For many people with neurologic conditions, a swallowing disorder called dysphagia can make everyday pleasures like sipping wine or biting into pepperoni pizza challenging. “Swallowing is one of the most complicated things the human body does,” says speech-language pathologist Elizabeth Lipton Daly, executive director of the National Foundation of Swallowing Disorders in Walnut, CA. A person who cannot swallow properly could end up dehydrated or malnourished, she says.
An estimated one in six adults in the United States has some difficulty swallowing, according to a survey conducted by Cedars-Sinai Medical Center in Los Angeles. Aging, gastroesophageal reflux, cancer of the head or neck, and injury to or irritation of the esophagus all can make people susceptible to swallowing problems, and the risk is even higher if they have a neurologic condition. Dysphagia affects about 65 percent of stroke survivors, 50 percent of people with Parkinson's disease, 31 percent of people with multiple sclerosis (MS), and large percentages of people with dementia and motor neuron diseases, according to a June 2020 review in Neurological Sciences.
People with dysphagia may eat and drink less, which can lead to dehydration, weight loss, and malnutrition. If food gets into their airways and lungs instead of their stomachs, it can cause aspiration pneumonia or even a fatal airway blockage, says David Buchholz, MD, a neurologist in Lutherville-Timonium, MD. Swallowing disorders also can diminish the joys of eating and socializing with others. “So much of our personal pleasure and interactions is centered on eating and drinking,” Dr. Buchholz says. “Someone with dysphagia may be reluctant or unable to partake.”
How We Swallow
Swallowing occurs in three phases. The first is oral: The jaw, teeth, and saliva work together to mash up and moisturize solids, and the tongue positions food and drink toward the throat. The second phase is when the tongue propels food and drink toward the back of the throat, activating the “swallowing response” that carries them into the esophagus. At the same time, the voice box closes to keep food out of the airways and lungs. In the third (or esophageal) phase, food and drink move through the esophagus and into the stomach.
A condition that damages the brain or spinal cord can interfere with any part of the swallowing process. After a stroke, for example, the tongue may not push food to the back of the throat efficiently, which could delay the swallowing reflex for several seconds. For those with Parkinson's disease or motor neuron disorders, food may get stuck in little pockets off the esophagus. Parkinson's also may cause muscles to freeze up or spasm while swallowing. With myasthenia gravis, the swallowing reflex may tire and not function fully.
Signs of dysphagia include drooling, food falling out from the mouth or nose, slower chewing or swallowing, a feeling that food is sticking in the mouth or that the neck is full, pain when swallowing, coughing and throat clearing after swallowing, the voice sounding wet or gurgly during eating or drinking, and trouble coordinating eating and breathing, according to the American Speech-Language-Hearing Association.
Despite these symptoms, many people don't think to get help or inform their doctors. In the Cedars-Sinai survey, half of those with dysphagia said they'd never sought medical help for it. “I do think swallowing disorders are underrecognized,” says Sandeep Kumar, MD, associate professor of neurology at Harvard Medical School in Cambridge, MA. “This is especially true with less severe impairments that may fly under the radar till the person develops aspiration pneumonia or chokes on certain foods. Many stroke patients, for instance, were not being systematically evaluated for swallowing difficulties until recently.”
People should tell their primary care doctors about any swallowing-related problems. “Patients and caregivers should ask their medical providers to refer them for an evaluation if they have symptoms of dysphagia or their neurologic condition commonly causes dysphagia,” says Matina Balou, PhD, a speech-language pathologist and specialist in swallowing disorders at NYU Langone Health.
Evaluation
Swallowing disorders are diagnosed through physical examinations and swallowing tests administered by speech-language pathologists. In the test known as a video fluoroscopic swallow study, patients eat or drink foods containing barium, which lights up during an X-ray, so the speech-language pathologist can pinpoint specific swallowing problems. “We also test different foods and swallowing techniques during the exam to see what will help,” says Daly. “That could be thicker liquids, which are easier to control and swallow, a different posture, or other strategies.”
During another test, a fiber-optic endoscopic swallow study, the speech-language pathologist inserts a lighted scope and camera through the patient's nose and into the throat to observe swallowing. Once a patient's specific swallowing concerns have been identified, the speech-language pathologist will teach the patient swallowing techniques, prescribe exercises to strengthen and coordinate muscles involved with swallowing, and customize a diet plan, Daly says.
A speech-language pathologist or a registered dietitian can provide advice on how to adjust food and drink, says Kristin Gustashaw, RDN, who works with people with swallowing disorders at Rush University Medical Center in Chicago. She directs patients to the diet recommended by the International Dysphagia Diet Standardization Initiative (IDDSI), which is geared to eight different levels of swallowing ability. For example, the IDDSI recommends minced and moist soft foods if food tends to collect on the tongue before swallowing and lump-free pureed foods for anyone with limited tongue control.
For people with dysphagia, thin beverages like water, tea, and coffee can be difficult to swallow, says Gustashaw, who encourages her patients to try thicker drinks like apricot nectar. Other solutions include adding thickener or buying prethickened drinks, which can be sipped through an extra wide straw or from a cup or spoon. The dietitian or speech-language pathologist can advise how much to thicken drinks so that swallowing will be easier.
Caregivers of people being treated for dysphagia can get advice from speech-language pathologists on preparing foods and drinks for loved ones, says Daly. Advice and assistance are also available from the National Foundation of Swallowing Disorders, which hosts support groups for people with swallowing disorders and their caregivers. The foundation’s website also provides webinars, peer-to-peer mentoring, basic information, help in finding a swallowing specialist, and other resources.
You don't want to ignore swallowing problems, since dysphagia can improve with treatment. “Generally, sitting up straight, reducing distractions, and not talking while eating will help anyone with dysphagia,” Daly says. “Beyond that, therapy is very personalized. Something that works for you may not work for someone else.”
Eat This, Not That
For the various degrees of dysphagia severity, the International Dysphagia Diet Standardization Initiative explains which foods are easier to swallow than others.
Foods to eat:
Vegetables that are boiled or steamed until soft, then finely chopped or mashed; small pieces of fish or meat cooked until soft and topped with a thick, smooth gravy; soft, cooked, moist cereal without excess liquid; minced or pureed fruit; and smooth, pureed foods that aren't sticky or lumpy.
Foods to avoid:
Raw vegetables and apples; fibrous fruit like pineapple and the white part of citrus fruit; steak; dried fruit; food with a skin, such as corn, grapes, and peas; shredded wheat; chicken with the skin on; and hard, dry, chewy, crunchy, or crumbly food.
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