Comfort medicines

Path 2: Comfort first. The other path: Keep looking for causes.

Pain

• Ask the nurse to score pain before and after each dose. (The PAINAD scale: 5 minutes watching breathing, sounds, face and body. See pain they can't tell you about.)
• Acetaminophen first, by the clock: liquid or suppository when swallowing fails. (In a trial, about 2 in 3 needed nothing stronger. Label limit: six 500 mg tablets in 24 hours.)
• Opioid side effects: sleepiness, confusion, constipation, nausea. (Slowed breathing, mostly after large first doses.)
• Liquid morphine: say the dose back in mL, and use only the marked syringe. (Often 20 mg in each mL. Its label warns a mix-up can kill. Write down every dose and time.)

Opioids and time left. Two 2025 record studies found more deaths soon after a first opioid in dementia: in Denmark, 27% of new users died within 180 days, against 6% of non-users. Both say the cause may be the drug, the illness, or both. While more time is a goal, start low and watch the first month. When comfort is the goal, relief comes first.

Short of breath

• A fan: it eased breathlessness in a 50-person trial.
• Opioids: low-quality evidence they help, from 26 small trials; none by nebulizer.
• Oxygen: near death, 91% of patients without distress showed no change in comfort when it was stopped; in distress, a trial is reasonable.

Noisy breathing at the end

Once the rattle starts, nothing has beaten a dummy treatment in trials, and the noise troubles family more than the person. Each is worth a try; stop any that does nothing:

• Atropine drops under the tongue. (In some kits; an eye drop, so off-label here. In a trial, one dose did no better than a dummy.)
• Glycopyrrolate. (Its label: "not recommended in geriatric patients," for trouble passing urine, constipation, overheating, delirium and falls.)
• Scopolamine patch. (Its label warns of confusion and hallucinations in older people, and overheating. Take it off if their temperature rises.)

Fever and pneumonia

Ask the hospice how it handles pneumonia, before it comes. (Over 18 months, 52.6% of nursing home residents with advanced dementia had a fever, and 41.1% pneumonia.)

Antibiotics: both choices are faithful, choosing them for more time or declining them for comfort. Treating suspected pneumonia was linked with living longer, but treated residents scored worse on comfort. Hospices can give them: 16% used one in a VA kit study.

Fear, restlessness and distress near the end

• Lorazepam (Ativan): a calming liquid common in kits. (Boxed warning with opioids: deep sedation, coma, death. In the last days, that pairing is common and deliberate.)
• Haloperidol (Haldol): an antipsychotic in many kits, "to relieve restlessness or confusion." (Not approved for dementia; boxed warning for more deaths in older people with dementia.)

Lorazepam added to haloperidol in the last days of cancer: 84% of families rated their person comfortable, against 37%. This trial was not in dementia.

For mild restlessness, finding the cause beats medicine. For severe distress in the last days, medicine that brings sleep can be the kind choice.

Sleep and sedating drugs

Offered quetiapine (Seroquel)? Ask what it is for. (Sleep options, in order.)

• What it is: an antipsychotic with no approved use in dementia or for sleep, with the same boxed warning. At 25 to 50 mg it acts mainly as a strong sedating antihistamine.
• Evidence: no trial of it for sleep in dementia. For agitation, its benefit is small or absent.
• Risks: about 1 extra death per 50 people over 6 months, against no antipsychotic; falls, dizziness on standing, pneumonia, faster loss of thinking. It may be less deadly than risperidone or haloperidol.
• When experts choose it: Lewy body or Parkinson's dementia with frightening hallucinations, because older drugs are dangerous there, though its trials there were negative.
• If used: name the symptom, start low, check at 4 weeks, and say so openly if sedation is the aim.

The comfort kit, and what to ask the nurse

Use nothing from the kit until the nurse or doctor says. (A sealed box at home, so a nurse can say "give this now" at 2am. Store it away from visitors.)

One nonprofit's kit holds acetaminophen, haloperidol, atropine, lorazepam and morphine, plus suppositories for nausea and constipation. 86% of hospices surveyed said kits often avoided ER or hospital trips.

• "What is in our kit, and what is each one for?"
• "How much, in mL, how often, and what do I watch for?" (Ask them to show you with the syringe and write it down.)
• "What is the plan if he gets too sleepy?"
• "Is any of this risky with Lewy body or Parkinson's dementia?"

Palliative sedation

What it is: "the intentional lowering of awareness towards, and including, unconsciousness for patients with severe and refractory symptoms" (AAHPM, the US hospice doctors' academy). A last resort, after every other way to ease the symptom.

• Lightest first. (The lowest dose that relieves and lets them respond; sleep in spells before continuous sleep; planned pauses where possible.)
• It did not shorten life in a review of 1,807 cancer patients. (The review had no randomized trials.)
• The cost: they will not talk with you, eat or drink.
• You may ask for it, ask to wait, or ask for it to be light. (AAHPM: it "should not be considered irreversible in all circumstances.")

Faith and this choice. Refusing or withdrawing treatment "is not assisted suicide" (Alzheimer's Association). The Catholic Catechism accepts pain relief for the dying even at risk of shortening their days, when death is "not willed as either an end or a means." A family who wants their person awake as long as possible can say so.

Our biases, out loud: we lean on drug labels, reviews and mainstream US and European sources; few of these trials were in dementia. The AI assistant that helped research this leans toward establishment sources and hedged wording.

Checked 14 October 2026. Sources.