A guide for families

Alzheimer's just
entered your life.
Here's where to start.

Whether it arrived as a formal diagnosis last week or a slow-building concern over months — this guide gives you the essential information and concrete steps that actually matter, without the overwhelm.

I am: Newly diagnosed Partner / spouse Adult child Other / curious Clear
01

What to do in the next 30 days

These are the actions that matter most — organized by when to do them. Start here before anything else.

Because you were just diagnosed: The most important thing right now is getting to a neurologist to ask about new disease-slowing treatments. These only work in early stages — the window is real but open. You also have more time than it feels like: early stage typically lasts 2–4 years and most people remain largely independent throughout.
Because your spouse was diagnosed: Your two most time-sensitive tasks are (1) seeing a neurologist about treatment eligibility while the window is open, and (2) signing legal documents — powers of attorney — while your spouse still has legal capacity to participate. Both windows close as the disease progresses.
Because your parent was diagnosed: Early-stage patients still have significant independence and decision-making capacity — don't over-help too soon. Your priorities: get them to a neurologist, get legal documents signed while they can still participate, and have an honest conversation with siblings about who will do what.
Do today
1
Take a breath — panic is normal, and you don't have to figure this out today
A diagnosis is a profound shock. Grief is a normal response. Give yourself permission to sit with it before jumping into action mode. You have more time than it feels like right now.
2
Save the Alzheimer's Association helpline in your phone right now
800-272-3900. Free, 24 hours a day, 7 days a week, in over 200 languages. Real specialists — not bots — who can answer any question, help find local resources, and talk you through a crisis at 2am. Save it now even if you don't call today.
3
Don't make any major decisions yet
Housing, finances, and care arrangements feel urgent but mostly aren't — not in week one. Early-stage patients often have years of largely independent life ahead. Let the initial shock settle before upending lives.
This week
4
Request a neurologist referral if you don't already have one
Primary care doctors often make the initial diagnosis but aren't specialists. A neurologist can confirm it, stage it accurately, and evaluate eligibility for treatments a GP can't provide. Ask for an urgent referral — don't wait months in the standard queue.
Find a specialist →
5
Ask the neurologist specifically about disease-slowing treatment eligibility
Two FDA-approved drugs — lecanemab (Leqembi) and donanemab (Kisunla) — are the first treatments ever proven to slow Alzheimer's progression. They only work in MCI or early-stage patients. The window closes as the disease advances. Ask explicitly: "Is my loved one a candidate for anti-amyloid therapy?"
6
Attend one support group — even virtually
People who've been caregiving for years carry practical wisdom no website can replicate. The isolation of an Alzheimer's diagnosis is severe. Being with people who understand without requiring explanation changes something fundamental. Free groups meet in every state and online, often weekly.
Find a group near you →
7
Start a care binder — physical or digital
One document holding: diagnosis paperwork, every doctor's contact, current health conditions, insurance information, and key dates. You'll reference this constantly over the coming years. Start it now even if it's just a folder with a few pages.
This month
8
Get legal documents in place — this window closes
Healthcare Power of Attorney, Financial Power of Attorney, and Advance Directive must all be signed while the person still has legal capacity. Once that capacity is gone, the only option is slow, expensive court-ordered guardianship. An elder law attorney can handle all three in one appointment, typically $600–$1,200.
9
Have an honest family conversation — including the person diagnosed
In early stage, the person with Alzheimer's should be part of all decisions about their own care. Their wishes on living arrangements, finances, and end-of-life care matter and may not be expressible later. Have this conversation now while their voice is fully present.
10
Do a home safety walk-through
Remove loose rugs and extension cords from walkways. Install grab bars in the bathroom. Post emergency numbers visibly. Check whether door locks need repositioning to reduce wandering risk. Two hours of prevention can prevent serious injury that derails everything else.
11
Understand what Medicare covers — and critically, what it doesn't
Medicare covers medical care: doctor visits, hospital stays, diagnostics, and the new anti-amyloid infusion treatments. It does NOT cover most home care, adult day programs, or long-term nursing home custodial care. Medicaid covers long-term care — but only after most personal assets are spent. Know this distinction now.
Ongoing
12
Protect your own health with the same urgency as theirs
40% of Alzheimer's caregivers develop clinical depression. Caregiver burnout is one of the primary reasons people are placed in memory care facilities prematurely. Your health is not optional — it is structurally part of the care plan. Regular breaks, your own doctor appointments, and sustained social connection are not luxuries.
13
Stay current on treatments — the landscape is changing fast
Two disease-modifying drugs were approved in 2023–2024. More are in late-stage trials. Check with the neurologist every 6 months and follow research updates. This is not a "diagnose and forget" disease anymore.
Follow research progress →