Down Syndrome Awareness and Patient-Centered Care
Down syndrome is a genetic disorder that affects about 400,000 Americans. Every year, around 6,000 babies are born with the condition, who experience developmental delays and various physical disabilities.
With so many friends and family members affected, Down Syndrome Awareness Month is a time when we raise awareness of the disorder and examine how healthcare professionals can best care for these patients who have special needs.
What is Down syndrome?
People with the characteristics of Down syndrome, also known as Trisomy 21, have appeared in art and literature for hundreds of years, but it was John Langdon Down, an English doctor, who first published a scholarly work that described a person with Down syndrome in 1866. Down is considered the “father” of the syndrome; the doctor went on to become an advocate, opening a hospital that treated individuals with developmental and intellectual disabilities.
The syndrome cannot be prevented, but it can be detected before a child is born.
Down syndrome happens when a baby is born with a duplicate chromosome 21. Babies normally inherit 23 chromosomes from each genetic parent, for a total of 46; people with Down syndrome have 47. The extra genetic material causes mental and physical delays in the child’s development.
People with Down syndrome have physical characteristics such as a flat facial profile, an upward slant to the eyes, small ears, and a protruding tongue. Physical and mental development is delayed, but with some extra help, most Down syndrome kids lead healthy lives.
Occupational therapy assistants frequently work with Down syndrome patients. OTAs help people with Down syndrome master skills for independence through self-care like feeding and dressing, fine and gross motor skills, school performance, and play and leisure activities.
Related resource: 10 Reasons Occupational Therapy Assistants Love Their Work
Life with Down syndrome
There are a lot of misconceptions about people with Down syndrome, who have the same need to feel valued as anyone else. People with Down syndrome can read and write, live and work independently, form friendships, and fall in love and get married.
Being a kid isn’t easy, and being a kid with Down syndrome is especially hard. Down syndrome kids love to play and make friends as much as anyone, but they reach goals at a different pace. This is why it’s important not to compare children with Down syndrome with typically developing kids — or even with other children with Down syndrome. Extra patience, smiles, and affection go a long way for kids with Down syndrome.
Adults with Down syndrome are still able to live full lives, including having relationships and meaningful work. In this BBC piece, Sara Pickard, who has Down’s syndrome, says, “the big bosses don’t always necessarily know what people with learning disabilities are capable of doing.” In fact, large companies regularly hire people with Down syndrome, and non-profit organizations do, too. Many people with Down syndrome in the U.S. graduate from high school and go on to live independently with limited help from family and friends.
Down syndrome shortens life expectancy to about 50 years, though many people live into their 80s; by contrast, the national average is 78 years. Additionally, nearly all people with Down syndrome develop the plaques and tangles in the brain associated with Alzheimer’s disease, although only half of them display Alzheimer’s symptoms.
Related resource: The Importance of Diversity in Healthcare Programs
Tips for providing care for people with Down syndrome
When it comes to providing care to people with Down syndrome, it helps to be aware of their common health conditions. These include the following:
- Vision or hearing deficits
- Thyroid function
- Celiac disease
- Sleep apnea
- Gastroesophageal reflux
Additionally, people with Down syndrome are prone to wandering off, are stubborn or have impulsive behavior, and may have trouble paying attention.
When working with patients who have Down syndrome, use a people-first approach and treat them as you would any other patient. That means thinking of the person first, not their disability; asking before giving assistance; avoiding pity and not patronizing; and treating them as you would want to be treated.
At Ameritech, all of our programs are taught with a holistic, person-centered approach. We place a premium on compassion and clear communication. Visit our website to learn more about our accredited programs and dedicated faculty.