FAQs on Tube Feeding for Alzheimer’s/Dementia

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Here are some FAQs related to placing my mother who have end stage Alzheimer’s on tube feeding. I would be including more FAQs from time to time.

FAQ Listing:

Q: Why did you place your mother (who have Alzheimer’s/dementia) on tube feeding?

A: She was placed on nasogastric tube feeding because she developed dysphagia, ie difficulty in swallowing. The amount she was consuming was no longer sufficient to sustain her life.

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Q: Did you do it under medical advice?

A: Yes, in fact the placement was recommended by the specialists in both a private and government hospital in Thailand that are treating my mother. When we arrived in Thailand, my mom was treated by a gastroenterologist (for her chronic hepatitis), a cardiologist (for her cholesterol and blood pressure) and later a neurologist (for her Alzheimer’s) in a private hospital. In June 2021, when my mom was hospitalized in ICU, all the 3 specialists who have been treating my mother suggested tube feeding. They said to try out nasogastric ryles tube first and if it failed, then to do a PEG tube. But PEG should only be the last option. I was told from her blood work and vitals, it clearly showed that the amount she was consuming by mouth was no longer enough to sustain her life. She was severely dehydrated and malnourished.

At first, we decided to take her back to try hand feeding but it was a real struggle to even get 400ml of liquid in her daily. It was also pitiful to see her choking on soft blended food. After about 10 days, she looked as if she was becoming unconscious. We rushed her to a government hospital and they had to resuscitate her as her heart rate and blood pressure had gone very low.  Again, the ER doctors advised nasogastric tube feeding to save her life. It was then we made the decision to place her on nasogastric tube feeding.

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Q: By placing her on tube feeding, aren’t you just prolonging her suffering?

A: I believe this is a common misconception. I have seen how my mother was when her body was severely dehydrated and malnourished but she had refused to eat because she kept choking on fluids and soft food. She looked as if her body was in fire (because of dehydration), she never smiled nor respond to anything, she stopped singing and humming songs (she used to do that before) and she looked very uncomfortable.

A few weeks after the tube feeding, light came back to her eyes, she started regaining energy and starting humming a tune or two. She started her ‘baby talk’, talking again and smiling.

Do you know that dysphagia, ie difficulty swallowing also exist in other health conditions such as ALS, complications from stroke and other medical treatments. ALS which is a motor neuron disease is 100% fatal and life expectancy is between 3 to 5 years. Dysphagia is the same in someone with Alzheimer as well as ALS.

Yet in ALS, doctors would recommend tube feeding. I am in an ALS support group. From the various sharing from people with that illness, a number of them mentioned that in the beginning when they received the devastating diagnosis of ALS, they had given an advanced medical directive to decline all forms of life extension and support which includes tube feeding, oxygen and tracheostomy. And yet, when it came to time when they could no longer eat, most had opted to have a feeding tube (they usually go for the gastric tube, ie PEG or the MIC-key tube). Because suffering of hunger is something that any human with awareness would not be able to stand. They said that a feeding tube has given them a quality of life for the time they have remaining. Some even had a PEG tube surgically placed the moment they started showing early signs of difficulty in swallowing based on their doctor’s advice. They do not need to worry about hydration and nutrition as the food can be administered via feeding tube. They need not force themselves to eat and risk having aspiration pneumonia due to the food going down the wrong track. They would occasionally indulge in a few bites of their favourite food. So if you post a question of whether to get a feeding tube or not in an ALS support group, most of the reply you receive would be to get one because it improves the quality of life.

Sadly, Alzheimer’s/dementia is the only medical condition where tube feeding is discouraged when they could no longer swallow. Just because they cannot verbalise their pain, it does not mean they are not suffering. I saw the difference tube feeding made to my mom. She was suffering when she was dehydrated and malnourished.

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Q: How did she react when the nasogastric tube was first inserted into her?

A: From ER, she had to be warded under close monitoring, ie stationed in front of the doctor counter as her vitals were still low. A nasogastric tube was inserted in the ward. For a semi conscious person, my mom sure had a lot of strength and put up a struggle…..initially 5 nurses had problem holding her down while one tried to insert the tube. She screamed so loud that it could be hear all over the ward (I was outside and not allowed in during the insertion).

