Alzheimer’s Society UKDTN Dementia Research Nurses

According to the NIHR Clinical Research Network, in 2023/24

Less than 1% of people diagnosed with dementia were recruited to early-stage research trials – a tiny proportion of the nearly one million people currently living with dementia.  

Dementia is the UK’s biggest killer, and we urgently need to develop new ways to diagnose and treat this condition. Clinical trials are the only way to know if new approaches and drugs work, and they are vital for driving progress towards breakthroughs.  

But right now, it can be difficult for people living with dementia to access, participate in, or even find out about clinical trials in the UK. We know that there aren’t enough dementia trials available in the UK, and they can be difficult to navigate, especially for people from under-represented backgrounds.

Everybody living with dementia should have the opportunity to decide whether they want to take part in a clinical trial. Yet today that rarely happens, and we must do better.  

What are we doing to help?

This is a critical time to build the capacity and community we need to enable people to get involved in trials and support them throughout.  

In collaboration with the UK Dementia Trials Network (UKDTN), Alzheimer’s Society is investing £3 million into a three-year Dementia Research Nurse pilot programme. We will establish a national team of dedicated Dementia Research Nurses to revolutionise the research experience for people living with dementia. 

Together, we'll provide more fulfilling opportunities for people to take part in clinical trials and other types of dementia research across the UK.  

Our new pilot scheme will put dedicated Dementia Research Nurses on the frontline of the NHS, widening access to research opportunities for all, and providing critical support throughout the research journey.

- Laura Rooney, Lead Research Nurse at Alzheimer’s Society

About the programme

Our new pilot scheme will get nurses on the ground recruiting people from as many different communities and backgrounds as we can into clinical trials, providing support throughout their research journey. 

The nurses will be embedded within the NHS, where they will be best positioned to offer support to patients, and form relationships between researchers and healthcare providers.  

Alzheimer’s Society UKDTN Research Nurses programme aims to:

1. Increase the number of people taking part in dementia clinical research studies within the NHS - championing a patient centred, inclusive approach.
2. Tackling barriers which prevent people taking part in clinical trials; focusing on bringing people from a range of backgrounds into dementia research.
3. Raise awareness of the importance of clinical research in improving people's experience of dementia diagnosis, care and treatment.    
4. Support people through their research journey so they have the best possible experience. 

Partnership with the UK Dementia Trials Network 

In 2024, the Government announced £49.9 million of funding to develop a nationwide network of dedicated dementia research centres. These will work within the NHS to accelerate the delivery of early phase clinical trials for dementia - 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 UK to support the delivery of dementia clinical trials and embed research into everyday dementia care within the NHS.

Led by Professor Cath Mummery, the UKDTN’s overarching vision is to establish the UK as a ‘go-to’ place for early clinical trials in dementia. It will do this by significantly boosting the UK’s capacity and ability to recruit to and deliver trials.  

There is an urgent need for transformative approaches in dementia research and clinical trials. Access to research and experiences of taking part in research vary hugely and can be difficult to navigate. 

We have to change the system to ensure everyone with dementia has the opportunity to be involved in research, regardless of geography or demographics.

- Professor Cath Mummery