With the support of the Down’s Syndrome Association, and with funding from the Medical Research Council (MRC), we have been working together with people with Down’s syndrome and their families and support workers to find out what causes dementia (Alzheimer’s disease), an illness that can affect people with Down’s syndrome at a relatively young age. The hope is that if we understand the cause of dementia in people with Down’s syndrome then, new treatments will be developed that could be started early in life and prevent dementia developing. Many of you have volunteered to have pictures of your brain taken using MRI and PET scanners – this requires lying still in the scanners. Those of you who have done so have felt excited by the experience and very pleased to have taken part.
These brain scans allow us to see if people with Down’s syndrome have too much of a chemical (protein), called amyloid, in their brains. This protein is deposited in the brain in the form of lots of very tiny microscopic ‘plaques’ and are characteristic of Alzheimer’s disease. So far, 34 people with Down’s syndrome have visited Cambridge to have pictures taken of their brains. This has helped us to find out what happens to the brain as people with Down’s syndrome get older. We have found that most people with Down’s syndrome older than 50 have amyloid in their brain. We also found that people with Down’s Syndrome who have dementia had more amyloid in their brain than people without dementia. We still need to learn more about what amyloid does and whether too much amyloid is the likely cause of dementia in people with Down’s syndrome. To do this we NEED your help, and are particularly looking for people with Down’s syndrome in their 40’s, 50’s and 60’s who may be willing to take part.
You can take part in this study if you have Down’s syndrome and are older than 40 years. To find out more about the study, so that you can decide whether you wish to take part, please get in touch with Liam and Tiina either by phone, email or post. Their contact details are below.
More information is available on our project website site, where some of the early results are displayed. There is also a link to a short film, in which one of the participants who helped us with an early pilot study, explains what is involved. Liam and Tiina, can meet you and explain what is involved, using the material we developed with the support from the Down’s Syndrome Association and from participants in our pilot study. You can then decide whether or not you wish to take part.
Contact details for Liam and Tiina
Email: firstname.lastname@example.org and email@example.com
Address: Defeat Dementia in Down’s Syndrome Study, Douglas House, Trumpington Rd, Cambridge, CB2 8AH