Your mom has early-stage dementia, and you're discussing what kind of medical care she'd want if she could no longer speak for herself. Would she want aggressive treatment in late-stage dementia? How does she feel about feeding tubes or ventilators? These conversations are difficult but essential. Advance directives and living wills ensure her voice guides medical decisions even when dementia has progressed to where she can no longer communicate her wishes.
Why advance directives matter with dementia:
Dementia is progressive and eventually eliminates the ability to make or communicate medical decisions. Without advance directives documenting wishes ahead of time, families face agonizing decisions about treatment without knowing what their loved one would have wanted. Doctors may provide aggressive treatments the person wouldn't have chosen, or families may disagree about appropriate care. Advance directives prevent these scenarios by capturing the person's values, preferences, and specific treatment wishes while they can still articulate them.
Key Takeaway:
Dementia is terminal and progressive, unlike sudden illnesses. Late-stage dementia creates unique questions about quality of life. The person will lose decision-making capacity, making advance planning critical. Treatment decisions span years, not days or weeks. Advance directives ensure the person's voice guides their care throughout the dementia journey, especially in the final stages when they can no longer advocate for themselves.
Understanding Advance Directives and Living Wills
These terms are often used interchangeably but have specific meanings.
What is an advance directive?
Broad definition: Advance directive is an umbrella term for legal documents stating healthcare wishes for situations when someone cannot make or communicate decisions.
Typically includes:
- Living will: Specific treatment preferences
- Healthcare power of attorney (healthcare proxy): Names someone to make medical decisions
- HIPAA authorization: Allows designated people to access medical information
Purpose: Ensures medical care aligns with person's values and wishes, not default medical protocols or family's potentially conflicting opinions.
What is a living will?
Specific document: Living will is the portion of advance directive that states specific treatment preferences, particularly for end-of-life care.
Addresses questions like:
- Do you want CPR if your heart stops?
- Do you want mechanical ventilation if you cannot breathe?
- Do you want artificial nutrition and hydration (feeding tubes)?
- Do you want antibiotics for infections in late-stage illness?
- Do you want hospitalization or prefer comfort care at current location?
- Do you want dialysis if kidneys fail?
When it applies: Living will applies when person is terminally ill, permanently unconscious, or in end-stage irreversible condition and cannot communicate wishes.
Healthcare power of attorney (healthcare proxy)
Companion document: Names someone to make medical decisions when person cannot.
How it works with living will: Living will provides specific guidance. Healthcare proxy interprets wishes and makes decisions for situations not covered in living will. Proxy ensures wishes in living will are followed.
Why both are needed: Living will can't anticipate every medical scenario. Healthcare proxy makes decisions consistent with documented values when specific situation isn't addressed.
For broader legal planning context, see our legal planning after dementia diagnosis guide.
Why Advance Directives Are Critical for Dementia
Dementia creates unique circumstances requiring thoughtful advance planning.
Dementia is terminal and progressive
Unlike acute illness: Dementia progresses over years, involves multiple decision points throughout disease, eventually causes death (typically through complications), and has no cure or reversal possible.
Implications: Person and family must consider long trajectory with declining quality of life, not just immediate crisis.
Capacity will be lost
Certainty of incapacity: Unlike heart attack or accident (may or may not affect decision-making), dementia definitively eliminates capacity eventually.
Window for planning:
- Early stage: can fully participate in decisions
- Middle stage: capacity becomes questionable
- Late stage: capacity is clearly lost
Act early: Complete advance directives while person can thoughtfully consider and articulate wishes.
Late-stage dementia raises difficult questions
By late stage:
- No verbal communication
- Doesn't recognize family
- Bedbound
- Needs total care
- Frequent infections
- Swallowing difficulties
Treatment questions: Is aggressive medical treatment appropriate when there's no possibility of improvement, person cannot express they want treatment, treatment may extend life but not restore quality, and comfort is compromised by interventions?
These questions are intensely personal with no universal "right" answers. Advance directives capture what's right for this individual.
