Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.
Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]
Last time, we discussed eating and swallowing problems at length. In this concluding part of the interview series, we discuss tube feeding and related decisions and their consequences.
Questions/ Comments by Dementia Care Notes: Last time, we discussed that tube-feeding is an option for persons having setbacks in their ability to eat and needing temporary corrective action, as well as for persons who cannot swallow because of advanced dementia. In order to decide on tube-feeding, families need to understand the two types of tube-feeding are — Ryles (nasogastric) tube and PEG (Percutaneous endoscopic gastrostomy) tube—and their pros and cons.
Could you give us a simple explanation of a Ryles tube?
Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): A Ryles tube is a nasogastric tube. It goes through the nostril into the stomach. One end of the tube is outside the nostril, and the other end is in the stomach. The tube is secured by tape on the nostril so that a sufficient length of the tube remains outside. A cap is used to close the outside end. Food is given through this tube by removing the cap and inserting a syringe with liquid food, which flows into the stomach using gravity.
A Ryles tube can be inserted at home by a doctor or a nurse.
A Ryles tube can be inserted at home by a doctor or a nurse. It is a simple procedure that nurses are trained to do it, but you can tell the agency to send a nurse who has training and practice for this.
The important thing is that the family must learn how to feed through the tube.
DCN: How long can a Ryles tube be used?
Dr. Hegde: You need to change the tube regularly, maybe every two or three weeks. Your doctor will suggest what is suitable. A nurse can do this change at home.
You also have to use a new tube if the tube gets pulled out. You can’t re-insert a tube that has been pulled out.
With proper replacement and care, Ryles tube feeds can be continued for a long time. I’ve had persons on Ryles tube for one to two years.
DCN: How do we feed the person using a Ryles tube?
Dr. Hegde: Only liquid food can be given using a Ryles tube. The food consistency should be such that it can flow down the thin Ryles tube by gravity. That means you have to blend the food, sieve it, and dilute it. Otherwise the tube will get clogged. About frequency: your doctor will advise you on this, but usually you have to give food every two hours, around 150 to 200 ml.
The food consistency should be such that it can flow down the thin Ryles tube by gravity. That means you have to blend the food, sieve it, and dilute it. Otherwise the tube will get clogged.
You have to be trained on the feeding procedure. You have to practice it in the presence of the nurse till you can do it properly.
For example, before every feed, you have to check that the previous meal has been digested. You check the stomach contents by pulling out a bit using the syringe. It is called aspiration, and you need to learn it from the nurse. If the last meal has not been digested, you need to wait before feeding. Also, before the feed, you have to check the tube has not been displaced. Sometimes if the person coughs, the tube comes out of the stomach and coils inside the throat.
The person has to be upright for the feed, and remain upright for some time after the feed, at least fifteen to twenty minutes. Otherwise the person may regurgitate and swallow their vomit.
The procedure for the actual feeding involves many things, like when to kink the tube, when to straighten it, how to put food in the syringe, how to ensure air does not go in, and so on.
The procedure for the actual feeding involves many things, like when to kink the tube, when to straighten it, how to put food in the syringe, how to ensure air does not go in, and so on. Make sure anyone who feeds the person can do it properly.
DCN: Can you share some examples of food given using a Ryles tube?
Dr. Hegde: Use a mix of foods to get a balanced meal—like ragi milk, mixed vegetable soup, spinach juice, Ensure, fruit juice, Protinex, daal ka paani, things like that. Be careful about the consistency. The nutritional value of the food is actually very low because it is mainly water.
DCN: The other type of tube-feeding is the PEG (Percutaneous endoscopic gastrostomy) tube, where food is put directly into the stomach. How is a PEG tube inserted?
Dr. Hegde: A PEG tube involves creating a small hole into the stomach. Insertion is done in a hospital. It is a simple day procedure where an endoscopy is used to guide the procedure, a hole is made at the correct place, a tube inserted, and stitching done around the hole.
