Palliative care

Palliative care is medical care that eases the symptoms and stress of a serious illness. Its goal is a better quality of life for the person who is sick and for the family.^1,2 Many people think it is only for the last weeks of life. It is not.

Dementia is a serious illness that changes over many years. Palliative care can help at any point along the way, from soon after diagnosis to the final months. This page explains what it is, how it differs from hospice, and how to find it.

What palliative care is

Palliative (say "PAL-ee-uh-tiv") care treats the discomfort that comes with a serious illness. It can ease pain, shortness of breath, tiredness, constipation, upset stomach, poor appetite and sleep problems.¹ It can also help with side effects of other treatments.¹

The care comes from a team with special training. A team often includes doctors, nurses, social workers and spiritual advisors, plus other specialists as needed. The team works with the person's own doctors. It adds a layer of support. It does not replace the doctors you already have.²

The team looks after the family as well as the patient.³ It can help you understand the illness, talk through hard choices and plan ahead.

Palliative care can also be part of routine care from a primary care doctor or a specialist, not only from a special team.^5,6

Palliative care and hospice: how they differ

People often mix up these two kinds of care. Both focus on comfort and quality of life.⁵ The big differences are timing and what other treatment the person can keep getting.

One way to remember it: all hospice care is palliative care, but not all palliative care is hospice.¹

Some families start with palliative care and move to hospice later, when the person's health declines. Starting hospice earlier rather than later can give the family more support.⁶ Read Hospice care for dementia for the full Medicare hospice rules.

Why it can help at every stage of dementia

Palliative care can start at any age and at any stage of dementia, and the palliative care groups say getting it early matters.³ Here is how it may fit as the disease changes.

• Early stage. The team can help the person and family understand what lies ahead. It is a good time to plan for future care, even while the person feels fairly well.⁴ The person can still say what matters to them. See Early-stage (mild) dementia and Advance directives and health care agent.
• Middle stage. Caregivers often carry steady stress. Because decline is slow, they may take on more and more without noticing, until they are worn out.³ The team can support the family and help with symptoms such as poor sleep.^1,3 See Middle-stage (moderate) dementia.
• Late stage. People may lose the ability to dress, bathe and feed themselves. They may stop noticing hunger or thirst.³ The team can help you think through hard choices, such as whether to use a feeding tube. Research shows tube feeding does not help people with advanced dementia live longer and may raise the risk of pneumonia (a lung infection).³ See Eating problems and feeding tubes at the end and Late-stage (severe) dementia.

When home care is no longer possible, the team can also help arrange care in a nursing facility. It can help families find their way through the health care system.³

What the research shows

A large review in 2016 pooled 43 randomized trials of palliative care. Together they included more than 12,700 patients with many kinds of serious illness, plus about 2,500 family caregivers.⁹ Moderate evidence

Here is what the review found:⁹

• People who got palliative care had better quality of life and fewer bothersome symptoms after 1 to 3 months.
• They were more likely to have planned ahead for future care, and patients and families were more satisfied with care.
• They tended to use fewer health care services.
• Palliative care did not change how long people lived, either longer or shorter.
• Results for caregivers were mixed.

What this means in daily life. Palliative care will not slow dementia. Its aim is to make each stage easier to live with. In the best-designed trials, the gains were smaller than in the review overall.⁹ Still, the overall pattern points toward better comfort and more care that matches what the person wants.

What it costs

The medical part of palliative care, such as visits from doctors and nurses, is usually covered by Medicare, Medicaid and many private insurance plans. You may owe copays or coinsurance, depending on your plan.⁵ Check with your doctor and your health plan about coverage.⁵

With Original Medicare, Part B visits usually cost 20% of the Medicare-approved amount after you meet the yearly deductible.⁸

Planning talks are a key part of palliative care. Medicare Part B covers advance care planning talks with your doctor. You pay nothing when the talk is part of your yearly Wellness visit and your doctor accepts Medicare's approved amount.⁸

For other costs of dementia care, see What Medicare covers in dementia and Respite care.

How to find palliative care

1. Talk to the person's doctor. In most cases you need a referral from a doctor, whether the person is at home or in the hospital.⁴ You can say: "We are thinking about palliative care. What is available near us?"
2. Look for teams near you. GetPalliativeCare.org, run by the Center to Advance Palliative Care, has a provider directory you can search by state.^3,4 It also has a short quiz to help you decide whether palliative care may help.³
3. Check other places. Ask the person's health plan what it offers. Some states also have their own palliative care programs.⁵ If the person lives in a nursing home or assisted living, ask the staff which palliative care teams visit there.
4. Prepare for the first visit. Bring a medicine list and a short note on recent symptoms. Give the team copies of any living will or health care power of attorney.⁴
5. Meet the team. The team will meet with the person and family to learn about the illness and what matters most.⁴

At the first visit, it helps to share:⁴

• What a good day looks like for the person, such as time with family, being free of pain, or staying at home.
• Personal, religious or cultural values that should guide care.
• Treatments the person would or would not want, if they told you.
• Questions about what the illness may look like in the coming months.

If English is not the family's first language, ask for a medical interpreter so everyone can follow the talk.

Related help for dementia caregivers

Palliative care is one part of support. Another is the Medicare GUIDE program (Guiding an Improved Dementia Experience), which began July 1, 2024, and is planned to run for 8 years.¹¹ Through GUIDE programs, a care navigator helps people with dementia and their caregivers find services. Programs offer a support line open 24 hours a day, caregiver training and some paid respite. Respite help can be up to $2,500 per person per year, as of October 2026.¹¹ CMS posts a map and a list of GUIDE programs on its website.¹¹ Read more in Caregiver training and support programs.

Caregiving for someone with dementia is hard on the body and mind. Palliative care groups note that family caregivers face higher risks to their own health.³ Please see Caregiver stress and burnout and Grieving someone still here. A shared plan with family can also help; try the care circle tool and Sharing care with siblings and family.

When to ask for palliative care

You can ask at any time.⁴ It may be a good moment to ask if:

• The person has pain, poor sleep, breathing trouble or other symptoms that are hard to control.
• The person keeps going back to the hospital or emergency room. See Hospital stays and emergency rooms.
• You face a hard choice about treatment, such as a feeding tube or a hospital stay.
• You feel worn out, alone or unsure what to do next.

For more on keeping someone comfortable, see Comfort in the final months and Signs that death is near. For an overview of this section, go 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.