Caregiver Involvement and Education for Lecanemab Treatment
Physicians must establish a strong alliance with caregivers as the primary means of ensuring treatment adherence and safety monitoring for lecanemab, with mandatory education about ARIA symptoms, monitoring requirements, and the critical importance of reporting any neurological changes immediately. 1, 2
Essential Pre-Treatment Caregiver Education
Core Safety Information That Must Be Communicated
ARIA Recognition Training: Caregivers must be educated to recognize symptoms of amyloid-related imaging abnormalities including headache, confusion, dizziness, vision changes, nausea, aphasia, weakness, or seizure, and instructed to notify healthcare providers immediately if these occur 2
Bleeding Risk Awareness: Inform caregivers that intracerebral hemorrhage can occur, particularly with concurrent anticoagulant or thrombolytic use, and that ARIA can be fatal in rare cases 2, 3
Genetic Risk Discussion: Before APOE4 testing, discuss with caregivers that APOE4 homozygotes have substantially higher ARIA risk (34.5% vs 13.6% overall), helping them understand the implications of genetic results for treatment decisions 4, 5
Infusion Reaction Preparation: Educate about flu-like symptoms, nausea, vomiting, and blood pressure changes that predominantly occur with the first infusion 2
Structured Communication Framework
Initial Treatment Discussion
Meet jointly with patient and caregiver to answer questions about diagnosis, prognosis, treatment options, and monitoring requirements—this alliance is the principal means of ensuring physician instructions are followed 1
Provide written materials including the FDA-approved Medication Guide and ensure caregivers understand both potential benefits (27% reduction in clinical decline on CDR-SB) and risks 2
Discuss realistic expectations: Lecanemab slows decline but does not stop disease progression; caregivers need to understand this is disease-modifying therapy, not a cure 3, 6
Building Treatment Adherence
Establish pre-specified follow-up schedules known to and shared by all providers (general practitioners, specialists, pharmacists) with each visit documented on a treatment card that caregivers maintain 1
Create a communicative and empathetic relationship between healthcare team and caregiver to facilitate shared decision-making and address concerns about treatment burden 1
Address financial and logistical barriers directly: Cost concerns (Wcost) have the strongest direct association with treatment willingness (0.99 correlation), so discussing payment options and insurance coverage is critical for real-world adoption 7
Ongoing Caregiver Support Strategies
Monitoring and Safety Surveillance
Train caregivers on MRI monitoring schedule: Baseline, before 5th, 7th, and 14th infusions, then every 6 months, with additional scans if ARIA symptoms develop 3, 5
Provide emergency contact protocols: Caregivers should have 24/7 access to clinicians who can evaluate potential ARIA symptoms, as some can mimic ischemic stroke requiring urgent differentiation 2
Advise patients to carry treatment identification cards indicating they are receiving lecanemab for emergency medical situations 2
Educational Reinforcement
Use multiple simultaneous educational approaches: Leaflets at initiation, patient anticoagulation cards, group sessions, and re-education at every prescription renewal 1
Involve family members in care planning so they understand adherence importance and can actively support the patient 1
Provide access to support resources: Direct caregivers to patient registries and support programs (contact Eisai at 888-274-2378) to help further understanding of Alzheimer's disease and treatment impact 2
Reducing Caregiver Burden
Offer comprehensive psychoeducational training and support groups, which have been shown to reduce caregiver stress, improve patient behavior, and defer institutionalization 1
Refer to community resources routinely as a standard component of care, recognizing that caregiver education and support can reduce burden by 38% as measured by Zarit Burden Interview 1, 6
Consider nurse-coordinated care models where specialized nurses provide education, coordinate follow-up, and reinforce adherence, which has proven effective in chronic disease management 1
Culture-Specific Considerations
Tailor educational content to respect cultural beliefs and integrate health literacy considerations, as culture-specific communication builds trust essential for successful lecanemab use 1, 3
Address caregiver stress and life burdens that may limit ability to maintain regular medication schedules or attend follow-up visits, using empathetic approaches to understand barriers 1
Critical Safety Protocols for Caregivers
Anticoagulation Management
Caregivers must understand that patients requiring anticoagulants should not receive lecanemab until more safety data are available, given increased hemorrhage risk 3
If anticoagulation becomes necessary during treatment, immediate consultation with the prescribing physician is mandatory before any changes 3
Symptom Escalation Pathways
Establish clear protocols for when caregivers should seek immediate medical attention versus routine follow-up for various symptoms 2, 3
Ensure institutional preparedness with protocols for managing serious events that caregivers can access rapidly 3
Common Pitfalls to Avoid
Do not assume one-time education is sufficient: Continuous physician involvement throughout the disease process is critical, with regular reinforcement of safety information 1
Avoid overwhelming caregivers with information: Prioritize ARIA symptom recognition and emergency protocols first, then layer additional education over subsequent visits 2, 3
Do not neglect caregiver well-being: Stressed caregivers provide poorer care; addressing their psychological health improves patient outcomes 1