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.)

Do first: at diagnosis / early stage

These need capacity, so they're the urgent ones. An elder-law attorney (a real specialty, not the same as 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.
• Make the two calls that screen for everything (SHIP 877-839-2675 and the Eldercare Locator 1-800-677-1116): they find the Medicare premium help, drug-cost help, free legal help and bill help most families never claim. The names to ask for, and what each is worth, are in money you may already be owed.
• 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.

The agencies that won't take your power of attorney

Here is the trap that costs families months, one rejected trip at a time. You did the right thing, you got the durable power of attorney, and then you learn at the counter that several of the biggest agencies don't accept it. Not because yours is wrong: because each one runs its own permission system. Learning this in one sitting instead of one refusal at a time is worth an afternoon of anyone's life.

• Social Security: a POA is not enough, and never will be. The Treasury doesn't recognize powers of attorney for federal payments, so to manage someone's Social Security or SSI you must be appointed their representative payee (form SSA-11), which is a separate application with its own accounting duties. SSA says this plainly: having POA, being an authorized representative, or sharing a joint bank account is not the same as being a payee.
  Do this early, while they can still choose: SSA's Advance Designation lets any capable adult name up to three people, in order, they'd want as payee if it ever becomes necessary. It is not a POA and not an appointment; it just means SSA considers your person's own choice first. Free, optional, changeable any time, and it takes one call to 1-800-772-1213 or a few clicks in a my Social Security account.
• Medicare wants form CMS-1696. To handle claims, appeals or grievances for someone, file an Appointment of Representative. One caution that voids forms: the representative must sign within 30 days of the beneficiary signing. It covers the claim or appeal it was filed for, and can be used for other appeals during the year it stays valid.
• The IRS wants form 2848, and incapacity breaks it. A pre-existing Form 2848 is generally voided once the taxpayer becomes incapacitated, and someone who is already incapacitated can't sign a new one. The route then is the broad durable POA submitted together with Part II of Form 2848. This is the single best argument for doing the paperwork early, while signing is still possible.
• The VA appoints its own fiduciary. A state-law POA, however valid, doesn't let you manage VA benefits; the VA runs its own fiduciary appointment, usually choosing the person the beneficiary names, after a suitability investigation.
• Banks and brokerages each have a house form. Most will accept a valid durable POA but many strongly prefer their own, and some make it slow. Walk the original in early and ask them to put it on file before it's needed, which is the same advice as above and the reason it's repeated.

Verified July 2026 at ssa.gov, cms.gov and va.gov. This is the pattern rather than the fine print: each agency's own current form governs, and the free legal help below can do all of it with you.

Money you may already be owed

There is a set of programs that pay ordinary families' Medicare premiums, drug costs, power bills and lawyers' fees. Most people who qualify never claim them, because nobody ever said the names out loud. None of this is charity or welfare in the way people fear; it is the ordinary workings of Medicare and the Older Americans Act. Two phone calls do most of the work, and an afternoon spent here pays every month for the rest of the illness.

Call anyway even if you are sure you earn too much. Medicare's own guidance says it plainly: "Even if you don't think you qualify, you should still apply." Several states ignore some income and some savings entirely when they decide, so the federal limits below are a floor, not a verdict.

