With the advent of better treatment, developmentally disabled children with Down's Syndrome are able to become adults with special needs. But a gap in services exists; few evidence-based guidelines are available for those in the medical field who care for aging Down's individuals. The United States Preventative Services Task Force has not issued guidelines. Recommendations come instead from expert opinion and limited studies.
Screening Shouldn't Be the Same as Everyone Else
Some screening might follow the guidelines the general public is subjected to. Regular dental visits, pelvic exams and mammograms might require careful preparation because of they are difficult for some Down's Syndrome patients to tolerate. Infection checks for STDs are important if sexual activity is likely. Care providers should not give light sedation to this population during procedures without an awareness that over half are subject to sleep apnea due to their characteristic facial structure.
Attention to Physical Vulnerabilities is Warranted
Down's Syndrome males are at risk for testicular cancer. While congenital heart defects are likely to be detected in early childhood, aortic regurgitation and mitral valve prolapse can affect the cardiac health of older Down's Syndrome patients. Hypothyroidism can look like early onset dementia, and might be difficult to diagnose if a physician is unaware of the propensity for it in this population. Hearing loss and cataracts develop early for many with Down's Syndrome. Autoimmune diseases such as diabetes and celiac disease occur at a much greater frequency with Down's Syndrome than in the general population. Many doctors do not understand the wide spectrum of symptoms that can manifest with celiac disease, an intolerance to gluten protein found in wheat, barley, and rye. Gluten intolerance compromises nutrient absorption and causes inflammation of the skin as well as the bowel. Screening X-rays of the cervical spine to detect atlantoaxial instability can avoid problems for those who are active in the Special Olympics.
Psychosocial Vulnerabilities Should be Addressed as Well
The childhood of most people with Down's Syndrome is characterized by parent advocates and home care. Adults with autonomy must navigate insurance use and referrals to specialists. Down's Syndrome patients may be less able than others to speak for themselves. The office of the primary provider should be a friendly place that simplifies these problems. Case management in the treatment of obesity, socialization, abuse or neglect, and depression is critical to holistic care. The Dementia Screen for Down's Syndrome (DSDS) is a specific tool that can be applied by a licensed psychologist, making early intervention more effective.
As Down's Syndrome populations age, their healthcare should keep pace. Research is needed to fill the gaps. Those involved in the care of these individuals have to educate themselves in the meantime.
Reference:
Leigh Wilson, DO, MPH, Preventative Care for Adults With Down Syndrome, American College of Preventative Medicine, January 1, 2010
Mary Earhart - Mary Earhart, RN, BSN, is a Licensed Midwife. She has written articles for professional journals and grants for non-profit agencies as ...
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