Hospice care for dementia

Hospice is care for the last months of life. It focuses on comfort, not cure. A team of nurses, aides, doctors, social workers and chaplains helps the person feel at ease and supports the family too.^1,2

With dementia, the decline is often slow, so it is hard to know when to ask about hospice. This page explains who qualifies, what Medicare pays for, where care happens, and what to do if hospice ends early.

What hospice is

Hospice aims to ease pain and other symptoms. It also gives emotional and spiritual support to the person and family.⁹

Choosing hospice means stopping treatment meant to cure the terminal illness.¹ It does not mean giving up care. The team keeps visiting and is on call day and night.²

Hospice is one kind of palliative care (care that eases symptoms). Palliative care can start at any stage of an illness, alongside other treatment. See palliative care for how the two differ.

In 2024, about half of all people with Medicare who died (52.9%) used hospice.⁴

Why hospice can help in late-stage dementia

In late-stage dementia, the body starts to fail. A well-known study followed 323 nursing home residents with advanced dementia for 18 months. More than half of them died during that time.¹³

The study found that:¹³

• Most residents (about 86%) developed eating problems.
• About half had fevers, and about 4 in 10 had pneumonia.
• After pneumonia, nearly half died within 6 months.
• Shortness of breath (46%) and pain (39%) were common.
• In the last 3 months of life, about 4 in 10 went through at least one hard treatment, such as a hospital stay, an ER visit, IV treatment or a feeding tube.

Understanding made a difference. When the health care agent knew the outlook and the likely problems, the person was much less likely to get those hard treatments near the end.¹³

Who qualifies

Medicare covers hospice when all of these are true:^1,2

1. The person has Medicare Part A.
2. The hospice doctor and the person's regular doctor (if there is one) certify that the person likely has 6 months or less to live if the illness follows its usual course.
3. The person, or the person's health care agent, chooses comfort care instead of treatment to cure the illness.
4. A hospice election statement is signed. It names the hospice, the start date and the attending doctor.

A doctor's referral is the usual first step. If you think it is time, tell the doctor who is caring for the person now.⁹

How doctors judge "6 months" in dementia

Medicare contractors use written guidelines to review hospice eligibility. The guide used for Virginia and many nearby states lists these signs for Alzheimer's disease and related dementias:³

• The person is at stage 7 or beyond on the FAST scale (a 7-stage scale of daily function in dementia, where 7 is the most severe).
• The person cannot walk, dress or bathe without help.
• The person has bladder or bowel accidents, at least some of the time.
• The person can say only a few words (about six or fewer) or repeats the same phrases, with no meaningful conversation.

In the past 12 months, the person should also have had at least one serious problem, such as:³

• Aspiration pneumonia (a lung infection from food or liquid going down the wrong way)
• A kidney infection or a serious blood infection (sepsis)
• Several deep pressure sores
• Fevers that come back after antibiotics
• Not eating or drinking enough, with weight loss of 10% or more over 6 months

These are guidelines, not strict rules. The same guide says some people who do not meet them still have 6 months or less to live. Other illnesses, such as heart or lung disease, and a clear decline over time also count.³ If you are told the person "does not qualify yet," ask what has to change, and ask again when things get worse. Read more about the stages of dementia.

What Medicare hospice pays for

The hospice team and family make a plan of care together. Medicare covers what is in that plan for the terminal illness and related problems:²

• Visits from doctors, nurses and nurse practitioners
• Hospice aides who help with bathing and personal care
• Social workers, counselors, chaplains and trained volunteers
• Medicines for pain and other symptoms
• Medical equipment and supplies, such as a hospital bed, wheelchair or incontinence supplies
• Physical, occupational and speech therapy when helpful
• Advice on food and eating
• Short hospital or facility stays for symptoms that cannot be handled at home
• Short respite stays so the caregiver can rest
• Grief support for the family after the death

A hospice nurse and doctor are on call 24 hours a day.² Keep the hospice phone number by the phone.

The four levels of care

Medicare pays for hospice at four levels. In 2024, nearly all Medicare hospice days (98.8%) were routine home care.^4,6

What it costs

Covered hospice care costs nothing from a Medicare-approved hospice. You may pay up to $5 for each outpatient prescription for pain and symptoms. For respite stays, you may pay 5% of the Medicare-approved amount.^1,2 There is no deductible for hospice.²

What hospice does not pay for

Knowing the limits helps prevent surprise bills.^1,2

• Room and board. Hospice does not pay rent at assisted living or the daily cost of a nursing home.- Treatment to cure the terminal illness. This includes drugs meant to treat the illness itself rather than ease symptoms.
• Care the hospice did not arrange. This includes ER visits, hospital stays and ambulance rides for the terminal illness. Call the hospice first, or you may pay the full cost.

