussions. Eventually, an online tool will be designed and tested to see if it can genuinely improve quality of life and wellbeing for people with dementia and their carers. The study is run by Nottinghamshire Healthcare NHS Foundation Trust and funded by the National Institute for Health and Care Research (NIHR).
At a glance
What is this study about?
The LEND study, which stands for "Lived Experience Narratives in Dementia," is all about understanding what life is like for people living with dementia and those who care for them. The researchers believe that real-life stories are incredibly powerful and can help everyone – from healthcare professionals to family members – better understand dementia.
The main goal of this study is to gather these personal stories and use them to create a special online learning tool. This tool will be designed to share these experiences in a way that helps people learn, build empathy, and ultimately improve the care and support offered to those affected by dementia. It's hoped that by hearing directly from people, we can make services and understanding much better.
Over the next few years, the study will involve different steps to make this happen. First, they'll explore how stories about dementia are used and what makes them helpful. Then, they'll design and build the online tool, asking people to test it out. Finally, they'll check if the tool works well enough to be used more widely, hoping it can make a real difference to people's quality of life.
Key takeaways
- The study collects real-life stories about dementia.
- It aims to create an online learning tool to share these experiences.
- The goal is to improve understanding, empathy, and care for people with dementia.
- Participation involves activities like surveys, interviews, or testing the online tool.
- Adults with dementia or their carers can take part.
- The study hopes to benefit future dementia care.
Who may be eligible?
To take part in this study, you need to be an adult, 18 years old or older. You must either have a diagnosis of dementia yourself, or be a carer for someone who lives with dementia.
It's also important that you are able to understand what the study involves and can give your consent, which means you agree to take part freely. The study welcomes all genders.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you 18 years old or older?
- Do you have a dementia diagnosis, or do you care for someone with dementia?
- Are you able to understand the study information and willing to agree to take part?
- Do you live in the UK?
What does participation involve?
If you decide to take part in the LEND study, what you'll be asked to do depends on which part of the study you join. Some activities might involve filling out online surveys about how you use technology and look for stories. Others might include having an interview with a researcher to talk about your experiences with stories, or taking part in group discussions, especially if you're from certain communities.
You might also be asked to rate different types of stories, perhaps saying which ones you found most helpful or how you preferred to see them (like written, video, or audio). Later on, if you're involved in testing the online tool, you might try out early versions of it and give your feedback on what you think. For the final part of the study, some participants will complete questionnaires about their wellbeing at the start and then again after six months to see if using the online tool has made a difference. Some people who use the tool might also be invited for an interview to share their longer-term thoughts. The study is expected to run from December 2025 to December 2027.
Potential risks and benefits
Locations (1)
- Nottinghamshire Healthcare NHS Foundation TrustCity onlyNottingham, England
Common questions
What is the main goal of the LEND study?
The main goal is to collect real-life stories about dementia to create an online tool that helps improve understanding and care for people living with dementia and their carers.
Who can take part in this study?
Adults aged 18 and over who have a diagnosis of dementia or care for someone with dementia can take part. You also need to be able to give your consent.
What will I have to do if I join?
Depending on the part of the study, you might fill out surveys, have interviews, join group discussions, rate stories, or test an online tool and give feedback.
Will I be paid for taking part?
The study information doesn't mention payment for participants. It's best to ask the contact person for details on this.
Where is this study taking place?
The study is run by Nottinghamshire Healthcare NHS Foundation Trust in the UK, but many activities could be done remotely, like online surveys or interviews.
How to find out more
Linda O'Raw
Always speak to your GP or specialist before deciding to take part in a study.
Discussion
Community discussion
Powered by our forum at community.patient.info. Please be respectful — this is not medical advice.