Statistically, about 65% of Alzheimer’s/dementia patients would develop dysphagia, which is difficulty in swallowing. Dysphagia can also be due to other neurological condition and illness, or short term due to treatments such as radiotherapy. For medical conditions not related to Alzheimer’s/dementia, the option is to insert either a nose tube (nasogastric tube) or a PEG tube.
But if the person has Alzheimer’s or dementia, then there is no fixed treatment protocol in Malaysia, Singapore or most countries. Meaning, family members can either chose to insert a tube or to just continue hand feeding.
Please know if hand feeding is being continued, there is only ONE outcome, that is this person would pass very soon. Either through aspiration pneumonia (especially fluids entering the lungs) or severe electrolyte imbalance, malnutrition and dehydration.
Please visit Alzheimer’s/Dementia Tube Feeding Resource page for more information on articles I have written to help those who are considering tube feeding.
Misconception that feeding tubes do not work for Alzheimer’s/dementia patients with dysphagia
I gather through speaking with some healthcare professionals back in Malaysia that the overall consensus is that tube insertion is kind of discouraged as the opinion is very much influenced by practices in developed countries.
The reason why I want to write this article is because I wish that you make an informed decision. When we google or check YouTube, most would discourage placing Alzheimer’s patients on tube feeding. It seemed that many studies have shown there is no improvement. Some even suggested there is a higher risk of aspiration pneumonia if you place them on tube feeding.
First, please realize that these are studies in the West. In the West, 75% or more of elderly with Alzheimer’s/dementia are sent to nursing homes. What happens in nursing homes? Manpower shortage and neglect. For tube feeding, we need to ensure the patient remains at a minimum 30 degrees incline upward position for at least 30 minutes after feeding.
I wish to ask, do you think the staff in nursing home would have time to sit by the person’s bedside and make sure our friend remains in the incline?
Many elderly folks especially those with dementia notoriously like to slide down to try to lie flat because the incline position is uncomfortable. If they lie down, when they cough or if their digestion is no good, the food would reflux upwards and there is a danger of food going into their lungs causing aspiration pneumonia. Sometimes the end tip of the nose tube had moved upwards to the lungs and the staff, in a hurry did not check, would administer the food into the tube and goes towards the lungs. They may leave the room before the feeding is finished to attend to other things. So when they choke and struggle, no one is around to help them.
So if studies are based mostly on those staying in nursing or old folks home, then yes, it is very true. Once we place an Alzheimer or dementia patient on tube feeding, the level of care needs to be increased. If they are placed in nursing homes, I am not surprised there is a higher chance of dying faster after the tube is placed due to negligence resulting in aspiration pneunomia
Once, ABC in Australia did a coverage where a caregiver reported that staff in nursing homes are given very little time to complete tasks. For example, they are only given 60 minutes to wake up, bathe and prepare 10 residents for breakfast. I have a friend who actually worked in a nursing home in Australia. She confirmed that yes, they are really given 60 minutes to prepare 10 residents.
Also, if the patient is noisy, demanding or active, they would usually be sedated. This is not only practiced in the West but I understand from a friend who supplies items to nursing home, the practice is also the same in Malaysia. There is not enough manpower to control ‘unruly’ residents. The only way is to sedate them. If they are being fed and sedated, they would not know that they have slide down or that regurgitation had happened. It is the same that some adults who got so drunk and passed out died from choking on their own vomit (the alcohol with stomach content regurgitate upwards and the liquid went to their lungs).
In Asia countries, it is very different. Even though society is changing, it is still not common for adult children to send their parents to nursing home. Parents are usually cared for by their grown children when they reaches old age. The value and cultural practice is very different. With care, we can greatly reduce the risk of aspiration pneumonia but monitoring and preventing them from sliding down in a flat position.
Also, it goes again human values to ‘let nature takes is course’ when they can still absorb food and nutrients, just that they could not swallow. A person with intestinal problems would need to go around with a colostomy bag. A person with kidney failure would be admitted for dialysis.
So why can’t we consider tube feeding which is life saving for the person with Alzheimer’s/dementia? Why the end option given to them is so inhumane when most of them, prior to developing Alzheimer’s has been responsible and worked hard to make sure their kids never starve?
We can learn from Thailand’s compassionate healthcare system
I want to let you know that the practice is very different in Thailand. In Thailand, the protocol is to perform nasogastric insertion. If that fails, then PEG. Only if that fails, then there is no other choice but to ‘let nature takes its course’. This is because Thai healthcare operates on the principle to save the patient first.
