A picture of a female nurse in a blue medical room, she is wearing dark blue scrubs and a light blue lanyard. Her hair is in a pony tail and she is smiling, directly looking into the camera

How a network of nurses is changing the dementia clinical trials landscape in the UK

 

By Laura Rooney, Lead Research Nurse, Alzheimer’s Society

In partnership with UK Dementia Trials Network (UKDTN), Alzheimer’s Society is investing £3 million into establishing a dedicated nationwide network of Dementia Research Nurses. This pilot programme aims to revolutionise accessing and taking part in clinical trials for people living with dementia.

Dementia is the biggest health and social care challenge of our time, putting unsustainable pressure on our NHS, our social care system, and our economy.

We urgently need new ways to diagnose and treat dementia for everyone living with the condition, and clinical trials are the only way to determine whether new drugs and interventions are safe and effective.

Right now, it can be difficult for people living with dementia to access or even find out about clinical trials in the UK, although research led by Alzheimer’s Society and UKDTN shows that most people are open to hearing about research opportunities.

We surveyed people with lived experience of dementia (either people living with dementia or carers) and over 90% think clinical trials and research should be discussed as a standard part of dementia treatment and care. However, around 80% of people living with dementia reported that they had no discussions about taking part in dementia research or clinical trials with their clinician.

What are we doing to help?

Every person living with dementia deserves the chance to be a part of research that could change their future. This is why Alzheimer’s Society is collaborating with the UK Dementia Trials Network (UKDTN) to launch the first-ever UK-wide Dementia Research Nurses network.

Our ambition is to bring cutting edge trials to the right people in the right place so that anybody who wants to can take part in research.

About the programme

Working within individual NHS sites, and collaboratively across the UK, the Alzheimer’s Society UKDTN Research Nurses will operate as a network of experts in dementia clinical research delivery. Through building crucial relationships and links with NHS practitioners, dementia specific services and local communities, they will work to accelerate set-up of, and recruitment into, vital dementia clinical trials, changing the landscape of clinical research delivery across the UK.

Research Nurses will also work to broaden the diversity of participants, ensuring that people from under-represented groups have access to research opportunities. This means diversity in all its forms including people from socioeconomically deprived backgrounds, people with multiple conditions, and those who live in rural or coastal communities.

Partnership with the UK Dementia Trials Network (UKDTN)

In 2024, the National Institute for Health and Care Research (NIHR) announced £49.9 million in funding to develop a nationwide network of dedicated dementia research centres, aiming to make the UK a go-to place to carry out dementia early phase clinical trials. Working within the NHS, these centres will accelerate the delivery of early-phase clinical trials through the UK Dementia Trials Network (UKDTN).

As the UK’s leading dementia charity, Alzheimer’s Society is best placed to create and grow the first ever UK-wide network of dedicated Dementia Research Nurses. Our nurses will be working within around 20 UKDTN sites across the four nations to support the delivery of dementia early phase clinical trials and embed research into everyday dementia care within the NHS.

investment in the workforce

The UKDTN’s Workforce & Training workstream aims to enhance workforce development and retention through coordinated training, mentorship, career pathways, and partnerships that strengthen skills and capacity for effective dementia trial delivery.

Workforce capability is essential to the success of dementia clinical trials. UKDTN is committed to building a sustainable, skilled, and resilient workforce that supports site readiness, individual growth, and national trial delivery.

The Alzheimer’s Society UKDTN Research Nurses network is an essential part of the ongoing initiatives which fall under this workstream.

Find out more about the programme by visiting the Alzheimer’s Society website: https://www.alzheimers.org.uk/research/our-research/alzheimers-society-dementia-research-nurses 

Find out more about the UKDTN by visiting https://www.ukdtn.org/