Celebrating a decade of answering your questions about dementia

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RS545_Alex_Wallace_Photography_ARUK_Rebrand_Day1_423 (1)

By Alzheimer's Research UK | Monday 10 June 2024

The year 2014 – a decade ago – was a notable year for many reasons. An unmanned spacecraft landed on a comet, Scotland held an independence referendum, Germany won the men’s football World Cup for the fourth time, and Conchita Wurst won the Eurovision Song Contest with ‘Rise like a Phoenix’.

But for us at Alzheimer’s Research UK, it was notable for another reason: we launched our Dementia Research Infoline.  Since 2014, the team running the line have been providing information about dementia and dementia research to the public. And today marks 10 years since they took their first call.

The Dementia Research Infoline was launched to coincide with the arrival of a new NHS service, Join Dementia Research. The Infoline provides helpdesk support to register people wanting to take part in research studies over the phone. At the time, the charity was facing an increasing number of enquiries about dementia and dementia research, so the Infoline was tasked with handling these questions as part of its remit too.

Today, the Dementia Research Infoline plays a crucial role in Alzheimer’s Research UK’s wider work to improve public understanding, awareness, and tackle misconceptions about dementia and dementia research. Providing accurate, accessible and up-to date information empowers people to seek support and take action, whether that be speaking with a doctor about memory concerns or taking steps to look after their brain health.

Frequently asked questions

Since that first call, Infoline has answered 40,500 enquiries over the last decade. This includes handling over 25,000 calls and 6,000 emails, the two most common enquiry types. The Infoline team also responds to questions via social media, the Alzheimer’s Research UK website, and letters.

Over a third of the questions the Infoline get about dementia are from people who have concerns about symptoms, and want to know more about getting a diagnosis.

These enquiries can be from family or friends who have noticed changes in their loved one,  or from those noticing symptoms in themselves. Often, people experiencing dementia symptoms are reluctant to visit their GP.  So, an important part of this conversation is to highlight that often memory and thinking problems can be caused by lots of different conditions, including thyroid disorders and vitamin deficiencies, which are easily detected and can be treated.

Katie, who has worked on the Dementia Research Infoline for seven years, says providing information to empower people at what can be a very vulnerable time, is “not only a privilege but very important to get right.”

“The importance of supporting people to take that first step in the dementia diagnosis pathway should not be underestimated,” she says.

“Often, all people need is an understanding of what tests will be done and the reassurance that a diagnosis of the diseases that cause dementia, like Alzheimer’s, isn’t an inevitable outcome of visiting their GP. But also, that diagnosing any health condition, including dementia, is really important.”

Questions about research

In the decade since the Dementia Research Infoline launched there have been many memorable breakthroughs in dementia research. Many people want to know how they can get involved in research, often following media stories about breakthroughs in treatment.

Since 2014, the Infoline team have signed up over 10,000 people to Join Dementia Research, helping them to take part in research. But the support they offer doesn’t end there – to date they’ve handled 20,300 total enquiries about taking part in research, explaining how the research process works and tackling misconceptions about what volunteering in research involves.

The Infoline has been on the frontline, responding to the public’s questions about research that has hit the headlines. So, let’s take a look into the three busiest weeks the Infoline has experienced in the last 10 years.

The busiest week on record for the Infoline was in September 2016, which saw the announcement that a clinical trial testing the drug aducanumab, was looking for volunteers. Aducanumab had been shown in earlier research to slow down the progression of early-stage Alzheimer’s disease.

As one of the first Alzheimer’s drugs tested in a large scale clinical trial, this marked a turning point in research into treating Alzheimer’s disease. The Infoline responded to nearly 550 enquiries that week, and signed up 336 people to Join Dementia Research, spending 112 hours on the phone.

Six years later in September 2022, the results from a large clinical trial testing a similar drug, lecanemab, were released. These results revealed that lecanemab could slow down the progression of early-stage Alzheimer’s disease by 27%, resulting in the Infoline handling 407 enquiries in one week.

Similar to aducanumab, interest in getting involved in dementia research spiked with this news, and the Infoline signed up 301 people to Join Dementia Research that week.

And, in early April 2024, the Infoline experienced it’s second busiest week on record when the research studies involved in the Blood Biomarker Challenge were announced. This stimulated widespread interest in getting involved in research, leading to 470 enquiries and the busiest Join Dementia Research registration week on record with 375 people signed up to take part.

Jess Gibson, Information Officer working on the Infoline says “the spotlight these announcements put on dementia research are vital in raising awareness about the importance of volunteering in research studies. The sheer amount of people who contacted us following the Blood Biomarker Challenge announcement in April, shows just how many people are willing to help us propel dementia research forward.”

These landmark moments in dementia research are becoming increasingly common as we edge closer than ever to life changing treatments for the diseases that cause dementia. The Dementia Research Infoline plays a key role in connecting the public with this vital dementia research and information about dementia itself.

Here’s to another 10 years of the Infoline providing accurate, accessible and up-to date information for the public!

If you have any questions about dementia or dementia research then please get in touch with the Dementia Research Infoline team on 0300 111 5 111 or email infoline@alzheimersresearchuk.org

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Alzheimer's Research UK