New Attitudes Enhance Care of Adults with Down Syndrome

Along with the good news that the life expectancy of people with Down syndrome has more than doubled since the 1950s comes a unique set of health care management challenges.

On average, infants born with Down syndrome now live into their mid-fifties. Some medical conditions occur more commonly in adults with Down syndrome, but their response to those conditions can make diagnosis and treatment more difficult.

David S. Smith, MD, is a proponent of a modern-day attitude and holistic practices on the part of physicians, family members and others who interact with people with Down syndrome. "Improved health care is probably the biggest reason for the increased life expectancy," said Dr. Smith, Medical Director of the Down Syndrome Clinic of Wisconsin.

"There's a much greater willingness now to say that we're going to take care of their other medical conditions, not just shove them off and let them die," said Dr. Smith. "For example, heart conditions and serious gastrointestinal problems used to be ignored in people with Down syndrome."

"There are a number of issues involved in health care management for people with Down syndrome. There are the physical issues, and there are issues with the thought process, or cognitive delay. For example, people with Down syndrome may have trouble reading; they have trouble with math. And they have trouble with language, more so with expressive language than with receptive language."

Still, Dr. Smith said, most people with Down syndrome function well in the community for many years of adult life. "Usually, as adults, people with Down syndrome can hold some kind of job. They may need some assistance with this, some more than others. They can live on their own - not completely on their own, but usually with some assistance, some in groups homes and some more independently," he said.

High Incidence of Other Conditions
Down syndrome occurs in about one in every 1,000 live births, according to the Centers for Disease Control and Prevention (CDC), affecting about 250,000 families in the US. It is a congenital condition caused by "trisomy" in human chromosome number 21, which means that in Down syndrome there is an extra chromosome.

An article by Dr. Smith in the journal American Family Physician (September 15, 2001) listed some of the conditions that occur more frequently in adults with Down syndrome. These include obesity, high rates of thyroid disease (hypothyroidism and hyperthyroidism), diabetes, depression, obsessive-compulsive disorder, physical or sexual abuse, obstructive sleep apnea, spinal cord compression, loose joints and ligaments, periodontal disease, Alzheimer's disease, cataracts and other vision-reducing conditions, seizures, testicular cancer, dry skin, and acquired valvular heart disease. Still, most are healthy. They have very low rates of most cancers and hardening of the arteries.

"Good health care for people with Down syndrome comes down to attitude," said Dr. Smith. "The attitude is changing. We're saying, 'they've got the other condition, let's take care of it.' When physicians see adults, especially, if there's something else going on with them there has been a tendency to say that it's because they have Down syndrome and not to look beyond that. Not every loss of function in an adult with Down syndrome is due to Alzheimer's disease. It usually isn't!"

People with Down syndrome can appear to have behavior problems when they actually have underlying medical conditions, Dr. Smith said. They often withdraw within themselves when in pain, which can make it hard for physicians or family members to pinpoint the problem, especially when coupled with the lessened ability to provide accurate statements about how they're feeling. Others may act out and become more aggressive.

"Adults with Down syndrome can have all of the different illnesses that everybody else gets," said Dr. Smith. "Some they get more commonly. But even knowing that, too often the tendency is still to attribute the problem to Down syndrome."

Overall, a Much Better Picture
In his American Family Physician article, Dr. Smith provided specific treatment recommendations to physicians to take into account the overall impact of Down syndrome. Equally, if not more importantly, he said, are inclusion efforts that help people with Down syndrome maintain social connections, changes in mindset that provide for a more holistic healthcare approach, and conscious efforts to take away the stigma that once accompanied Down syndrome to a very high degree.

"I've noticed in just the sixteen years that I've been in Milwaukee that, particularly in pediatrics, there is less tendency to put everything on Down syndrome. There's still a ways to go. And we're starting to see an improvement with regard to adult patients. I did a survey a few years ago and found that physicians really wanted to help but just didn't have the information they needed."

"That's a big part of it. The number of people with Down syndrome in the adult practices of health care providers is very small, and it's not talked about much in medical school or residency. So I was pleasantly surprised that physicians in the survey were so interested in learning more, especially since they have to make an extra effort to get the information that's out there."

The "old days" of caring for adults with Down syndrome included a disproportionate amount of money spent on putting people into "colonies" where they were segregated from society, friends and family, Dr. Smith noted. National groups and local support systems have worked in recent years to foster inclusion, supporting his view that meaningful involvement in social and family activities and more job opportunities enhance the prospects for successful health care management.

"Overall, the picture for adults with Down syndrome is much better," said Dr. Smith. "The attitude is better. People with Down syndrome aren't being hidden away any more."

Dan Ullrich
HealthLink Contributing Writer

For more information, visit the web page of the Down Syndrome Clinic of Wisconsin at Children's Hospital.

MCW Health News presents up-to-date information on patient care and medical research by the physicians of the Medical College of Wisconsin.