Eating problems and feeding tubes at the end

In the last stage of dementia, most people start to have trouble eating and swallowing. They may hold food in their mouth, cough at meals, or turn their head away from the spoon. Families often hear one question at this point: "Should we put in a feeding tube?"

This is one of the hardest choices a family can face. Feeding someone feels like the most basic way to show love. This page explains what research shows, what careful hand feeding looks like, and how to make a choice that honors the person you care for.

Why eating gets so hard

Dementia slowly damages the parts of the brain that control chewing and swallowing. Over time, a person may forget how to use a fork, forget what food is for, or forget to swallow. Swallowing problems can lead to choking and weight loss.⁷

A person in the late stage often eats less as they become less active. They may not feel thirsty and may forget to drink.⁶

Eating problems are also a sign that the illness is near its end. A well-known study followed 323 nursing home residents with advanced dementia for 18 months:¹

• About 86 out of 100 developed eating problems.
• Of those who had an eating problem, about 39 out of 100 died within the next six months.
• Residents whose family decision-makers understood the illness and its likely course were much less likely to get burdensome treatments near the end of life.

This can help families see eating problems as part of the disease, not a failure of care. See late-stage dementia for more on this stage.

First, check for problems that can be treated

Before you decide eating problems are from the dementia itself, ask the doctor to look for other causes. Weight loss near the end of life is expected, but it can also come from another illness, poor nutrition or medicine side effects.⁶ Other things to check include:

• Mouth pain, sore gums, a bad tooth, or dentures that no longer fit
• Constipation, an infection, or a new illness
• Depression, which can lower appetite (see apathy and depression in dementia)
• A noisy or rushed mealtime

A speech-language pathologist (a therapist trained in swallowing, often called an SLP) can watch the person eat. They may suggest a better sitting position, softer foods, or thicker drinks. In some cases they order an X-ray swallow test.⁸ Talk with your doctor or pharmacist before changing any medicine.

For everyday eating tips in earlier stages, see eating, drinking and swallowing and meals and nutrition.

What is a feeding tube?

A feeding tube sends liquid food straight into the body, so the person does not have to swallow. There are two main kinds:

• Stomach tube (PEG tube or G-tube). A doctor places it through a small cut in the belly into the stomach. This is the most common kind.⁵
• Nose tube (nasogastric tube). A thin tube goes through the nose, down the throat and into the stomach. It is usually used for a short time.

IV fluids are different. They give water and salts through a vein, but they cannot give the nutrition the body needs to stay alive.⁵

What the research shows

Families often hope a tube will help the person live longer or avoid pneumonia. Research in advanced dementia does not support these hopes.

The American Geriatrics Society (AGS), a national group of doctors and nurses who care for older adults, reviewed the evidence. In its 2014 position statement, it advised against feeding tubes for older adults with advanced dementia.² It found that careful hand feeding was at least as good as tube feeding for:²

• Length of life
• Aspiration pneumonia (a lung infection from food, drink or saliva going down the wrong way)
• Daily function
• Comfort

A 2021 Cochrane review (a careful summary of all available studies) looked at 14 studies of people with severe dementia. It found no clear evidence that tube feeding helped people live longer or feel more comfortable.³ There were no randomized trials, and the few studies that hinted at a benefit were weak and mixed.³

The burdens of a tube

The AGS links tube feeding in advanced dementia to:²

• Agitation and distress
• More use of restraints to keep the person from pulling the tube out
• Problems with the tube itself
• New pressure sores

A person may pull at a tube they do not understand, and restraints can cause injury. Tubes can also lead to infections.⁵ The person also loses the taste of food and the closeness of being fed by someone they know.

Careful hand feeding and "comfort feeding only"

The main alternative to a tube is careful hand feeding. A caregiver offers small amounts of food and drink by hand, slowly, for as long as the person is willing.^2,5

Some doctors write this as an order called "comfort feeding only." It means the goal of eating is comfort and pleasure, not reaching a set number of calories. The care team writes a hand-feeding plan that fits the person.⁴ If the person coughs, chokes, or turns away, the meal pauses. This wording helps nursing homes and hospitals understand that the person is still being fed with care. It is not a plan to stop feeding.

