The American Academy of Pediatric Dentistry (AAPD) reports that approximately one in five US children has special health-care needs,1 which it defines as “any physical developmental, mental, sensory, behavioral, cognitive emotional impairment or limiting condition that requires medical care.” There is a direct correlation between the severity of such patients' health status and the likelihood that their dental needs are not being met; increasing awareness can improve dental hygienists' ability to provide care for persons with special needs, such as Down syndrome.
- At higher risk for oral disease, patients with Down syndrome require specialized oral care instruction
- Reducing stress for dental patients with Down syndrome
- A call to action: Remove a barrier to dental care for patients with developmental disabilities—you!
Down syndrome is a genetic disorder caused when abnormal cell division results in an extra or partial copy of chromosome 21, also called Trisomy 21. According to the Centers for Disease Control and Prevention (CDC), “Down syndrome continues to be the most common chromosomal disorder. Each year, about 6,000 babies are born with Down syndrome, which is about 1 in every 700.”2 When considering maternal and child health, older mothers are more likely to have a child with Down syndrome.2
General characteristics of Down syndrome
Individuals with Down syndrome have distinctive physical features. Mayo Clinic reports, “Common features include: 1) flattened face, 2) small head, 3) short neck, 4) protruding tongue, 5) upward slanting eyelids, 6) unusually shaped or small ears, 7) poor muscle tone, 8) broad, short hands with a single crease in the palm, 9) relatively short fingers, small hands and feet, 10) excessive flexibility, 11) tiny white spots on the colored part (iris) of the eye called Burchfield spots, and 12) short height.”3
Down syndrome medical considerations vary from individual to individual. As part of the medical history for a Down syndrome patient, it is important to be aware that the population has a high incidence of congenital heart disease and language, vision and hearing problems. The CDC reports that approximately “50% of all babies born with Down syndrome have a congenital heart defect. Major medical considerations reported by the CDC include hearing loss (up to 75%), obstructive sleep apnea (50–75%), ear infections (between 50%–70%), eye diseases such as cataracts (up to 60%), eye issues requiring glasses (50%), and intestinal blockage at birth requiring surgery (12%).”2 Many of these conditions may require surgery and consultation with the case manager or medical provider recommended prior to dental procedures.
People with Down syndrome can experience many oral manifestations of the disorder. They have delayed eruption patterns, malocclusion, tooth anomalies, and bruxism. They tend to have poor oral hygiene and are at a high risk for periodontal disease and xerostomia. They also have large tongues that are fissured, enlarged (macroglossia), and protrude outwards.4 Other associated conditions are gum disease, malocclusion, missing teeth, severe attrition, mobility of teeth, congenitally missing teeth, and delayed eruption.
Tooth surface abrasion may be present due to bruxism related to anxiety and emotional distress. The result of severe abrasion may lead to temporomandibular joint disorder, sensitivity, and pain. Bowen and Pieren report that bruxism may be a type of self-stimulation.5
A larger tongue may make it more difficult to obtain x-rays with a gag reflex. An alternative plan may be to consider a panoramic image. Clients with Down syndrome can get irritable or agitated when they get confused; administration of nitrous oxide can assist with relaxation.
The prevalence of periodontal disease for Down syndrome clients is related to risk factors such as lack of professional care, lack of finances to support regular dental care, compromised autoimmune status, and poor hygiene. Educating the care provider about the value of regular preventive care is critical, as most clients with Down syndrome have a high caries risk.5
During the initial appointment with a Down syndrome client, gather information regarding their daily living skills, their diet (ability to chew), and level of cooperation. Inquire what time of day is the best for scheduling appointments and whether the client requires public or private transportation. Often it is best practice to schedule the client with the same clinician during the same time of the day, as routine helps to remove social and emotional stress.
Down syndrome individuals may present with mild, moderate, severe, or profound intellectual development (ID). Bowen and Pieren define mild ID as an IQ of 50-75 (approximately 85% of the population), moderate ID as IQ of 35-55, severe ID as IQ of 20-40, and profound ID as IQ of less than 20.5 Persons with mild intellectual development may be living independently or semi-independently, as they are able to learn simple skills. Dental professionals providing oral health instructions should explain and demonstrate the oral health activities rather than only discussing concepts. These clients are able to provide their own care, but may need reminders from supportive staff. Public acknowledgment and reward for progress is a behavior modification.
Moderate IQ clients would more likely be living in a group setting with a primary care provider that supports and supervises daily activities. These individuals will present with few academic skills and have poor hand and finger coordination. Clinicians should keep the instructions very basic, using show-and-tell instruction. During clinical procedures, it is best if clinicians explain each step providing positive re-enforcement of desired behaviors. These clients most likely will have a care provider attending their appointment, and including the care provider in the oral health instruction and self-care is critical.
Severe/profound IQ clients generally will live with their family or in a residential group home. These clients learn by repeating procedures and movements. Some individuals will be incapable of self-care and require consist supervision. Generally, care providers are responsible for clients’ daily activities, providing general and oral hygiene care. It is critical to include care providers in oral health and post-operative instructions. Caregivers are providing extensive services, and the responsibilities are challenging. Keeping your instructions simple and manageable increases the likelihood that caregivers will be able to support your request. Oral health care may not be the most important aspect of clients’ daily-required care.
As a final consideration, your goal should always be to build a strong, supportive relationship. Regardless of their IQ, talk directly to the patient about their care, rather than directing your conversation to the care provider. People with Down syndrome are content and loving by nature, and they will thrive from knowing that they are accepted and valued.
- Management of dental patients with special health care needs. American Academy of Pediatric Dentistry. Updated 2021. https://www.aapd.org/research/oral-health-policies--recommendations/management-of-dental-patients-with-special-health-care-needs/
- Data and Statistics on Down Syndrome. Centers for Disease Control and Prevention. Updated December 16, 2022. https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html
- Down syndrome. Mayo Clinic. March 8, 2018. https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20355977
- Miller C, Rhodus NL, Treister NS, Stoopler ET, Kerr AR. Dental management of the medically compromised patient. 10th ed. Mosby; 2023.
- Bowen DM, Pieren JA. Darby and Walsh’s Dental Hygiene. 5th ed. Saunders; 2019.