End of life in dementia

Dementia is a disease that keeps getting worse over time, and in its last stage it shortens life. Knowing what usually happens can help you make calm choices instead of rushed ones in an emergency room.

This section covers late-stage care decisions, hospice and palliative care, comfort, and the last days. Start with the part you need now.

What the last stage of dementia looks like

In late-stage dementia, the person often speaks very little or not at all. They usually need help to walk, then cannot walk. They need help with eating, bathing, dressing and toileting, often around the clock. They are also more likely to get infections, especially pneumonia (a lung infection).¹

Even so, a sense of who they are often remains. Many people still respond to touch, a familiar voice, music or a favorite smell.¹ Read more on Late-stage (severe) dementia.

One well-known study followed 323 nursing home residents with advanced dementia for 18 months. Here is what researchers saw:²

These problems are part of the disease itself, not a sign that anyone did something wrong. Eating problems, pneumonia and fevers are often signs that the end of life may be getting closer.²

The big decisions families face

Near the end, families are often asked to choose between treatments that may extend life and care that focuses on comfort. Common questions include:^6,7

• CPR (pressing hard on the chest to restart the heart). CPR can work after a sudden, unexpected cardiac arrest. It is much less likely to work in people near the end of life or with many serious illnesses, and it often breaks ribs.⁶
• Feeding tubes. In advanced dementia, tube feeding usually does not help people live longer. It can cause discomfort or infection.⁶ Offering small bites and sips of foods the person enjoys is a gentler choice. See Eating problems and feeding tubes at the end.
• Hospital trips. In the study above, about 4 in 10 residents who died had at least one hard treatment in their last 3 months. These included hospital stays, emergency room visits and tube feeding.² Ask the doctor whether a hospital stay is likely to help, or whether care can happen where the person lives. See Hospital stays and emergency rooms.
• Breathing machines, IV fluids and other life support. These can keep the body going but do not cure the illness.⁷

There is often no single right answer. A good way to decide is to ask: "What would they want, based on how they lived and what they said?" Then weigh how much each treatment might help against how much burden it adds.⁷

Putting wishes in writing

The best time to talk about end-of-life wishes is while the person can still take part. Waiting makes these talks harder as memory and thinking fade.^1,9 If those talks never happened, you can still think back on what the person said and valued over the years.⁹

Two kinds of papers help:

• An advance directive names a health care agent (someone to speak for the person) and records their wishes. It can be changed at any time while the person is able.^6,7 See Advance directives and health care agent.
• A medical order form turns wishes into orders a doctor signs. Most states have one, under names such as POLST, MOLST or POST.⁶ A doctor can also write a DNR (do not resuscitate) order, which tells staff not to do CPR.⁶

Give copies to the doctor, the care facility and the hospice team.

Hospice and palliative care

These two kinds of care both aim to ease suffering, but they are not the same.

Hospice is not a place. Most hospice care is given wherever the person lives, including home, assisted living or a nursing home.³ A team of doctors, nurses, aides, social workers, counselors and volunteers works with the family. A hospice nurse and doctor are on call 24 hours a day. The benefit also covers medical equipment, short respite stays of up to 5 days so caregivers can rest, and grief counseling for the family.⁴

People with dementia sometimes live longer than 6 months on hospice. Care can go on as long as the hospice doctor recertifies that the person still qualifies.³ You can also stop hospice at any time and go back later if the person is eligible.⁴

Hospice does not pay for room and board in a nursing home. Family members or facility staff still give most of the daily care.^3,6 Read Hospice care for dementia and Palliative care. For what Medicare covers more broadly, see What Medicare covers in dementia.

Keeping the person comfortable

When cure is no longer possible, comfort becomes the main goal. Good comfort care includes:

• Watching for pain. A person with late dementia may not be able to say they hurt. Tell the care team about any change in behavior.
• Moving the body. Turning the person at least every 2 hours and padding bony spots helps prevent bed sores.¹
• Mouth care. Ice chips, moist swabs and lip balm ease a dry mouth.^6,8
• Easier breathing. Raising the head of the bed or a small fan blowing cool air on the face can help.^6,11
• Connection. Gentle touch, a calm voice, favorite music and familiar scents can bring comfort.¹

See Comfort in the final months for more detail on pain signs, skin, mouth and breathing.

When death is near

In the last days or weeks, the person may sleep most of the time and eat and drink very little. Hands and feet may feel cool. Breathing may sound wet, or it may stop for a few seconds and then start again.⁸ These changes are a normal part of dying.

You can help by keeping the room calm, holding their hand and speaking softly. They may still hear you.⁸ Call the hospice team if the person seems to be in pain or upset.⁸ Read Signs that death is near.

Caring for yourself along the way

Grief often begins long before a death. You may feel sadness, guilt, anger, resentment or doubt.⁹ These feelings are normal. A social worker, chaplain or counselor can help you sort through hard choices, and hospice offers grief support to families.^4,9

Helpful pages:

• Grieving someone still here
• Caregiver stress and burnout
• When your husband or wife has dementia
• What to do after someone dies

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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.