Be able to make an informed decision about feeding tubes
Most people in the late stage of Alzheimer’s or dementia have trouble eating and drinking. They may lose weight, become weak, or develop pressure sores. Or, food particles could get into their lungs and cause pneumonia.
When that happens, families may be asked if they want to put in a feeding tube.
Whether or not to use a feeding tube for someone with dementia is one of the most difficult decisions a family has to make. But in many cases, youaren’t getting the unbiased facts you need to help with the decision.
Of course, you want to do everything possible for someone who is declining. But some families have said they felt pressured by doctors or medical staff to use a feeding tube after only brief discussions and weren’t told of the potential risks and trauma to the older adult.
To help you make an informed decision, we explain what a feeding tube is, when they’re used, the risks of using them in late stage dementia, why they might be recommended by doctors, the costs, and why they aren’t recommended at the end of life.
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What is a feeding tube and when are they used?
A feeding tube is a tube that’s placed into the body and allows liquid nutrition to be given through the tube. The feeding tube can be placed through the nose and down the throat or it can be placed through a small abdominal cut directly into the stomach.
They’re typically used when a person can’t chew or swallow on their own. A feeding tube can be helpful when the cause of the eating problem is likely to improve. For example, it can help when someone is recovering from surgery, stroke, or brain injury.
Feeding tubes can also be helpful if people have ongoing problems with swallowing, but aren’t in the last stage of an incurable illness – like when someone has ALS (Lou Gehrig’s disease) or Parkinson’s disease.
However, tube feeding doesn’t help people live longer, gain more weight, become stronger, or regain skills.
An alternative to a feeding tube is careful hand feeding. That provides human contact and the enjoyment of tasting food.
Risks of using a feeding tube in late stage dementia
Like most medical treatments, there are pros and cons to using a feeding tube. They can sometimes do more harm than good, especially for someone in late stage Alzheimer’s or dementia.
A common issue is that many people with dementia are bothered by the tube and try to pull it out. To prevent that, they must be tied down or given drugs to restrain them.
Additional risks include:
- Bleeding, infection, skin irritation, or leaking around the tube
- Nausea, vomiting, and diarrhea
- The tube can get blocked or fall out (must be replaced in a hospital)
- Higher risk of getting pressure sores
- Higher risk of spitting up food, which could lead to pneumonia
- At the end of life, tube feeding keeps the body more hydrated, which means that fluids can fill the person’s lungs and cause breathing problems
Why feeding tubes may be recommended by medical professionals
There are many caring medical professionals who truly put the patient’s best interests first and take time to explain treatments and discuss pros and cons.
Unfortunately, there are also people who are more focused on saving time or money and may recommend treatments that don’t always benefit the patient.
Knowing the facts about feeding tubes means that you won’t be rushed into an uninformed decision by medical professionals who aren’t focused on your older adult’s wishes or quality of life.
In a hospital, doctors may recommend a feeding tube because it could allow them to discharge the person to a skilled nursing facility sooner, saving money for the hospital. It also saves the doctor time they would have to spend explaining why a family may or may not want to use a feeding tube, answering questions, and waiting for a decision.
In a nursing home, a feeding tube may be recommended because it’s simpler and faster for staff to tube feed a person versus carefully hand feeding them.
Of course, every person’s condition is unique and there may be situations where a feeding tube could be a truly helpful treatment for your older adult.
The important thing is to know that there are always risks as well as benefits. It’s your right as your older adult’s advocate to ask questions and get unbiased facts before making a decision.
You shouldn’t be rushed into a decision this significant after only a quick 15 minute conversation that focuses on the “pros” and rushes through the “cons.”
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Feeding tubes are a costly treatment
If it’s something your older adult truly needs, the last thing you’re thinking about is the cost of the treatment.
But if a feeding tube might not be necessary, it’s important to know that the cost of putting one in may be more than $10,000. You may also want to find out about the daily cost of tube feeding, necessary supplies, and follow-up care before making a final decision.
