The Decisions That Are Still Yours

You have a diagnosis and a lot of people quietly making plans around you. Most of what happens next is still yours to decide, and this is how to keep it that way.

Am I still allowed to make my own decisions?

Yes. A dementia diagnosis is a medical finding, not a legal one. By itself it removes your authority over nothing.

This gets assumed away so fast that it is worth saying plainly. People start speaking about you in the third person within about a week of the appointment. That is a habit they have picked up, not a legal fact about you.

Capacity is assessed decision by decision, and at the moment of the decision. The standard test asks whether you can understand the relevant information, appreciate what it means for your own situation, reason about the options, and say what you have chosen. A diagnosis of dementia does not answer that question. It only means somebody may eventually ask it.

The practical version: if a decision feels manageable today, it probably is, and today is the day to make it.

What should I sign first, and what can wait?

The documents that name who speaks for you. They ask the least of your capacity and they prevent the most trouble.

In rough order of what to do first:

• Healthcare proxy — the person who makes medical decisions if you cannot. One page, one signature, enormous consequences.
• Durable power of attorney for finances — written so that it does not need a court to switch it on.
• An advance directive, saying what treatment you would want and refuse.
• Advance Designation with Social Security — see below, because this one surprises everybody.
• A will, and a check of your beneficiary forms. Beneficiary designations on retirement accounts and life insurance override what your will says. People are often astonished by this.

One thing worth adding that most forms leave out. A standard advance directive was written with a sudden crisis in mind — an accident, a coma, a terminal illness with a short horizon. It does not describe a slow change over years, which is what you are actually planning for. A dementia-specific directive covers that gap: it lets you say what you would want at each stage rather than only at the end. Several states and nonprofit organizations publish one free, and it can be attached to the standard form as a supplement.

And you can appoint someone today and change your mind about it later. These documents are revocable while you have capacity. Naming somebody is not surrender.

Is there a way to get help without handing over control?

Yes, and almost nobody mentions it. It is called supported decision-making, and it is the opposite of guardianship.

Under a supported decision-making agreement, you keep legal authority over your own life. You choose people to help you understand information, think through options, and communicate what you have decided. The decision stays yours. The signature stays yours.

Thirteen states now recognize these agreements in law: Alaska, Delaware, Indiana, Kansas, Louisiana, Nevada, North Dakota, Rhode Island, Texas, Virginia, Washington, West Virginia and Wisconsin. Kansas and Idaho both moved in 2026, and a growing number of states have adopted a uniform act requiring courts to consider less restrictive options before appointing a guardian at all.

If your state is not on the list, the agreement may still be useful as a written statement of how you want to be treated, even without statutory force behind it. Ask locally what it is worth where you live.

Do I have to stop driving?

Not on the day of the diagnosis, and not because somebody has decided it for you. But your own sense of whether you drive safely is the least reliable evidence available, and that is measurable.

The American Academy of Neurology's guidance is that people with mild dementia are at higher risk as a group and should strongly consider stopping. That is a recommendation to weigh. It is not automatic, and a diagnosis alone should not end your license.

Then there is the number that ought to give anyone pause. Roughly 76% of people with mild dementia pass an on-road driving test. But among people with mild Alzheimer's dementia who rate themselves as safe drivers, only 41% pass.

Read those two figures together. Most people with mild dementia can still drive. Self-assessment is the part that fails. That is not an insult — it is a known feature of the illness, and it applies to careful people with clean records.

What to do with that:

• Get a formal on-road evaluation, usually through an occupational therapist certified in driver rehabilitation. It replaces an argument at the kitchen table with an assessment.
• Ask for reassessment every six months if you keep driving. The AAN recommends it for very mild dementia.
• Find out what your state requires. California, Delaware, Oregon and Pennsylvania require a physician to report a dementia diagnosis to the DMV. Fourteen more ask you to report it yourself.
• Decide the stopping point now, while it is hypothetical, and write it down. A line you drew yourself is easier to live with than one drawn for you.

Why won't Social Security take my power of attorney?

Because it does not accept one, from anybody, ever. This catches nearly every family, usually at the worst moment.

The Treasury does not recognize power of attorney for federal payments. Your carefully drafted POA gives your person authority over your bank, your house and your investments, and no authority at all over your Social Security.

What works instead is Advance Designation. You name up to three people you would want to manage your benefits if Social Security ever decides you need a representative payee. It is free, it takes a few minutes online or by phone, and — this is the part with a deadline — it requires your capacity now.

What about money and work?

Map it while you can still explain it, and find out today whether you qualify for something that pays out sooner than you think.

Write down what only you know: the accounts, the income, the automatic payments, where the passwords are, which insurance policies exist. Do it in one sitting if you can. This is not about handing over the money. It is about the fact that you are currently the only person who could reconstruct it.

Two things worth checking specifically:

• Long-term care insurance, if you have it. Read what actually triggers a claim. Most policies require a set number of failed daily activities and impose a waiting period, and knowing this in advance changes the timing of decisions later.
• Compassionate Allowances. If you are under 65, early-onset Alzheimer's is on Social Security's list of conditions that get expedited disability review — approval can come in roughly a month rather than the usual grind. The caveat matters: the five-month waiting period before payments begin still applies, and Medicare eligibility still takes 24 months from your disability onset date. Fast approval is not fast money. Apply earlier than feels necessary.

If you are still working, talk to someone about accommodations before job performance becomes the reason the conversation happens. That order is much easier than the reverse.

Who do I have to tell?

Almost nobody, on almost no schedule. This is your information and the timing is yours.

You will be advised to tell people. Some of that is good advice and some of it is other people's discomfort looking for a solution.

The genuine exceptions are small: the doctors who treat you, an employer if the work involves safety, and eventually the people around you often enough to notice if something goes wrong. A neighbor who knows is a safety net. A neighbor who does not know is a bystander.

Most people find it easier to tell a few people properly than to make an announcement. And it is worth being ready for some friends to disappear. It happens earlier and faster than anyone warns, it is not a reflection of you, and it is one of the least-predicted losses of this stage.

What do I actually do this week?

Three things. None of them takes a whole day, and the first one takes about ten minutes.

1. Advance Designation with Social Security. Online or by phone. Ten minutes, and it closes the gap your POA cannot.

2. Name your healthcare proxy and tell that person you have done it. One form, and many states publish it free.

3. Write down one page of what only you know — accounts, policies, passwords, who to call.

Then, when there is more time: the durable financial POA, the advance directive with a dementia supplement, the will and beneficiary check, and the driving evaluation if that question is live.

You do not have to do this in the right order, and you do not have to do it all. Anything signed is better than everything planned.