Researching dementia in Downs Syndrome

The University of Cambridge Intellectual and Developmental Disabilities Research Group (CIDDRG) and the Down’s Syndrome Association (DSA) are undertaking a joint consultation in researching dementia in Down’s Syndrome. They want to know what you think about people with Down’s Syndrome taking part in clinical trials.

Research has identified that people who have Down’s Syndrome from middle age onwards have an increased risk for developing changes in memory and behavior and losing skills; symptoms that are recognised as the features of dementia. A theory for explaining the high risk is called the ‘amyloid cascade hypothesis’.

Researchers identified that a protein (amyloid precursor protein) located on chromosome 21 makes the risk far greater to develop dementia in any person. It is specifically found in people who develop Alzheimer’s disease, which is also the dementia that people with Down’s Syndrome have a high risk of developing.

The questionnaire they have designed has 10 multiple choice  questions and space for additional views. It would like you to imagine a trial drug is being proposed of new medication which alters amyloid in the brain and to answer the questions regarding this trial.

If you would like to fill in the questionnaire, please email us back and we will send it to you. [email protected]