Tube feeding isn’t recommended at the end of life
When someone is at the end of their life and can no longer be fed by hand, you might worry that your older adult will starve to death.
But refusing food and water is a natural, non-painful part of the dying process. They’re not eating because they’re dying, not the other way around.
The body is shutting down and no longer eating or drinking is a normal part of that process. Not allowing the body to naturally dehydrate can cause nausea, vomiting, swelling, or breathing problems due to lung congestion.
Plus, there isn’t any good evidence that tube feeding helps people live longer or improves their quality of life.
Next StepPrint or save a factsheet about the use of feeding tubes in people with Alzheimer’s or dementia from Choosing Wisely (PDF)
Recommended for you:
- 3 Stages of Dementia: What to Expect
- The Five Wishes Living Will Makes End of Life Easier
- Make End-of-Life Conversations with Seniors Easier with This Helpful Guide
By DailyCaring Editorial Team
Image: Austco
This article wasn’t sponsored and doesn’t contain affiliate links. For more information, see How We Make Money.
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FAQs
What you need to know about feeding tubes for seniors with dementia? ›
In the statement, the AGS advises: Feeding tubes are not recommended for older adults with advanced dementia. An alternative approach that provides the same nutritional benefits is hand or spoon feeding. In fact, tube feeding can lead to harmful side effects, including worsening pressure ulcers.
How long can a person with dementia live with a feeding tube? ›After receiving a feeding tube, patients with advanced dementia lived a median of 165 days, and two-thirds died within a year. Older adults nearing death still do receive feeding tubes, sometimes because families insist, sometimes because health care providers don't offer enough information to help them decide.
What are the downsides of a feeding tube? ›- Constipation.
- Dehydration.
- Diarrhea.
- Skin Issues (around the site of your tube)
- Unintentional tears in your intestines (perforation)
- Infection in your abdomen (peritonitis)
- Problems with the feeding tube such as blockages (obstruction) and involuntary movement (displacement)
Feeding tubes are not recommended for older adults with advanced dementia. Careful hand feeding should be offered; for persons with advanced dementia, hand feeding is at least as good as tube feeding for the outcomes of death, aspiration pneumonia, functional status, and comfort.
What is the most common problem in tube feeding? ›Diarrhea. The most common reported complication of tube feeding is diarrhea, defined as stool weight > 200 mL per 24 hours.
When is a feeding tube not recommended? ›Tube feeding isn't recommended at the end of life
The body is shutting down and no longer eating or drinking is a normal part of that process. Not allowing the body to naturally dehydrate can cause nausea, vomiting, swelling, or breathing problems due to lung congestion.
Some patients who have feeding tubes are in the hospital and may be very sick. And some individuals with long-term feeding tubes are living at home and can still maintain an active lifestyle.
How do you sleep with a feeding tube? ›- For an NG-tube, you should tape the tubing down the child's back, then down the pajama leg. ...
- For G- or GJ-tubes, you can tape the extension to your child's stomach using a gentle tape like micropore or hypafix. ...
- If you use an IV pole, place the pole a few inches from the foot of the crib or bed.
It's important to know that late-stage dementia is a terminal illness and can lead to death. In these cases, the death certificate may list dementia as the cause of death.
Why do people refuse feeding tubes? ›For starters, the use of a tube can cause discomfort and may fail to dampen feelings of hunger or thirst. There's also a risk that the stomach's contents will “reflux” – or back up – into the throat and enter the lungs. This means feeding tubes don't provide 100 percent protection against aspiration pneumonia.
What are the pros and cons of having a feeding tube? ›
Under the right circumstances, a feeding tube can considerably improve the person's quality of life. They can relieve gas, bloating, nausea, and vomiting. But the main goal of a feeding tube is to make sure food or liquid doesn't make its way to the lungs, resulting in aspiration pneumonia.
How often do you feed a person with a feeding tube? ›Tube feedings that go into the stomach: The person you are caring for needs to be sitting up or have their head up during the feeding and for 30 to 60 minutes afterward. These feedings can be given in about 30 minutes, five or six times throughout a day.
