In advanced stages of dementia, a person's ability to eat and drink often fades. When it comes to the best course of care, clinicians discuss the pros and cons of feeding tubes versus spoon feeding by hand. Ultimately, it's a personal decision. But the practice of tube feeding in advanced dementia is becoming less common for several reasons.
Most people in the late stages of dementia eventually lose the ability to feed themselves. Tube feeding — a tube inserted into the stomach through the abdominal wall, also called a percutaneous endoscopic gastrostomy (PEG) — was once considered a straightforward solution to provide adequate nutrition and hydration as well as prevent complications.
However, research in the last two decades or so has failed to show the benefits of tube feeding in patients with advanced dementia. Studies have indicated that it does not prolong the lives of people with advanced dementia or improve the quality of life. What’s more, it may increase the risk of medical complications such as bedsores.
An increasing number of clinicians and professional groups are urging against tube feeding for people with advanced dementia. Instead, they say, careful hand feeding is an alternative that also offers human contact. Being Patient spoke with experts about caring for a person with advanced dementia and the risks introduced by feeding tubes.
Feeding Difficulties in Advanced Dementia
The loss of people’s ability to nourish themselves is a heartbreaking reality for families when they have already endured all that the disease has taken away. According to Dr. R. Sean Morrison, professor and chair of geriatrics and palliative medicine at Mount Sinai, people with dementia first lose their memory, forgetting the names and histories of loved ones as the disease progresses.
Gradually, they may lose awareness of others who are present, as well as their vocabulary and speech. Then comes the loss of the ability to eat and drink. People may forget how to use a fork or a spoon, Morrison said. Over time, they often develop problems chewing and swallowing.
Symptoms of impaired swallowing, also known as dysphagia, include coughing and choking during meals. Throat-clearing or changes in voice quality, such as a wet or gurgling voice are subtle signs that can accompany dysphagia. Other symptoms include spilling food from the mouth, chewing for too long, or pocketing food in the mouth.
Often, the solution in the past was tube feeding, but over the years, that has been increasingly called into question. At the geriatrics practice of Mount Sinai, Morrison noted that clinicians typically don’t present tube feeding as an option for patients with advanced dementia: “We just don’t think that, in 2020, it’s an acceptable treatment option for this condition because it doesn’t meet the needs of why one would do it,” he said of he and his colleagues at the geriatrics practice of Mount Sinai.
When is Tube Feeding Appropriate?
According to Morrison, a feeding tube may be appropriate for people with conditions such as stroke, head and neck cancer and amyotrophic lateral sclerosis. He noted that a feeding tube may improve their quality of life and prolong survival. But for people with advanced dementia, Morrison said, “I think the science [shows] it’s no longer an appropriate indication.”
When a patient with advanced dementia is overcoming an acute illness and experiencing feeding difficulties, Morrison said it may be appropriate to temporarily use a feeding tube known as a nasogastric (NG) tube. An NG tube passes through the nose and into the stomach, providing a short burst of calories and hydration to help them recover.
Dr. Joan Teno, a palliative medicine physician and professor of medicine at the Oregon Health & Science University, agreed, adding that after treatment of an acute infection, patients with advanced dementia can sometimes recover to their previous levels of swallowing abilities.
For some, short-term placement of an NG tube or simply waiting for a couple days, may be helpful: “In some hospitals, there’s a real rush to put in [PEG] feeding tubes,” Teno said. “Sometimes, watchful waiting could be a very important strategy.”
The Evidence Against Tube Feeding in Advanced Dementia
According to Teno, more clinicians are seeking alternatives: Over the years, Teno said she and colleagues have found that feeding tubes don’t help, and they could make things worse. For one, the researchers found that feeding tubes made no significant difference in keeping patients with advanced dementia alive longer, compared to those without one inserted. The timing of inserting a feeding tube didn’t help either.
She added that one likely reason is that people are still at risk for aspiration pneumonia, noting that a feeding tube does not prevent them from inhaling saliva into the airways.
When it comes to risks, Teno noted that feeding tubes may cause bedsores, as people with advanced dementia may be physically restrained or sedated to address agitation. She and her team showed in a study that feeding tubes neither prevent nor heal bedsores, also known as pressure ulcers, even though physicians have long assumed that nutrition delivered via feeding tubes helps patients with advanced dementia resist ulcers. Instead, the researchers found that feeding tubes doubled the risk of a new pressure ulcer.
