The West of England AHSN is proud to support the work of Join Dementia Research. During its launch year, the West has led the way in encouraging people to register their interest with this ground breaking service in taking part in clinical research into dementia.
As 16,000 people registered with the service across the country in its first year, the West provided the largest local share, with over 1,400 registrations.
Local volunteers like Hilary Doxford make the difference. Hilary, aged 56, was diagnosed with early onset Alzheimer’s disease in 2012, and has since thrown herself into working to help others with the disease, through charities and by being a member of the World Dementia Council. She is also currently taking part in three research studies, one of which is looking at brain inflammation as dementia develops.
“When I was diagnosed I wanted to find out more about the condition,” says Hilary. “I wanted to know whether to stop working or whether I only had limited time left. I wanted to make lifestyle decisions and I wanted to find out what research I could take part in.
“I love being involved in research. I am well looked after, have interesting discussions and gain an insight into the latest theories. I am aware of the latest results and it keeps my brain active.”
Hilary also says research participation has given her a better understanding of the disease progression than she might otherwise have had.
Only one in three dementia research studies recruit enough volunteers within a year, precisely why the register can be such a valuable resource for researchers in their search for potential study participants. There are currently 17 dementia studies open in the West of England.
Join Dementia Research: the lowdown
Challenge
Dementia is one of the biggest challenges we face today. It is only through research that we can understand what causes dementia, develop effective treatments, improve care and hopefully one day find a cure. For research to progress we need more people to take part in more studies.
Strategy
Join Dementia Research is a register of people, with and without dementia, who are potentially willing to participate in studies. In the West, we have taken the message to the streets and are working with NHS, primary care and academic partners to ensure that researchers promote the system and use it to its full capacity.
Results
The West has become the most successful network in the country, with 1,400 registrations. By March 2016, 18% of those recruited to dementia studies in the West were recruited via Join Dementia Research. The target for the launch year was 3%.