Fortunately, my teacher was there, heard my mom scream and went in to coax my mom. She touched my mom and gently spoke to my mom to relax and swallow ‘some noodles’ (because my mom usually ate soft noodles). My mom relaxed and did the swallowing motion so the tube was successfully inserted without the need of any nurses holding her down. It is the approach and the nurses did not know my mother.

In subsequent tube insertion (as the nasogastric tube has to be changed after a certain period), a nurse from a nearby government clinic will come in to our place to do the change. She commented that it is easy to change for my mom was she is obedient. I just hold her and told her to relax and swallow some food.

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Q: Isn’t the practice just to try hand feeding and if they cannot eat, then to call hospice?

A: Yes, it is the practice of many countries. Initially if they ‘forget’ how to eat and most of the time can still swallow, then hand feeding through engaging the help of a speech therapist may work. But you still need to closely monitor their vitals (blood pressure, oxygen levels and heartrate) as well as  if they are passing enough urine and stool. If their vital signs are bad, and they are not passing out anything much, it means they are severely dehydrated and malnourished. If this continues, they would eventually slip into a coma when the body have severe electrolyte imbalance due to dehydration and the organs start failing.

Initially I did not know all this because outwardly my mother did not display any signs of distress. She just wanted to sleep all the time, her bp levels drop so much that the bp monitor in our home could no longer detect and she was not passing out much urine or stool. But she was still eating by hand, even though I had to be persistent in feeding her or else she would not eat. It started when I could not read her bp, I brought her to see her cardiologist, thinking for him to revise her bp meds. In the hospital, even the equipment of the hospital could not detect her blood pressure. The moment I told him my mom did not want to drink much water or eat much, I remember the look of concern in his face. He straight away ordered blood test and told me my mom had to be admitted to ICU straight away as her condition was critical.

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Q: Won’t they try to pull out the nasogastric tube?

A: You can bet they would. While we can reason with someone who still could think and reason, we cannot reason with someone who have Alzheimer’s or dementia. By the time they require tube feeding, the stage of Alzheimer is usually very advanced. In Thailand, the healthcare system supports tube feeding. Hence they have solutions for various challenges.

Special hand restraints and mittens are designed to address the issue of pulling out the tube. In fact, my mom is using specialised hand mittens which was actually designed by a Thai physician. He came out wit this design after feeling sorry for exhausted nurses and caregivers when patients tried to pull out IV and feeding tubes in hospitals. Hence, if we place our loved ones who have Alzheimer’s on tube feeding, we MUST have them wear hand mittens for long term. The ones my mom wears does not distress her and she has been wearing this for as long as she is on tube feeding. There are also DIY ones if you wish to see how to make one but I prefer the ones by Maysa Medical (I will link to their Facebook page– please note that even though the page is in Thai, the persons behind could speak and write well in English).

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Q: How do you wash her hands then?

A: I would remove the mitten one by one as I wash her hands with baby liquid soap water and then rinse with water once a day when I give her a bed bath. I would change the hand mittens once every 4 or 5 days (I have 3 pairs of these mittens) to wash.

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Q: But research had shown that there is no proof that there is any improvement of quality of life and extended lifespan when we place an Alzheimer’s patient on tube feeding. In fact, research shows there is no reduced risk of aspiration pneumonia when being placed on tube feeding.

A: First, we need to understand where these research are based in. In developed countries, majority of elderly with Alzheimer’s/dementia are placed in nursing homes or memory care centers. In assisted care facilities, it is not 1 to 1 care. One staff need to attend to many residents.

When we place a person on tube feeding, we have to ensure the person remains in an upright position, preferably a seated position during feed and at least 30 minutes after. While we tell a person with cognitive functions that are still intact to remain seated, we cannot do the same for an Alzheimer’s or dementia resident. Please tell me if any staff would have the luxury of time to sit down with them for 30 minutes to make sure they don’t slide. Usually after running the feed, they would leave the room to attend to another resident and come back much later. These residents would do whatever the heck they want and usually, they would slide down to lie down flat because it makes them more comfortable. If their digestion is no good, and they cough or have a reflux, it is easy for the feed to regurgitate upwards and then move into the lungs. I know because that was what initially my mother did. She slide down all the time (now it is much lesser as her body had gotten stronger from the nutrition and she was no longer lethargic).

It is important to realize that once we place an Alzheimer/dementia person on tube feeding, the level of care and monitoring will need to increase. If we are not able to spend the time to look after and monitor, it is true as the research suggest, that there would be an increased risk of aspiration pneumonia.

