Signs that death is near

When a person with dementia nears the end of life, the body slowly shuts down. Breathing, skin color, sleep and eating all change. These changes can be frightening if you do not know what they mean. Most of them are a normal part of dying, not signs of suffering.^1,2

This page explains what you may see in the last days and hours, what helps, how to be present, and what to do right after death. It is written for families and friends who want to be ready.

Why the end can be hard to see in dementia

In late-stage dementia, a person may already sleep a lot, speak little or not at all, and eat less over many months.⁴ So some of the usual signs of dying may have been there for a long time. This makes it harder to know when the final days have started.

Even doctors and nurses often cannot say exactly when death will come. Not everyone shows every sign.² Blood pressure and pulse can look close to normal even in the last half day of life.³ If you are unsure, ask the hospice or palliative care nurse what they see. Their experience can help you plan who to call and when.

Signs in the last weeks and days

The changes below often start days to weeks before death.^1,2,3

• More sleep. The person sleeps most of the day and night. It gets harder to wake them, and they may answer slowly or not at all.
• Little interest in food or drink. Swallowing gets harder. Eating less is a normal part of dying.⁵
• Less urine. They pass less urine, and it may be dark. They may lose control of the bladder or bowels.
• Pulling away. They may seem less aware of people and things around them.
• Visions and talk of travel. Some people seem to see or speak with people who are not there, including people who have died. Some talk about going on a trip.^1,2

See Eating problems and feeding tubes at the end for why a feeding tube usually does not help at this stage.

Signs in the last hours to days

Some signs tend to come very close to death, often in the last two or three days.³

The breathing rattle happens in about half of people in their last days.³ It can be hard to listen to. Turning the person onto one side or raising the head of the bed often makes it quieter.^2,3 Medicines are sometimes used to dry up saliva, but studies have not shown they work well.³ Ask the hospice nurse what fits.

A clear moment. Sometimes a person who has been very quiet becomes more alert for a short time. They may look at you, smile or say a few words. This can happen near the end and is a natural part of dying.³ It does not always mean they are getting better. If it happens, use the time to be close.

Restlessness and confusion at the end

Delirium (sudden confusion that comes and goes) is very common in the last days. Experts estimate it affects at least half of dying people, and possibly up to 9 in 10.³ Most often it is the quiet kind: the person is drowsy and hard to reach. Some people become restless or agitated, or see things that are not there.^2,3

The hospice team can look for causes that can be eased, such as a medicine side effect or dehydration. They can also give medicines that bring calm.^2,3 Keep the person safe from falls, for example with a low bed or someone sitting nearby.² Do not argue or try to correct what they see. A calm voice and a gentle hand help more.

What helps in the final days

You do not need medical training to bring comfort. Small things matter.^1,2,5

1. Mouth care. When the person stops drinking, wet the mouth with a moist swab, a few ice chips if they can still swallow safely, or a spray the nurse gives you. Put balm on dry lips.
2. Do not force food or drink. Pushing food or fluids can cause choking or discomfort. Small tastes of a favorite flavor are fine if the person wants them.
3. Position and breathing. Turn the person gently every few hours, with pillows for support. Raise the head of the bed. A small fan blowing cool air on the face may ease breathlessness.
4. Temperature. Cool a warm forehead with a damp cloth. Warm cold hands and feet with light blankets. Do not use electric blankets or heating pads, which can burn fragile skin.
5. Skin. Rub lotion into dry skin. Keep the person clean and dry. The nurse or aide can show you how to change pads and sheets without much moving.
6. Pain and distress. Give the comfort medicines the hospice team prescribed, as they told you. Call them if the person moans, grimaces or seems upset.
7. A calm room. Keep a soft, dim light on, since darkness may be scary. Lower noise. Play music they love, quietly.

A person with late dementia often cannot say they hurt. Watch for wincing, moaning, new restlessness, trouble sleeping or other changes in behavior.^1,4 Our page Comfort in the final months explains how to spot pain and keep the mouth and skin healthy.

