It is said 65 percent of Alzheimer’s or dementia patients would develop dysphagia, ie gradually losing the swallowing reflex towards the end stage of their disease. Even though they could still swallow, the quantity of fluid and nutrients is no longer sufficient to keep them alive for long.
Hence, the decision would have to be made on the next course of action. In most Asian countries like Thailand and Singapore, the recommendation would be to go with nasogastric feeding, ie inserting a nose tube.
In end of June 2021, I placed my mom who have end stage Alzheimer’s on tube feeding. I will expand and explain the points below in future but below is a summary of my experience:
Advantages of placing dysphagia patients on Tube Feeding
1. Eliminating the need to force them to swallow food or fluids
No more spending hours to try to force or coax them to eat or drink. No more seeing them choke and cough each time they try to take fluids or semi fluids. If you have choked when drinking fluid, you know how horrible it feels. You can now feed them even though they are asleep or refused to get up.
2. Reduce the risk of aspiration pneumonia if you take proper care
If you watch other videos, it seemed that many studies in the West find no reduction in aspiration pneumonia after placing on tube feeding. It is true, if your loved one is placed in a nursing home where there is no one to one dedicated care, no one would be able to monitor to ensure the person does not slide down and remain in upright position. If you are caring your own at home, you can monitor better. You would need to change to hospital bed where you can adjust the height.
3. Most of them can eat, they just cannot swallow
Their body still can absorb and digest the nutrients. It is just that the swallowing mechanism no longer functioning well. I really do not agree to ‘let nature takes its course’, akin literally starving our loved one to death. If we can intubate someone who has ALS, gastroperisis or Parkinsons, why can’t we extend the same for someone with Alzheimer’s?
I feel a lot of joy when I see my mom regaining energy and starting to be playful again, once back the mind of a happy child.
Before that, she was looking as if she would into a coma and would not get up. Her mouth was always open because severe dehydration due to insufficient fluid intake was causing her entire body to be hot and uncomfortable.
However, this article will not be complete if I do not discuss the possible downsides because each of our situation is different.
Possible downside/disadvantages of Nasogastric feeding/tube feeding for dysphagia patients
When you make the decision for tube feeding, it comes with a lot of additional cost. For Alzheimer’s patients you need to buy special protective hand restraints because they will definitely try to pull the tube out. Also additional purchases:
- Hospital bed
- Oxygen concentrator (they would require oxygen therapy)
- Phlegm suction machine and the disposable tubes
- Ongoing purchases: diapers, wet wipes, food formulas, medical costs for tube change and follpw up checkups and medication.
2. Dedicated care would be required- your life will change
They would be more bed bound as their hands need to be restrained. Some may struggle and scream. Thankfully my mom did not as she was not upset at all with the hand mittens. When a person is bed bound, you will need to look into bed bath, diaper change, care to ensure no bed sore that involves moving them, oral care, etc. Also they like to slouch and slide down when you place them upright after food so you would need to watch them and have another person available to help lift them up.
It is almost round the clock care. And you need one more person on standby to help with lifting. So if you are on your own, it is almost impossible for you to manage tube feeding for someone with dementia.
3. Must manage the phlegm and mucus buildup as it is life threatening
Anyone who have a nose tube inserted would start to produce more phlegm and mucus as the tube is considered as a foreign body. For someone who does not have Alzheimer’s or compromised swallowing function, they would either swallow the mucus in the stomach or spit it out. In Alzheimer’s person, they may no longer be able to do this. So you would need a phlegm suction machine and if no one else is available, you would need to learn how to suck out the phlegm.
If not, the phlegm or mucus when hardened may block their airway, possibly resulting in choking to death. Or cause pneumonia as the phlegm enters the lungs. I do phlegm suction for my mom each day.
My mom has been on tube feeding for about 3 months. Frankly, I have not gotten 8 hours sleep for 3 months. I am amazed at times that our body is more resilient than we thought. And I am in the room with my mom almost the whole day.
It is well worth it. I’ve had no regrets when I see my mom regaining energy and starting to hum her favorite tune and smiling again. In fact, I would have regretted deeply had I not place her on tube feeding. My mom has done a lot and sacrificed for me all my life. What I am doing back for her is insignificant compared to what she has done.
It may be different situation for you. I understand that each person has their own hardships. Main thing is I wish to say, if you take care well, tube feeding can potentially improve the life of an Alzheimer’s patient. They will regain energy and vitality once they get sufficient nutrient and fluid intake. But we must be willing to pay the price and put in a lot of effort.
In anything we do, beginning it may be tough. But once we are used to it, it would get easier. Initially during the first few weeks it was really tough as my body and mind was struggling to adjust. But with determination, patience, persistent and love, you will be able to get through the phrase and adjust.