Even though inserting a feeding tube is a relatively safe and short process, Morrison added that it can be a painful procedure, with further opportunities for problems to arise after the surgery: “People with dementia don’t understand why they have a tube in place,” Morrison said, “and they can often pull it out, which again, is quite painful, and [that] requires it to be reinserted. So that’s another procedure.”
In part because of these issues with feeding tubes for people with advanced dementia, there is evidence that the practice is slowly beginning to change: A separate study by Teno and colleagues showed that the proportion of nursing home residents with advanced dementia who received feeding tubes decreased by about half between 2000 and 2014, falling to less than 6 percent of residents from nearly 12 percent.
The Ongoing Debate About Tube Feeding
Tube feeding as a course of care for people living with advanced dementia has come under greater scrutiny. But, there are families with certain religious, cultural or personal beliefs that may ultimately decide to place a feeding tube for a loved one with advanced dementia, hoping that perhaps it could help them live a little longer. For these reasons, experts say, it is important to make a decision based on the specific situation of the individual, their wishes, and their family.
Dr. Matthew Lynch of the Nathan Littauer Hospital wrote in an article that current research on tube feeding for dementia is “preliminary and provocative,” and in short, limiting. Lynch added, “Guidelines from professional societies make a blanket recommendation against feeding tubes for anyone with dementia, but an individual approach that takes each person’s situation into account seems more appropriate.”
Brian Hedman, senior clinical speech-language pathologist at the Cleveland Clinic, said more research is needed to tease out the different factors that influence the risks and benefits of tube feeding among patients and compare the outcomes between people with advanced dementia and other patient populations.
According to Hedman, tube feeding may be one way to provide nutrition if an examination by a speech-language pathologist shows that the patient with feeding problems is at low risk of aspiration.
“As long as the family is provided the information necessary to make the decision — pros and cons — by their doctor, and as long as follow up is provided to be sure the patient is getting appropriate nutrition through the PEG, and the PEG is well cared for, I do feel the low aspiration risk patient may be considered for the PEG,” Hedman wrote to Being Patient in an email. “Once provided all the information, it is up to the family to decide.”
If a family decides tube feeding is not right for their loved one, there are alternatives.
Alternatives to Tube Feeding in Advanced Dementia
Other feeding options might be considered for people who have lost the ability to eat and drink. According to Teno, clinicians have achieved a level of consensus in recommending compassionate hand-feeding rather than tube feeding people who have advanced dementia. Teno pointed to The Choosing Wisely campaign that has published guidelines for patients and families.
Morrison said caregivers who carefully spoon feed a person with advanced dementia, urging them to swallow and removing food left in their mouths, can be a safe way to provide just as much, if not more nutrition than tube feeding.
While it is possible to hand feed people with food and liquid when they have a feeding tube, Morrison said that especially in the case of nursing homes, “In reality, once a tube goes in, because it’s so much easier just to hang up a bag of artificial nutrition and hook it up and walk away, people don’t get that human contact.”
“Continuing spoon feeding is associated with a lot of benefits both for patients and for caregivers,” he added. “For patients, it’s the connection of somebody who loves them. It’s the taste of food. It’s the way that it feels on the tongue. For the family caregiver, it’s a way of providing comfort and feeling like you’re doing something and helping in the setting of a pretty horrific disease. It is the most effective means of providing comfort and hope.”
Consult Specialists For Safe Feeding Strategies
Speech-language pathologists recommend consulting with a specialist who can offer alternative strategies such as avoiding thin liquids, changing consistencies of food, sitting upright, and keeping their heads up while eating or drinking.
“Sometimes, a speech-language pathologist isn’t included in the end-of-life feeding discussion,” Nicole Rogus-Pulia, a speech-language pathologist and an assistant professor of medicine at the University of Wisconsin-Madison, told Being Patient. “And we really should be, because there’s so much we can do to recommend safe swallowing that also aligns with the patient and [their family’s] goals of care. There are ways that we can modify what you’re swallowing that still are enjoyable.”
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