Before undergoing surgery for herniated cervical disks and nerve pain two years ago, 56-year-old David Lunzer, the owner of a small business in Los Angeles, didn't think twice about his regular dentist appointments. Now he gives them careful consideration, especially since sitting in one position for long periods of time remains painful. "My dentist takes special care to make certain my neck is well supported in the chair at every position," he says. And, the hygienist lets him take a break every 15 or 20 minutes so Lunzer can relax his jaw, which tenses up during the cleaning.
Leslie Krongold, EdD, who has adult-onset myotonic dystrophy, a condition marked by progressive muscle weakness and wasting, alerts her hygienist and dentist about her physical limitations before each cleaning. "When I recline, it's hard on my breathing, and with added stuff in my mouth, I feel even more anxious," she says. "I always explain why it's difficult for me."
Because her condition causes her to produce excess saliva and drool, she holds the suction device throughout the procedure. X-rays also require extra preparation both because she has a gag response to them and because her condition has reduced her tongue muscle control.
Missing Out on Dental Care
People like Krongold and Lunzer who have neurologic disabilities often have markedly different dental experiences than the general population, or more likely they get no dental care at all. A 2018 study published in the journal Alzheimer's and Dementia found that dental visits decreased after a dementia diagnosis for a variety of reasons, including inaccessibility of appropriate care, inability to pay, and an underappreciation of the importance of oral health.
"There is no question that a visit to the dentist can be difficult for patients with neurologic conditions who may experience anxiety, can't remain in one position, and can have uncontrolled movements, such as those with Parkinson's disease or cerebral palsy," says Steven Perlman, DDS, clinical professor of pediatric dentistry at the Boston University Goldman School of Dental Medicine and founder of Special Olympics Special Smiles, an oral health initiative for the athletes of the Special Olympics. "But untreated cavities and gum disease can and have resulted in death for patients with disabilities." A few years ago, Dr. Perlman says, a Special Olympics competitor died from a systemic infection caused by an infected tooth.
For anyone, poor oral hygiene can lead to gum disease, which can cause infection or health issues such as heart disease and endocarditis, an infection of the inner lining of the heart.
Regular Dental Visits Matter
Regular dental care is even more important for people with cognitive disabilities because they often can't articulate where they feel pain or discomfort and may not be able to convey that they have pain in their teeth from cavities or gum disease, says Evelyn Chung, DDS, clinical professor at the UCLA School of Dentistry who specializes in treating patients with special needs.
In addition, the symptoms of many neurologic diseases such as dry mouth, teeth clenching, poorly aligned teeth, and mouth breathing can exacerbate dental health problems, says Seth Keller, MD, a neurologist in Voorhees, NJ, and past president of the American Academy of Developmental Medicine and Dentistry in Hamden, CT. Side effects of medications such as opioids, antidepressants, most seizure medications, and some blood pressure drugs can reduce saliva. Saliva washes away food and neutralizes acids produced by bacteria in the mouth. Less saliva increases the risk of tooth decay and gum disease, says Dr. Keller.
People with Parkinson's disease may generate too much saliva, which can cause a fungal infection at the corners of the mouth. Or they may not generate enough saliva, due to certain medications, which can increase the risk of cavities. In addition, symptoms such as rigidity, tremor, and dyskinesia can result in cracked teeth, tooth wear, changes in the fit and wear of dentures, and tooth grinding.
Training and Transparency
An increasing number of dental schools now teach students how to treat children and adults with neurologic conditions. In addition, professional organizations, such as the American Academy of Developmental Medicine and Dentistry, the Special Care Dentistry Association, and Project Accessible Oral Health offer continuing education courses for dental professionals.
Patients who require special attention can ask their neurologist, patient association, or local dental school for referrals to an appropriately trained dentist. Dental schools may have clinics that can treat patients with neurologic conditions, and the Special Care Dentistry Association offers online referrals. In some areas, patients can access teledentistry treatment, in which a specialty dentist assists the local dentist via video or conference call. To learn more, visit the Mid-Atlantic Telehealth Resource Center.
Most federally qualified health centers have dentists on hand, and fees are based on income. Before scheduling an appointment, ask if the dentist is trained to handle your particular condition. Medicare doesn't cover most dental care, but some Medicare Advantage plans offer limited coverage. Dental coverage for adult Medicaid recipients varies by state. If you can't afford dental care, contact the Dental Lifeline Network to find out whether dentists in your area will see you for free.
Despite increasing awareness among dentists about the special needs of people with neurologic disorders, change has been slow and finding the right dentist can be frustrating, says Krongold. "In my experience, not enough dental professionals are attuned to the needs of people with neurologic conditions," she says. "When I worked for a patient advocacy organization, I wanted to cover oral hygiene at our annual conference, but I couldn't find a qualified, experienced dental professional to speak. The only ones I found worked with children with cognitive and behavioral disabilities. I believe dental care for adults with physical disabilities is a neglected topic."
Important Accommodations
Some of the accommodations dentists make for patients with neurologic conditions include providing a private room where light and noise can be controlled, flexibility in appointment scheduling, and, if necessary, showing patients each instrument, explaining how it will be used, and letting patients touch it, all while using language or gestures appropriate for each patient. Any time patients look apprehensive or concerned, dentists are taught to stop and explain again what they plan to do. This common approach is called "show-tell-do," says LaQuia Vinson, DDS, a pediatric dentist at Riley Children's Health in Indianapolis, who treats many people with disabilities and special needs.