Being there

Keep talking. Many people can still hear after they can no longer speak or open their eyes.² In one small study, the brains of hospice patients who no longer responded still reacted to sounds.⁷ We cannot know what a person understands. Still, it makes sense to speak as if they can hear you.

Use the senses. In late dementia, people take in the world mostly through touch, sound, smell and sight.⁴ You can:

• Hold their hand or stroke their arm or hair
• Play favorite songs or hymns, or read a prayer or poem they loved
• Rub in a lotion with a scent they know
• Tell them who is in the room and that they are safe

Say what you need to say. Many families want to say "I love you," "thank you," "I'm sorry" or "goodbye." Some find it helps to tell the person that it is all right to go when they are ready, and that the family will be okay.⁶ Do this only if it feels right for you and your family.

Visitors. Let people come in small groups, if the person would have wanted that. Short visits at quieter, more alert times are often best.¹ Some families take turns so someone is always there. It is also fine to go home and rest.

Faith and customs. Tell the hospice team about any religious, cultural or family customs that matter around death, such as prayers, readings or how the body is cared for.² Hospice chaplains, social workers and your own faith leaders can help.² If the family needs an interpreter, ask the hospice for one.

If you are not there at the end. Some people die in the few minutes when a family member steps out. If this happens, it is not a failure. What mattered was the care you gave all along.

Many people write down things the person says in the last weeks. Those words can bring comfort later.¹

What to do right after death

You will know death has happened when breathing stops and does not start again, there is no pulse, and the person does not respond at all.

You can take a few moments. When a death was expected, there is no need to call anyone in the first minutes. Many families sit with the person, pray, or call loved ones to come say goodbye.

1. If on hospice, call the hospice team (not 911). In Virginia, a hospice nurse who cared for the person can pronounce an expected death when a doctor cannot be there.¹⁰ The hospice team can also help with the next steps.²
2. If not on hospice, call 911, unless the person's doctor gave you other directions ahead of time. If a death was not expected, the medical examiner may need to look into it before the funeral home can take the body.¹⁰
3. In a nursing home or hospital, the staff will handle the first steps. Tell them which funeral home you chose.
4. Call the funeral home. They come to take the body when the family is ready. Funeral homes must give you written price lists, and you can choose only the items you want.¹²
5. Ask for several copies of the death certificate. The funeral home usually orders them. You will need them for banks, insurance and other accounts.
6. Social Security. The funeral home usually reports the death to Social Security for you.¹³ A spouse or other family members may qualify for survivor benefits.¹³

For the full checklist of the weeks that follow, see What to do after someone dies.

After the death: care for yourself

Grief after dementia can feel mixed. Many people feel sadness, guilt, anger or doubt about the choices they made.⁶ Some also feel relief that the person's struggle is over. All of these feelings are normal. Many caregivers began grieving long before the death. See Grieving someone still here.

Hospice care includes grief support for the family.⁸ Medicare rules say a hospice must offer this support for up to one year after the death.⁹ You can use it whenever you are ready.

It is normal for grief to come in waves. If, months later, you cannot function, cannot stop yearning for the person, or feel life has no meaning, talk with your doctor or a counselor. Read more on grief, losing a husband or wife and prolonged grief disorder.

Should we wake the person to eat or drink?

• No. Let them sleep. Sleeping more is part of dying, and forcing food or drink can cause choking.^1,2
• Offer mouth care instead to keep the mouth moist and comfortable.

Is the rattling breath a sign of pain?

• It does not seem to cause the person distress, though it can be hard for family to hear.^2,3
• Turning them on their side or raising the head of the bed often helps. Call the nurse if you are worried.

Should we give IV fluids?

• Usually not. Extra IV fluid in the last week of life has been linked to more throat rattle.³
• Talk about this with the hospice doctor, along with the person's wishes. See feeding decisions.

How long will this last?

• No one can say for sure. The final stage often lasts a few days to a couple of weeks, but it can be shorter or longer.^1,2
• Ask the hospice nurse to tell you if they see the very late signs, so family can gather.

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.