Comfort in the final months

In the last months of dementia, the goal of care often shifts. Instead of trying to fix every problem, the family and care team focus on comfort: easing pain, keeping the mouth and skin healthy, helping breathing, and offering calm company.

A person in this stage usually cannot say "I hurt" or "my mouth is dry." You become their voice. This page explains the signs to watch for and the small, practical things that make a real difference each day.

What comfort care means

Comfort care puts the person's ease and dignity first. It can go along with other treatment, or it can become the main goal when treatments that aim to extend life no longer help or would cause distress.⁷

A family may decide, for example, to keep giving pain medicine but to skip a hospital trip or a round of antibiotics. Those choices are allowed, and they are not the same as assisted suicide.⁷ Moving a person with severe dementia to a hospital can be confusing and frightening. It can also bring new problems such as delirium (sudden, severe confusion).^5,7 Talk with the doctor ahead of time about what you want to happen in a crisis. Our page on advance directives can help.

Hospice is one of the best ways to get comfort care at home or in a nursing home. Palliative care offers similar help earlier in the illness.

Spotting pain when the person cannot tell you

Pain in late-stage dementia is easy to miss. It may come from a hidden fracture, a bladder infection, an old nerve problem, a mouth sore or a sore on the skin.^4,6 It may show only during certain activities or at certain times of day.¹² The person may show it in other ways:^2,6

• Grimacing, frowning or a worried look
• Moaning, groaning, crying out or calling for help
• Pale or flushed skin, swelling, or a fever
• Holding a sore spot, or pulling away when touched⁴
• New restlessness, hitting out, shaking or poor sleep

You know the person best. Nurses and doctors are told to ask family whether a behavior is new or different from usual.^1,4 If the person has a condition that usually hurts, such as a recent fall or a pressure sore, experts advise assuming they are in pain.¹

Agitation may be pain. Before anyone treats restlessness or aggression with calming drugs, the care team should check for pain and other causes first.⁵ In one study in 18 nursing homes in Norway, 352 residents with dementia were split into two groups. Those whose pain was checked and treated step by step had about 17% less agitation after 8 weeks than those who got usual care.³ Moderate evidence See agitation and aggression for more.

The PAINAD scale

PAINAD stands for Pain Assessment in Advanced Dementia. Researchers published it in 2003 for people who cannot reliably report their own pain.² Guidelines advise using a checklist like this, together with a full check by a clinician, for people who cannot rate their own pain.⁵ Strong evidence

You watch the person for a few minutes and give each of five items a score of 0, 1 or 2:²

Source for the table: Hartford Institute for Geriatric Nursing, Try This series.²

Add the five scores for a total from 0 to 10. A higher total means more likely and more severe pain. The guide treats a total of 2 or more as a signal to think about pain treatment.²

Tips for using it:

• Use the same checklist each time so you can see change over time.^1,4
• Watch at rest and again during care that may hurt, such as turning or bathing.^1,12
• Check again after any pain treatment, and any time behavior changes.⁵
• Write the scores down, with the time and what was going on. A behavior diary works well. Share it with the nurse or doctor.
• PAINAD is a guide, not a test. Scores depend partly on the skill of the person watching, so ask a nurse to show you how to use it.¹²

Treating pain

Pain near the end of life can usually be controlled.⁸ The doctor or hospice nurse may start with a mild pain reliever and step up if needed.^3,5 When a person can no longer swallow pills, pain medicine can be given by injection or through a small tube, even at home with a doctor's order.⁸

Some families worry about strong pain medicines called opioids, such as morphine. When used for pain at the end of life, studies have not linked them to an earlier death.⁸ Ask the team about side effects such as sleepiness and constipation, and how to prevent them. Never give extra doses, start or stop a medicine on your own. Talk with the nurse, doctor or pharmacist before changing anything.

Comfort steps without medicine help too: a change of position, a warm blanket, a quiet room, gentle music, and slow, calm care.

