Home care for late stage dementia, Part 5: Eating/ swallowing problems

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]

In this part we start looking at a very common area of concern: when someone with dementia starts having eating/ swallowing problems.

Questions/ Comments by Dementia Care Notes: One very common and extremely worrying situation in late-stage dementia is when the person reduces or stops eating and drinking. Can you share why eating problems happen?

Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): There are many reasons why eating problems happen. The first thing to do in such cases is to distinguish between whether she doesn’t want to eat or whether she can’t eat/ swallow. These are very different.

If the person doesn’t want to eat, we need to understand why. The eating will improve once we resolve that problem. But if the person can’t swallow because the dementia has deteriorated, we have to do different things.

If the person doesn’t want to eat, we need to understand why. The eating will improve once we resolve that problem. But if the person can’t swallow because the dementia has deteriorated, we have to do different things.

DCN: Why would someone not want to eat?

Dr. Hegde: Illness and pain is one set of possible reasons. The person may have viral fever or some physical discomfort and so they don’t feel like eating. The person may have pain — ear pain, tooth pain, stomach pain. Or a sore throat which makes eating hurtful.

The problem could also gastritis caused by some medication, a side-effect sometimes seen with some common medicines. A person with a bloated stomach doesn’t want to eat, but may not tell you what the problem is. The medicines may need to be changed or discontinued.

Or the person may have gone into a behaviour pattern that she can’t break out of. Or she may be so confused or lethargic because of dehydration that she refuses to eat. The reason could even be as simple as the food not being tasty.

DCN: That’s a lot of possible reasons. But first, how can we know if a person doesn’t want to eat or if she can’t eat?

Dr. Hegde: Look for facial expressions of pain or discomfort, or whether it seems a stubborn refusal.

A throat infection may also prevent someone from swallowing. You may not be able to examine for throat inflammation, and the person’s voice may not be sore, but they find it easier in these case to sip fluids. If accompanied by a cold the person may have a runny nose If you find the problem, you can try to solve it.

See how suddenly the problem happened. If it happens suddenly it is very unlikely that the dementia has deteriorated to that point.

See how suddenly the problem happened. If it happens suddenly it is very unlikely that the dementia has deteriorated to that point. It can’t be that yesterday he ate rice and sambhar, chewing and swallowing properly, and today the dementia is so bad that he doesn’t eat.

One situation where the eating problem can happen in a relatively short term is in case of a vascular event.

DCN: By vascular event you mean something that interrupted the blood flow in the brain and caused damage, right? How can we know if a relatively sudden eating problem is due to a vascular event?

Dr. Hegde: A vascular event affects blood flow to the brain — a stroke, a mini-stroke. The damage due to it could affect any part of the body. Maybe in this person’s case it affects swallowing.

Look for whether the refusal behaviour is present in other activities also, like refusing a bath, refusing to walk, refusing to talk—that could mean it is psychological. Offer different food choices. A lot of people who suddenly stop eating may still eat their favourite food, like say a peda. If the person eats some food and not others, it cannot be due to a vascular event.

Be especially alert about vascular events if the person has related risk factors like hypertension or diabetes.

Check if some other cognitive decline happened around the same time as the eating problem—like a deterioration in comprehension or communication. That could indicate that the eating problem is because of a vascular event, and not a refusal to cooperate. Be especially alert about vascular events if the person has related risk factors like hypertension or diabetes.

DCN: So, families can look at all these aspects, gather data, and tell the doctor what they have observed.

…when you notice a swallowing problem, then whilst you are trying to figure out where the problem is, consider switching to mashed food consistency. This is because liquids are dangerous to give case of genuine swallowing difficulties.

Dr. Hegde: Correct. The doctor will try to understand if the eating problem is because of brain changes (organic causes) or if there is a behavioural component (which means it is psychological) or something else.

One thing is that when you notice a swallowing problem, then whilst you are trying to figure out where the problem is, consider switching to mashed food consistency. This is because liquids are dangerous to give case of genuine swallowing difficulties. So, play safe till you understand the situation better.

DCN: Regarding food taste: we often suggest that caregivers taste the food they give the person to make sure it is tasty, especially because foods taste different when liquidized. Also, don’t tastes change with age? Like they prefer more sweet things when older?

Dr. Hegde: Some foods are not palatable when mashed. You can’t mash an aloo parantha. But you could mash a rasgulla. If you are giving mashed consistency, select foods that taste good after mashing. And yes, the taste for sweet things is the last to go. Use it to your advantage. Add a little bit of sugar to food.

