24 Days Meme V1Welcome to the latest news from ‘Join dementia research’, the new service connecting volunteers and researchers on studies into dementia research.

Today is another update from #24DaysOfDementiaResearch where we highlight a single study that is recruiting right now on ‘Join dementia research’.

We talked to Dr. Tamara Al-Janabi, who is part of a a team from University College London called The London Down Syndrome Consortium (LonDownS).

They are looking into what might be causing some people with Down Syndrome to develop Alzheimer’s Disease later in life, whilst others do not.

She told us that “People with Down Syndrome are disproportionately affected by dementia – up to half the Down Syndrome population can develop dementia as they age.”


Aims of the Study

Some researchers believe that when Alzheimer’s develops in people with Down Syndrome, it could be due to their individual genetic or biological background.
It could also be down to their unique mental abilities, or their social situation, or any combination of all these factors.

“The ultimate goal of the LonDownS study is to identify why some people with Down syndrome are more predisposed to develop dementia whereas others may be relatively protected”, Doctor Al-Janbi explained.

We hope that this information will not only allow us to develop an intervention to help people with Down syndrome before they develop dementia – but that our findings will be beneficial and informative to medicine for dementia in the population at large.”


How Does it Work?

We asked Dr. Al-Janabi how the research was carried out

“As the Study Coordinator, I work mainly with the group that assesses adults with Down syndrome.
We do puzzles and games with our participants to gauge their abilities and also gather some medical information and  samples for analysis in our labs.

Another team does a similar battery of tests with small children with Down syndrome, where the tasks have been adapted so they are age-appropriate.”


Get Involved

For inclusion in the study, researchers would like to meet individuals with a diagnosis of Down Syndrome from the two age ranges specified – 6 to 60 months (5 years), or over the age of 16.

Please also see an introduction to the project for those with Down Syndrome.
Anyone who feels they meet the requirements should sign up with ‘Join dementia research’ on the right of this page, and see what other studies they may be eligible for.


Let Us Know

We love hearing from participants in ‘Join dementia research’ studies. What can you tell us about your experiences, and what would you tell people who might be thinking about joining?

E-mail us on comms.jdr@nihr.ac.uk, and follow us on Facebook and Twitter for more updates.