Starting the Advance Care Planning Conversation and Documenting Wishes
Advance care planning is about making sure your loved one’s values and preferences guide their medical care even when they can no longer speak for themselves. For a person with dementia, the window to have these conversations and complete legal documents is limited—the earlier you start, the more fully they can participate. This can feel overwhelming, but there are concrete, step-by-step ways to begin, using simple conversation starters and state-specific forms. You are not alone in this, and taking action now brings peace of mind and clarity for everyone involved.
Key points
- Start advance care planning as soon as possible after a dementia diagnosis—while your loved one can still participate meaningfully.
- The conversation about values and quality of life is more important than the paperwork alone. Use tools like The Conversation Project or Five Wishes to guide these talks.
- Name a health care agent (durable power of attorney for health care) and a backup person. Discuss their role and your loved one’s wishes with them directly.
- Complete state-specific advance directive forms and living will. Keep copies accessible and share them with the health care agent, doctor, and hospital.
- Review and update documents regularly, especially after any major change in health or living situation.
- Do not avoid the conversation because it is hard—avoiding it now leads to greater stress and conflict later.
Why Advance Care Planning Matters Now, Not Later
Dementia is a progressive condition that gradually erodes a person’s ability to understand, weigh options, and communicate their wishes. The Alzheimer’s Association advises that advance directives should be completed as soon as possible after a diagnosis of dementia. Waiting until later stages means the person may no longer have the capacity to make or communicate these decisions, leaving family members to guess what they would have wanted. This can create enormous stress, guilt, and conflict among loved ones at an already difficult time. By planning early, you honor your loved one’s autonomy and give them a voice in their own care, even when they can no longer speak.
What Advance Directives Actually Cover
Advance directives are legal documents that let a person document their preferences for medical treatment and end-of-life care. The two most common types are a living will and a durable power of attorney for health care. A living will spells out what treatments a person wants or does not want near the end of life—things like life-prolonging machines, feeding tubes, or resuscitation. A durable power of attorney for health care names a trusted person (a health care agent or proxy) to make medical decisions when the person cannot. These documents are not just for the very end; they also guide care during serious illnesses, infections, falls, or hospitalizations that are common in the middle stages of dementia. As one expert notes, advance directives help with many medical complications long before end-of-life issues arise.
The Conversation Is More Important Than the Paperwork
Many people think filling out a form is enough, but the real value comes from having ongoing conversations about what matters most. A simple advance directive form may only ask about a few scenarios—like being in a coma or a vegetative state—but real life is far more complex. As one care expert explains, the number of decisions at the end of life are far more complicated than what a state form covers. It is much more important to understand what quality of life means to your loved one: Is it most important that they are able to hold their grandbaby one last time, or that they live two more years even if that means being in a hospital bed? These conversations help you and your health care agent make decisions that truly reflect the person’s values, not just check boxes on a form.
General caregiving information, not medical advice. Check medications and major care changes with your clinician.
Step-by-step
Start the conversation as early as possible after diagnosis, using a gentle, values-based opener like "I want to make sure we always do what matters to you, even if you can't tell me someday" — and avoid framing it as "end-of-life" planning.
Choose a primary health care agent and at least one backup, then have an explicit conversation about the role and what your loved one values so the agent can advocate effectively later.
Complete your state-specific advance directive forms (living will and durable power of attorney for health care), being specific about life-prolonging treatments such as ventilators, feeding tubes, and resuscitation rather than leaving them vague.
Discuss and document preferences for palliative and comfort care in middle- and late-stage scenarios, such as whether to go to the hospital for a serious infection or fall or be kept comfortable at home.
Store the signed originals in a safe but accessible place (not a safe deposit box), keep a digital copy, and tell the health care agent, primary care doctor, and local hospital where the documents are.
Make sure the agent, primary care doctor, and key family members have actually read the documents and discussed them — handing out copies isn't enough if no one knows what they say.
Review and update the documents every few years or after any major change in health, because values and realities can shift as dementia progresses.
What not to do
Don't wait for a crisis or late-stage dementia to start the conversation, and don't let discomfort stop you — by the time a crisis hits, your loved one may no longer be able to participate meaningfully.
Don't assume a state advance directive form covers everything; these forms usually address only a few scenarios like coma or vegetative state, so pair them with values-based conversations about quality of life.
Don't rely only on a living will without naming a health care agent — a form can't anticipate every situation, and a trusted agent is needed to interpret your loved one's values in real time.
Don't complete the documents and file them away where no one can find them; share copies with the agent, doctor, and hospital and walk everyone through the wishes so they can honor them.
Practical tools
The Conversation Project Starter Guide
A free, downloadable guide from theconversationproject.org that walks you through step-by-step questions to help your loved one think about and communicate their values.
Five Wishes
A plain-language advance directive (fivewishes.org) that is legally valid in most states and covers who makes decisions, the kind of medical treatment wanted, comfort preferences, how the person wants to be treated, and what they want loved ones to know.
State-Specific Advance Directive Forms (via AARP or American Bar Association)
Find the correct legal forms for your state at aarp.org or americanbar.org; each state has different witnessing and notarization requirements, and you generally do not need a lawyer to complete them.
POLST (Physician Orders for Life-Sustaining Treatment) Form
A medical order signed by a doctor that complements advance directives in the later stages of dementia, especially useful for guiding emergency and hospital care when immediate decisions must be made.
Discuss with your clinician
Ask your loved one’s doctor: 'Given my loved one’s specific type and stage of dementia, what medical decisions are most likely to come up in the next year or two? How can we prepare for those in advance directives?'
Discuss the pros and cons of do-not-resuscitate (DNR) and do-not-intubate (DNI) orders. These are separate from advance directives and should be reviewed each time your loved one enters a hospital or care facility.
Ask about palliative care options: 'When would palliative care be appropriate for my loved one? Can we set up a consultation to discuss symptom management and quality of life?'
Discuss voluntary stopping of eating and drinking (VSED) as an option near the end of life. This is a complex ethical and medical decision that requires careful discussion with the care team.
If your loved one has a feeding tube or breathing machine mentioned in their living will, ask the doctor: 'Under what circumstances would these be considered medically appropriate or not? How do we ensure our wishes are followed in the hospital?'
Related guides
- finding and screening an in-home care provider
- Durable Power of Attorney for Dementia: A Complete Family Guide to Protecting Finances and Avoiding Guardianship
- Palliative care access for dementia versus other conditions
- Hospice care quality for dementia
- Starting End-of-Life Conversations Before a Crisis: A Guide for Family Caregivers
- Creating and Using Advance Directives for Alzheimer's: A Guide for Late-Stage Caregivers
- Why DNR/DNI Documents Must Be Readily Available for Late-Stage Dementia
- Meal planning for a person with dementia
- Caregiver self-assessment before making care changes
- Advance Care Planning in Nursing Homes: A Guide for Family Caregivers and Physicians