My mom was just diagnosed with Alzheimer's. What do we do now?

Your first job: the first weeks

An Alzheimer's diagnosis is frightening, but you have time to act well. Nothing has to be decided today, except to get two things moving.

• Make sure the diagnosis is right. Ask what treatable causes of memory loss were ruled out (thyroid problems, low vitamin B12, depression, medication side effects). A neurologist, geriatrician, or memory clinic is the place for this.
• Start the legal paperwork now. This is the single most important early step, because she can only sign while she still has capacity (more below).
• Pick one family point person and start one shared record: the diagnosis, medications, and questions.
• Call the Alzheimer's Association 24/7 Helpline, 1-800-272-3900. It's free, any hour, for exactly this moment.

The diagnosis: things to consider

Alzheimer's is the most common cause of dementia. Diagnosing it is a process, not one test: memory and thinking tests, a brain scan (MRI), sometimes an amyloid PET scan or one of the newer blood tests, and, importantly, ruling out treatable look-alikes. Doctors describe it in stages, from mild (still largely independent) through a long middle stage to severe.

On treatment, be clear-eyed. The newer anti-amyloid drugs (lecanemab and donanemab) are only for early-stage disease with confirmed amyloid, are given by IV infusion, and modestly slow decline rather than stop or reverse it; they carry a real risk of brain swelling or small bleeds and need regular MRI monitoring, so they aren't right for everyone. Older medicines (donepezil and similar, plus memantine) can ease symptoms somewhat. Ask what fits her stage and health.

Before you leave the appointment, ask about these

• What type of dementia this is, how confident the diagnosis is, and which treatable causes were checked.
• What stage she is in, and what to expect next.
• Whether any medication fits, symptomatic or the newer anti-amyloid drugs, and the benefits and risks for her specifically.
• Whether a dementia care navigator is available (a free Medicare program now offers one, with 24/7 support).

The road ahead

Alzheimer's is cared for over years, and this is where your role really is. Here's the job, as a checklist.

Sort the paperwork first (while she still has capacity)

• A healthcare proxy, a financial power of attorney, and an advance directive, plus a HIPAA authorization (free forms: AARP, CaringInfo). Sign these now: once capacity is gone, the only route is a slow, public court guardianship.
• Keep those, the diagnosis, and her records in one place the whole family can reach. That's what Greenlue holds, so there's no binder to hunt for.

Make the home safe

• Reduce the big hazards: stove knob covers or shut-offs, locked-up medications and any firearms, cleared clutter and rugs, and good lighting.
• For wandering, add door locks or alarms and get her an ID bracelet or a wandering-response service.

Know what to watch for

Here's what MedlinePlus (the NIH's health service) says about when to contact the provider:

One thing worth knowing: a sudden jump in confusion over hours or days is often a treatable problem like a urinary or other infection, not the disease itself, and it deserves a same-day check. Go by what her own team tells you, and call 911 for any emergency.

Her day to day

• Keep a steady routine (same times for meals, dressing, sleep) and get daytime light and activity; it eases confusion, sleep, and late-day agitation.
• For difficult behavior, look first for a cause (pain, infection, hunger, overstimulation) rather than reaching for a medication; non-drug approaches come first.
• Communicate simply: one thing at a time, simple choices ("tea or coffee?"), plenty of time to answer, and talk with her, not around her.
• Care needs grow stage by stage, from reminders now to full daily help later. Adult day programs and in-home help can bridge a long way.

What she'll need from you, and protecting yourself

• Dementia caregiving is the heaviest kind; about 4 in 10 dementia caregivers experience depression. This is a real risk to you, not a weakness.
• Use respite care and adult day programs early, and lean on the Alzheimer's Association Helpline (1-800-272-3900) and a support group.
• Split roles with siblings and share a calendar, and use FMLA if you work (up to 12 weeks, job-protected, a few hours at a time).
• When home stops being safe, moving her to memory care is not a failure of love; it's a change in how you keep her safe. Tour options before you're forced to choose.

Nearly all of it is coordination

Which is exactly what Greenlue carries with you:

Common questions