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Documenting Your Health Care Preferences: Living Wills and Advance Directives for Dementia

If you are living with early- or middle-stage dementia, now is the time to put your health care wishes in writing. Advance directives—like a living will and a health care power of attorney—let you say what treatments you do or do not want, and name someone to speak for you if you cannot speak for yourself. This guide walks you through the exact steps, the common pitfalls, and the tools that make this process less overwhelming. You are not alone, and there are concrete, doable actions you can take today.

Key points

  • Complete advance directives as soon as possible after a dementia diagnosis, while you still have decision-making capacity.
  • A living will states your treatment preferences; a durable power of attorney for health care names someone to make decisions for you.
  • Use your state’s official forms—generic internet forms may not be valid.
  • Talk openly with your chosen agent about your values and specific scenarios like infections, falls, and end-of-life care.
  • Keep copies of your documents with your doctor, your agent, and in an easy-to-find place at home.
  • Review and update your documents annually or after any major change in health or residence.

Why Advance Directives Matter Now, Not Later

When you have dementia, your ability to make complex medical decisions will gradually decline. Advance directives are legal documents that let you document your preferences for medical care while you still have the capacity to do so. A living will is a type of advance directive that spells out what life-prolonging treatments you want or do not want near the end of life—for example, whether you want a feeding tube, mechanical ventilation, or resuscitation. A durable power of attorney for health care appoints a person (your agent) to make decisions for you when you cannot. These documents are not just for older adults; anyone over 18 can have them, and they become critically important after a dementia diagnosis.

What Happens If You Don't Have Them

Without advance directives, your family may have to guess what you would have wanted, and they may face legal and emotional stress. In many states, a spouse or adult child can make decisions to stop treatment, but they may not know your specific wishes. Studies show that fewer than 20 percent of people who lose decision-making capacity have advance directives in place. This can lead to unwanted treatments, family conflict, and guilt. By documenting your wishes now, you spare your loved ones that burden and ensure your care aligns with your values.

The Unique Challenge of Dementia and Living Wills

Living wills are often written years before a dementia diagnosis, and they may not address the gradual, long-term decline that dementia brings. A living will typically focuses on end-of-life scenarios like coma or terminal illness, but dementia involves many intermediate medical decisions—like whether to treat an infection with antibiotics, whether to go to the hospital for a fall, or whether to start tube feeding. That is why it is essential to update your living will after a dementia diagnosis and to pair it with a durable power of attorney for health care. Your agent can then apply your general wishes to specific situations as they arise.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Start the conversation with your doctor and family as soon as possible after diagnosis. Say: 'I want to make sure my health care wishes are known. Can you help me understand what decisions I might need to make in the future?' This opens the door to discussing specific scenarios like infections, falls, and end-of-life care.

  2. Choose your health care agent (also called proxy or surrogate). This is the person who will make medical decisions for you when you cannot. Pick someone you trust to follow your wishes, even if they disagree personally. Talk to them in depth about your values—not just what treatments you want, but what quality of life means to you. Use a tool like The Conversation Project starter guide to guide this talk.

  3. Complete a living will using your state’s official form. You can find links to state-specific forms on the websites of the American Bar Association, AARP, or the National Hospice and Palliative Care Organization. Fill it out while you are still able to make decisions. In most states, you need to sign it in front of a witness or notary. Do not just download a generic form from the internet—state laws vary, and an invalid form may not be honored.

  4. Also complete a durable power of attorney for health care. This document names your agent and gives them the legal authority to make decisions. In some states, this is combined with the living will into one 'advance health care directive.' Make sure the two documents are consistent. For example, if your living will says no tube feeding, but your power of attorney gives your agent broad authority, they can still honor your living will.

  5. Consider a POLST (Physician Orders for Life-Sustaining Treatment) form if you are in a later stage or have a serious illness. A POLST is a medical order signed by your doctor that translates your wishes into actionable orders for emergency responders and hospital staff. It covers resuscitation, mechanical ventilation, tube feeding, antibiotics, and hospital transfer. Unlike a living will, a POLST is immediately actionable and stays with you. Discuss this with your clinician.

  6. Make multiple copies of your completed documents. Give one to your health care agent, one to your primary care doctor, one to your local hospital (they can scan it into your medical record), and keep one in an easy-to-find place at home. Also put a copy in a 'go-bag' or binder that you take to appointments and hospital visits. Use a binder with labeled pockets for quick access.