Mouth care

A clean, moist mouth is one of the most important comforts. Poor mouth care can cause sores and pain. Germs from the mouth can also be breathed into the lungs and lead to pneumonia.⁶

1. Brush the teeth gently after meals with a soft toothbrush. If brushing is hard, wipe the gums, teeth and tongue with a damp gauze pad or mouth swab.⁶
2. Take out dentures and clean them every night.⁶ Check the gums for red or sore spots.
3. When the person eats and drinks less, offer small sips of water or ice chips if they can still swallow safely.⁸
4. Moisten the mouth and lips often with a damp swab.⁸ A thin layer of lip balm helps cracked lips.
5. Do not force food or drink. It can cause choking and discomfort.⁸

Eating and drinking less is a normal part of the end of life. Fluids have not been shown to lengthen life or improve its quality at this stage, and IV fluids can make breathing harder.^7,8 Our pages on eating and swallowing and feeding tubes and comfort feeding explain these choices.

Skin care and positioning

A person who stays in bed or a chair most of the day can get pressure sores (also called bedsores). These are painful wounds where bone presses against skin. Good daily care prevents most of them:⁶

• Change position at least every 2 hours. Use pillows to support the arms and legs.
• Pad bony spots such as heels, elbows and hips.
• Move the person safely. Never pull on the arms or shoulders to lift or turn them. Ask a nurse or therapist to teach you how.
• Keep skin clean and dry. Wash gently with mild soap and pat dry. Change wet pads quickly. See bladder and bowel problems.
• Look at the skin every day for redness, rashes or open spots. Tell the nurse about any change.
• Moisturize gently without rubbing hard.
• Keep joints moving. Gentle stretching of the arms and legs can help prevent stiff joints. Ask the doctor first.⁶

Near the end, hands and feet may turn cool, blotchy or bluish. Use a light blanket for warmth. Do not use an electric blanket or heating pad, which can burn fragile skin.⁸

Breathing problems

Shortness of breath can be frightening for the person and the family. These steps can help:^8,10

• Raise the head of the bed or help the person sit up with pillows.
• Point a fan toward the face, or open a window for fresh, cool air.
• Keep the room calm. Speak softly and stay close.
• Ask the team about medicine. Opioids are the main medicine used for breathlessness at the end of life.¹⁰ Oxygen helps some people, but not all. Its use should be judged by whether the person seems more comfortable.¹⁰

Noisy breathing. In the last hours or days, saliva can collect in the throat because the person is too weak to swallow or cough. The breathing may sound wet or rattling.^8,9 There is no evidence that this bothers the dying person, even though it can be hard for family to hear.⁹ Turning the person onto one side and raising the head may help it drain. A nurse may use gentle suction in the mouth or give medicine to reduce saliva.^8,9

Breathing may also become uneven, with very shallow breaths, pauses, or fast, deep breaths.⁸ These changes are often a sign that death is near. See signs that death is near.

Being there

Comfort is not only physical. A person in late-stage dementia still takes in the world through the senses. You can connect through touch, sound, sight, taste and smell:⁶

• Hold a hand, or brush their hair.
• Play music they loved. Read aloud from a favorite book or religious text.
• Look at old photos together, even if they cannot name the people.
• Rub in a lotion with a scent they know.
• Sit outside together on a nice day, if they can be moved.

Most people can still hear after they can no longer speak.⁸ Tell them who you are. Say what you want to say. Silence is fine too. Faith, culture and family values also matter. A chaplain, clergy member or hospice social worker can help with spiritual needs and hard family talks.^7,8

See talking with someone who has dementia and music and arts therapies for more ideas.

Questions to ask the care team

About pain

• Can you show us how to use the PAINAD checklist?
• What pain medicine is ordered, and when should we ask for more?
• How will pain be treated if the person cannot swallow?

About daily comfort

• How often should we turn the person, and can you show us how?
• What mouth care products should we use?
• Is any special mattress or cushion available to prevent sores?

About the months ahead

• Which treatments still help comfort, and which might add burden?
• Who do we call at night or on weekends?
• What changes would mean it is time for hospice?

Getting help with comfort care

Hospice. Medicare covers hospice for people with Part A whose doctors expect they have 6 months or less to live and who choose comfort-focused care.¹¹ The hospice team comes to the home, assisted living or nursing home. You pay nothing for hospice care itself and up to $5 for each prescription for pain and symptoms. Room and board in a nursing home is not covered.¹¹ Read more on hospice care for dementia.

When to call.

Care for yourself. These months are hard. Grief can start long before a death. Share the work with family, ask about respite care, and see grieving someone still here and caregiver stress. The Alzheimer's Association 24/7 Helpline is 800-272-3900.⁶

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.