Care for health problems unrelated to the terminal illness is still covered by regular Medicare, with the usual deductibles and coinsurance.² You can ask the hospice for a written list of drugs, items and services it says are unrelated, with reasons. It must give you this within 3 to 5 days.¹

New in October 2026: Under a federal rule that took effect October 1, 2026, every hospice must give a written addendum (an added page) at sign-up. It lists items, services and drugs the hospice will not cover.⁷ Read it closely and ask about anything you do not understand.

Where hospice care happens

Hospice usually comes to where the person already lives.^1,9

• At home. Family members or hired helpers give most of the daily care. The hospice team visits, teaches and supplies equipment.
• In assisted living or memory care. The hospice team works alongside facility staff.
• In a nursing home. The team adds visits, supplies and support. Hospice does not pay for the nursing home stay itself.
• In a hospice unit or hospital, for short stays when symptoms are hard to control.

Paying for hospice in other ways

• Medicare Advantage. If you are in a Medicare Advantage plan, Original Medicare pays for hospice care. The plan still covers unrelated care and extra benefits, such as dental and vision.²
• Medicaid. Many Medicaid programs cover hospice.⁹ Virginia Medicaid lists hospice among its long-term services and supports.¹² See Medicaid and long-term care.
• Veterans. All veterans enrolled in VA health care can get hospice if they qualify medically. There is no copay, whether the VA or a VA-contracted hospice gives the care.¹⁰ See VA benefits for dementia.
• Private insurance often covers hospice. Check with the insurer.⁹

For a wider look at coverage, see what Medicare covers in dementia.

How long hospice lasts

Hospice is not cut off at 6 months. Medicare covers two 90-day periods, then an unlimited number of 60-day periods.² At the start of each new period, a hospice doctor must certify again that the person is terminally ill.² After about 6 months, a hospice doctor or nurse practitioner must also see the person face to face before recertifying.¹ As of October 2026, this visit can be done by video through December 31, 2027.⁷

Stays can be long. People admitted for neurological (brain and nerve) conditions spent 169 days in hospice on average over their lifetime. People with cancer spent 51 days.⁴

You can change to a different hospice once in each benefit period.¹

When hospice ends before death (live discharge)

Some people leave hospice alive. In 2024, about 1 in 5 hospice discharges (19.1%) were live discharges.⁴ With dementia, the decline can level off for months. The person may stop losing weight, or fewer infections may happen. Medicare's coverage guide says a person whose condition is expected to keep improving should be considered for discharge.³

A hospice may discharge a person for only a few reasons:⁵

• The hospice decides the person is no longer terminally ill.
• The person moves out of the hospice's service area or switches to another hospice.
• Disruptive, abusive or uncooperative behavior by the person or others in the home seriously gets in the way of care. The hospice must first warn the family and try to fix the problem. It cannot discharge someone just for needing a lot of care.

A hospice doctor must order the discharge. The hospice must also plan ahead with the family and give any needed teaching or counseling before the person leaves.⁵

Losing hospice can feel like losing a lifeline. Before discharge, ask the team:

• Which equipment and supplies will stay, and which will be picked up?
• Who will now order comfort medicines and refills?
• Can the doctor order home health care or palliative care?
• What changes should make us call you to check eligibility again?

Stopping hospice by choice

A person or health care agent can stop hospice at any time. This is called revoking hospice. The hospice will ask you to sign a form with an end date.² Do not sign or date a stop form until the day you want care to end. Never sign one you did not ask for.²

Choosing a hospice

Medicare pays only for Medicare-approved hospices.² You can compare hospices on Medicare's Care Compare tool, ask the doctor, or call 1-800-MEDICARE (1-800-633-4227).²

Questions to ask:⁹

Questions about dementia care

• How many of your patients have dementia? How do you train staff for it?
• How do you spot pain in someone who cannot say they hurt?
• What do you do for restlessness, fear or agitation?

Questions about visits and nights

• How often will the nurse and aide come?
• Who answers the phone at night and on weekends? How fast can a nurse come?

Questions about money and rules

• Are you Medicare-certified? How long have you been open?
• What will we pay for?
• What happens if the person no longer qualifies?

Getting ready and getting support

Hospice works best when the person's wishes are already known. It is best to talk about end-of-life wishes while the person can still take part in decisions.¹¹ An advance directive names a health care agent who can choose hospice when the person can no longer decide.

Call the hospice first when something changes. But call 911 for a fire, a fall with a serious injury, or any emergency where someone is in danger. Tell the dispatcher the person is in hospice, and have any do-not-resuscitate papers ready to show. If you as a caregiver feel hopeless or have thoughts of suicide, call or text 988 any time.

Use respite stays, and let the hospice social worker or chaplain help you. Read about caregiver burnout and grieving someone who is still here. The Alzheimer's Association Helpline at 800-272-3900 is open 24 hours a day.

For the next steps, see comfort in the final months, eating problems and feeding tubes, and signs that death is near. For the bigger picture, return to end of life in dementia.

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.