What to Do After a Dementia Diagnosis: The First Six Months | CarePrints
Nobody hands you a sequence.
You leave the appointment with a diagnosis, a follow-up in three months, and possibly a pamphlet. Then you go home and open a browser and the internet gives you four hundred things to do, all at once, in no particular order, most of them written by someone selling something.
So here is an order of operations. Not everything, and not a checklist to complete — just what tends to matter in the first six months, roughly in the sequence that serves families best.
Weeks 1–4: Do almost nothing structural
The most common early mistake is moving too fast.
Within days of a diagnosis, families start selling cars, canceling plans, researching memory care, and having enormous emotional conversations at the kitchen table. Almost none of that needs to happen in month one, and doing it early tends to produce decisions made under maximum fear with minimum information.
What is actually worth doing in the first month:
Get a second read if anything about the diagnosis felt rushed. Dementia is diagnosed with varying degrees of rigor. If the evaluation was fifteen minutes long, ask for a referral to a neurologist or a memory clinic. Some conditions that look like dementia are treatable — thyroid problems, B12 deficiency, medication interactions, depression. Ruling those out properly is worth the appointment.
Write down what you observe. A cheap notebook. Dates, and what happened. Not to build a case — to give the next doctor something better than "she's been worse lately."
Tell three people. Not everyone. Three. Isolation compounds fast and it starts early, usually with a well-meaning decision to keep it private until you know more.
Months 1–3: The paperwork window
This is the part that is genuinely time-sensitive, and it is the part most families delay because it feels ghoulish.
Legal documents require the person to have capacity to sign them. Capacity is not all-or-nothing and it is not gone at diagnosis — in the early stage most people have it comfortably. But it is a closing window, and once it closes the alternative is guardianship proceedings, which are expensive, slow, and adversarial in a way that families find genuinely traumatic.
What generally belongs in this window: durable power of attorney for finances, healthcare proxy or medical power of attorney, an advance directive, and a review of any existing will or trust. An elder law attorney will do all of it in one or two appointments.
The reframe that helps: this is not paperwork about dying. It is paperwork about who gets to speak when he can't. Doing it now is what allows his preferences to govern later instead of a court's.
Do it while it is still his decision. That is the whole point.
The other thing to do in this window, and almost nobody does it early enough: ask the questions.
There are things only he knows. Where the burial plot is, if there is one. What the story behind the scar actually was. Which of the cousins he actually liked. What he wants done with the tools. Why he left the first job.
You are going to want these answers for the rest of your life, and there is a period — right now, most likely — where he can still give them to you easily and enjoys being asked.
Later, the same questions become a source of distress, because they start functioning as tests he can feel himself failing. That change happens gradually and you will not get a warning.
Ask now. Record it on your phone if he'll let you. You will not regret having his voice.
Months 3–6: Build the actual system
Once the urgent things are handled, the work shifts to something more boring and more durable.
Figure out the money. What is coming in, what care costs locally, whether there is long-term care insurance, whether he is eligible for VA benefits, and what the Medicaid picture looks like in your state. This is unpleasant and worth doing before you are in crisis.
Recruit before you need it. The single best predictor of whether a caregiver burns out is whether other people were brought in early. Not when it got bad — early, while the tasks are still easy enough that helping doesn't feel frightening. A sibling who has been driving him to appointments for eight months will stay. A sibling recruited during a crisis usually won't.
Find your version of a routine. Consistent wake time, consistent meals, consistent afternoon activity. Routine does more for behavioral symptoms than most families expect, and it is easier to establish now than to impose later.
Connect with the Alzheimer's Association. Their helpline runs twenty-four hours at 800-272-3900, and they run local support groups, including some for early-stage patients themselves. Free.
What can wait
Memory care tours. Selling the house. The full family meeting about the inheritance. Reading every book on the subject.
These will come. They do not need to come in month two, and treating them as urgent is a good way to spend the early stage in a state of emergency instead of using it for what it is actually good for — which is time, with him, while he is still largely himself.
That is the real answer to what to do first.
Handle the paperwork. Then go sit with him.
Some families use The Me Book for exactly this window — a personalized keepsake built from his own photographs, names, and stories, made while he can still tell you what goes in it. It's designed as something to enjoy together, not a memory exercise. [See how it works →]
This article is for general information and is not medical or legal advice. Diagnostic questions belong with a physician; documents like powers of attorney should be prepared with a licensed attorney in your state.