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Q: Did your mother’s quality of life improve after being placed on tube feeding?

A: At the time of writing this post, my mom has been place on tube feeding for about 9 months. For my mom, it DEFINITELY improve her quality of life. She has grown more energetic, in a better mood and sings again. Prior to tube feeding, she had cholesterol, high blood pressure that we had problem controlling and she was developing diabetes. Because she was very picky and only eat stuff that she loves such as cakes and biscuits. Of course we supplement with Ensure and soup (from boiled bones and meat) but she always try to find a way to take less.

With tube feeding, her cholesterol, bp and blood sugar are all under control. In the last checkup, the virus load count in her hepatitis B has gone negative, ie could no longer be detected. This is how proper nutrition can help improve health. She is now getting better nutrition compared to the time she was eating by mouth all these years.

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Q: If I were to place my loved one with Alzheimer’s on tube feeding, should it be a nasogastric or PEG tube?

A: The doctors in Thailand would recommend nasogastric tube first because it does not require any surgical procedure to be placed. If they pull out, we can reinsert another tube via their nose (use hand mittens to prevent tube pulling). They would rub against anything that makes them uncomfortable. Hence, if there is a PEG tube, they would surely rub at it and it may dislodge the tube or cause complications.

In persons with ALS (motor neuron disease), I noticed that they usually opt for PEG tube because they know enough and would not rub or try to pull out the tube. The PEG, placed in the stomach is less visible compared to a nasogastric tube that is hanging out from the nose.

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Q: How did it change your life as a caregiver after placing her on tube feeding?

A: I have covered in more detailed blog post on considerations we need to make before placing our loved one on tube feeding. It would definitely be tougher for the caregiver as they would require closer monitoring as they would be more bed bound (so bed bath, diaper change, bed sore management would come in). These would involve ongoing costs to sustain (acquire tube feeding food, medical treatment, diapers, disposable items such as enteral tubes and suction catheters, medication).

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Q: My loved one went through the same situation as your mother. We were advised against placing a feeding tube. They have now passed. Now you are making me feel extremely guilty of what I could have done for my loved one.

A: I wish to emphasized that it was never my intention to make anyone feel guilty. At that point, you did not know so you cannot blame yourself. The mindset is now so against tube feeding for Alzheimer’s. My mother and I are fortunate to be in Thailand. Thailand is the only country I know where the healthcare system is geared towards caring and preserving the life of elderly. Had my mom and I been back in our home country, or any other country, my mom would not be alive today.

The Thai healthcare have systems in place to support tube feeding and caregivers. Our tube feeding food is catered from the hospital where my mother is going for treatments. Each day, the food is prepared fresh using ingredients such as eggs, pumpkin, banana, green vegetables, meat, etc. The food is cooked, blended, sieved and placed into enteral bags. The preparation is dietician approved and constitutes an almost complete diet except for vitamin B and C which can be taken care of by a multivitamin. The demand for the food is very high as the hospital kitchen needs to prepare in 2 batches a day for different groups of customers and we can see there are a lot of orders. A few hospitals in Thailand, via their YouTube channel also have videos to teach caregivers how to prepare tube feeding food.

Then a nurse comes in to do the change of the feeding tube- I need not bring my mom to hospital for the tube change. If there is emergency, the nurses know what to do, they are familiar with bed bath, phlegm suction and managing Alzheimer’s patients.

If we are in any country, sure, maybe the doctor would casually say we can give tube feeding a try. But when they have huge phlegm buildup and started to wheeze or when they choke on phlegm (phlegm issue exists when a person gets dysphagia), we would panic and there would be not much guidance. Then most of the countries, they use milk formulas for tube feeding. It is EXPENSIVE and not many people can afford. In Thailand, they either prepare the food themselves using fresh ingredients or cater from the hospital (cost me 100 baht about USD3 or USD4 for a day of food in 4 enteral bags). It is also healthier that way. And to counter the issue of pulling out the tube, special hand mittens with ventilation are designed.

It is hard to pull this through if the healthcare structure does not have processes in place unless we are rich and loaded and could afford to hire the best private caregivers. With my blog posts and videos, I just wish to bring this to the knowledge that there is something that can be done. But I could see without the healthcare support, it would be a huge challenge.

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