Recent studies have suggested that the common practice of tube feeding people who suffer from late-stage dementia is not as beneficial as once previously thought. If your care recipient is in the late stages of dementia and is being tube fed, you may want to consider the following information.
Providing care for those in the late stages of dementia is not easy. People in these stages have likely lost the ability to use and understand language, may be completely incontinent and may be unable to walk or feed themselves. Feeding through a tube that has been surgically inserted into the stomach is usually started during these stages. New studies (presented in the New England Journal of Medicine and the Journal of the American Medical Association) advise, however, that tube feeding may actually do more harm than good and that hand feeding may be just as nutritionally effective, less physically dangerous and more psychologically beneficial than tube feeding.
It is common for care recipients in the late stages of dementia to lose weight and become malnourished. Tube feeding is started to prevent this malnourishment and maintain weight. Still, the studies suggested that even with tube feeding, these care recipients continued to experience weight loss and malnourishment.
Tube feeding is thought to prevent the aspiration-related pneumonia that can occur when those who have difficulty chewing and swallowing choke on their food. The study found though, that aspiration can still happen with a tube: reflux - where the tube-inserted liquid in the stomach goes "back up" into the throat - can cause a care recipient to aspirate (breathe in and choke on) their saliva.
It is common for these tube-fed care recipients to pull out their feeding tubes. While this is dangerous in terms of injury to the care recipient, this tendency to pull out the tubes means that restraints must used to prevent injury and to ensure that the care recipient is fed. Many people do not respond well to being restrained and can become extremely agitated. In order to prevent further injury from this agitation, sedatives are administered. The studies suggest that hand feeding would be a much safer and more "patient-friendly" alternative than the use of restraints and sedatives.
Tube feeding also seems to result in diarrhea, more pressure sores and more production of waste (which can also cause sores). In addition, the tube insertion area is prone to infection and the tube itself can become blocked.
The studies also suggest that hand feeding, while it takes longer to complete, offers care recipients a chance for social interaction as well as the pleasure of experiencing the taste and texture of food.
While the studies suggested that hand feeding may be a more beneficial way of feeding late stage dementia care recipients and that there didn't seem to be any difference between feeding methods in terms of survival rates, there is a moral concern regarding tube feeding. It is generally understood that in these late stages of dementia, care recipients no longer understand the process of eating so tube feeding is administered to prolong life. In other words, by not tube feeding, you are denying the person nutrients and therefore a chance to live. Some feel that denying tube feeding to someone who can no longer eat is unethical unless that person has specifically indicated that they do not want to be tube fed. These ethical issues are serious and if the care recipient has not indicated a choice for tube feeding, it is up to the caregiver to decide how to act in accordance with the care recipient's wishes.
It is unlikely that hand feeding will replace tube feeding in the immediate future however, if you are a caregiver for someone in this situation, you may want to consider hand feeding as an option for your care recipient.