How do you feed late stage dementia patients? ›Offer soft foods, such as yogurt, applesauce, mashed avocado, sweet potatoes, and bananas. Don't use a straw, which may cause more swallowing problems. Instead, have the person drink small sips from a cup.
Is a feeding tube considered life support? ›Life support procedures include mechanical breathing (ventilation), CPR, tube feeding, dialysis and more. The decision to start, decline or stop life support is deeply personal.
How do you avoid problems with feeding in people with dementia? ›- Prepare foods so they aren't hard to chew or swallow. Grind foods, cut them into bite-size pieces or serve soft foods (applesauce, cottage cheese and scrambled eggs).
- Be alert for signs of choking. ...
- Address a decreased appetite.
One of the early and more difficult issues that parents face with tube feeding is feed intolerance. Feed intolerance may present as vomiting, diarrhea, constipation, hives or rashes, retching, frequent burping, gas bloating, or abdominal pain.
Can you drink water with a feeding tube? ›Tap water is safe to use for most enteral feeding tube patients unless specified otherwise. Purified water: Use when flushing a jejunostomy tube, mixing powder formula, diluting medications, or if your child has a weakened immune system.
How long can you keep someone on a feeding tube? ›A feeding tube can remain in place as long as you need it. Some people stay on one for life.
How long can a patient have a feeding tube? ›Usually, your feeding tube won't need to be replaced for several months. You may even have it for 2-3 years.
What foods can you put in a feeding tube? ›Foods that are popular for blending include sweet potatoes, bananas, quinoa, avocado, oats, nut and seed butters, chicken, yogurt, kefir, various grains, and milk (cow's, soy, almond, coconut, etc). Other liquids include water, broths, and juices.
Do you have to stay in the hospital after getting a feeding tube? ›
Most children will stay in the hospital for 1-3 days after a G-tube placement. How long your child stays depends on your child's medical condition. It also depends on how much you'll need to learn to care for your child's newly placed G-tube.
How often should feeding tube be changed? ›- The amount of feeding in the bag should not exceed the 8 hour feeding volume. - The feeding bag/tubing must be changed every 24 hours.
How do you shower with a feeding tube? ›You may shower if you cover the site with plastic and avoid the shower spray on the site itself. After your sutures are removed you may wash in the shower without a dressing. Use soap and water around the site and be sure to rinse thoroughly.
Do they sedate you for a feeding tube? ›Before the Procedure
You will be given a sedative and a painkiller. In most cases, these medicines are given through a vein (IV line) in your arm. You should feel no pain and not remember the procedure. A numbing medicine may be sprayed into your mouth to prevent the urge to cough or gag when the endoscope is inserted.
Feeding bags should be changed every 24 hours. All of the equipment can be cleaned with hot, soapy water and hung to dry. Remember to wash your hands regularly to prevent the spread of germs. Take good care of yourself as well, so that you can stay calm and positive, and cope with stress.
How do you know the end is near with dementia? ›Signs of the final stages of dementia include some of the following: Being unable to move around on one's own. Being unable to speak or make oneself understood. Eating problems such as difficulty swallowing.
What are signs that dementia is getting worse? ›increasing confusion or poor judgment. greater memory loss, including a loss of events in the more distant past. needing assistance with tasks, such as getting dressed, bathing, and grooming. significant personality and behavior changes, often caused by agitation and unfounded suspicion.
How do you know death is near with dementia? ›Signs of the dying process
lose consciousness. be unable to swallow. become agitated or restless. develop an irregular breathing pattern.
Tube feeding can give the sensation of fullness, the same way you would by eating food. However, when the tube feed is administered continuously in small amounts over the course of a whole day, you may feel less of the sensation of fullness. If you are taking less than the recommended amount you can feel hungry.
How often should you do oral care on a tube fed resident? ›Good mouth care is very important, even when you're not eating or drinking. Brush all the surfaces of your teeth, gums and tongue at least two times a day.