Families need to know about “tube care” for PEG tubes—the regular cleaning of the area around the hole they must do so that the area does not infected.
Families need to know about “tube care” for PEG tubes—the regular cleaning of the area around the hole they must do so that the area does not infected.
If the person fiddles with the PEG tube, it can be strapped into position so that the person doesn’t reach it. A folded dupatta or some other cloth can be used.
DCN: How often do PEG tubes have to be replaced? Also, suppose the person pulls out a PEG tube?
Dr. Hegde: Under normal situations, if well cared for, PEG tubes can stay in place for really long. They only need to be replaced if they look dirty or there is a break or any other concern at the opening. The person has to be taken to the hospital for this.
PEG tubes can also be pulled out by the person. Of course, a pulled-out PEG tube cannot be reinserted, so you have to go to the hospital to get the person checked up and also get a fresh PEG tube inserted. If the person is repeatedly pulling out the PEG tube and none of the measures to secure it have been successful, you may need to reconsider the tube feeding decision itself, or at least see if you want to switch to Ryles tube.
DCN: Any other tips to keep in mind when using tube feeding?
Dr. Hegde: Since there is no food intake through the mouth in most cases of tube feeding, you therefore have to make sure the mouth remains moist. Use moist cotton or a sponge for this, maybe before and after meals.
Also, remain alert about the output—there should be enough urine, and the person should not get constipated.
DCN: When is a Ryles tube used, and when is a PEG tube used?
Dr. Hegde: Ryles tube insertion is much easier and can be done at home. A Ryles tube is the choice for temporary feeding situations. For example, when someone needs tube feeding due to an illness affecting their nutrition, or when you are trying to maintain the person’s nutrition while waiting for medication to take effect. A Ryles tube is usually the first option even for genuine swallowing problems when you still trying to see whether you need it long term.
A Ryles tube is usually the first option even for genuine swallowing problems when you still trying to see whether you need it long term.
PEG tubes are considered when you believe that the person will not be able to start swallowing again and need a long-term solution.
One plus point of PEG tubes is that giving food is easier. A Ryles tube is thin and needs thin consistency food, so food is considerably diluted. A feed takes more time. The PEG tube is wider and food given using PEG doesn’t have to be as thin as that we give using Ryles tube. Feeding takes less time. Another thing is that a PEG tube can be concealed and may be more aesthetically pleasing.
Maintaining the tube can be a problem in the case of PEG, not just because of the care required to avoid infection, but also because tube replacements and pulled-out tubes require hospital visits.
DCN: Many families rush into the tube feeding decision if their loved one starts eating less. But once a family starts tube feeding, they find it difficult to stop it even if they feel such feeding is prolonging a situation and is uncomfortable for the person.
Dr. Hegde: The decision to opt for tube feeding should not be taken in a hurry. It is better that you first try all the other things, like feeding in smaller quantities, feed whenever they want, and all that.
Insist that your doctor tells you the pros and cons of various tube-feeding options. If possible, also speak to somebody who is not a doctor. Talk to a family that has gone through this process and understands the consequences of putting in a tube. Talk to a social worker who understands the situation.
Counselling is a must before choosing tube-feeding.
Insist that your doctor tells you the pros and cons of various tube-feeding options. If possible, also speak to somebody who is not a doctor. Talk to a family that has gone through this process and understands the consequences of putting in a tube. Talk to a social worker who understands the situation. This information-gathering is important because, as you said, once you put the PEG or Ryles tube, not many people have the heart to say, let’s remove it.
DCN: Suppose a person with dementia had earlier told the family that she would not like to be tube-fed. Suppose the family wants to respect this wish when the person develops swallowing problems. That means that they will not be able to get enough food into the person. The end will come. What can you suggest for families facing such a scenario?
