Scientists call for East Anglian volunteers to take part in pioneering dementia research

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By Alice Tuohy | Tuesday 04 December 2018

East Anglian researchers are seeking volunteers to take part in vital dementia research studies through the Join Dementia Research initiative. The projects hoping to shed more light on dementia include a major study looking into the links between sleep problems and genetic risk factors for the condition.

Join Dementia Research is a service that allows people to register their interest in taking part in research studies across the UK.  Over 38,000 people have now signed up to the initiative which is funded by the Department of Health and Social Care and delivered in partnership with the National Institute for Health Research, Alzheimer Scotland, Alzheimer’s Research UK and Alzheimer’s Society.

Scientists at the University of East Anglia are exploring the link between sleep problems and an Alzheimer’s risk gene called APOE4. Sleep problems are common in people with Alzheimer’s disease, the most common cause of dementia, and this study is taking a closer look at whether these problems affect individuals without dementia who carry this risk gene.

The study, which is recruiting volunteers through Join Dementia Research, will ask those taking part to fill in questionnaires on their sleep and general wellbeing as well as completing memory tests. Volunteers will also be asked to use wearable technology, a small watch-like device, to measure sleep patterns as well as complete a diary of how they slept at home.

Dr Alpar Lazar, at the University of East Anglia, who is leading the sleep study said:

“We are looking for hundreds of volunteers in the Norwich area without dementia between the ages of 40-90 to take part in research investigating the links between risk genes for Alzheimer’s disease and sleep problems. Unravelling this link is key to helping design potential interventions that may stoppeople developing the disease.

“Wearable technology is transforming the way we research the links between sleep and dementia and could be a powerful tool when used in a larger number of people. This study is a fantastic opportunity for people to help power vital dementia research while they sleep!”

Another dementia research study seeking volunteers through Join Dementia Research is based in Chelmsford and involves talking to caregivers of people living with dementia. The study is specifically looking to find out about the experiences of family carers in black, Asian and minority ethnic (BAME) communities and their relationships with their GP.

Dr Zainab Al-Attabi from Anglia Ruskin University, who is heading up the research, said:

“Dementia can be particularly stigmatised within BAME communities which is something that needs to change. Carers volunteering to take part in this research will give valuable insights into how we can improve the management of BAME individuals living with dementia and how they can better access services. We urgently need to see more people from BAME communities take part in research in the region and this study provides a great opportunity for people to get involved.”

You can register your interest in taking part in the studies by ringing Alzheimer’s Research UK’s Dementia Research Infoline on 0300 111 5111 or by visiting

Hayley Smith, a passionate research volunteer, said:

“I’m incredibly enthusiastic about taking part in research. It’s easy to get involved in, easy to do and can take as little or as much time as you want. It makes me feel like I’m doing something positive in a situation that is anything but positive.”

Dr Laura Phipps, from Alzheimer’s Research UK, said:

“Volunteering for dementia research can be rewarding and you don’t have to have dementia to get involved. Volunteers are vital for helping to get important research studies off the ground and Join Dementia Research provides a simple way for them to do this.

“Alzheimer’s Research UK is here to help you sign up or talk you through any queries you may have. You can give us a call on 0300 111 5 111, 9am to 5pm Monday to Friday.”

About the author

Alice Tuohy