Alzheimer’s Society Dementia Research Nurses

There is an urgent need for widespread, accelerated progress in dementia research. To help with lifechanging discoveries, the dementia clinical trial landscape needs to change. Alzheimer’s Society is committed to making the hope of new treatment breakthroughs a reality.  

About the programme

Alzheimer's Society invested £3 million into a three-year pilot programme to establish a national team of Dementia Research Nurses, to drive forward change within the dementia research landscape across the UK.

Dementia research and clinical trials are vital for driving progress and breakthroughs which, in the future, will translate into impactful treatments, diagnostic options, and care interventions for people living with dementia.

However, dementia research in the UK lacks the infrastructure to make a real difference. Currently in the UK, dementia trials face poor levels of participation, are slow to recruit, and have a disappointing lack of diversity among those who do take part - with inadequate levels of support for them during the experience.  

Across the UK, only 2% of people with dementia are registered to hear about clinical trial opportunities.  

Based on global averages, it’s projected that over 12,000 people with dementia who are eligible aren’t currently participating in British trials.  

To help solve this issue, Alzheimer’s Society has launched a three-year pilot programme to revolutionise the dementia clinical research landscape in the UK. The programme aims to establish a national team of Dementia Research Nurses, who will focus on identifying and working with suitable people with different types of dementia with the aim of supporting them to take part in clinical trials and research which they may be eligible for.  

Alzheimer’s Society is proud to be fully funding these Dementia Research Nurses, under the expert leadership of Lead Nurse, Laura Rooney. 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.  

It’s the opportunity to build something on a national level and give far more people the chance to take part in research. – Laura Rooney, The Lead Nurse 

Currently, people living with dementia have limited options at the point of receiving diagnosis. We aim to give the power back to people with dementia and be a catalyst to make a real change and difference in their lives.  

Aims of the programme

Everybody living with dementia should have the opportunity to decide whether they would want to take part in a clinical trial or another form of dementia research. Our dedicated dementia Research Nurses will expertly support people with dementia to navigate the nuances around clinical trials, demystifying the process and provide advice and support throughout.

The new nurses will help embed dementia research into the culture of NHS and drive forward the innovative change needed to make a real difference.

The aims of the programme are to: 

  1.  Raise awareness of the vital role of clinical research in improving dementia diagnosis, care and treatment. 
  2.  Increase opportunities for people living with dementia to access clinical research projects where available and appropriate to their care. 
  3.  Increase recruitment into current and planned dementia clinical research studies within the NHS. 
  4.  Work to identify, understand, and reduce barriers to trial participation from the perspectives of people living with dementia to enable and encourage more people from diverse backgrounds to participate in research 
  5.  Support people living with dementia throughout their research journey to ensure they have the best possible experience. 

Dr Richard Oakley, Associate Director of Research and Innovation at Alzheimer's Society, said:  

For too long, there have been staggeringly low numbers of participants in dementia trials and there is an urgent need to address this if real progress is to be made in dementia research.  

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. 

What are research nurses?

Research Nurses are an established role within the NHS. They carry out clinical work and play a key role in the set-up and delivery of clinical research studies.

Research nurses work to identify suitable clinical trials, as well as screen, recruit, and support patients who would like to participate in them.  

As part of their role, a Research Nurse may conduct all clinical aspects of trial delivery from identifying potential patients to taking blood samples, conducting assessments, administrating medications, and conducting follow-up visits.

Alzheimer’s Society Dementia Research Nurses can also help with non-clinical work, such as: 

  • Educating healthcare professionals, people living with dementia, and the public about clinical trials to help progress development of new therapies. 
  • Visit other locations to learn about the best practices on offer to help with clinical research delivery in dementia research. 
  • Support Alzheimer’s Society funded researchers to recruit participants to their studies.
  • Offer expert advice on protocol development of dementia trials.  

Where will the Alzheimer's Society Dementia Research Nurses be based?

In January the Government announced £49.9 million funding for a nationwide network of dedicated dementia research centres, to accelerate the delivery of early phase clinical trials for dementia.

Our Dementia Research Nurses will be embedded at 10 of these funded centres located across the UK and will be absolutely key to ensuring more people are given the opportunity to participate in dementia clinical trials.  

They will make sure people understand and are comfortable with their involvement and keep them up to date with the progress of the studies they are part of. The nurses will also focus on working with local groups and stakeholders to help increase recruitment of people from diverse backgrounds, to ensure new treatments will benefit everybody.  

In April 2024, Alzheimer’s Society appointed Laura Rooney as the Lead Nurse responsible for the delivery of the programme. With the Lead Nurse’s expert help, Alzheimer’s Society will recruit and fund up to 10 dedicated Research Nurses, who will work across various centres in the UK.  

The recruitment will start soon, and we will update this page with all the latest news. 

How can you get involved?

Make a donation to our new Dementia Research Nurses appeal.

If you are interested in participating in research, please visit the Join Dementia Research platform. 

If you are interested in sponsoring programmes like Alzheimer's Society Dementia Research Nurses, please visit our Philanthropy pages for more information.