Tube feeding and end-stage dementia
Question: Can people with dementia forget how to eat?
Answer: In the final stages of dementia, usually around the time when patients are no longer able to communicate or walk, and become bed-bound, a number will also develop swallowing problems, and some will refuse to eat. The swallowing problems can lead to fluids and food entering the lungs instead of the digestive system which can cause “aspiration pneumonia”. This is an agonizing time for caregivers and families who not only recognize eating and drinking as essential for survival, but also as one of the few remaining pleasures that contribute to quality of life for the patient in the end stages of the disease. Support from the medical team, and a realistic review of all available options is essential at this stage.
Exploring the options
Nutritionists and dietitians can provide a variety of recommendations, depending on the severity of the swallowing difficulties. At times this will involve changing the consistency of the diet to make it easier to swallow, and/or thickening the fluids to ensure they end up in the stomach, rather than the lungs. Proper positioning of the patient during the meals will also be suggested. At this point, caregivers and family often begin to think ahead, and wonder whether a feeding tube will be necessary. Feeding tubes, also referred to as “percutaneous endoscopic gastrostomy” (PEG) tubes are inserted through the skin, into the stomach by a brief surgical procedure, allowing artificial liquid nutritional fluids to be given, thus avoiding the need to eat by mouth. While this might sound like an ideal proposition to families, there are no current medical or nutritional scientific societies who recommend this for these situations. Why is that?
A difficult decision
It is generally acknowledged that for patients with end-stage dementia, feeding tubes do not actually improve nutritional status, and they do not improve survival. In fact, there are numerous complications associated with feeding tubes including pain, agitation, and diarrhea. Feeding tubes may not even prevent the aspiration pneumonia they are used for! Some patients will be so uncomfortable with the tubes, that they attempt to pull them out, which can lead to acute medical emergencies. Most importantly, there is no evidence that feeding tubes improve quality of life for the patient.
When treatment teams recommend against the use of a feeding tube, families sometimes argue that they just cannot let their relative “starve to death”. The decision to use a feeding tube needs to be made with the caregiver and family, taking into account the patient’s culture, religion and previously expressed wishes. The team will likely review the information summarized above, and inform caregivers that in general, tube feeding is not recommended as the risks outweigh the benefits.
The best alternative to feeding tubes is “assisted oral feeding”, in which a caregiver helps the patient eat small amounts of food and fluids slowly and carefully. The benefit of this procedure is the close contact between patient and caregiver (the “human touch”), and the more natural form of nutrition. These likely go a longer way to improving quality of life for patients, than any form of nutrition provided through a feeding tube.