top of page

Clinical Guidelines for Medical Care of Adults with Down Syndrome

Updated: Dec 23, 2022


Doctor talking with patient

The Global Down Syndrome Foundation underwrote and led a broad interdisciplinary effort to create guidelines for medical care of adults with Down syndrome, including considerations for assessing and treating dementia. An abbreviated version of the guidelines has been published in a recent issue of JAMA.

Based on an analysis of a significant number of published studies, 14 recommendations and four statements of good practice were developed. Overall, the evidence base was limited. Only one strong recommendation was formulated: screening for Alzheimer-type dementia starting at age 40 years.

Four recommendations (managing risk factors for cardiovascular disease and stroke prevention, screening for obesity, and evaluation for secondary causes of osteoporosis) agreed with existing guidance for individuals without Down syndrome. Two recommendations for diabetes screening recommend earlier initiation of screening and at shorter intervals given the high prevalence and earlier onset in adults with Down syndrome.

Recommendation 4 of the guidelines notes that "Medical professionals should assess adults with Down syndrome and interview primary caregivers about changes from baseline function annually, beginning at age 40 years. Decline in six domains specified by the National Task Group–Early Detection Screen for Dementia (NTG-EDSD) should be used to identify early-stage age-related Alzheimer-type dementia, a potentially reversible medical condition, or both."

​For a PDF copy of the expanded Global Down Syndrome Foundation version.

bottom of page