Medical emergencies involving someone with dementia require special preparation and clear decision-making frameworks.

Having supported my mother through several hospital visits during her Alzheimer's disease journey, I've learned that advance planning for emergencies is essential for ensuring appropriate care that honors the person's wishes.

Why Emergency Planning Is Critical

People with cognitive decline face unique vulnerabilities during medical emergencies:

• Difficulty communicating symptoms, pain levels, or medical history
• Increased confusion in unfamiliar environments like emergency rooms
• Inability to make informed decisions about treatment options
• Heightened anxiety that may exacerbate symptoms or behaviors

Research shows that people with dementia often receive different emergency care than those without cognitive impairment—sometimes receiving fewer pain medications or more aggressive interventions that might not align with their wishes.

Essential Advance Care Documents

The foundation of emergency decision-making is having the right legal documents in place:

Advance Healthcare Directives

These documents outline treatment preferences for various scenarios:

• Address specific medical interventions (resuscitation, intubation, artificial nutrition)
• Reflect the person's values and quality of life considerations
• Include specific guidance for dementia-related scenarios

Standard directives often don't adequately address dementia-specific situations, making specialized directives particularly valuable.

Healthcare Power of Attorney/Proxy

This crucial document:

• Names a primary decision-maker and alternates
• Grants specific powers regarding healthcare choices
• Takes effect when the person cannot make or communicate decisions

POLST/MOST Forms

These medical orders:

• Translate preferences into specific medical orders
• Travel with the person across care settings
• Address emergency interventions specifically
• Are immediately actionable in emergency situations

Creating a Decision-Making Framework

Beyond legal documents, developing a clear decision-making framework helps navigate complex emergency situations:

Clarify Values and Goals of Care

Work with the person with dementia (while they can still participate) to establish:

• Overall goals for medical care (comfort-focused vs. life-prolonging)
• Quality of life considerations that should guide decisions
• Specific interventions they would want avoided

Documenting these conversations provides crucial context for later decisions.

Establish a Clear Decision-Making Hierarchy

When multiple family members are involved, determine in advance:

• Who has legal decision-making authority
• The process for consulting others
• How disagreements will be resolved

This clarity prevents conflicts during high-stress emergency situations.

Define Emergency Scenarios and Responses

Consider likely emergency situations and outline preferred approaches for each:

• Falls and potential fractures
• Respiratory distress or pneumonia
• Heart-related emergencies
• Severe infections or sepsis
• Acute behavioral crises

Many families find that consulting with healthcare providers to develop scenario-specific guidelines improves their quality and practicality.

Creating Essential Emergency Tools

Emergency Information Packet

Develop a comprehensive but accessible packet containing:

• One-page medical summary with diagnosis, medications, and allergies
• Contact information for healthcare providers and decision-makers
• Copies of advance directives and POLST/MOST forms
• Brief cognitive status explanation and communication tips

Keep this information updated and easily accessible in a consistent location.

Communication Cards for Emergency Settings

Develop concise cards explaining:

• The person's dementia diagnosis and communication needs
• Effective approaches for reducing distress
• Signs that might indicate pain or discomfort
• Successful redirection strategies

These can significantly improve care quality in emergency settings where staff may have limited dementia expertise.

Strategies for Different Stages of Dementia

Decision-making approaches should evolve as dementia progresses:

Early-Stage Considerations

When the person can still participate in decisions:

• Involve them directly in emergency planning discussions
• Document their specific wishes while they can express them
• Consider recording video statements about care preferences

These preparations honor autonomy while creating guidance for future situations.

Middle-Stage Approaches

As decision-making capacity becomes more variable:

• Use previously documented wishes to guide choices
• Be vigilant about pain assessment and management
• Consider whether emergency settings are appropriate for various situations

Late-Stage Considerations

In advanced dementia:

• Shift focus toward comfort and dignity as primary goals
• Consider whether hospital transfers will benefit overall wellbeing
• Evaluate interventions based on burden vs. benefit
• Implement palliative care approaches when appropriate

At this stage, having clear documentation of wishes becomes particularly valuable for making difficult decisions.

Navigating the Emergency Department Effectively

When emergency department visits are necessary:

Preparation Strategies

• Call ahead when possible to alert staff about cognitive needs
• Bring familiar comfort items and sensory aids
• Ensure essential medications accompany the person
• Have advance directive copies readily available

Advocacy During Emergency Care

Effective advocacy includes:

• Requesting a quiet space away from high-stimulation areas
• Ensuring someone familiar remains present when possible
• Asking specifically about pain assessment and management
• Questioning whether each intervention aligns with documented care goals

This advocacy helps ensure that cognitive impairment doesn't result in inadequate treatment.

Building Relationships with Emergency Providers

Proactive relationship development improves emergency experiences:

• Consider consultation with emergency providers before crises occur
• Explore whether preferred facilities have dementia-friendly initiatives
• Build relationships with local emergency medical services
• Consider medical alert services that share information with emergency responders

Some communities have developed specialized emergency response programs for people with dementia.

After the Emergency: Review and Revision

Each emergency provides valuable information for future planning:

• Document what worked well and what could be improved
• Update emergency information based on new medical developments
• Consider whether goals of care should be adjusted

This ensures that emergency planning evolves as the person's condition changes.

Supporting Decision-Makers

Those responsible for emergency decisions carry a significant emotional burden:

• Create support systems for decision-makers before emergencies occur
• Remember that the goal is faithful representation of the person's wishes
• Practice self-compassion when facing complex situations

Many decision-makers benefit from connecting with others who have navigated similar experiences.

Moving Forward with Confidence

Creating a strategy for emergency decision-making provides greater protection and peace of mind.

By establishing clear documents, decision processes, and communication tools, you create a system that honors the person's wishes even when they cannot express them—perhaps the most profound act of care possible during a medical emergency.

Remember that this planning isn't about limiting care, but rather ensuring that care provided during emergencies aligns with the person's values and best interests throughout their journey with dementia.