The Thai healthcare system have processes in place to support and make it easier for the caregivers and their families. Got a problem? They have ways to solve it. This includes:
- nurses teaching family members on tube feeding, caring for the patient and even classes to teach them how to cook the meal for tube feeding (they do not rely on milk formula because it is too expensive)
- some hospitals even provides daily catering of tube feeding food, prepared fresh daily
- creation of comfortable hand mittens to cover the hands to prevent the pulling out of the tube
- nurses coming to homes to do the tube change once a month
- education videos uploaded by various hospitals in Thailand, healthcare professionals and even caregivers that teaches everything from food preparation, patient transfer (even with 1 person), oral care, bed bath and how to make the homemade mittens
I wish to write this because I wish for family members to know that there is another side of the coin. Most of the time, their digestive and secretion systems work absolutely fine. They can absorb nutrients, digest and eliminate waste.
The Western approach of discouraging nose tube is akin to ‘starving’ our beloved parents or elders to death. As they are not getting enough fluid, the heat will build up in their body. It is very uncomfortable but often they no longer know how to describe and tell us because dysphagia usually happens in the end stage of dementia or Alzheimer’s.
The Thai healthcare treatment protocol saved my mother’s life
Why I know this is because my dear mother is now on end stage Alzheimer’s and diagnosed with dysphagia. By then, we are already staying in Thailand. She was hospitalized twice. We tried our best to do the hand feed thing but it just did not work. She was literally choking on fluids and anyone who had fluids going into their lungs would know how horrible it feels. When she was readmitted to hospital, doctors said her blood work is so bad, her heartbeat so faint that she could lapse into a coma anytime.
All the doctors and specialists from 2 hospitals (one private and one government) who treated my mom said the solution is to insert a nose tube. By then, they were not optimistic as my mom’s vitals had gone very bad. My mom actually had no outward symptoms of distress or pain. Just that she reduced her food and fluid intake, wanted to sleep more often and was no longer cheerful or interested in anything.
I was worried my mom would try to pull out the nose tube. No worries, they have hand restraints. When my mom was hospitalized in a common ward, no one looked at her weirdly when they saw her hands covered out with mittens and tied to the bed post. They understand that she has Alzheimer’s and if her hands are not restrained, she would try to pull out the tube.
The nurses taught me how to care for my mom including doing bed bath, turning her, changing soiled diapers, feeding her food and medicine. These are just informal lessons. There is a formal one by a teaching nurse who came and spend time to teach us. Then there is a class to attend to learn how to make the tube feeding food. But in the end, we opted not to make the food as it is time consuming and we do not have sufficient manpower. We ordered from the hospital. It cost 100 baht per day (less than RM15) for 4 meals that comes in 4 enteral feeding bags.
Slowly, my mom regained her health and energy. The food, prepared daily from the hospital from fresh ingredients gave her the nutrients that she need. I need not have to force or coax her to eat which is stressful for both myself and her. Just administer food and medicine via the feeding tube.
I will write and translate more Thai videos from YouTube
I realized other countries do not have the systems are set up by the Thai healthcare system. First thing first, usually formula milk is used for tube feeding such as Ensure or Enercal. A friend of mine require 1 small can of Ensure milk powder per day for his mother when she was on tube feeding. How many could afford that?
Whereas if you are a Thai, there are abundance of videos from Thai hospitals that teaches you how to prepare these meals using ingredients such as pumpkin, banana, chicken meat, eggs, leafty vegetables, salt, sugar and oil. Just prepare once a day for 4 portions. Store the later meals in the fridge to be consumed later. Just that we have to be very careful with hygiene because any negligence can caused the person to suffer from food poisoning, diarrhea that may require hospitalization. I have translated one of the videos and plan to do more.
3 months ago today, I was in the hospital ward feeling overwhelmed at the new information that I needed to know and absorb. I saw a middle age auntie caring for her husband who is on tube feeding. She handled the feeding, administering medication and phlegm suction like a pro. With precision and familiarity.
That time, I do not know how to do a bed bath, change the nose tape (that secure the tube to the nose), do wheelchair-bed transfers, do passive exercise, phlegm suction, administer feeding via tube feeding, change really soiled diapers and survive with insufficient sleep.
But I managed to do these tasks now and are familiar with them. My mom’s hands are covered with the safety mittens but I no longer need to tie her hands to the bed. I could do phlegm suction and nose tape change without the need to restrain her. Therefore no matter how hard something may initially be, it will get easier and easier with practice I assure you. You just got to have persistence and willingness to learn because it will help you care for your loved one.
Of course, caring for an Alzheimer’s patient on tube feeding come with some risks such as increased phlegm/mucus secretion due to the tube, pulling out the tube, the person would be more bed bound (which comes with more care such as need to do bed bath, diapers change and becareful about bedsores).
There are ways to counter/ minimize each of these risks. I will write about my experiences as well as the video translations in the link below:
