The news story

A terrible story hit the news recently. It involved a young man who had Down syndrome who died after receiving dental care. The family of the man has been waiting for justice for four years.

We see too many stories like these: ones involving innocents who die at the hands of people in power who we trust with our loved ones. These stories make us wonder if we are doing all we can to protect our loved ones and the rest of our community.

So, how do we react?

We start with outrage.

Next, we learn all we can in order to hopefully prevent the story from happening again.

When it comes to dental work, caregivers for people with Down syndrome have two major concerns:

  1. Does my child need a special dentist?
  2. How do I get dental care for my child?

What is different about people with Down syndrome?

Some oral differences have been reported.

Some oral signs commonly found in those with Down syndrome include delayed eruption, small or congenitally missing teeth, macroglossia, malocclusion, and periodontal disease. Individuals with Down syndrome are less likely to develop carious lesions. Of those who have Down syndrome and are under the age of 30, 60% to 100% have periodontal disease. – RDH Magazine

It is believed that most dental procedures that are needed by patients with Down syndrome can be performed in a general dental office with minor adaptations.

The National Down Syndrome Society lists gum disease and cavities on the “dental issues” page of their website. They also offer this advice about finding a dentist for adults with Down syndrome:

For adults, general dentists’ comfort levels with some of the unique needs of people with Down syndrome may vary.  A general dentist who has completed a general practice residency, 1-2 additional years after dental school, has extra training in caring for patients with disabilities.  The Special Care Dentistry Association is a resource to find a dentist experienced in treating people with Down syndrome.

You can call your local dental school, because they will typically have residents or faculty who are experienced in caring for people with Down syndrome.

Some hospitals have dental departments and these dentists are typically trained in caring for people with Down syndrome as well.

There is a handout that caregivers can share with their dentist and one that may help at home. Both are published by the U.S. Department of Health and Human Services and the National Institutes of Health.

Why is it hard to get dental care for adults with Down syndrome?

“People with disabilities are often insured through Medicaid, the federal health care program for the poor and disabled. The program doesn’t always pay for dental care, and when it does, those payments often fall short of the costs.

That means it can be hard to find a dentist willing and able to do the work.” – NPR, 2016

Also, because most dental training does not include patients with special needs, providers may be hesitant to treat them. Nair, et. al, 2017.

Some dentists and hygienists who want to help find creative ways to do so.

“A patient with Down syndrome was so frightened that Eslinger started off cleaning his teeth in the lobby. Each appointment moved closer to the treatment room, until finally she persuaded him to get into the chair.” NPR, 2016

The research study

We found a recent study that addressed sedation for people with Down syndrome and “behavior disorders.”

“Psychoprophylaxis for oral conscious sedation for dental care in Down syndrome adults with behavioral disorder.”

Ferrary, Teresita & Sanchez Ratto, Noelia & Martinez, Daniel & Alvarez, Mayra & Lis Bianchi, Maria & Belen Benitez, Maria & Armada, Mariana & Echaide, Maite & Scagnet, Gabriela & Orman, Betina. (2019).  Special Care in Dentistry. 10.1111/scd.12382.

Down syndrome (DS) presents with prevalent diseases in the oral cavity and the need of constant dental care and follow‐up. The use of conscious sedation (CS) for dental care in adult DS with behavioral disorders is poorly documented. The aim of this study was to evaluate the effectiveness and safety of CS procedures with oral midazolam using previous psychoprophylaxis sessions in DS adult patients with behavioral disorders.

Methods: Twenty‐nine DS adults with behavioral disorders. The patients were managed with psychoprophylaxis followed by oral CS using 15 or 30 mg midazolam. Vital parameters were monitored. The Houpt and Brietkopf and Buttner scales were used.

Results: Patients under CS received an initial dose of 15 mg midazolam; however, 51.72% needed a 30 mg dose at the following sessions. Results showed that 71.4% treated with the 15 mg dose had Houpt scale overall behavior scores of 4 or 5, while 93.33% of those receiving 30 mg had scores of 5 or 6 (chi‐square = 15.95 p < .01).

Conclusion: Psychoprophylaxis sessions followed by CS procedures using oral midazolam in adult DS with behavioral disorders were shown to be a useful strategy to perform routine dental treatment safely. Midazolam produces anterograde amnesia, and participants were more cooperative in the following visits.

For those of us who are not in the dental or research professions, I’ll try to break down some of the vocabulary.

First, if you look up psychoprophylaxis, you’re likely to get “Also called Lamaze technique”

The Oxford English Dictionary gives us a more broad definition:

The prevention of disease or promotion of health and well-being by psychological means; especially a method of alleviating pain in labour by psychological training which includes techniques of relaxation and distraction.

Anterograde amnesia is a “partial or complete inability to recall the recent past, while long-term memories from before the event remain intact.”

And for those who want a description of the types of sedation used:

Midazolam – sedative. Can help patients feel relaxed or sleepy before surgery or medical procedures.

Conscious sedation – Procedural sedation and analgesia is a technique in which a sedating/dissociative medication is administered often in combination with analgesics. It allows a patient to undergo painful procedures by inducing decreased levels of consciousness but not requiring intubation as the patient ventilates spontaneously.

Sedation may be minimal, moderate or deep.

Minimal sedation is given only to relieve anxiety, with very little effect on patient awareness, while moderate sedation depresses consciousness, but leaves the patient capable of responding to external stimuli (tactile or verbal). In deep sedation, the patient only responds to painful or repeated stimuli – Dr. Damien Jonas Wilson, MD (

If you would like to see a detailed breakdown of this study, check the slides here.

These researchers concluded that using psychological training and anesthesia that does not put patients completely to sleep is an effective technique for patients who may not want to cooperate with dentists.

How to help adults and caregivers

In addition to the resources we’ve shared here, Special Olympics may be helpful to athletes involved in their programs.

“Special Smiles is the dental health discipline of Special Olympics Healthy Athletes® that provides athletes with intellectual disabilities the opportunity to take charge of their oral health. Special Smiles provides comprehensive oral health care information, offers free dental screenings and instructions on correct brushing and flossing techniques to Special Olympics athletes. This also includes issuing preventative supplies, like toothpaste, toothbrushes and fluoride varnish.”- Special Olympics

Now that we have more information, we can work to get the issue more exposure. We can advocate for dental care to be included in Medicaid. We can help educate more professionals. We can spread the story of Tommy Myers.  And we can ask for more research into best practices.

Let us know if you have any advocacy projects that we can help promote.

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