Palliative care with dementia: comfort, hard decisions and help for the family

Dementia is a long illness, and for much of it the person can’t tell you what hurts or what they want. Families end up reading signs and making decisions on someone else’s behalf, often in a hurry, in an emergency room. Palliative care is built for that. It doesn’t wait for the end of life, and it can go alongside the person’s other care,¹ looking after the family as well. This note covers what palliative care brings to dementia, the signs of pain to watch for, what the late stage looks like, the decisions worth making early, and the help Medicare offers caregivers.

The short answer

• Palliative care can be given during treatment for a serious illness, and you don’t have to be at the end of life to receive it.¹
• In late-stage dementia, people usually lose the ability to say what they need, so pain can show up as wincing, sounds, agitation, shouting or trouble sleeping.²
• Eating problems, fevers and pneumonia are common in advanced dementia, and families who understand what to expect can spare the person burdensome treatment near the end.³
• The American Geriatrics Society does not recommend feeding tubes for older adults with advanced dementia; careful hand feeding gives the same nutrition.⁴
• Through participating programs, Medicare’s GUIDE model offers a care navigator, a support line any hour, caregiver training and up to $2,500 a year for respite.⁵

What palliative care brings

A palliative care team looks after the whole person and the people caring for them. For dementia, that can mean treating pain, sleep problems and agitation, going through every medicine, helping the family understand the changes ahead, and putting the person’s wishes on paper while there’s still time to plan. It works alongside the person’s own doctor. When the illness reaches its last months, the same goals carry into hospice.

Pain that can’t be put into words

Communicating pain gets hard in the late stages.² The Alzheimer’s Association lists the signs to watch for:²

• Gestures, sounds and the face, such as wincing
• Changes in behavior, such as anxiety, agitation, trembling, shouting and sleeping problems
• Physical signs, such as pale or flushed skin, dry and pale gums, and mouth sores

If you suspect pain or illness, see the doctor promptly; pain medicine may be prescribed.² When behavior changes suddenly, ask whether something hurts before assuming the dementia has moved on. Tell the team what you saw, when, and what helped.

What the late stage looks like

The late stage of Alzheimer’s may last from several weeks to several years, and care is usually needed around the clock.² The person typically loses the ability to talk and express needs, though some core of the self may remain. They need help walking and eventually can’t walk, and they may become bedridden or chair-bound. Eating and swallowing get harder, and being unable to move around makes infections more likely.²

The best-known study of this stage followed 323 nursing home residents with advanced dementia for 18 months. More than half died; 85.8% developed an eating problem, 52.6% had a fever and 41.1% had pneumonia.³ When the person’s health care proxy understood the prognosis and the complications to expect, the resident was far less likely to go through burdensome interventions near the end, such as hospital stays, emergency room visits and tube feeding.³

The feeding tube question

When eating gets hard, families may be asked about a feeding tube. The American Geriatrics Society is direct: feeding tubes are not recommended for older adults with advanced dementia. Hand or spoon feeding, in a quiet and calm setting, provides the same nutritional benefits, and tube feeding can cause harm, including worse pressure ulcers.⁴ A surrogate decision-maker can make this decision, and the society advises starting the conversation about it early in the illness.⁴

Decisions worth making early

The best time to plan is while the person can still take part. Medicare Part B covers advance care planning, and it’s free as part of the yearly Wellness visit when the provider accepts assignment.⁶ Some questions to settle while there’s time:

• Who will make health decisions when the person can’t?
• Would the person want to go to the hospital for an infection, or be treated at home when that’s possible?
• What do they think about feeding tubes, breathing machines and CPR?
• Where do they want to be cared for as the illness advances?

Advance care planning in California explains the directive and the agent, and POLST in California explains the medical order for someone who is seriously ill.

Help for the family

Medicare’s GUIDE model, which began on July 1, 2024 and will run for eight years, pays participating dementia care programs to support people with dementia and their caregivers.⁵ Programs offer:

• A care navigator who helps the person and the caregiver reach clinical and community services⁵
• A support line that answers any hour⁵
• Caregiver training and education, and connections to community resources⁵
• Respite, with Medicare paying up to $2,500 per eligible person a year for in-home care, adult day programs or a short stay in a facility⁵

Not every practice takes part, so ask the person’s doctor or check the participant list Medicare publishes.⁵ Medicare has also paid since 2024 when practitioners train caregivers to help with the treatment plan for illnesses like dementia.⁷ Dementia care at home covers safety and daily routines.

When hospice fits

At the end of life, hospice is another option, focused on comfort, dignity and support for the person and the family. To qualify for hospice under Medicare, a doctor must find that the person has less than six months to live.² Hospice for dementia explains the guideline doctors use and what changes.

Questions to ask the doctor

• What stage is the dementia in, and what changes should we expect next?
• How will we know if she’s in pain, and what should we do about it?
• Which medicines are still helping, and which could stop?
• What would you advise if he gets pneumonia?
• Is there a palliative care team or a GUIDE program we can join?