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Dementia-Specific Advance Directive Tools: A Guide for Early-Stage Planning

You are not alone in feeling overwhelmed by the idea of planning for a future with dementia. Standard advance directives often miss the mark for dementia, focusing on coma or terminal illness rather than the slow, progressive loss of decision-making ability. A dementia-specific advance directive tool, like the one from Compassion & Choices, helps you and your family document your values, wishes, and quality-of-life priorities while you still have the capacity to speak for yourself. This guide walks you through exactly how to use such a tool, what to say, and how to avoid common pitfalls so you can feel prepared and empowered.

Key points

  • Standard advance directives are not enough for dementia; use a dementia-specific add-on like the Compassion & Choices Dementia Directive.
  • Complete the directive as soon as possible after diagnosis, while you still have the capacity to make and communicate your own decisions.
  • Involve your healthcare agent in the conversation—they need to understand your values, not just read the document.
  • Use free tools like The Conversation Project Starter Kit and CaringInfo to guide the process and ensure legal validity in your state.
  • Review and update the directive annually or after major life changes.
  • Keep a copy in a care binder with your medical conditions and provider list, and share it with your doctor and hospital.

Why Standard Advance Directives Fall Short for Dementia

Most standard advance directives—living wills and durable powers of attorney—were designed for sudden, catastrophic events like a coma or persistent vegetative state. They use legalistic language about life support and feeding tubes, but they don't address the unique, gradual challenges of dementia: losing the ability to recognize loved ones, becoming unable to communicate pain, or needing help with daily activities like eating and bathing. As one expert noted, these standard forms 'really pertain to if I were in a persistent vegetative state... none of those situations... really pertain to the number one' experience of dementia (source 2). This gap leaves families guessing when crises arise, often leading to guilt, conflict, or care that doesn't match the person's true wishes.

What a Dementia-Specific Directive Does Differently

A dementia-specific advance directive, such as the one created by Compassion & Choices in collaboration with University of Washington experts, is designed as an add-on to your existing advance directive. Instead of focusing only on end-of-life medical procedures, it prompts you to think about your values, your definition of quality of life, and what makes life worth living for you right now. It asks questions like: 'What brings you joy? What activities are essential to your sense of self? Under what circumstances would you want to stop treatments that prolong life but don't improve quality?' This tool normalizes the conversation about dementia and helps you document your wishes in a way that is specific, actionable, and legally recognized in most states. As the Compassion & Choices team explains, 'the tool works by guiding you through some really important information... we start by talking about advance directives because... people recognize advance directives are important but don't always get around to doing them' (source 3).

The Urgency of Acting Early

The Alzheimer's Association recommends completing these documents 'as soon as possible after a diagnosis of dementia' (source 4). Why? Because early in the disease, you still have the cognitive capacity to understand the options, weigh trade-offs, and communicate your values clearly. Once dementia progresses to moderate or severe stages, you may lose the ability to make or communicate these decisions. If no directive is in place, your family must make decisions 'consistent with what they believe the person would have wanted, while acting in that person's best interest' (source 4). This is a heavy burden, and without written guidance, it can lead to family disagreements or care that you would not have chosen. Acting now is an act of love for yourself and your family.

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

Step-by-step

  1. 1. Download the Compassion & Choices Dementia Directive from their website (compassionandchoices.org). This is a free, state-specific PDF that includes a values worksheet and a legal form. Print two copies: one for your records and one to share with your healthcare agent.

  2. 2. Set aside a quiet hour with your care partner or a trusted family member. Use the 'Conversation Starter Guide' from The Conversation Project (theconversationproject.org) to warm up the discussion. Ask each other: 'What does a good day look like for you? What would make life not worth living?'

  3. 3. Complete the values worksheet section of the Dementia Directive. Write down your answers to prompts like: 'What activities are most important to me?' (e.g., gardening, listening to music, visiting with grandchildren) and 'What fears do I have about my future care?' (e.g., being in pain, being alone, losing dignity). Be as specific as you can.

  4. 4. Appoint a healthcare agent (durable power of attorney for healthcare) if you haven't already. This person will make decisions when you cannot. Choose someone who knows you well, can handle conflict, and is willing to follow your wishes even if they disagree. Discuss your values with them directly—don't assume they know.