Family may disagree
Common conflicts:
- Siblings have different views on aggressive treatment
- Spouse wants different approach than adult children
- Religious or cultural values differ among family members
- Guilt drives some family toward aggressive treatment
Advance directives resolve conflicts: Person's documented wishes take precedence over family disagreements. Reduces family conflict and guilt.
For guidance on family dynamics, see our how to tell family about dementia diagnosis article.
Essential Components for Dementia Advance Directives
Standard advance directive forms may not address dementia-specific scenarios.
General medical interventions
CPR (cardiopulmonary resuscitation):
State wishes about resuscitation if heart stops or breathing ceases.
Options: Full code (attempt all measures), Do not resuscitate (DNR), or Limited code (specify which measures).
Dementia considerations: CPR success rates are very low in late-stage dementia (often under 5%). Many people choose DNR for late-stage dementia.
Mechanical ventilation:
Breathing machine if unable to breathe independently. Ventilators can prolong life but may not restore meaningful function and can be distressing. In late-stage dementia, may simply prolong dying rather than preserve life.
Hospitalization:
Preference for hospital treatment vs. remaining in current setting. Hospitals are confusing and distressing for dementia patients. Person can express preference for comfort care at nursing home vs. hospital transfer when possible.
Artificial nutrition and hydration
Most controversial dementia-specific issue:
Feeding tubes:
When swallowing becomes difficult or impossible in late dementia, feeding tubes can provide nutrition artificially.
Arguments for:
- Provides nutrition
- May extend life
- Prevents "starvation"
Arguments against:
- No evidence improves quality of life
- May prolong dying, not living
- Associated with infections
- May require restraints
What to document: Clear statement about whether feeding tubes are wanted in late-stage dementia when swallowing fails.
Antibiotics for infections
Common late-stage scenario: Repeated infections (pneumonia, UTIs) in late-stage dementia.
Treatment question: Treat infections aggressively to extend life, or provide comfort care and allow natural death?
Options:
- Treat all infections aggressively
- Treat infections causing discomfort but not those allowing peaceful death
- Focus on comfort, not treatment of infections
- Let healthcare proxy decide based on specific situation
Pain management and comfort care
Everyone wants: Adequate pain management and comfort measures.
Specify:
- Always provide pain medication, even if it may shorten life
- Prioritize comfort over life extension in late stages
- Use medications to reduce anxiety and distress
Hospice: Can specify preference for hospice care when appropriate (life expectancy 6 months or less).
Dementia-specific language
Include statements like:
"These wishes apply specifically to late-stage dementia when I cannot communicate, do not recognize family, and have no meaningful quality of life as I define it."
"If I have advanced dementia and develop life-threatening infection, I prefer comfort care rather than aggressive treatment."
"In late-stage dementia, I do not want feeding tubes. Allow natural death."
Having the Conversation About End-of-Life Wishes
These discussions are difficult but essential.
Timing the conversation
Early in dementia: Best time is shortly after diagnosis while person can fully participate.
Before dementia: Ideally, everyone completes advance directives before any illness. If your loved one hasn't, early dementia is second-best time.
Don't wait: Capacity for these discussions diminishes as dementia progresses.
How to start the conversation
For person with dementia:
"Mom, I know this is hard to talk about, but because of your dementia diagnosis, we need to discuss what kind of medical care you'd want in the future if you couldn't speak for yourself. Your doctor needs to know your wishes, and we need to know so we can make sure they're followed."
Frame positively: "This ensures YOUR voice guides your care, not just what doctors or family think is best."
Key questions to discuss
Values and priorities:
- What makes life worth living for you?
- What would be worse than death?
- How do you define quality of life?
- What are your biggest fears about dementia?
Specific scenarios:
- If you're in late-stage dementia, can't communicate, don't recognize family, would you want aggressive medical treatment?
- If you develop pneumonia in late dementia, would you want antibiotics and hospitalization, or comfort care?
- If you can't swallow, would you want a feeding tube?
- If your heart stops, do you want CPR?
