Multidisciplinary Clinic Offers Comprehensive Adult Care

The average life expectancy for persons with Down syndrome is now 56 years, more than double what it was a few decades ago. Some people with the condition survive into late old age — the oldest known individual with Down syndrome recently died at age 84 years. The dramatic increase in life span is not because of new technologies or drugs, but because “we are now addressing medical conditions such as congenital heart defects that once went untreated in these patients,” explains UAB geneticist Edward J. Lose, MD.

Down syndrome is associated with a host of medical complications, including thyroid disease, obstructive sleep apnea, diabetes, visual and auditory defects, testicular malignancies, leukemia, and mental illness. Although many clinics are dedicated to the care of children with Down syndrome, comprehensive, expert care for adults is scarce.

“Once individuals with Down syndrome reach 21 years, their options start dwindling. Patients are at risk for the many medical conditions related to Down syndrome and for common adult disorders such as hypertension,” says Lose, who directs UAB’s newly established Adult Down Syndrome Clinic, one of only a few such clinics in the United States. “Clinicians who care for adults may not have experience with the complex medical needs of Down syndrome patients. Communication also is an issue: People with Down syndrome often have intellectual disabilities and problems with expressive language that make communication challenging.”

Preventing Decline
The Adult Down Syndrome Clinic grew out of interactions with Parent Advocates for Down Syndrome, a local support group that approached UAB with concerns about specialized care for their adult children.

All individuals older than 40 years with Down syndrome have the amyloid plaques and neurofibrillary tangles characteristic of Alzheimer’s disease, but only a minority develop the condition. Many more, however, experience functional declines that can look like Alzheimer’s disease, but deterioration often results from a treatable, reversible disorder. “Depression and obsessive-compulsive disorder, for example, are common and may present atypically in people with Down syndrome,” Lose says. “A thorough, expert evaluation of signs and symptoms associated with the deterioration is necessary to avoid missing potentially reversible causes of decline.”

The Adult Down Syndrome Clinic brings together experts from multiple disciplines to provide comprehensive care for patients. The clinic offers patients access to psychologists; social workers; audiologists; nutritionists; occupational, speech, and physical therapists; and others. In addition to providing ongoing monitoring and the latest treatments for the medical complications of Down syndrome, the clinic is addressing psychosocial concerns and evaluating behavioral and living skills. Lose also hopes to enlist a volunteer financial planner who can help patients’ parents set long-term fiscal goals.

“Our aim is to serve as a resource for the 500-plus adult Down syndrome patients in the region as well as for referring physicians who care for these individuals,” says Lose, who encourages colleagues in the community to contact him with questions about adult Down syndrome patients.

For more information:
Dr. Edward Lose
1.800.UAB.MIST
mist@uabmc.edu