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Navigating Anti-Amyloid Infusions: A Practical Guide for Caregivers and Patients

Starting lecanemab or donanemab infusions is a significant step in managing early Alzheimer's disease, and it comes with a unique set of practical considerations. These medications require a consistent schedule of visits to an infusion center, regular MRI scans to monitor for side effects, and a commitment to tracking changes over time. While the process can feel intensive, understanding what to expect—from the initial dose ramp-up to managing potential side effects—can help you and your loved one feel more prepared and in control. There are concrete steps you can take to make this journey smoother, from planning your appointments to communicating effectively with the care team.

Key points

  • Anti-amyloid infusions (lecanemab and donanemab) are for early-stage Alzheimer's only and require confirmed amyloid in the brain.
  • Lecanemab is given every 2 weeks; donanemab is given once a month. Both require regular MRI scans to monitor for ARIA.
  • Start with a low dose and gradually increase. Monitor for side effects like headache, nausea, dizziness, and confusion.
  • These drugs slow progression modestly—they are not a cure. Reassess at 3 and 6 months to decide if continuing is right.
  • Logistical planning is key: find an infusion center, coordinate MRIs, track symptoms, and understand insurance coverage.
  • Always report new symptoms to the care team immediately. Do not stop the medication without consulting the doctor.

What Are Anti-Amyloid Infusions and Why Are They Used?

Lecanemab and donanemab are a new class of FDA-approved medications that target the amyloid protein, which builds up in the brain during the earliest stages of Alzheimer's disease. Unlike older medications that only manage symptoms, these drugs are designed to slow the progression of cognitive decline by removing amyloid plaques. They are not a cure, and they do not work for everyone, but for many people in the early stages, they can make a meaningful difference in preserving function for a longer period. These medications are given as intravenous (IV) infusions, meaning they are delivered directly into the bloodstream through a needle in the arm over about an hour.

The Infusion Schedule and What It Involves

The frequency of infusions differs between the two drugs. Lecanemab requires an infusion every two weeks, while donanemab is given once a month. Both require a significant time commitment, as you will need to travel to an infusion center, wait for your turn, and then sit for the hour-long infusion. Many infusion centers are primarily set up for cancer patients, so availability for these new Alzheimer's drugs can be limited, and you may need to travel to a larger medical center or a specialized clinic. It is normal to start with a lower dose and gradually increase to the full dose over several weeks to monitor for side effects.

The Critical Role of MRI Monitoring

A key safety requirement for these medications is regular MRI scans of the brain. This is because anti-amyloid drugs can cause a side effect called ARIA (amyloid-related imaging abnormalities), which includes small microhemorrhages or swelling in the brain. For lecanemab, you will need an MRI before your 5th, 7th, 14th, and 26th infusions. For donanemab, the MRI schedule is more intensive in the initial stages due to a higher observed incidence of ARIA. These scans are essential for catching any potential problems early, often before they cause symptoms. Most people experience no symptoms from ARIA, but in rare cases it can lead to serious issues like large strokes, so this monitoring is non-negotiable.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Confirm eligibility: neurologist verifies early-stage Alzheimer's with objective cognitive decline, amyloid evidence (PET or spinal fluid), and rules out other causes.

  2. Schedule infusions at a center offering lecanemab/donanemab; ask about wait times, experience, and plan for longer initial visits due to monitoring.

  3. Coordinate MRI schedule: for lecanemab, MRIs before the 5th, 7th, 14th, and 26th infusions; for donanemab, follow initial intensive schedule. Ensure results reviewed before next infusion.

  4. Track symptoms daily and reassess at 3 and 6 months; log ARIA signs (e.g., headache, confusion, dizziness, vision changes, nausea) and common side effects (nausea, diarrhea, bradycardia).

  5. Contact insurance about coverage, copay, and prior authorization for the specific drug; ask clinic or manufacturer about patient assistance programs.

  6. Discuss discontinuation plan with doctor: if side effects are serious or benefit insufficient, agree on next steps including other treatments and support services.

What not to do

  • Do not skip or delay scheduled MRIs; missing them risks undetected ARIA with serious complications.

  • Do not expect dramatic improvement or cure; these drugs slow progression modestly, so focus on stabilization or slowed decline.

  • Do not stop medication abruptly without consulting the neurologist; they may adjust dose or pause rather than stop entirely.

  • Do not combine with other anti-amyloid treatments or anticholinergic drugs (e.g., some sleep aids, bladder meds) without medical guidance; they can worsen cognition and interfere with treatment.

Practical tools

  • Appointment Planner

    Shared calendar (digital or paper) with all infusion and MRI dates, color-coded by type. Set reminders a week before each MRI. Checklist for visits: insurance card, medication list, snack, water, entertainment.

  • Symptom and Side Effect Log

    Daily log after each infusion noting new symptoms (e.g., headache, nausea, dizziness, confusion) and cognitive/behavioral changes. Example entry: 'Day after infusion #3: mild headache 2 hours, no other symptoms. Memory stable.' Reporting phrase: 'My loved one is on lecanemab, had 5th infusion yesterday, now has new headache and confusion. Should we come in?' If unsure: 'I'm not sure if this is related, but I want to be safe and report it.'

  • Insurance Navigator

    Call insurance with drug name; ask about coverage, copay per infusion, prior authorization, out-of-pocket maximums. Note representative name and date. Ask clinic about manufacturer assistance programs.

  • Comfort Kit for Infusion Days

    Pack blanket/sweater, headphones with playlist/audiobook, small pillow, snack, and for patient a familiar object (e.g., photo, stress ball) to ease anxiety.

  • MRI Preparation Checklist

    Before MRI: remove all metal (jewelry, glasses, hearing aids, dentures with metal). Confirm appointment within required window before next infusion. Arrange accompaniment if sedation or claustrophobia is a concern.

  • Emergency Symptom Reference Card

    Wallet/phone card listing: call 911 for sudden severe headache, seizures, loss of consciousness, new unilateral weakness, sudden vision loss; call clinic same-day for mild headache, mild confusion, nausea. Include clinic 24-hour number, drug name, date of last infusion.

Discuss with your clinician

Ask your doctor: 'Based on my loved one's specific health history, what is their individual risk for ARIA or other serious side effects?'

Discuss: 'How will we decide whether to continue or stop the medication after 6 months if there is no clear benefit?'

Clarify: 'Are there any other medications my loved one is taking that could interact with lecanemab or donanemab, including over-the-counter drugs or supplements?'

Ask: 'What is the plan if my loved one develops a serious side effect like a stroke or brain swelling? Where would they be treated?'

Inquire: 'Are there any clinical trials or research studies at this center that might offer additional support or monitoring for patients on these drugs?'

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