The Being Patient Checklist
Just Diagnosed With Alzheimer’s?
Here’s What to Ask Your Doctor.
A guide to understanding your diagnosis, treatment options, and care — with links to Being Patient’s independent journalism.
Use this guide to make the most of your time with your doctor. Questions are organized by topic and include links to in-depth resources from Being Patient’s expert-reviewed reporting.
Understanding the Diagnosis
What stage of Alzheimer’s am I in, and how was this determined?
Alzheimer’s disease is typically categorized as early (mild), middle (moderate), or late (severe) stage, based on cognitive assessments, imaging, and biomarker results. Knowing your stage is essential to understand which treatments are suitable — there are some medications that are currently limited to early-stage patients with confirmed amyloid pathology.
Are there any specific tests or biomarkers that were used in my diagnosis?
Revised diagnostic guidelines now prioritize biomarker confirmation — including amyloid PET, tau PET, and cerebrospinal fluid (CSF) analysis — rather than relying solely on clinical symptoms. A biomarker-confirmed diagnosis gives your care team a clearer picture of which specific pathologies are driving your symptoms, which is especially important when considering treatment options or clinical trial eligibility.
Can I get a blood test for Alzheimer’s, and what do the results mean?
Blood-based biomarker tests — including tests that detect phosphorylated tau (p-tau217) and amyloid beta ratios — are now commercially available and increasingly used in primary care settings and specialist clinics. While a positive result indicates the presence of Alzheimer’s pathology in the brain, results must always be interpreted alongside clinical history and other diagnostic findings by a qualified specialist.
Treatment Options
What are the available treatment options, and how do they work? Can you categorize the symptomatic and disease-modifying therapies for me?
There are two fundamentally different categories of Alzheimer’s treatment. Symptomatic medications — including cholinesterase inhibitors like Donepezil and the NMDA antagonist memantine — help manage cognitive symptoms but do not alter the course of the disease. Disease-modifying therapies (DMTs), including the recently FDA-approved monoclonal antibody drugs Leqembi and Kisunla, target amyloid plaques in the brain and have been shown in clinical trials to modestly slow cognitive decline in early-stage Alzheimer’s, though neurologists remain divided on the magnitude of real-world benefit.
What are the potential benefits and risks of each treatment?
A fully informed treatment decision requires understanding not only the potential benefits — such as slowing memory decline — but also the risks, which vary significantly between drug classes. For monoclonal antibody therapies in particular, serious side effects including ARIA (amyloid-related imaging abnormalities, involving brain swelling or microbleeds) affect a meaningful proportion of patients and require regular MRI monitoring throughout treatment.
Are there lifestyle changes or non-pharmacological interventions I should consider?
Research increasingly supports lifestyle interventions as a complement to medical treatment for Alzheimer’s and dementia. Evidence-based strategies include regular aerobic exercise, the MIND diet, quality sleep, cardiovascular risk management, hearing loss treatment, and sustained cognitive and social engagement — all of which have been associated with reduced risk of cognitive decline or slower disease progression.
Read our learning guide on 14 Ways to Prevent or Delay Dementia
Medication Management
How will my current medications interact with Alzheimer’s treatments?
Polypharmacy — the use of multiple medications simultaneously — is common in older adults and can create significant drug interaction risks when adding Alzheimer’s treatments. Anticoagulants (blood thinners) are of particular concern for patients considering monoclonal antibody therapies, as they may compound the bleeding risk associated with ARIA. Always bring a complete medication list, including supplements, to your appointment.
Monitoring and Follow-Up
How often will I need to see you for follow-up appointments?
Follow-up frequency depends heavily on which treatments you are receiving. Patients on monoclonal antibody infusion therapies like Leqembi or Kisunla are required to undergo regular MRI scans — typically before treatment begins and at multiple intervals during the first year — to screen for ARIA. Understanding the monitoring schedule upfront helps families plan for the practical and logistical demands of treatment.
What symptoms or side effects should I report immediately?
Patients and caregivers should be given a clear list of warning signs that warrant urgent contact with the medical team. For those on mAB therapies, this includes new or worsening headaches, confusion, dizziness, vision changes, and difficulty walking — all potential indicators of ARIA. Having this information in writing, shared with all family caregivers, is a critical part of safe treatment management.
Support and Resources
How can I involve my family in my care plan?
Dementia care is a family undertaking, and research shows that caregivers who receive early training and support have better outcomes — as do the people they care for. Ask your doctor about connecting with a social worker, care coordinator, or support group, and consider having a family meeting with your care team to ensure everyone understands the diagnosis, treatment goals, and care responsibilities ahead.
Medications and Treatments
Read about the difference between Leqembi and Kisunla
Should I get a genetic test for Alzheimer’s before going on a mAB drug?
Drug labels for both Leqembi and Kisunla recommend — but do not require — ApoE genetic testing before starting treatment. Patients who carry one copy of the ApoE4 gene face a significantly elevated risk of ARIA, while those who carry two copies (APOE4 homozygotes) face the highest risk of all. Despite this, many patients begin these therapies without being offered genetic testing, leaving them unaware of their individual risk profile. Being Patient strongly encourages patients and families to ask for this test before starting treatment.
Can you explain the risk of ARIA associated with mAB drugs?
ARIA (amyloid-related imaging abnormalities) is the primary safety concern with monoclonal antibody therapies for Alzheimer’s. It involves either brain swelling (ARIA-E, or edema) or microbleeds (ARIA-H, or hemosiderosis), and is detected via MRI. ARIA often occurs without obvious symptoms and resolves on its own, but it may require pausing infusions for weeks or months and in rarer cases can cause serious neurological symptoms requiring urgent care. ApoE4 status is the strongest known predictor of ARIA risk.
How do cholinesterase inhibitors work, and are they right for me?
Cholinesterase inhibitors — including Donepezil (Aricept), rivastigmine (Exelon), and galantamine (Razadyne) — work by slowing the breakdown of acetylcholine, a neurotransmitter important for memory and learning. They are available in several formats including daily pills, twice-daily capsules, and skin patches. These drugs do not stop or reverse Alzheimer’s progression, but they can provide meaningful symptomatic relief for some patients, particularly in the mild to moderate stages.
Treatment and Care Considerations
What non-drug approaches can help manage behavioral symptoms of Alzheimer’s?
Behavioral and psychological symptoms of dementia (BPSD) — including agitation, anxiety, sleep disturbance, and mood changes — often respond well to non-pharmacological approaches before medication is considered. Evidence-based options include music therapy, pet therapy, aromatherapy, structured daily routines, and creative engagement programs. Many dementia specialists recommend trying these approaches first, given the limited evidence and side effect profiles of many psychiatric medications in older adults.
What support is available for family caregivers?
Caregiver burnout is a documented and serious risk — studies show that up to 40% of dementia caregivers experience significant depression, and their own health outcomes can deteriorate over the course of caregiving. Early access to caregiver education, respite care, and support groups has been shown to delay nursing home placement and improve quality of life for both caregivers and people living with dementia. Ask your care team specifically about local and online resources designed for dementia caregivers.
Am I a candidate for any Alzheimer’s clinical trials?
Clinical trial participation can give Alzheimer’s patients access to cutting-edge treatments — including investigational drugs, imaging protocols, and non-pharmacological interventions — often at no cost, while contributing to research that will benefit future patients. Many trials actively recruit participants at specific disease stages or with particular genetic and biomarker profiles, so asking your neurologist about eligibility early in your diagnosis can open doors that may close as the disease progresses.
Sign up for our Trials Update — the latest in Alzheimer’s clinical trials
