The paperwork, in the order to do it
The checklist families skip and later pay for: stage by stage, plus scam protection. Do it while their voice can still be in the documents. (Chapter 8 has the why.)
A dementia diagnosis does not by itself remove the legal right to sign. Capacity is a moment-in-time, document-by-document test: at the instant of signing, can they understand what the document is, what power it hands over, and to whom? Many people in early and even middle dementia can still sign, but capacity fades and doesn't come back. Once it's gone, the simple afternoon at a lawyer's office becomes guardianship court: often $10,000+ to establish, months of delay, public record, and a judge (not the family) choosing who decides. The diagnosis itself is the starting gun. Waiting for certainty is the single most common way families miss the window entirely.
Do first: at diagnosis / early stage
These need capacity, so they're the urgent ones. An elder-law attorney (a real specialty, distinct from a general estate lawyer) can do most in one or two visits and will document capacity at signing, which protects the documents from a later challenge.
- Durable power of attorney (financial). Names who handles money and property. It must be durable (effective through incapacity), not "springing," which banks resist and which creates a dangerous gap. Bring the original to their bank early and ask them to put it on file before it's urgently needed.
- Healthcare proxy / medical power of attorney. Names who speaks to doctors. A different document from the financial POA. You want both.
- Advance directive / living will. Their wishes for the medical lines ahead (hospitalization, resuscitation, feeding), written while the words are theirs. Ask the concrete question kindly and write the answer verbatim: quotes carry authority that summaries don't.
- HIPAA releases at each doctor's office, so the family who'll be calling can actually get records, before the ER visit when you need them fast.
- Will / trust review, and beneficiary designations checked. Retirement accounts and life insurance override the will, and stale beneficiaries (an ex-spouse, someone deceased) are a common, avoidable mess.
- Banking set up right: for a non-spouse, a POA on the account usually beats a joint account (a joint owner fully owns the money and exposes it to their creditors/divorce). Add a trusted contact to bank and brokerage accounts: five minutes, free; they can be called if exploitation is suspected but can't see balances or move money.
- Passwords & digital access: a password manager with an emergency/legacy contact, plus Apple Legacy Contact and Google Inactive Account Manager. Locked accounts after incapacity are slow and painful to reach.
- Check any long-term-care insurance policy now, not at claim time. Dementia usually triggers coverage on "severe cognitive impairment," but there's often a 30–90 day waiting period you pay out of pocket first.
- Screen for benefits early: VA Aid & Attendance for wartime veterans and spouses (filed free by a Veterans Service Officer), and learn your state's Medicaid rules. Because Medicaid has a 5-year look-back on asset transfers, anything you do today starts that clock. See the resources page.
- Can Medicaid pay YOU to caregive? Often yes. Most states let a Medicaid home-care participant hire and pay a family caregiver through a "consumer-directed" program. New York calls it CDPAP, Colorado CDASS, Wisconsin IRIS, Minnesota CFSS; roughly ten states even allow paying a spouse. Names and rules shift by state, so treat this as a pointer, not a promise: search "[your state] consumer-directed Medicaid" or "[your state] paid family caregiver program," and a free call to your local Area Agency on Aging benefits counselor can confirm what's actually available where they live.
- If you still work: check your leave rights before the crisis week. Federal FMLA protects your job for up to 12 weeks of family-care leave at qualifying employers, but it's unpaid. Thirteen states plus D.C. now run paid family leave (partial wages, dementia care qualifies). Search "[your state] paid family and medical leave" or just ask HR; asking costs nothing. One honest heads-up so you don't waste a hopeful hour: the federal "Credit for Caring" tax credit you may have seen in headlines is still a bill, not a law (as of mid-2026). There's nothing to claim yet. A few states have their own caregiver tax credits; that same search will tell you.
Do next: middle stage
- Engage an elder-law attorney for Medicaid planning if long-term care is on the horizon. This is not just "spend the money." Legitimate spend-down (prepaid funeral, home repairs, paying off debt, compliant annuities) is technical, and a wrong move triggers months of ineligibility with no cap on the penalty. Worth every dollar of the fee.
- Set up a Social Security representative payee. The SSA does not accept a regular financial POA. This is a separate application (form SSA-11). Do it before you need to manage their benefits.