Dr. Hegde: Families may decide against tube-feeding for many reasons. Maybe the person had clearly spoken against tube-feeding when she was cognitively alert. Or maybe you have seen research that says tube-feeding does not improve the quality of life in end-stage dementia. Maybe you feel the person has suffered enough and such feeding is pointless extension of life.
A conversation with the doctor is very important in such a situation. Talk to a doctor who knows the person with dementia and knows you. If the doctor seems uncomfortable or doesn’t seem trained to talk about tube-feeding decisions, look for a doctor who is familiar with palliative care. Discuss with other family members.
Opting against tube-feeding is a difficult decision. Sometimes one family member is ready for a no-tube decision, but others are not. Sometimes family members have conflict and blame around the decision.
Opting against tube-feeding is a difficult decision. Sometimes one family member is ready for a no-tube decision, but others are not. Sometimes family members have conflict and blame around the decision. That makes the decision difficult. But it can also be difficult if everyone leaves the decision to one person.
Sometimes when one parent is looking after the other parent, the children just tell the parent, it’s your decision. I tell them, please don’t just tell your Ma that it’s her call. It may be her decision, but it is also your responsibility to be there for her in that decision. Make sure you also say that Ma, whatever you decide, we are with you.
What usually happens is, when there is disagreement or when family members leave the decision to one family member, that family member just opts for tube feeding. They feel it is a safer decision, one without the chance of guilt or the chance of accusations later.
For someone who has to decide not to proceed with tube-feeding, I’d say, try not to make it just your decision. Try to have someone who will hold your hand, who can remind you that the person has suffered enough and can be allowed to move on.
For someone who has to decide not to proceed with tube-feeding, I’d say, try not to make it just your decision. Try to have someone who will hold your hand, who can remind you that the person has suffered enough and can be allowed to move on. The presence and support of someone else matters. It could be a nurse, a social worker, a friend, anyone. Because when you are watching kith and kin suffer like this, you don’t know whether you made the right decision. You need someone on your side.
DCN: Is there something else you’d like to say to families opting against tube feeding?
Dr. Hegde: In late-stage dementia, when the dementia has advanced so far that the person cannot swallow anything, often the problem is not just about food. The person will be having many problems. Cognitive impairment will be very high. In this stage, persons don’t show signs of pain, and don’t express hunger. They engage less. The care focus moves to palliation. You may do things like cutting out on some life-prolonging medications. You look for ways to make things more comfortable for the person. It is not sure how long it will take, but it seems clear that the person is dying.
All this is very difficult for families to see, but the person may not be suffering. Some families opt for giving IV fluids at this stage to give some comfort. It depends on what the family wants.
Coming back to feeding–once a person has swallowing difficulties, if you are not feeding them using tubes, then you are feeding through the mouth. They are going to cough. There’s a high risk of aspiration. Give what you can give using a suitable consistency–the semi-solid, mashed consistency, not liquids. Give them smaller quantities.
Coming back to feeding–once a person has swallowing difficulties, if you are not feeding them using tubes, then you are feeding through the mouth. They are going to cough. There’s a high risk of aspiration. Give what you can give using a suitable consistency–the semi-solid, mashed consistency, not liquids. Give them smaller quantities. Don’t worry about how much food is going inside. Maybe instead of four bowls of food a day you can give only one. You have decided against tube-feeding, so be okay with it. Don’t fret about it, don’t get anxious.
Eventually the person will go. That is what advanced stage is. Remember the person has suffered enough and may not be suffering now, even if it seems like that to you. Have someone who is with you. That is very important.
Dr. Soumya Hegde, thank you so much for this extensive discussion on so many topics around late-stage dementia care at home. We are sure many family caregivers will benefit from this.
Dr. Soumya Hegde practices in Bangalore as a Consultant Geriatric Psychiatrist. Her detailed profile and information on where she practices can be seen at this link to her Practo profile. Opens in new window She can also be contacted at firstname.lastname@example.org.Previous: Home care for late stage dementia, Part 5: Eating/ swallowing problems
Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.