Celebrating 10 years of Alzheimer’s Research UK’s Dementia Research Infoline

Here at Alzheimer’s Research UK, this week we are celebrating the 10th birthday of our Dementia Research Infoline which supports people looking for more information about dementia and dementia research.  

With 1 in 2 people in the UK affected by dementia, it is important that we provide our service users with up-to-date and reliable information. Over the past decade, 40,500 enquiries have been handled by our Information Officers, covering topics such as: 

• dementia symptoms, causes, risk factors and treatments. 
• information about how to get a dementia diagnosis and why an accurate diagnosis is important. 
• research evidence behind media reports. 
• how people can register their interest in taking part in research studies. 

‘I’ve been diagnosed with Alzheimer’s, what treatments are available?’ 

‘My mum has dementia and I’m worried about my future risk’ 

‘How can I reduce my risk of dementia?’ 

We provide free,  accessible, and evidenced-based dementia health information available as booklets, web pages, animations and articles. 

Many people contact our Infoline with questions about research. Research enables scientists to learn more about dementia and the diseases that cause it, to find effective ways to diagnose and prevent it and to ultimately work towards a cure.  As an organisation, we wouldn’t be here without volunteers taking part in research and clinical trials.  

‘How can I take part in dementia research?’ 

‘I don’t have dementia, can I take part?’ 

‘Where do research studies take place?’ 

‘Will I have to have a brain scan?’ 

Our Infoline helps people register to take part in dementia research studies across the UK.  

• We register people over the phone and via post to the Join Dementia Research service, and signpost to specific trials.   
• We support existing volunteers, updating their medical information and contact details to ensure that  they can take part in appropriate opportunities.  
• We explain what is involved in studies that people have matched to and what the aims of a particular study are to help them decide whether they would like to get involved.  

What is involved in taking part in dementia research? 

Anybody aged 18 and over living in the UK can take part in vital dementia research studies.  People with dementia, their carers and people without dementia all have an important role to play in research.   

There are lots of opportunities to take part in different types of research study. For example:  

• Online studies with questionnaires and memory and thinking tests to investigate risk factors for dementia.  
• Face to face studies to investigate different ways of diagnosing dementia, like brain scans and blood tests.  
• Interview studies to learn more about experiences of looking after someone with dementia. 
• Trialling new treatments and therapies for dementia.  

You can read more and register your interest in taking part in research here. 

‘I will definitely be signing up to take part in research and you've made me feel a little better about my situation’ 

‘I didn’t know that I could get involved in research, my doctor didn’t tell me about any studies’ 

‘I’m unable to leave my house often, I’m glad I can take part in online studies’  

Jessica, an Information Officer working on the Infoline, says:

“Only 1% of people who could take part in clinical trials for dementia research do so. It can take around 3 years just to recruit enough participants to a dementia clinical trial. When you compare this to a clinical trial in cancer research, the entirety of which can be completed in just over 2 years, the importance of informing willing volunteers how to get involved is clear.”

Over the past 10 years, almost 10,000 people have registered to take part in research through our Information Services team. By helping to enhance our understanding of dementia, research volunteers will help to support Alzheimer’s Research UK’s vision of a world free from the fear, harm and heartbreak of dementia.  

And recently interest in taking part in research has grown. April 2024 saw the busiest month ever for Infoline, when we handled a record number of enquiries following the announcement of the Blood Biomarker Challenge.  This highlights just how many people are willing to take part in studies and propel dementia research forward. 

Contacting the Dementia Research Infoline 

If you have any questions about dementia, dementia research and taking part, or would like to order free information we’d be happy to help.    

You can find out more about the Dementia Research Infoline here or contact 0300 111 5111 (9-5pm Monday-Friday) email:  infoline@alzheimersresearchuk.org