- Build the one folder (below) if you haven't: the single highest-leverage hour on this page.
Do when the time comes: late stage
- POLST / MOLST. A doctor-signed medical order (not just a wish) that EMTs and ERs must follow: CPR, hospitalization, feeding tube, antibiotics. It closes the gap between what the family knows they wanted and what first responders will actually do without paper.
- Ask about hospice. Many families don't know hospice covers dementia, not just cancer. It's driven by functional decline (loss of walking, speech, recurrent infections), covered by Medicare, and can be started, stopped, and restarted. The common regret is calling too late.
Everything above lives in one physical folder (plus a digital copy someone else can reach): the documents, the medication list, diagnoses, doctors and numbers, insurance cards, and the passwords that unlock the practical world. Label it, keep it in a document safe or lock box (which also protects the cash and valuables that fuel exploitation), and tell two people where it is. In every future emergency, someone opens that folder instead of tearing the house apart.
Protect them from exploitation
Dementia is a preferred target for fraud. Declining judgment meets an intact willingness to answer the phone, and the theft is usually a slow bleed of small recurring transfers, not one dramatic heist. Continuous monitoring beats a once-a-year check-in. And the cruelest fraud isn't always financial: selling false hope (memory "cures" and four-figure "reversal" protocols) drains a family's savings and heart. Knowing what's proven from what's just being sold is its own kind of protection.
- Freeze their credit: free, at all three bureaus (Equifax, Experian, TransUnion). It blocks new-account fraud entirely, and a person holding POA can freeze and unfreeze on their behalf. The single highest-value free move here.
- Turn on the bank's own tools: the trusted-contact designation (above), account alerts on large or unusual transactions, and ask whether they'll flag the account. Brokerages can place a temporary hold on suspicious withdrawals.
- Guard against the classics: the "grandchild in jail" call, romance and lottery scams, and high-pressure "act now" sales. A therapeutic fib and a screened phone are kinder than an argument. Autopay the essential bills so a missed payment isn't the crisis that reveals the problem.
- Set a family code word, today. The "grandchild in jail" call now arrives in the grandchild's actual voice, cloned from a few seconds of a video posted online. No gadget defeats that; one low-tech agreement does. Pick a word only the family knows, and make the rule out loud: no money moves, ever, until the caller says the word. Two minutes, free, and it protects the whole family, not just the person with dementia.
- Then make the phone itself stop ringing for strangers. The screens setup page has the free settings that silence unknown callers and block scam calls at the carrier, so most of these calls never reach them at all.
- Monitoring services exist (EverSafe, Carefull, True Link's blocking debit card) if a hands-on family member can't watch the accounts. Compare them, verify current pricing, and treat them as tools, not endorsements.
- Watch the subscriptions. Stressed caregivers and older adults are the prime targets for hard-to-cancel "free trials" and countdown-timer pressure. Review recurring charges when you review the accounts.
- Stop preapproved credit-card mail: call OptOutPrescreen at 1-888-567-8688, or use optoutprescreen.com, the official opt-out service run by the credit bureaus themselves. Opting out online lasts 5 years; mailing back the signed form makes it permanent. Fewer "you're preapproved!" envelopes means fewer openings for exploitation.
- Thin the catalog flood: DMAchoice.org registers a name against legitimate mailers' lists. Honest caveat: it does not stop scam mail (criminals don't honor opt-out lists); it just quiets the legitimate noise, which makes the scams easier to spot.
- Free scam-call blocking you may already have: before buying any call-blocking device, check the carrier. AT&T ActiveArmor, Verizon Call Filter, and T-Mobile Scam Shield all have free tiers that auto-flag or block high-risk calls. One app install or one call to support, zero dollars.
(The credit freeze at all three bureaus, above, is still the single highest-value move. This is the rest of the mail-and-phone cleanup, done once and left alone.)
Three moves, maybe four hours total, and the highest-leverage four hours in this whole guide: book the elder-law consult, start the folder with what's in the desk drawer tonight, and freeze their credit. Everything else can follow from there.
“The plans of the diligent surely lead to profit, but all who are hasty come only to poverty.”
Proverbs 21:5