I remember one case of a diabetic resident who didn’t want to eat and so she was given a bit of ice-cream at the tip of the spoon, so that her first taste was sweet. She would open her mouth for it. She didn’t really appreciate the taste of the rest of the food, but she would continue eating.

When the person has eating problems, you won’t be able to give large portions of food. Try to increase the caloric value of your portions.

When the person has eating problems, you won’t be able to give large portions of food. Try to increase the caloric value of your portions. Like making dishes using condensed milk. Or roast and powder dry fruits (almonds, cashews, etc.) and sprinkle a bit of that powder on the food.

DCN: You mentioned dehydration as one of the reasons for refusing to eat. How can we notice and correct dehydration?

Slowly growing dehydration is often missed. Families may think the person is having a litre of water but it may be much less.

Dr. Hegde: Slowly growing dehydration is often missed. Families may think the person is having a litre of water but it may be much less. Correct that problem and things improve. IV fluids may be needed if the dehydration is severe. I have seen persons perk up after they are given enough fluid, and they start swallowing again on their own.

A dehydrated person looks dull. She wants to lie in bed most of the time, her skin looks very dull, eyes are sunken inside, the mouth is dry. Open the mouth to check the moistness in the tongue and in the oral cavity—dehydrated persons don’t have enough saliva. Or maybe you will see dry marks around the lips. The urine may start smelling. It may be strong and darker. There may be less urine. If the person is on diapers, the diaper may not get as wet, or you may need fewer diapers.

Making the person take enough water may be difficult. Some persons refuse plain water. Try mixing squash, or give nimbu pani (with salt and sugar) or thin buttermilk, whatever appeals to them.

Your doctor may want the person tested for sodium levels to suggest what you can give as fluid. But often, mild problems may not show up in test results, though the person looks dull.

Some persons keep refusing liquids of any sort. It is a big struggle to make them take even 100ml, and getting them to half a litre or more a day is almost unmanageable.

Your doctor may want the person tested for sodium levels to suggest what you can give as fluid. But often, mild problems may not show up in test results, though the person looks dull.

DCN: So, if the person looks dull, we shouldn’t assume it is because of decline in dementia.

Dr. Hegde: Yes, look for various possible causes for any decline. Dehydration is one, but there can be many others. Don’t assume any decline you see is caused by dementia. One more thing, continuing with issues around dehydration–maybe the person will complain of pain while passing urine. The doctor may advise testing for urinary tract infection, and also do other tests.

DCN: Some worried families get desperate when a person doesn’t eat. They try to force down the food.

Dr. Hegde: Yes, it is very worrying when you see the person hardly eating and you might be tempted to force them. But each time you try and force a person with dementia to do something it actually makes the resistance worse and make the task more difficult to complete.

Don’t panic if a few meals are missed. Look for reasons, try to solve them, observe things, and talk to the doctor to see how to proceed.

DCN: You said that “won’t eat” can also happen because of some psychological problem, some behaviour pattern. What is done in such cases?

Dr. Hegde: Usually, in behaviour problem situations, resisting food is not the only behaviour change. They may not cooperate in other ways too, and show behaviors like resistance to diaper change, resistance to get up, and other such things.

If they refuse to eat, and you’ve given the IV fluids (in cases of dehydration), made sure there are no aches and pains, ruled out everything, and it’s more than four or five days, then the doctor will probably consider medication.

Once we establish the cause of these behaviours we can start to solve the problem. If they refuse to eat, and you’ve given the IV fluids (in cases of dehydration), made sure there are no aches and pains, ruled out everything, and it’s more than four or five days, then the doctor will probably consider medication.

…tube feeding may also be needed to give the person enough nutrition if the person is very ill physically…

A Ryles tube (nasal feeding tube) may be needed for some days to ensure nutrition as medication will take some time to take effect. We feed through the tube as well as directly (normal eating with the mouth). Once the problem is resolved and the person is eating enough through the mouth, we remove the Ryles tube. The medication may take a few days to start working and one will have to be patient.

Note that tube feeding may also be needed to give the person enough nutrition if the person is very ill physically, say, the person has pneumonia.

DCN: Can you give some more examples of what may work for a “won’t eat” case?

Dr. Hegde: Sometimes you have to try things.

In one interesting case, we had an extremely thin lady who hadn’t eaten properly for two years from before she came to live at the residential facility I was working in. We made her sit with others when they were eating. She watched them. And we just left her. And she began eating. At home she had been fed in a separate place by the paid caregiver. Here, once she got company, she started eating again.

DCN: That’s quite a few things we can try for the “won’t eat” situations.

