New resource available to caretakers of adults with Down syndrome

New resource available to caretakers of adults with Down syndrome

In an effort to fill the gap in resources available to caretakers of aging individuals with Down syndrome, the Global Down Syndrome Foundation recently published a new booklet: Medical Guidelines for Adults with Down Syndrome.

Over the last 40 years, medical and technological advances have significantly improved the quality of life for individuals with Down syndrome, with the average life expectancy increasing from 25 to 60 years. This is wonderful news for the Down syndrome community – but it also means that there are new frontiers for those who care for individuals with Down syndrome as they advance in age. That’s where the Global Down Syndrome Foundation hopes the Guidelines can help.

Based on a research study from 2020 that was published in collaboration with the Global Down Syndrome Foundation, Medical Guidelines for Adults with Down Syndrome was produced to illuminate what aging adults with Down syndrome and their caretakers can expect. The team at the Global Down Syndrome Foundation hopes the booklet will be a valuable resource to caretakers of adults with Down syndrome, enabling them to better understand the challenges that lie ahead and how they can be overcome.

Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation, shared about her goals for the distribution of the Guidelines:

“We created the guidelines following the highest standards so that we could be published in JAMA [the Journal of the American Medical Association]. We are taking it to the next level and empowering adults with Down syndrome and their families to understand the guidelines and to advocate for them with their medical providers.”

In the future, the Global Down Syndrome Foundation plans to expand the scope of the Guidelines to include additional information about topics such as sleep apnea, blood cancers, solid tumor cancers, vision and eye issues, physical therapy, fitness, and more. The Medical Guidelines for Adults with Down Syndrome is now available for free download on the Global Down Syndrome Foundation’s website here.

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