Proactive Patients
As Krongold and Lunzer can attest, being proactive is vital. That includes sharing your medical history and a list of medications you take with your dentist, says Dr. Keller. If patients are taking medications that can cause tooth decay, their dentists can advise them on how to protect their teeth.
Knowing patients' medical histories is equally important, says Dr. Keller. For patients with epilepsy, for instance, dentists can consult with the patient's neurologist about seizure triggers. For their part, patients can avoid triggers by not drinking alcohol and taking their medications before seeing the dentist, says Dr. Keller. In addition, patients should bring a friend or family member who has experience helping someone during and after a seizure.
People with Parkinson's disease should let their dentists know if they are taking monoamine oxidase B inhibitors such as rasagiline (Azilect) and selegiline (Emsam), drugs used to treat symptoms such as fatigue, because they can interact with anesthesia and cause adverse reactions, says Dr. Keller.
Collaboration Is Key
Finding a dentist who can work with you to accommodate your needs is critical, says Andrea Zdinak, a former schoolteacher who was diagnosed with chronic fatigue syndrome and fibromyalgia in December 2011. Since then, even swishing water in her mouth can be exhausting, says the 55-year-old resident of Milford, CT. To avoid foregoing cleanings, Zdinak looked for a dentist who was willing to collaborate with her. He prescribes diazepam (Valium) before a visit to ease stress. He also ensures that she sees the same hygienist at each visit, a person who is calm, gentle, and never rushes, and he reserves a quiet room for her where she can rest before heading home.
Home Care Is Also Important
Dental care at home is just as important as regular visits to the dentist's office, says Harvey Levy, DMD, a dentist in Frederick, MD, who received an award from the Special Care Dentistry Association in 2015. And the advice is the same for someone with a neurologic condition as for the general population: Brush and floss teeth twice a day and avoid foods that encourage tooth decay. Ignoring dental care can lead to pain, tooth loss, infections, and even death from abscesses, if ignored for too long, says Dr. Keller.
For Lunzer, Zdinak, and Krongold, the electric toothbrush has been helpful. For Lunzer, it puts less stress on his neck muscles. Zdinak says a soft bristle electric toothbrush requires less effort, and specialized toothpaste for sensitive teeth and gums makes for a less painful cleaning. Krongold says an electric toothbrush makes life "so much easier." She also recently purchased an electric water flosser to help with flossing.
How to Prepare for an Office Visit
What helps one patient prepare for a visit to the dentist may not work for another, so be sure to discuss strategies with both your neurologist and your dentist, says Seth Keller, MD, a neurologist in Voorhees, NJ, and past president of the American Academy of Developmental Medicine and Dentistry.
In the meantime, here are some steps to keep in mind.
SCHEDULE WISELY. Depending on your condition or medication schedule, certain times of day may be better than others for undergoing oral care, so schedule appointments accordingly, says Ruth Drew, director of information and support services at the Alzheimer's Association. Many patients, like Leslie Krongold, who has adult-onset myotonic dystrophy, and Andrea Zdinak, who has chronic fatigue syndrome and fibromyalgia, do not plan anything after the visit since the experience may be physically or emotionally exhausting. People with Parkinson's should time their appointments for when their medication is most effective, says Dr. Keller.
REQUEST AN APPROPRIATE AMOUNT OF TIME. Some people with neurologic conditions need longer appointments to accommodate certain disabilities, including extra time to maneuver a wheelchair or be transferred into the dental chair, for example, so talk to your dentist about scheduling more time. Others, such as Parkinson's or fibromyalgia patients, may need shorter appointments to accommodate fatigue and windows of time when their medication is most effective, says Dr. Keller.
PROVIDE FULL MEDICAL INFORMATION. Be sure the dentist has a complete, accurate, and up-to-date medical history, including medications, any unusual symptoms, range of motion, comprehension level, and the best way to communicate, says Dr. Keller.
HAVE ELECTIVE PROCEDURES EARLY ON. If you have a progressive disease, consider replacing old fillings, crowns, and bridges or mouth guards during the early stages since dental visits may become more difficult as the disease worsens.
MENTION ALL YOUR MEDICATIONS. Provide a list of all the medications you take since some, such as antidepressants and most seizure medications, can interact with anesthesia or contribute to tooth decay.
PROTECT AGAINST INVOLUNTARY MOVEMENTS. If involuntary movements due to restless legs syndrome, Parkinson's disease, or other movement disorders interfere with a procedure, a dentist might recommend temporary stabilization, says Steven Perlman, DDS, clinical professor of pediatric dentistry at the Boston University Goldman School of Dental Medicine.
LOOP IN THE TEAM. Ask your dentist to work with your whole care team—physicians, social workers, nurses, and others–to ensure a safe and effective experience. The more your dentist knows about your condition and range of symptoms, the more he or she can accommodate your specific needs.
CONSIDER ANESTHESIA. Sedation might be the right choice for very anxious patients, but talk to your doctor about whether it should be done in a hospital where the dentist would supervise the dental care and an anesthesiologist would control the sedation, says Dr. Perlman.
COMMUNICATE WITH YOUR DENTIST. Ask your dental office about its strategies for accommodating people with special needs, says Dr. Perlman, who has found that autistic children are comforted by a weighted blanket or a device that folds around the patient from the back of the chair. If you find a hygienist or dentist who is particularly gentle, be sure to request that person for every visit.
Web Extra
For dental care resources, go to BrainLifeMag.org/DentalResources.