Thomas Finucane, MD
Johns Hopkins Bayview Medical Center
Q. Why do older adults with advanced dementia develop difficulty swallowing and eating?
A: The first phase of eating is when a person takes food into the mouth, chews it up, and decides to swallow. Advanced dementia most often affects this first phase of eating. These seemingly simple steps require the person to recognize food, cooperate in accepting it, chew it adequately and make the decision to swallow it. Dementia can interfere with any or all of these steps. When problems with eating and swallowing develop, this is called dysphagia.
Once the swallowing reflex begins, many muscles in your mouth, throat, and neck move the food safely past the airway and into the esophagus (the name for the swallowing tube that leads from the mouth to the stomach). This is the second phase of eating. If you swallow your saliva now, you’ll see it’s a pure reflex. Once it’s started, you can’t affect it and you don’t have to “do” anything. Dementia and stroke can interfere with this reflex. This can cause aspiration, which is the entry of solids or especially liquids into airways and lungs.
Q: Is dysphagia dangerous?
A: It can be. When older adults develop problems with the first phase of eating, they may eat and drink less. As the dementia progresses they may lose weight. When dementia is severe, they develop the risks of dehydration and malnutrition.
In addition, people with advanced dementia may develop problems with the second phase of eating, which can lead to dangerous aspiration. Aspirating large amounts of food, saliva or regurgitated food from the stomach can be dangerous, even fatal. A serious lung infection called aspiration pneumonia is the biggest worry.
It is important to recognize that everyone aspirates from time to time. All of us have coughed occasionally while swallowing liquids. Most often, we simply “clear our throats” or cough up food, drink, or saliva, and no harm is done.
Q: What are “percutaneous feeding tubes” and are they a solution for older adults with dementia who have dysphagia? What is a “PEG?”
A: A percutaneous gastrostomy is a special flexible, plastic tube that is placed directly through the abdominal wall and into the stomach. “Percutaneous” means “through the skin.” Surgery and anesthesia are generally unnecessary to do the procedure. When an endoscope is used to guide placement, it’s called a PEG, for percutaneous endoscopic gastrostomy. These tubes can provide food, water, and medication directly to the stomach. This is called “tube feeding.”
The tubes are by no means a solution for older adults with dysphagia and dementia. Studies show little or no meaningful benefit in this group of patients, and some harm. (Tube feeding may help patients with certain other diseases, such as cancer that is blocking the esophagus.)
For example, aspiration pneumonia is a serious threat to patients with advanced dementia and swallowing problems. However, good evidence suggests that tube feeding does not reduce that risk. Similarly, tube feeding is intended to improve nutritional status. But research has not shown that tube-fed patients live longer, are more comfortable, or have fewer infections, better pressure ulcer outcomes, or higher functioning than those receiving hand feeding.
Tube feeding also has risks of its own, including infections and leaks around the tube. In addition, some patients with feeding tubes must be restrained physically or with drugs to keep them from trying to remove the tubes. Rarely, feeding tubes can cause serious illness and death.
Q: How do these two approaches compare? Is one better than the other?
A: Though it is much more time-consuming, hand feeding appears to be a better alternative than tube feeding for older adults with advanced dementia.
Tube feeding probably reduces the risk that food will end up in the lungs and cause pneumonia. But the most common causes of aspiration pneumonia are contaminated secretions from mouth and sinuses, and material regurgitated from the stomach. Tube feeding cannot protect the lungs from these infectious materials. In fact, many studies show that tube feeding is a risk factor for the development of aspiration pneumonia.
Tube feeding does often lead to weight gain of a few pounds. But for patients who are bedfast or nearly so, their nutritional needs are actually very low. Tube feeding does not provide improvement in things that are important to the patient. It is worth repeating that tube feeding has not been shown to prolong life or relieve suffering in patients with advanced dementia. Delivering increased food and water to a bedfast patient will lead to increased stool and urine, which will increase the challenges in keeping the patient clean and dry.
In addition, overmedication of patients with severe dementia may interfere with feeding. Clinicians and family should work to stop all unnecessary medications. Some medications may interfere with hunger (such as drugs for arthritis, Alzheimer Disease or osteoporosis), reduce the ability to pay attention (such as antipsychotics, sedatives, and sleeping pills), or dry the mouth (such as drugs for incontinence or allergies). These medications, in particular, should be focused on.
Except in rare circumstances, patients should be offered any and all foods that they like. Aspiration is probably reduced when patients are sitting up when fed, rather than reclining or in bed.
Q. What should be done when death is near and an older person with dementia no longer wants hand feeding? At that point, isn’t tube feeding – even if it simply provides water – necessary, so they don't suffer at the end?
A. At this stage of the disease, doing any procedure is risky for the patient. There is no good evidence that the patient will live longer with a feeding tube. And it is usually impossible to know how a patient with advanced dementia is feeling. Patients who are dying of cancer rarely experience hunger or thirst. When they report thirst, the mouth is often dry or crusted and ice chips, frozen juice, or glycerin swabs can keep the mouth and lips moist and help with oral hygiene. This seems to relieve symptoms of thirst. We believe that this approach may also limit suffering in patients near death from dementia.
Last Updated July 2019