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Compared to the general population, individuals with Down Syndrome have a much higher risk of developing Alzheimer’s Disease, and a higher risk of developing the disease at a youger age. In the general population, research has indicated that higher education levels, socialization, and physical activity all play a significant role in delaying the onset of Alzheimer’s Disease. The privilege of higher education, socialization, and physical activity is not always available to children with Down Syndrome, so these potential benefits have not been specifically evaluated in the Down Syndrome population with respect to protection against Alzheimer’s Disease. We hypothesize that individuals with Down Syndrome who have access to these services at an early age, particularly higher education, experience protection from or delay in the onset of Alzheimer’s Disease.

To test this hypothesis, we have constructed a survey with 83 questions regarding general health, family history, education, socialization, and physical activity history of the individual with Down Syndrome, followed by The Lawton Instrumental Activities of Daily Living Scale and the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities. The survey is available online through Survey Monkey and intended to be completed by a parent or caregiver of the adult with Down Syndrome. We are including the survey with this letter.  The individual with Down Syndrome for which we are collecting information must be over 18 years old. All information collected will remain anonymous.

In order to complete this research and provide the intended benefits to the Down Syndrome community as a whole, it is important that we gather as many responses to this survey as possible.  Click below for a link to the survey.

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