Legal & financial planning

Names vary by state. Ask an attorney in your own state what the local equivalent is called.

Durable power of attorney for finances

Names someone to handle money, property, bills, taxes and benefits. "Durable" is the important word: it means the authority continues after the person loses capacity. A non-durable one is useless for dementia.

Health care power of attorney (health care proxy)

Names someone to make medical decisions when the person cannot. Often a different person from the financial one, and that is fine — pick for the role, not for seniority in the family.

Advance directive / living will

Sets out what treatment they would and would not want. In dementia the questions that actually arrive are: feeding tubes, going into hospital for infections, antibiotics, and resuscitation. Vague wishes are hard to act on — specific ones are a gift to whoever has to decide.

A will

If there is not one, now. Also check who is named as beneficiary on pensions, life insurance and retirement accounts — those beneficiary designations often override the will entirely, and are frequently decades out of date.

HIPAA release

Lets doctors talk to named people. Without it, you can be shut out of a conversation about someone you are caring for full time.

Sometimes: a trust

Useful for some families, unnecessary for many, and sometimes sold to people who do not need one. Ask an attorney whether it changes anything in your actual situation before paying for it.

You want an elder law attorney specifically. They know Medicaid rules in your state, which a general practice lawyer often does not.

• Your Area Agency on Aging can refer you; the help page explains how to reach yours.
• Ask about free legal help for older adults: many areas have it, funded under the Older Americans Act.
• The Alzheimer's Association helpline can point you to local resources — 800.272.3900.
• Ask on the phone what a basic package of documents costs before booking. Flat fees are common.

Do-it-yourself forms exist and are better than nothing. But the rules that govern capacity, witnessing and notarisation are state-specific, and a document rejected at the moment you need it is worse than no document at all. If money is tight, ask about legal aid before defaulting to a template.

Build one folder. Paper or digital, but one.

• Bank and investment accounts, with account numbers.
• Pensions, retirement accounts, annuities.
• Social Security, and veterans' benefits if they served.
• Every insurance policy: health, life, long-term care, home, car.
• Deeds, mortgage, rental agreement.
• Recent tax returns.
• All debts, including anything owed to family.
• Passwords, and the list of monthly subscriptions and direct debits.
• The safe deposit box, and who has access to it.

Do this while the person can still tell you where things are. Families routinely lose track of accounts entirely because the only person who knew about them could no longer say.

Practical moves worth making early: switch bills to automatic payment, set up account alerts, and check whether long-term care insurance exists and what triggers it — many policies pay out based on needing help with a set number of daily activities, and families miss the trigger by years.

This is the part that shocks people, so here it is plainly.

Medicare

Covers doctors, hospitals, some medicines, and a limited period of skilled nursing after a qualifying hospital stay. It also covers hospice.

Medicare does not pay for long-term custodial care — the help with bathing, dressing, eating and supervision that dementia actually requires, whether at home or in a facility. That is the single most expensive thing about this disease and it is not covered.

Medicaid

Does pay for long-term care, and is the largest payer of nursing home care in the country. But it is means-tested: the person must spend down assets to a low threshold first, and the rules differ in every state. There is a look-back period on gifts and transfers, which is why "giving the house to the children" is usually a bad idea done without advice — it can cause a penalty period with no money to cover it.

There are protections for a spouse still living at home. An elder law attorney is genuinely worth the fee here.

Long-term care insurance

If a policy exists, read it now: what triggers payment, how long the waiting period is, what the daily limit is, whether it rises with inflation. Buying a new policy after a dementia diagnosis is generally not possible.

Veterans' benefits

If they served, check. VA Aid and Attendance and other benefits can be substantial and are widely unclaimed.

Other things to check

• If they are under 65, Social Security Disability — younger-onset Alzheimer's qualifies.
• Your state's Medicaid waiver programmes, which can fund care at home rather than in a facility.
• Whether some caregiving costs count as a medical expense on a tax return — ask a tax preparer.
• Whether your employer offers unpaid protected leave, and whether your state has a paid family leave programme.
• Whether the clinic takes part in a dementia care programme with a respite benefit.

People with dementia are targeted, and poor judgement about money is an early symptom rather than a late one. Losses are often large and rarely recoverable.

• Tell the bank about the diagnosis and ask what protections they offer — many will add alerts or a trusted contact.
• Set low limits on cards, and alerts on every transaction over a small amount.
• Move the bulk of savings somewhere that needs two signatures.
• Register on the national Do Not Call list and get on a mail preference service.
• Give them a card with a small fixed balance so they keep the dignity of paying for things.
• Watch for new "friends", unfamiliar charities, sweepstakes letters, and anyone urgent on the phone.
• Be alert to family members too. Most financial abuse of older adults is committed by relatives.

• Alzheimer's Association, 800.272.3900 — free care consultations, 24 hours a day, 365 days a year.
• Your Area Agency on Aging — local benefits counselling and legal help for older adults. The help page explains how to reach yours.
• Your state's health insurance assistance programme — free, unbiased help with Medicare and Medicaid questions. Your Area Agency on Aging has the local number.