Individuals with Down Syndrome are living much longer than ever before. The average life expectancy of a person with Down Syndrome in the 1980s was 25 years, and it has now increased to 60 years old, thanks to increased research into the condition and the subsequent better care many receive. Recently, the Global Down Syndrome Foundation released a guide for families about how the disorder may impact their loved one’s medical care as they age.
The guide is based on recommendations from elite experts in the field and was published as a scholarly article in the Journal of American Medicine in October 2020, after a multi-year peer review. Today, we’re taking a closer look at the guide.
Top Scientists and Down Syndrome Researchers Develop New Recommendations For Adults with Down Syndrome
The authors of the study on how Down Syndrome affects adults as they age is a collaboration between eight of the largest Down Syndrome medical centers in the country, including the University of Pittsburgh Medical Center, Kennedy Krieger Institute at Johns Hopkins School of Medicine, and the Anschutz Medical Campus School of Medicine at University of Colorado.
The GLOBAL Guideline is intended for clinicians working with patients with Down Syndrome and addresses nine critical areas for better health:
- Behavioral Health
- Cardiovascular Disease
- Atlantoaxial Instability
- Thyroid Issues
- Celiac Disease
Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation (GLOBAL), expressed her pleasure about the study results and how their guideline was published in JAMA. “We are deeply grateful to our families and self-advocates for pushing us to work on this difficult project… Now we can focus on collaborating with other Down Syndrome and disability organizations as well as medical institutions to ensure clinicians are following our Global Guideline and measuring outcomes,” said Michelle.
The guideline contains four statements of good practice for clinical care providers and 14 recommendations by the GLOBAL researchers. Some of the new recommendations align with current best practices for patients with Down Syndrome, while two are distinctly different. The two recommendations that differ from previous studies are based on recent Down Syndrome research that urges clinicians to screen individuals for diabetes earlier and more frequently.
One of the most critical parts of the GLOBAL guideline is the necessity for patients with Down Syndrome to begin Alzheimer’s screening starting at age 40 and screening for diabetes earlier than the general population.
The Global Down Syndrome Foundation Creates a Special Version of the Report For Families
GLOBAL has issued a family-friendly version of the guide, condensed into about one-quarter of the clinician’s length, simplifying the recommendations for families to understand. It includes recommendations for care specific to people with Down Syndrome and how that advice differs from that for other aging adults. “We created the guidelines following the highest standards so that we could be published in JAMA,” said Michelle Sie Whitten, “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.”
The revised, condensed guide is available on the Global Down Syndrome Foundation’s website and is available for free to download. Moving forward, the Foundation is working on updating the guidelines to include more information about other concerns for older adults with Down Syndrome, such as vision or other eye issues, physical and occupational therapy for aging adults, gentle fitness recommendations, sleep apnea, and certain blood cancers.
Families may use this guide to work with their loved one’s care provider to order specific tests for diseases that may be more prevalent in those with Down Syndrome or to note when to start screening for diabetes and Alzheimer’s.