Dementia affects not only memory and cognition, but identity, relationships, confidence, and wellbeing. In this blog, Linda O’Raw, LEND Programme Manager, writes about the Lived Experience Narratives in Dementia (LEND) Programme. For many people, the period following diagnosis can feel particularly isolating, with limited support focused on how to live well with the condition.

The LEND Programme was created to address this gap, by placing the voices of people with dementia and carers at the heart of research and innovation.

LEND is a 5-year, NIHR-funded research programme led by the University of Nottingham. The programme is developing and testing a new online, narrative-based intervention. It is designed to support people living with dementia and those who care for them.

The study is about recognising that people living with dementia and carers are experts in their own lives. Their experiences are not just stories. They are vital sources of knowledge that can transform how we support people and their families.

What is LEND investigating?

LEND is investigating real stories shared by people with dementia and carers. It investigates how this will improve quality of life and wellbeing. LEND explores whether stories can help people feel understood, less alone, and more able to make sense of their experiences.

The study is examining:

  • How people with dementia and carers engage with narratives
  • Which types of stories feel most relevant and supportive
  • How stories can foster hope, identity, autonomy, and coping
  • Whether an online narrative-based resource is acceptable, usable, and beneficial

Why this area of research matters

Dementia research has focused on symptoms, treatments, and service delivery. While vital, this can leave a gap in understanding the human experience of living with dementia day to day.

We chose to research this area because people affected by dementia tell us that emotional support is lacking. This is especially true after diagnosis. Narratives offer a way to address this need in a low-cost, accessible, and person-centred way.

Importantly, stories also challenge stigma. They show that life with dementia is not one single story. It shows many diverse experiences shaped by culture, relationships, personality, and circumstance.

Why personal experience is central to LEND

Personal experiences from people with dementia and carers are not treated as anecdotes in LEND. They are treated as evidence, and what they tell us is treated as valuable information.

Using lived experience allows us to:

  • Design support that reflects real needs, not assumptions
  • Capture diversity in how dementia is experienced
  • Ensure the intervention supports dignity, identity, and autonomy
  • Build tools that feel meaningful rather than prescriptive

What are we hoping to achieve?

We are hoping to develop an intervention that embraces empathy, meaning, and shared humanity. It is delivering selected lived experiences of people living with dementia.

LEND aims to:

  • Develop an evidence-based online narrative intervention for people living with dementia and carers
  • Improve quality of life and wellbeing for people with dementia and carers
  • Reduce isolation and strengthen a sense of connection and hope
  • Ensure future dementia support is shaped by lived experience
  • Lay the groundwork for wider NHS and community implementation

The role of Join Dementia Research

Recruitment is essential to meaningful research. Join Dementia Research has been instrumental in supporting the LEND Programme.

Join Dementia Research connects researchers with people who want to take part. It ensures there is transparency, choice and ethical engagement.

It has helped LEND:

  • Reach a wide and diverse group of potential participants
  • Reduce barriers to participation
  • Support inclusive and public-facing research

To other researchers considering using Join Dementia Research: it is an invaluable platform. It supports ethical recruitment and promotes public involvement. It helps ensure that studies are shaped by the people they are designed to help. Most importantly, it shows the principle that research works best when people are partners, not just participants.

Your story matters. Your experience matters.

Log in to your Join Dementia Research account to check whether you have been invited to take part in a study. Or, if you are not already registered, sign up today.