Common responses and how to handle them
"I don't want to think about this":
"I understand. It's difficult. But not planning means strangers make decisions without knowing your wishes. Taking an hour to do this gives you control."
"Just do what you think is best":
"I will, but I need to know what YOU think is best. What matters to you?"
Getting emotional:
Normal. Take breaks. Come back to discussion. Having it in pieces is fine.
For communication strategies, see our how to talk to someone about memory problems guide.
Completing Advance Directive Documents
Having conversations is just the first step. Documents must be properly completed.
State-specific forms
Requirements vary: Each state has laws governing advance directives. Use forms valid in your state.
Where to find forms:
- State department of health websites
- Elder law attorneys
- Hospitals and healthcare providers
- National Hospice and Palliative Care Organization (NHPCO)
Essential form elements
Living will section:
- Specific treatment preferences
- Conditions under which wishes apply
- Witness signatures (typically 2)
- Notarization (if required)
Healthcare proxy section:
- Name primary healthcare agent
- Name at least one alternate agent
- Grant specific authority
Copies and distribution
Who needs copies:
- Healthcare proxy/agent (keep original)
- Primary care doctor
- Specialists treating person
- Hospital upon admission
- Nursing home or assisted living facility
- Family members (for awareness)
POLST forms
Physician Orders for Life-Sustaining Treatment: Medical orders (not just wishes) signed by physician after discussion with patient.
When to complete: Serious illness, frail elderly, life expectancy less than one year, definitely in late-stage dementia.
Travels with patient: Often bright pink/orange for visibility. Emergency responders follow POLST orders immediately.
What Happens Without Advance Directives
Understanding consequences motivates completion.
Default medical treatment
Without documentation: Doctors provide standard medical care attempting to preserve life, regardless of whether patient would have wanted it.
In practice:
- Full resuscitation attempted
- Aggressive treatments provided
- Life-sustaining measures continued
- Transfer to hospital for complications
- Feeding tubes placed
Family conflict
Without guidance: Family members disagree about appropriate care based on their own values, not necessarily person's wishes.
Court involvement: Severe family conflicts may require court intervention, adding stress, expense, and delays.
Prolonged suffering
Without preferences documented: Medical system defaults to prolonging life even when quality of life is poor, no hope of improvement exists, person would not have wanted continued treatment, and death would be more merciful. Result: Potentially months or years of existence the person wouldn't have chosen.
Ensuring Advance Directives Are Followed
Completing documents is necessary but not sufficient.
Inform all healthcare providers
Proactive distribution: Don't wait for hospital admission. Give copies to all doctors before they're urgently needed.
- Ensure copy is in medical chart
- Discuss wishes so doctor understands
- Any doctor treating person should have copy
Healthcare proxy's responsibility
Proxy must:
- Know where original documents are located
- Bring copies to all medical encounters
- Speak up if wishes aren't being followed
- Advocate for person's documented preferences
- Make decisions consistent with documented values
Don't assume providers know: Even if documents are in chart, speak up: "My mother has advance directives stating she doesn't want aggressive treatment in late-stage dementia."
Addressing conflicts with providers
If providers resist honoring wishes:
- Show documented advance directives
- Request ethics consultation
- Escalate to supervisor or administrator
- Involve patient advocate
- Contact attorney if necessary
- Transfer to facility that will honor wishes
Know your rights: Advance directives are legal documents. Providers must honor them or transfer care.
For related guidance, see our questions to ask doctor after dementia diagnosis article.
How CareThru Helps Manage Advance Care Planning
Advance care planning involves documents, conversations, and coordination.
Tracking document completion: Note when advance directives were completed, where originals are stored, who has copies, when last reviewed.
Storing document locations: Record where to find originals, who the healthcare proxy is, and contact information.
Medical appointment coordination: Bring advance directive status to relevant medical appointments. Ensure new providers receive copies.
Family communication: Share that advance directives exist (respecting appropriate privacy about specific wishes) so family knows they're in place.
Reminders for review: Set reminders to review advance directives every few years while capacity allows updates.