  7. Review and update your documents every year or after any major change in your health or family situation. Dementia progresses, and your wishes may evolve. If you move to a different state, check whether your documents are still valid in that state. Some states honor out-of-state advance directives, but it is safer to complete new forms for your new state of residence.

  8. If you are the caregiver, help your loved one complete their documents while they still have capacity. Approach the topic gently: 'I want to make sure I know what you would want if you ever got very sick. Can we talk about that together?' Use the Dementia Values and Priorities Tool (available online) to start deep conversations about values. Remember, the goal is to honor their wishes, not to push your own.

What not to do

  • Do not wait until a crisis. Many families delay these conversations because they are uncomfortable, but by the time a medical emergency happens, the person with dementia may no longer be able to communicate their wishes. Start now, even if it feels early.

  • Do not assume a generic living will from the internet is sufficient. State laws differ on witness requirements, notarization, and what forms are recognized. Using the wrong form can make your document invalid. Always use your state’s official form or consult an elder law attorney.

  • Do not forget to name a health care agent. A living will alone is not enough. Your agent can interpret your wishes in situations your living will did not cover, such as whether to treat a urinary tract infection or whether to hospitalize for a broken hip. Without an agent, doctors may default to family consensus, which can be messy and slow.

  • Do not keep the documents hidden. If no one knows where they are, they cannot be used. Tell your agent, your doctor, and a close family member where the documents are stored. Consider giving a copy to your hospital’s patient advocate or social worker.

  • Do not assume a POLST is the same as a living will. A POLST is a medical order, not a legal document. It is meant for people with serious illness or frailty, not for everyone. Discuss with your clinician whether a POLST is appropriate for your stage of dementia.

  • Do not pressure your loved one if they are not ready. People with early dementia may feel scared, anxious, or in denial. Instead of being bossy, be their support. Say: 'I love you and I want to make sure your wishes are honored. We can do this together, at your pace.'

Practical tools

  • The Conversation Project Starter Guide

    A free, step-by-step guide to help you talk with your family about your wishes for care at the end of life. It includes conversation starters, reflection questions, and a place to write down your thoughts. Use it before you fill out any legal forms. Download at theconversationproject.org.

  • State-Specific Advance Directive Forms (via AARP or American Bar Association)

    Links to the correct forms for your state. These forms are free and include instructions for witnesses and notarization. Do not use a generic form. Visit aarp.org/advancedirectives or americanbar.org.

  • Five Wishes

    A popular advance directive that covers both legal and personal wishes. It is recognized in most states (except a few that require additional forms). It includes sections on: who you want to make decisions, what kind of medical treatment you want, how comfortable you want to be, how you want people to treat you, and what you want your loved ones to know. Available at fivewishes.org.

  • Dementia Values and Priorities Tool

    A tool designed specifically for people with early dementia to help them clarify and communicate their values about care. It is not a legal document, but it can guide conversations and help your agent understand what matters to you. Available from the Alzheimer’s Association or your local dementia support organization.

  • Caregiver Binder with Labeled Pockets

    A physical binder with clear plastic pockets labeled: 'Advance Directives,' 'Power of Attorney,' 'Medication List,' 'Doctor Contacts,' 'Insurance.' Keep a copy of all your legal documents in the 'Advance Directives' pocket. Bring this binder to every medical appointment and hospital visit. You can find free printable templates online from Dementia Careblazers or similar sites.

  • POLST Form (if appropriate)

    Ask your doctor if a POLST is right for you. It is a bright pink form that emergency responders look for. It translates your wishes into medical orders. You can get it from your physician or hospice team. Keep it on your refrigerator or in your go-bag.

Discuss with your clinician

Ask your doctor: 'Given my dementia diagnosis, what medical decisions am I most likely to face in the next few years? Should I consider a POLST now or later?'

Ask your doctor: 'If I develop an infection like pneumonia or a urinary tract infection, what are the pros and cons of treating it with antibiotics versus focusing on comfort care?'

Ask your doctor: 'Under what circumstances would a feeding tube be recommended for someone with dementia? What are the risks and benefits?'

Ask your doctor: 'If I stop eating and drinking naturally at the end of life, what comfort measures can be provided?'

Ask your doctor: 'How do I make sure my advance directives are in my medical record and accessible to emergency staff?'

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