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Advance Care Planning: Legal Documents for End-of-Life Care in Dementia

Advance care planning is a gift of clarity and compassion for your family. When dementia progresses, legal documents called advance directives ensure your loved one’s wishes for medical treatment, comfort, and funeral arrangements are honored, even when they can no longer speak for themselves. This can feel overwhelming, but there are concrete steps you can take today to protect your family from confusion and heartache later. You don’t have to do it alone—many resources and professionals are ready to help.

Key points

  • Advance directives—a living will and healthcare power of attorney—are essential for ensuring your loved one’s wishes are honored when they can no longer speak for themselves.
  • Start the conversation early, while the person can still participate. Use tools like The Conversation Project Starter Kit or Five Wishes.
  • Complete state-specific forms, sign them with witnesses or a notary, and give copies to the healthcare agent, doctor, and facility.
  • A DNR/DNI order must be signed by a physician and kept at home and in the medical record. A DNR bracelet is recommended.
  • Store all documents in an organized binder and review them annually or after any major health change.
  • If you are a spouse caregiver and both have dementia, seek professional help from an elder law attorney or geriatric care manager.

Why advance directives matter in late-stage dementia

In the late stages of Alzheimer’s or Lewy body dementia, your loved one will lose the ability to communicate their preferences for medical care. Without written instructions, healthcare providers will default to life-sustaining treatments—like feeding tubes, breathing machines, or CPR—even if that goes against what the person would have wanted. This can lead to prolonged suffering and family conflict. Advance directives are legal documents that let you document your loved one’s wishes while they still have capacity, so that their values guide care at the end of life. The Alzheimer’s Association emphasizes that these documents enable you to record preferences for treatment, comfort care, and even funeral planning, so your family never has to guess what your loved one wanted.

The core documents: living will and healthcare power of attorney

Two documents form the foundation of advance care planning. A living will spells out the types of medical treatments your loved one wants or does not want if they are in a terminal condition, coma, or late-stage dementia—for example, whether they want a feeding tube, a breathing machine, or other invasive measures. A healthcare power of attorney (also called a durable power of attorney for healthcare or healthcare proxy) appoints a trusted person—and a backup—to make medical decisions when your loved one cannot. Unlike a regular power of attorney, a durable one remains in effect after the person loses mental capacity. These documents work together: the living will provides general guidance, and the agent can interpret it in real time. Many states also allow a combined form called an advance healthcare directive.

Additional documents: DNR, DNI, and final disposition

Beyond the living will and healthcare power of attorney, there are other critical documents. A Do Not Resuscitate (DNR) order is a physician-signed order that tells emergency responders not to perform CPR if the person’s heart stops. A Do Not Intubate (DNI) order similarly directs that a breathing tube not be inserted. These orders must be written by a doctor and kept at home and in the medical record. Many states require a special bracelet to alert emergency personnel. Also consider an Authorization for Final Disposition, which names who will handle funeral arrangements and what type of service is desired. Without this, family members may argue over burial versus cremation. These documents should be reviewed and updated whenever the person is admitted to a new facility or hospital.

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

Step-by-step

  1. Start the conversation early while the person can still participate, using open-ended prompts from The Conversation Project's free starter kit.

  2. Complete state-specific living will and healthcare power of attorney forms from AARP or the American Bar Association, discussing each treatment option (feeding tubes, ventilators, dialysis) together.

  3. Name a primary and backup healthcare agent who is willing, available, and understands they must follow the person's wishes, not their own.

  4. Brief other close family members on the decisions made to prevent later conflict or contested authority.

  5. Sign documents per state requirements (usually two witnesses who are not family/heirs, or a notary), keep originals accessible at home, and give copies to the agent, backup agent, doctor, and any care facility.

  6. Obtain a physician-signed DNR/DNI order, place it in the medical record, get a DNR bracelet, and keep a copy at home and in the car.

  7. Complete an Authorization for Final Disposition naming who will make funeral arrangements and specifying burial/cremation, location, and religious/cultural preferences.

  8. Store all documents in a single organized binder with labeled tabs and a digital copy on your phone or cloud storage.

  9. Review documents annually or after any major health change; update DNR orders and advance directives when moving to a new facility or if the person's condition changes significantly.

  10. If both spouses have dementia, consult a geriatric care manager or elder law attorney; durable powers of attorney must be established while both still have capacity, or a conservatorship/guardianship may be needed.

What not to do

  • Do not rely on verbal wishes alone—without written documents, providers must use life-sustaining treatments by default.

  • Do not wait until a crisis: once the person loses decision-making capacity, they cannot legally sign advance directives, requiring costly and stressful guardianship court proceedings.

  • Do not use generic online forms without verifying your state's witnessing, notarization, and language requirements.

  • Do not store documents in a safe deposit box or locked drawer that only you can access; no one can retrieve them in an emergency.

  • Do not fail to name a backup healthcare agent—if the primary agent is unavailable, the court may appoint someone you would not choose.

  • Do not have the advance care planning conversation only once—revisit annually or after major health events, as values or treatments may change.

Practical tools

  • The Conversation Project Starter Kit

    Free step-by-step guide with conversation starters, a list of common treatment decisions, and a preferences worksheet. Available at theconversationproject.org.

  • State-specific advance directive forms (AARP or American Bar Association)

    Downloadable, state-valid forms for living will and healthcare power of attorney. No lawyer required in most states. Visit aarp.org or americanbar.org.

  • Five Wishes advance directive

    User-friendly, legally valid in most states. Covers healthcare agent, treatment preferences, comfort, dignity, and messages to loved ones. Available at fivewishes.org.

  • DNR bracelets (e.g., StickyJ Medical ID)

    Medical ID bracelet clearly stating 'Do Not Resuscitate' with patient name and doctor contact, to alert emergency responders.

Does advance care planning reduce the use of life-sustaining treatments in dementia patients?

Yes, advance care planning helps ensure that your loved one receives care that aligns with their values, which often means less aggressive life-sustaining treatments like ventilators or feeding tubes. By documenting these wishes early, you spare yourself the impossible guesswork later.

What legal and financial documents do I need to plan for future health care decisions in dementia?

You need two key documents: a living will to state treatment preferences, and a healthcare power of attorney to name someone to make decisions when your loved one cannot. Complete state-specific forms, sign them with a witness or notary, and give copies to the agent, doctor, and facility.

When should I consider stopping oral hydration or antibiotics as swallowing fails?

Stop oral hydration or antibiotics when swallowing fails because these can cause choking, pneumonia, or increased suffering without extending quality of life. Talk with the doctor about comfort-focused care, and trust that your advance directives already guide this difficult decision if discussed early.

Discuss with your clinician

Ask your loved one’s doctor: 'Given their specific dementia type and stage, what medical treatments are most likely to be considered in the next year? For example, when should we discuss a DNR or DNI order?'

Ask: 'If my loved one stops eating or drinking, is a feeding tube ever recommended for dementia? What are the risks and benefits?'

Ask: 'How do we ensure that a DNR order is honored if my loved one is transferred to a hospital or emergency room? Do we need a special bracelet or form?'

Ask: 'What is the process for transitioning to hospice care? What documents do we need to have in place?'

Ask: 'If my loved one has Lewy body dementia, are there any specific treatments (like antipsychotics) that we should discuss in advance to avoid?'

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