The patient journey

First concern

Most journeys begin with a noticed change — by the patient, by a family member, or by a primary care physician at a routine visit. Memory lapses, word-finding difficulty, missed appointments, or changes in problem-solving and judgment are the most common entry points. The interval between first concern and first formal evaluation often stretches months or years, shaped by patient hesitancy, family dynamics, and primary care referral patterns.

Evaluation and diagnosis

Diagnosis typically involves cognitive screening, structured history with a knowledgeable informant, and biomarker confirmation — increasingly via plasma assay and, when treatment is being considered, amyloid PET or CSF testing. APOE genotyping is now part of the workup at most centers. The diagnostic disclosure conversation matters: it shapes how the patient and family understand what is happening and what their options are.

Treatment decision

For patients in the early symptomatic stage with confirmed amyloid pathology and appropriate baseline imaging, anti-amyloid antibody therapy is now a real option. The decision is not automatic. It involves weighing the modest expected benefit, the ARIA risk profile (informed by APOE status), the practical commitment of biweekly or monthly infusions and serial MRIs, and the patient's and family's own goals and values. Patients who do not initiate disease-modifying therapy are still actively managed — symptomatic therapy, lifestyle interventions, care planning.

Treatment and surveillance

For those who initiate therapy, the on-treatment phase involves regular infusions, MRI surveillance for ARIA at protocol-defined intervals, and ongoing clinical assessment. ARIA — when it occurs — is most often asymptomatic and detected on MRI; the management of symptomatic ARIA requires specialist judgment. For donanemab, the finite-duration model introduces a stopping conversation when amyloid is sufficiently cleared.

Caregiving and progression

Even with disease-modifying therapy, Alzheimer's remains a progressive disease. The caregiving role expands over time — from coordination and oversight, through hands-on assistance with activities of daily living, into 24-hour care. The financial, physical, and emotional load on family caregivers is substantial and under-supported in most health systems.

Long-term and end-of-life care

The transitions through assisted living, memory care, and eventually end-of-life care involve a layered set of decisions — clinical, financial, ethical, and personal. Advance care planning — initiated early, when the patient retains capacity — is one of the highest-leverage interventions available, and remains under-utilized. PatientSpotlight covers the system gaps along this path; the lived experience inside them is the frame that shapes everything else.