1. Sit the person fully upright. Keep them comfortable and upright, and keep them sitting up for about 30 minutes after eating.⁶
2. Pick a calm time and place. Turn off the TV. Allow plenty of time. Meals may take much longer than before.⁶
3. Offer soft foods. Try foods that are easy to chew and swallow, such as pudding, yogurt, applesauce or scrambled eggs.^6,7 Ask the SLP or nurse whether drinks should be thickened.⁶
4. Give small bites and sips. Wait until each bite is swallowed before the next. Gently remind the person to chew and swallow.⁶
5. Help them help themselves. Guide their hand to the spoon, or offer finger foods, if they can still do some of it.⁶
6. Offer favorite foods. Taste matters more than nutrition now. Sweet foods are often welcome.⁶
7. Watch for signs to stop. Coughing, a wet or gurgly voice, or trouble breathing after a bite are signs of swallowing trouble.⁸ Pause, and let the nurse or doctor know.
8. Keep the mouth clean. Brush teeth, clean dentures, and gently wipe the gums and tongue. This lowers the germs that can cause pneumonia.⁶

For more on mouth care and other comfort steps, see comfort in the final months.

Is the person hungry or thirsty?

Many families fear that their loved one will feel hungry or thirsty. Near the end of life, the body slowly shuts down. Eating and drinking less is a normal part of this.

Taking in less fluid is part of how the body dies naturally. According to the Alzheimer's Association, this tends to let the last days pass more gently. Giving IV fluids at this stage can make breathing harder, add discomfort, and drag the dying process out for weeks.⁵

You can still offer comfort. Offer sips, ice chips, or a moist swab if the person wants them. Keep the lips and mouth moist. Your touch, your voice and your presence matter more now than any amount of food. See signs that death is near.

Making the decision

Start with what the person wanted

If the person wrote an advance directive, start there. In Virginia, the state's Advance Medical Directive form calls a feeding tube "artificially administered nutrition and hydration." The form lets a person give their health care agent power to accept or refuse it. It also lets them write their own instructions about it.⁹ See advance directives and health care agents.

If there is no written plan, the decision-maker should think about what the person would have chosen. Then they should weigh what is in the person's best interest.⁵ Ask yourself:

• What did they say when a friend or relative was very sick?
• What mattered most to them: time, comfort, independence, faith, family?
• Would they have wanted a tube if they knew it would not help them live longer?

Think about the person's culture, faith and family values. Try not to let your own wishes take the place of theirs.⁵

Questions to ask the doctor

The Alzheimer's Association suggests asking about each treatment:⁵

• What is this treatment for, and how will it help?
• How long will any benefit last?
• What are the physical and emotional risks?
• Does it fit what the person would have wanted?
• Is it time to think about hospice care?

Pressure from others

Sometimes a hospital or nursing home suggests a tube, often before a person is sent back from the hospital. You have the right to say no. The AGS says facilities should respect the decisions of the person and their family, and should not push anyone toward tube feeding.²

If you feel rushed, ask for a meeting with the doctor, a social worker, or a palliative care team. Moves to the hospital can confuse and harm a person with dementia, so ask whether care can happen where they live.⁵ See hospital stays and emergency rooms.

If a tube is already in place

Sometimes a tube was placed earlier, before families had full information. If a tube is not helping, the family and doctor can decide whether and when to stop using it.⁵ Stopping a treatment that no longer helps is legal and ethical. The care team keeps giving comfort care and pain relief.⁵

When family members disagree

Family members often see this choice differently. Listen with respect, avoid blame, and ask a neutral person, such as a social worker or mediator, to help.⁵ See sharing care with siblings and family.

Caring for yourself

Many caregivers feel guilt, sadness, or doubt, even when they know they made a loving choice. Some begin to grieve before the person has died. This is called anticipatory grief. See grieving someone still here and caregiver stress and burnout.

Choosing comfort is not choosing to stop caring. Hand feeding keeps you close.

Common questions

Will my mother starve if she does not get a feeding tube?

She will still be offered food and drink by hand, for as long as she accepts it. When eating fades near the end, it is because the body is shutting down. In advanced dementia, tubes have not been shown to help people live longer.^2,3

Is refusing or stopping a tube the same as assisted suicide?

No. Not starting or stopping a treatment lets the disease take its natural course. The care team keeps managing pain and comfort.⁵

Can we plan for this now?

Yes. If your loved one is in an earlier stage, talk with them now about feeding tubes and write their wishes in an advance directive. This can spare the family a hard guess later.

When to get help

Education only. This page is general information written from the sources listed. It is not medical, legal or financial advice and does not replace a doctor, therapist or lawyer who knows your situation. How we write and check pages.