The platform doesn't store legal documents but helps families organize and track essential advance care planning information.
Frequently Asked Questions
Do I need a lawyer to complete advance directives?
Not necessarily. Standard state forms work for straightforward situations. However, attorney guidance helps when wishes are complex, family dynamics are difficult, or questions about how to document specific wishes arise. Elder law attorney fees typically $500-$1,500 for advance directives.
Can advance directives be overridden by family?
No. Legally valid advance directives take precedence over family wishes. Healthcare proxy named in document makes decisions, and family cannot override. However, if family challenges document's validity (claiming person lacked capacity when signing), court may get involved. This is why proper execution with witnesses and notary is important.
What's the difference between DNR and living will?
DNR (Do Not Resuscitate) is specific order not to perform CPR if heart stops. Living will is broader document covering multiple treatment preferences including (but not limited to) resuscitation wishes. Living will provides comprehensive guidance; DNR is one component. POLST form includes DNR order plus other specific medical orders.
Do advance directives expire?
No, they remain valid indefinitely until revoked or updated. However, old documents should be reviewed periodically to ensure wishes haven't changed. Some healthcare providers question documents that are decades old, so updating every few years is wise. In dementia, update early while person can participate.
What if my loved one with dementia changes their mind about advance directives?
If they still have legal capacity, they can update or revoke advance directives anytime. However, if capacity is lost, they cannot legally change documents. This creates dilemma if person with middle-stage dementia says things contradicting advance directive. Healthcare proxy and medical team must determine whether statements reflect true preference or confusion from dementia.
Can I use advance directives from another state?
Generally yes, but specifics vary. Most states honor advance directives from other states if they were valid where executed. However, if person moves permanently, complete new advance directive meeting new state's requirements. This ensures providers readily accept documents.
What happens in late-stage dementia without advance directives?
Medical team provides standard aggressive care (resuscitation, hospitalization, antibiotics, feeding tubes) unless family and doctors agree otherwise. Without documented wishes, family's preferences guide decisions, which may not align with what person would have wanted. Results often in prolonged medical treatment person wouldn't have chosen and family conflict.
How do I know if my loved one's advance directive is being followed?
Healthcare proxy should attend medical encounters, bring copies of advance directive, explicitly discuss documented wishes with medical team, and speak up if treatment proposed contradicts documented preferences. If concerned wishes aren't being honored, request ethics consultation, escalate to administration, or seek legal assistance.
Disclaimer: This article provides general information about advance directives and living wills in dementia care and is not legal or medical advice. Advance directive laws vary by state. Consult qualified elder law attorney and healthcare providers about specific situation. This information does not substitute for professional legal counsel or medical guidance about end-of-life care decisions.
Sources
- National Hospice and Palliative Care Organization. (2024). "Advance Care Planning." Available at: https://www.nhpco.org/advance-care-planning
- Aging with Dignity. (2024). "Five Wishes Advance Directive." Available at: https://fivewishes.org
- American Bar Association. (2024). "Health Care Advance Directives." Available at: https://www.americanbar.org
- Alzheimer's Association. (2024). "Advance Directives." Available at: https://www.alz.org/help-support/legal-planning
- National Institute on Aging. (2024). "Advance Care Planning: Healthcare Directives." Available at: https://www.nia.nih.gov/health/advance-care-planning
- Teno, J. M., et al. (2007). "Association Between Advance Directives and Quality of End-of-Life Care." Journal of the American Geriatrics Society, 55(2), 189-194.
- Mitchell, S. L., et al. (2009). "The Clinical Course of Advanced Dementia." New England Journal of Medicine, 361(16), 1529-1538.
- Sampson, E. L., et al. (2009). "Enteral Tube Feeding for Older People with Advanced Dementia." Cochrane Database of Systematic Reviews.
- American Medical Association. (2024). "Code of Medical Ethics: Advance Directives." Available at: https://www.ama-assn.org
- Family Caregiver Alliance. (2024). "Advanced Health Care Directives." Available at: https://www.caregiver.org/resource/advanced-health-care-directives/