Power of Attorney and Dementia: The Legal Documents to Put in Place Early

After a dementia diagnosis, one of the most useful things a family can do is put the right legal documents in place while the person can still take part. These papers let someone they trust pay bills, talk to doctors and make care decisions later on, and they make sure the person's own wishes are known.

This guide explains the main documents used in the United States. The rules and forms differ from state to state, so treat it as an overview and check your state's requirements, ideally with an elder law attorney.

In short: Most families need a durable financial power of attorney, a health care power of attorney (naming a health care proxy), and a living will. Later, a doctor may complete a POLST form. All of these depend on the person having enough capacity to sign, so start soon after diagnosis. If you wait too long, the family may have to go to court for guardianship.

Why timing matters

A person with dementia keeps the right to make their own decisions as long as they have legal capacity. The Alzheimer's Association describes legal capacity as the ability to understand and appreciate the consequences of one's actions. A diagnosis doesn't by itself mean someone lacks capacity, and the level needed differs between documents. An attorney can advise on what's required for each.

Because dementia is progressive, that window narrows over time. As the Alzheimer's Association puts it, the sooner legal plans are in place, the better prepared the person and their family will be. People in the early stage of dementia are often well able to do this. If you're unsure how quickly things may change, our guide to the 7 stages of dementia gives an outline.

Durable financial power of attorney

A financial power of attorney lets the person (the "principal") name an "agent", often a spouse, partner, adult child or trusted friend, to handle money and property for them. It should be durable, which means it stays valid after the principal loses capacity. A power of attorney that isn't durable stops working at exactly the point it's most needed.

Depending on what the document allows, an agent may be able to:

• pay bills and manage bank accounts
• deal with Social Security, pensions and insurance
• file taxes
• manage or sell property
• apply for benefits such as Medicaid

Practical points:

• Name a successor agent in case the first choice can't act.
• Ask when it takes effect. Some documents work as soon as they are signed; others only once the person is found to lack capacity. Ask the attorney which approach suits you and how incapacity would be confirmed.
• Check the powers. Gifts, trusts and Medicaid planning may need to be stated specifically.
• An agent must act in the person's best interests and in line with their wishes.

Health care power of attorney (health care proxy)

A durable power of attorney for health care names a health care proxy (also called an agent, representative or surrogate) to make medical decisions when the person can't. That can include choosing doctors, treatments and care settings and, in later dementia, decisions about feeding tubes or do-not-resuscitate (DNR) orders.

Choosing the right proxy matters more than the paperwork. Pick someone who will talk openly about the person's wishes, follow them, and stand firm if family members or professionals disagree. You can also:

• name an alternate proxy
• limit the proxy's authority, for example to certain decisions
• change the proxy at any time

According to the National Institute on Aging (NIA), most states require a proxy to be at least 18 (19 in Alabama and Nebraska). The American Bar Association generally advises against choosing the person's own health care provider or the owner or operator of their care facility. The form is state-specific and may need to be witnessed or notarized.

Living will and other advance directives

A living will tells doctors how the person wants to be treated if they can't decide for themselves, for example whether they would want CPR, a ventilator or tube feeding, and under what conditions. A living will and a health care power of attorney are both "advance directives". A proxy can be named alongside a living will or instead of one, but having both gives the proxy clear guidance.

Some useful facts from the NIA:

• You don't need a lawyer to make advance directives, though one can help.
• Many states have their own forms, often free from the state attorney general's office or your local Area Agency on Aging.
• Advance directives are legally recognized but not legally binding, so health care providers may not always be able to follow them exactly.
• Give copies to the proxy, doctors and attorney. Some states run registries that store advance directives.
• Review them at least once a year and after any major life event.

Medicare covers advance care planning as part of the annual wellness visit, so the doctor's office is a good place to begin the conversation.

POLST

A POLST (Physician Orders for Life-Sustaining Treatment; some states use other names, such as MOLST) is different from an advance directive. It's a medical order, completed and signed by the person's doctor and placed in their medical record, that tells emergency crews and other providers which life-sustaining treatments to give or withhold. It's typically made when someone has a serious illness or is near the end of life, which often means later-stage dementia.

A POLST works alongside advance directives rather than replacing them. Forms vary by state, it isn't available in every state, and the person can change or cancel it. Our guide to end-stage dementia covers the care decisions families often face at that point.

Other documents to consider

• A will. It names an executor and says who inherits. It has no effect during the person's lifetime and can't express health care wishes. It should be signed while the person can still make decisions.
• A living trust. A trustee holds and manages property placed in the trust. Depending on state law, it may help the estate avoid probate.
• Permission to share information. A medical release of information lets doctors share details with a caregiver. The person can also give a caregiver permission to talk with their doctors, which is separate from naming a health care proxy.

If it's too late: guardianship and conservatorship

If someone can no longer make decisions and has no power of attorney, a court may need to appoint a guardian (in some states called a conservator). The guardian makes decisions about the person's care and property and is supervised by the court. The court decides who serves. It might be a relative, but it can also be someone the person doesn't know, such as an attorney or a bank.

Guardianship takes time, needs an attorney, can involve testifying in court, and can be emotionally draining, particularly when families disagree. That's a strong reason to sign powers of attorney early.

State rules and when to see an elder law attorney

Requirements for witnesses, notarization, forms and the powers an agent can have differ by state. If the person spends time in more than one state, the NIA suggests completing advance directive forms for each state and keeping copies in each place.

An elder law attorney is worth considering when:

• there are significant assets, a family business or property in more than one state
• long-term care may be needed and Medicaid or VA benefits could be involved
• family members disagree, or there's a risk of financial abuse
• there's any doubt about the person's capacity to sign

The Alzheimer's Association suggests gathering financial documents before the first meeting and discussing health care decisions, managing property, and how long-term care will be paid for, including Medicare, Medicaid, veterans' benefits and long-term care insurance. You can find attorneys through the National Academy of Elder Law Attorneys' directory; LawHelp.org lists free or low-cost legal aid. Your Area Agency on Aging can also point you to local help (find yours through the Eldercare Locator at 1-800-677-1116). The Alzheimer's Association 24/7 Helpline is 800-272-3900.

A simple checklist

• Talk about wishes early, ideally soon after diagnosis
• Sign a durable financial power of attorney, with a successor agent
• Sign a health care power of attorney and a living will on your state's forms
• Make or update a will and consider a trust
• Sign a medical release of information
• Give copies to agents, doctors and the attorney, and store the originals safely
• Ask the doctor about a POLST as the illness advances
• Review documents yearly and after major changes

These conversations can be hard. Our articles on helping a parent cope with dementia and the emotional toll of watching a loved one's dementia progress may help.

This page is general information for people in the US, not legal advice. Laws vary by state and change over time.