Now about the “can’t eat” situation, where there is a genuine swallowing problem due to the growing dementia. You said it will happen slowly.

Dr. Hegde: Yes, chewing starts taking longer. It takes much longer for the person to eat the same amount of food. She doesn’t seem to understand what to do with the food in the mouth. Some just grit their teeth and don’t open their mouth. They’ve forgotten what to do. You put the food before them, you try to coax them. Or take the hand if they can’t use a spoon. They might cough while swallowing liquids. Mashed, semi-solid food will have to be started.

And then you reach a stage where the person is on mashed food and now cannot swallow even that. You may need to think about feeding tubes.

And then you reach a stage where the person is on mashed food and now cannot swallow even that. You may need to think about feeding tubes.

DCN: What can we try if someone seems to have forgotten how to use a spoon or how to open the mouth and eat?

Dr. Hegde: One thing to try is hand-feeding. It’s not easy because the person may bite your hand. So maybe avoid hand-feeding rice and give a rolled up chappati so that you have some space between your hand and the person’s teeth. I’ve seen cases where a rolled chappati was placed in the person’s hand and her hand was moved up, and she just took over and fed herself.

Try smaller meals. Meals that take too long exhaust you and also exhaust the person. Give, say, one katori (small bowl) at a time, around four or five spoons. It may take fifteen to twenty minutes. Then after one or two hours give another small meal.

To help them remember to swallow, lift the chin, put the spoon of mashed food in, and then tip the head down to let them swallow. It’s an instinct. Stroking the throat can also help.

To help them remember to swallow, lift the chin, put the spoon of mashed food in, and then tip the head down to let them swallow. It’s an instinct. Stroking the throat can also help. Both these methods work well. Or try swallowing prominently in front of them and they may mimic you.

See what works for you. Some people touch the spoon to the lower lip and tap lightly to make the person open the mouth. Or they say “aaa…” and the person mimics and opens the mouth. Or they lightly massage the joint between the upper end of the jaw and the ear, the temporomandibular joint (TMJ).

These techniques work best when the person is starting to go into swallowing difficulties, and is pocketing the food and doesn’t know what to do with the food afterwards.

DCN: Can we check to know if the person really has swallowing problems?

Dr. Hegde: Usually a swallowing problem due to dementia deterioration starts with difficulty in swallowing liquids. They cough if given water, but may not cough when given food. That is when we switch to mashed or semi-solid food.

Usually a swallowing problem due to dementia deterioration starts with difficulty in swallowing liquids.

If possible, get a “swallowing assessment” done by an ENT or a speech pathologist who specializes in swallowing difficulties. The specialist will do tests and examinations and confirm whether there is an actual swallowing problem. They will recommend a suitable food consistency.

DCN: Tell us more about liquids and food consistency, and pocketing.

Dr. Hegde: When swallowing problems start, avoid giving liquids.

One concern at this point is how to ensure of enough fluid intake. You can give liquids between semi-solids, like one teaspoon of liquid after every two spoons of semi-solid food. A suitable consistency can be created using thickeners (these are not available easily in India). Or use some other way to get the desired food consistency.

Do not give more food if the person still has food in the mouth. If the mouth is full, and the person is not gulping down the food, put in a very small amount of water, very carefully. Sometimes that helps them swallow.

Pocketing is when someone keeps food in the mouth and forgets to gulp it down, so it stays there, in the mouth. If food is gooey, it’s less likely to be pocketed.

Pocketing is when someone keeps food in the mouth and forgets to gulp it down, so it stays there, in the mouth. If food is gooey, it’s less likely to be pocketed. Like a thick curd consistency—you just can’t pocket something like thick curd.

When a person has swallowing problems or pocketing problems, switch out of solid foods. Use consistencies that are difficult to pocket and easier to swallow.

DCN: Once you’ve done all this, and the person is still not swallowing, the person is no longer getting enough food. That is when tube feeding may be considered, correct?

Dr. Hegde: Yes. But as I said before, tube feeding may be required even in other cases, like when the person hasn’t been getting enough nutrition because of illness, or temporarily when medication has been initiated.

Tube feeding for the “can’t eat” is a decision that needs careful consideration and an understanding of the pros and cons.

DCN: Thank you, Dr. Soumya Hegde, for this discussion on understanding and handling situations where the person can’t or won’t eat food.

We will continue on a related aspect: tube-feeding in the next part, the concluding part of this interview series.

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. She can also be contacted at soumyahegde512@gmail.com.

Previous: Home care for late stage dementia, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life Next: Home care for late stage dementia, Part 6: Tube feeding and related decisions

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.