RecruitingNAINTERVENTIONAL

Lived Experience Narratives in Dementia

The LEND (Lived Experience Narratives in Dementia) study is exploring how real-life stories from people with dementia and their carers can be used to help others. The main goal is to create an easy-to-use online tool that shares these personal experiences. Researchers believe these stories could boost hope, confidence, and emotional support, ultimately improving quality of life. The study involves several stages: first, understanding how people use stories and digital tools, then developing and testing the online tool to make sure it's helpful and easy to use. If successful, it could lead to a larger trial to see how well the tool works.

At a glance

Status

Recruiting

Phase

Sponsor

University of Nottingham

Enrolment target

Start

17 Nov 2025

Estimated completion

01 Jul 2029

Dementia Neuro-Degenerative Disease Alzheimer Disease Caregiver Burden Caregiver Burnout

What is this study about?

The LEND study, which stands for "Lived Experience Narratives in Dementia," is a new research project funded by the NIHR. It aims to develop a special online tool designed to help people living with dementia and their family carers. This tool will share personal stories and experiences from others who are also living with dementia or caring for someone with the condition.

The main idea behind LEND is that hearing accessible, relatable, and diverse stories can provide hope, build confidence, encourage independence, and offer emotional support. Ultimately, the goal is to improve the overall well-being and quality of life for those affected by dementia. The research will first look at how people with dementia and their carers currently use stories and digital tools, then create the online tool, and finally test how well it works and how easy it is to use.

This study is happening in stages. The first steps involve speaking to people through interviews and surveys to understand their needs and experiences. This information will help build the online tool. Once the tool is developed, it will be tested with a small group of people to make sure it's user-friendly and helpful. If these early stages are successful, the team hopes to do a larger study to confirm its benefits and make it available more widely.

Key takeaways

The LEND study aims to create an online tool sharing real-life stories to support people with dementia and their carers.
It hopes to improve well-being, confidence, and emotional support through shared experiences.
Participation might involve surveys, interviews, or testing the new online tool.
The study is particularly keen to include a wide range of people, including those from under-represented groups.
All participation is voluntary, and you can withdraw at any time without affecting your care.

Who may be eligible?

To be part of this study, you need to be an adult aged 18 or over. It's important that you can understand what the study involves and give your permission to take part. You also need to be able to communicate effectively in the study's language, which is English for this UK-based trial.

There are some reasons why you might not be able to join. For example, if you are currently staying in a hospital or other healthcare institution for a long period, you wouldn't be able to participate. Also, if you're unable to give your informed consent, or if understanding the study information or communicating meaningfully is difficult, then you wouldn't be eligible.

The study is particularly keen to include people from a variety of backgrounds, including those from Black and South Asian communities, LGBTQ+ individuals, people who developed dementia at a younger age, and those with rarer forms of dementia.

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?
Can you understand information about the study and give your permission to take part?
Are you able to communicate comfortably in English?
Are you currently living at home, rather than in a hospital or care institution?

Answer every question to see your result.

What does participation involve?

Taking part in the LEND study could involve different activities, depending on which part of the research you join. You might be asked to complete online or paper surveys about how you use social media or online resources. Another part of the study involves semi-structured interviews, where you'd have a guided conversation about your experiences with dementia and how personal stories might help.

If you take part in testing the new online tool, you might be asked to try it out and give feedback on how easy it is to use and how helpful you find it. There will also be some follow-up interviews to understand your experiences over time. All participation is designed to be as comfortable and manageable as possible, and the study team will explain everything clearly before you decide to take part. The exact time commitment would depend on your specific involvement, but you'll be given all the details upfront.

Potential risks and benefits

Taking part in this study could offer several potential benefits. By sharing your experiences, you would be helping to shape a new online tool designed to support others living with dementia and their carers, potentially improving their well-being. It's also an opportunity to contribute to valuable research that could make a real difference. As with any research, there are minimal risks; some questions might touch on sensitive topics, but you would never have to answer anything you're uncomfortable with. Your privacy and personal information will be protected. Remember, your participation is completely voluntary, and you are free to withdraw from the study at any time, for any reason, without it affecting your care or your relationship with your healthcare team.

Locations (2)

Mental Health & Clinical Neurosciences, Institute of Mental Health
Verified postcode
Nottingham, United Kingdom· Recruiting
Nottinghamshire Healthcare NHS Foundation , Highbury Hospital
Verified postcode
Nottingham, United Kingdom· Recruiting

Common questions

What does 'Lived Experience Narratives' mean?

It means real-life personal stories and accounts from people who have experienced dementia themselves, or from their family carers.

What is the online tool and how will it work?

It will be a digital platform, possibly an app or website, that shares these personal stories to offer support, hope, and practical advice to people affected by dementia.

Will I have to travel for this study?

Many parts of this study, like surveys and online interviews, can be done from your home. Any in-person activities would be clearly explained beforehand.

Is this study only for people with Alzheimer's disease?

No, this study is for people living with any type of dementia and their carers, including rarer forms of dementia.

What happens to my personal stories if I share them?

Your stories would be used to help develop the online tool and inform the research. Your privacy is very important, and your personal details would be kept confidential and anonymised as appropriate.

How to find out more

Linda E O'Raw, PhD

linda.o'raw@nottingham.ac.uk 07791598280 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.