  5. 5. Fill out the legal form portion of the Dementia Directive. This includes checkboxes for specific scenarios: 'If I have dementia and can no longer recognize my loved ones, I do not want life-prolonging treatments' or 'If I have dementia and am in pain that cannot be controlled, I want comfort care only.' Sign the form in front of a notary or two witnesses, as required by your state. Check your state's requirements on the Compassion & Choices site.

  6. 6. Make copies of the completed directive and give them to: your healthcare agent, your primary care doctor, your neurologist or geriatrician, and your local hospital's medical records department. Keep a copy in a clearly labeled folder in your home, and tell your family where it is.

  7. 7. Review and update the directive every year or after any major life change (e.g., death of a spouse, new diagnosis, move to a care facility). Your values may shift as you experience the disease. Set a calendar reminder to revisit the document with your healthcare agent.

  8. 8. If you are unsure about any medical or legal details, ask your doctor or a social worker to review the form with you. They can help clarify terms like 'artificial nutrition and hydration' or 'comfort care' so you can make informed choices.

What not to do

  • Do not assume a standard living will is enough for dementia. Standard forms focus on coma or terminal illness and miss the slow decline of dementia. Instead, use a dementia-specific add-on like the Compassion & Choices tool to capture your values around quality of life.

  • Do not wait until you are in crisis to have these conversations. Once you lose capacity, you cannot legally change your advance directive. Start the conversation now, even if it feels uncomfortable. Use the Conversation Starter Kit to ease into it.

  • Do not fill out the form alone without discussing it with your healthcare agent. Your agent needs to understand your wishes so they can advocate for you. If they don't know what you want, the document is just paper. Talk through each scenario with them.

  • Do not use a generic form from the internet without checking your state's laws. Each state has different requirements for witnessing, notarization, and recognition of advance directives. Use the state-specific forms from Compassion & Choices or the National Hospice and Palliative Care Organization (caringinfo.org).

  • Do not think you are 'giving up' by planning ahead. Planning is not giving up—it is taking control of your future and reducing the burden on your family. Many people find it empowering to document their wishes and feel relief after completing the directive.

Practical tools

  • Compassion & Choices Dementia Directive

    A free, state-specific, downloadable PDF that serves as an add-on to your standard advance directive. It includes a values worksheet, a legal form with checkboxes for dementia-specific scenarios, and instructions for completing it. Available at compassionandchoices.org. Use it to document your wishes about life-prolonging treatments, comfort care, and what quality of life means to you.

  • The Conversation Project Starter Kit

    A free, step-by-step guide to help you start the conversation about your wishes with family and healthcare providers. It includes prompts like 'What matters to me at the end of life?' and 'What would I want my loved ones to know?' Available at theconversationproject.org. Use it as a warm-up before filling out the legal forms.

  • CaringInfo State-Specific Advance Directive Forms

    A free resource from the National Hospice and Palliative Care Organization that provides links to the correct advance directive forms for every U.S. state. Also includes guides on how to complete them. Available at caringinfo.org. Use this to ensure your forms are legally valid in your state.

  • Pain Assessment in Advanced Dementia (PAINAD) Scale

    A simple, 5-item observational tool (breathing, vocalization, facial expression, body language, consolability) rated 0-2 each, for a total score of 0-10. Use it in later stages when your loved one cannot speak to assess if they are in pain. Print it from a free online source and keep it in your care binder. Discuss pain management with your clinician if the score is 4 or higher.

  • Care Binder System

    Create a physical binder with tabs: 'Advance Directives,' 'Medical Conditions & Providers,' 'Medications,' 'Emergency Contacts,' and 'Care Preferences.' On the first page, list every diagnosis and the treating provider's name and phone number (source 26). Keep this binder in a visible place at home and bring it to all medical appointments.

Discuss with your clinician

Ask your doctor: 'Given my diagnosis, what specific medical decisions am I most likely to face in the next 2-5 years? For example, should I think about antibiotics for infections, feeding tubes, or hospitalizations?'

Ask your neurologist: 'How will my dementia affect my ability to make decisions over time? At what point should we revisit my advance directive?'

Ask your primary care provider: 'Can you help me understand the difference between a living will, a durable power of attorney for healthcare, and a POLST? Which ones do I need?'

If you are considering a dementia-specific directive that includes options like stopping eating and drinking, discuss the ethical and legal implications with your clinician and a palliative care specialist.

Related guides

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