Support for dementia research at all-time high as Covid pandemic inspires involvement

The public's willingness to participate in dementia research is at an all-time high, according to new research, which also shows an increased appetite for involvement in medical research more broadly because of the Covidpandemic.

More than two-thirds (69 per cent) of respondents to a survey by the Alzheimer’s Research UK said they were willing to get involved in dementia research in 2021.

This is up from 50 per cent in 2018 - an increase that could be partly driven by the Covid pandemic.

Since the pandemic hit in March last year, more than 500,000 people across the UK have volunteered for Covid studies to help scientists tackle the virus.

And in separate research by Alzheimer’s Research UK, 29 per cent of adults said they were more likely to get involved in medical research because of the pandemic.

It comes ahead of World Alzheimer’s Day on 21 September.

Alzheimer’s Research UK has called on the public to register their interest in supporting cutting-edge medical research into dementia.

The findings are released ahead of the full results from Wave 2 of the charity's Dementia Attitudes Monitor, the most comprehensive regular monitor of public perceptions into dementia and research, which will launch on World Alzheimer’s Day.

The Monitor includes data from 2,259 interviews conducted by Ipsos MORI between 18 June and 19 July 2021 and was funded by The Perfume Shop.

Last year, more than 16,000 people were recruited into dementia research studies through Join Dementia Research, an online and telephone system that matches volunteers to dementia research studies across the UK – the highest number since the programme started in 2015.

The Dementia Attitudes Monitor found that for 1 in 10 of UK adults willing to get involved in dementia research, the main reason they gave was that they had "seen the importance of medical research during the COVID-19 pandemic".

The most popular reasons were that "research is the only answer to dementia’ (46 per cent) and "I have a family member or friend affected" (23 per cent).

Hilary Evans, CEO of Alzheimer’s Research UK, said: “The Covid pandemic had a devastating impact on many people across the UK, not least those with dementia and their families who were some of the hardest hit.

"This research suggests that the shared experience of having come together to help science overcome coronavirus has given people greater trust in and appetite for medical research in general.

She added: "This is positive news for the thousands of studies waiting to get underway to help understand and tackle health conditions like dementia, cancer, and heart disease.

There are currently 78 different research studies looking for volunteers on Join Dementia Research, including a study at Newcastle University funded by Alzheimer’s Research UK that is helping to develop a digital toolkit to detect the diseases that cause dementia years before symptoms occur.

Volunteers over the age of 40 with a diagnosis of dementia or mild cognitive impairment and a carer or family member will be asked to use smartphone apps and wearable devices, like watches and headbands, to collect data about their everyday lives and behaviour.

While the pilot study will not be able to estimate a volunteer’s risk of developing dementia, it aims to understand if these types of technology would be useful and acceptable in the research study aiming to explore these devices as a future approach to detect diseases like Alzheimer’s at an early stage.

Minister for Innovation, Lord Bethell, said: “The scale and speed of research in the UK is unparalleled and has been vital in our fight against Covid. It has led to vaccines, better treatments and improved care, ultimately saving thousands of lives. It’s brilliant to see a rise in public support for medical research and as we look forwards, the public’s involvement remains vital in driving forward new innovative technology and improving our understanding of diseases, particularly Alzheimer’s.

“I encourage people to continue to get involved and support efforts to tackle diseases beyond the pandemic taking part in online surveys or focus groups, having scans, or volunteering in clinical trials for new drugs.”

Doug Banks, diagnosed with posterior cortical atrophy (PCA) at the age of 56, said: “With this rare form of dementia, it is very important to me to be able to take part in research. I have taken part in different types of research, including clinical trials, studies both static and longitudinal and practical tests like mechanical tests and ultra-high resolution brain scans."

He added: “In general, and particularly during the Covid pandemic, I have found great comfort and solace in the fact that the clinical trial I was in was carrying on. It was so important to me that the trial was still prioritised despite the pandemic.

“Making the 200-mile each way round trip to London from my home in Cheltenham to take part in the research played a significant role in keeping me motivated and mentally resilient during lockdown. I am testament to the fact that research is offering hope for people living with all forms of dementia, including rarer diseases like PCA, and I strongly encourage people with and without dementia to get involved too.”

Join Dementia Research is delivered in partnership by the National Institute for Health Research, Alzheimer’s Research UK, Alzheimer Scotland and Alzheimer’s Society and funded by the Department of Health and Social Care. Anyone with and without dementia can register their interest in taking part in research studies by signing up at www.joindementiaresearch.nihr.ac.uk or calling 0300 111 5111.