What stage of dementia is dysphagia? ›
Dementia progresses differently in each person, so it can be difficult to know what to expect and when. However, dysphagia often presents in late-stage dementia patients who tend to have difficulty communicating and may even be nonverbal.
Does peg tube prolong life in dementia? ›More than 20% of patients with dementia lived more than 3 years after PEG. Two predictors of poor survival after PEG (among other medical issues) were patients who were male and older than 80 years of age.
How long does stage 6 dementia last? ›However, end-stage dementia may last from one to three years. As the disease advances, your loved one's abilities become severely limited and their needs increase. Typically, they: have trouble eating and swallowing.
Are feeding tubes part of palliative care? ›Although families often are concerned that hospices will not accept a patient with a feeding tube, this is rarely the case. Hospices generally agree to enroll such patients but will likely try to educate them and/or family or surrogate about the benefits and burdens of ANH.
What are the 3 types of feeding tubes? ›The types of feeding tube are: Nasogastric Tube (NG Tube) Nasojejunal Tube (NJ Tube) Percutaneous endoscopic gastrostomy (PEG)
What are three tips for helping people with dementia? ›- Try to keep a routine, such as bathing, dressing, and eating at the same time each day.
- Help the person write down to-do lists, appointments, and events in a notebook or calendar.
- Plan activities that the person enjoys and try to do them at the same time each day.
- French toast cut into bite-size squares.
- Silver dollar pancakes with jam.
- Waffle with cream cheese and jam.
- Graham crackers.
- Cheese cubes.
- Cooked carrot coins and vegetable strips slightly steamed to soften texture.
- Small meatballs, sliced turkey, or meatloaf pieces.
Some patients who have feeding tubes are in the hospital and may be very sick. And some individuals with long-term feeding tubes are living at home and can still maintain an active lifestyle. Formula can be provided at a continuous rate (given over 24 hours) or given cyclic rate (e. g.,12 hours overnight).
How do you feed a dementia patient with dysphagia? ›A person with a dementia may forget to swallow. Things that can help include: alternating temperature and taste within a meal, for example, sweet and savoury food or hot and very cold foods or fluids. offering sips of ice cold drink before a meal or in between mouthfuls.
How often do you feed with a feeding tube? ›Tube feedings that go into the stomach: The person you are caring for needs to be sitting up or have their head up during the feeding and for 30 to 60 minutes afterward. These feedings can be given in about 30 minutes, five or six times throughout a day.
At what stage do dementia patients stop eating? ›
In the end stages of dementia (in the last few months or weeks of life), the person's food and fluid intake tends to decrease slowly over time. The body adjusts to this slowing down process and the reduced intake.
What is the most common cause of death in dementia patients? ›One of the most common causes of death for people with dementia is pneumonia caused by an infection. A person in the later stages of dementia may have symptoms that suggest that they are close to death, but can sometimes live with these symptoms for many months.
What are the 4 stages of dysphagia? ›- The Pre-oral Phase. – Starts with the anticipation of food being introduced into the mouth – Salivation is triggered by the sight and smell of food (as well as hunger)
- The Oral Phase. ...
- The Pharyngeal Phase. ...
- The Oesophageal Phase.
As Alzheimer's disease progresses to later stages, the person may no longer be able to chew and swallow easily. This is a serious problem. Difficulty with swallowing may lead to choking or cause food or liquid to go into the lungs, which is known as aspiration. This can cause pneumonia, which can lead to death.
What are 3 things you should do when feeding a patient with dysphagia? ›Remember that dysphagia patients have individual requirements, so all of these guidelines may not apply to every patient. Maintain an upright position (as near 90 degrees as possible) whenever eating or drinking. Take small bites — only 1/2 to 1 teaspoon at a time. Eat slowly.
Is a feeding tube part of hospice care? ›Placing a feeding tube: Generally, feeding tubes are not placed in patients once they are enrolled in hospice care. On rare occasions, a decision to proceed with feeding tube placement is made in conjunction with the patient, family and hospice interdisciplinary team.