Ask for these by name

• Medicare Savings Programs pay the Part B premium, which is $202.90 a month in 2026: about $2,435 a year back in their pocket. There are four; you don't need to know which one fits. QMB pays the premium and deductibles, coinsurance and copays, and providers are then not allowed to bill for covered care. SLMB and QI pay the premium. The 2026 federal limits for QMB are $1,350 monthly income and $9,950 in resources for one person ($1,824 and $14,910 for a couple); SLMB and QI allow more income at the same resource limits. Your state runs these, so apply through the state (SHIP does it with you). QI must be re-applied for every year, first come first served, so put it in the calendar.
• Extra Help (the Part D low-income subsidy) takes the drug plan premium and deductible to $0 and caps 2026 copays at $5.10 for a generic and $12.65 for a brand name; once total drug costs pass $2,100 you pay nothing for covered drugs. Anyone on QMB, SLMB or QI gets it automatically. Everyone else applies to Social Security, online or at 1-800-772-1213 (TTY 1-800-325-0778), and can apply any time. Not available in Puerto Rico, the U.S. Virgin Islands, Guam, the Northern Mariana Islands, or American Samoa; those areas run their own programs through the Medicaid office.
• SNAP, counted the way it's counted for older people. Families rule themselves out here more than anywhere. In a household with someone 60 or older or disabled, out-of-pocket medical costs above $35 a month are deducted before eligibility is figured: doctor bills, prescriptions, dental, approved over-the-counter items. Dementia care generates exactly those costs, and the deduction is what turns a "we don't qualify" into a monthly grocery benefit. (Federal SNAP rules are being rewritten under 2025 legislation; your state SNAP office has the current version.)
• Free legal help for anyone 60 or older. The Older Americans Act funds legal assistance in every state through Area Agencies on Aging, covering the exact things this page asks you to do: advance directives, naming decision-makers, access to benefits, alternatives to guardianship, housing, and long-term-care financing. Priority goes to those with the greatest economic need. Ask for it before you hire anyone; an elder-law attorney is worth real money for complex Medicaid planning, but plenty of families are paying for what their county gives away.
• Energy bills: LIHEAP. Help paying heating and cooling, which matters more than it sounds when someone with dementia can no longer judge temperature safely. Find your state's program at energyhelp.us or call the national referral line, 1-866-674-6327.
• Phone and internet: Lifeline. Up to $9.25 a month off phone or internet service (up to $34.25 on tribal lands). Being on SNAP or Medicaid qualifies you automatically. lifelinesupport.org or 800-234-9473.
• Rides to appointments, if they have Medicaid. Federal rules require every state Medicaid program to assure transportation to and from covered care. It is called non-emergency medical transportation, it usually must be booked days ahead, and the words that get you there are "I need to arrange NEMT for a medical appointment."
• Property tax relief. Most counties offer an exemption, freeze, or deferral for elderly or disabled homeowners, and it is never automatic. One call to the county assessor, once, and the bill can drop for good.

Figures verified July 2026 on medicare.gov, ssa.gov, fna.usda.gov, acf.gov, acl.gov and lifelinesupport.org. Dollar limits change every January; the programs themselves don't.

Protect them from exploitation

Dementia is a top target for fraud. Failing 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. Watching all year beats a once-a-year check-in. And the cruelest fraud isn't always about money: 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.
• Selling their valuables is its own scam magnet. When you have to turn a coin or silver collection into care money, the "we buy gold" ads and mail-in kits are built to lowball a stressed family. The safe way (know the day's price, get two written quotes, walk away from pressure) is its own page: selling their silver & coins.
• 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.

If you still have a job: it has protections

Working while caregiving is its own tightrope, and the law gives you more footing than most people know. The federal FMLA gives eligible employees up to 12 workweeks of unpaid, job-protected leave per year to care for a spouse, child, or parent with a serious health condition. Your group health insurance keeps running on the same terms. Dementia care qualifies. Two things worth their weight:

• It can be taken intermittently when medically necessary: Thursday-afternoon appointments, a reduced week during a bad stretch. For caregivers, the intermittent form is usually the real gift, and many managers have never heard of it.
• Unpaid is a hard word, and honesty matters: FMLA protects the job, not the paycheck. Some states run paid family-leave programs on top of it; the Labor Department's own advice is to check your state for stronger protections. Ask HR about both in the same meeting.

No HR department, hourly, gig, or self-employed? FMLA may not reach you at all; it has employer-size and tenure tests, and that gap is a flaw in the system, not in you. The respite and day-program doors were built for exactly this. For everyone else: the test is specific (employer size, how long you've worked there), and your doctor fills in a certification form: the details live at dol.gov/agencies/whd/fmla. Talk to HR before the crisis week, not during it: a planned talk protects you; a no-show doesn't. And if leave you can't afford is the only offer, unpaid time isn't the only tool: respite and day programs exist precisely so the job and the caregiving can both survive.