The Challenge of Future Decision Making

Standard advance directives often fail to address the unique challenges of dementia care. Creating dementia-specific directives helps ensure care aligns with personal values despite cognitive decline.

The American Bar Association's Commission on Law and Aging pioneered specialized dementia directives.

JAMA Internal Medicine research demonstrates that standard directives rarely address dementia-specific scenarios.

Specialized Dementia Advance Directives

Beyond Standard Documents

Dementia-specific directives address:

• Progressive levels of care based on cognitive stage
• Feeding and nutrition preferences over time
• Medication approaches for behavioral symptoms
• Residential care transition triggers
• Quality-of-life priorities at different stages

The Dementia Values & Planning Tool provides downloadable stage-specific directive templates.

The University of Washington Medical Center offers evidence-based dementia-specific planning tools.

Legal Standing Considerations

Understand that these documents:

• May supplement but not replace standard directives
• Should be created while decision-making capacity exists
• May require specific attestation of capacity
• Should be integrated with existing legal documents
• May need periodic reaffirmation as cognition changes

The National Academy of Elder Law Attorneys can help ensure proper integration with existing documents.

Five Wishes provides legally valid forms that include dementia provisions in many states.

Addressing Key Decision Points

Nutrition and Hydration Preferences

Consider documented preferences for:

• Hand-feeding assistance versus artificial nutrition
• Comfort-focused feeding approaches
• When to stop intervening if eating decreases
• Cultural and religious dimensions of food
• Quality versus quantity of life with feeding interventions

The Alzheimer's Association provides evidence on feeding approaches in advanced dementia.

The American Geriatrics Society's position statement offers guidelines on feeding decisions.

Medical Interventions by Stage

Specify preferences regarding:

• Hospitalization thresholds at different stages
• Antibiotic use for various infections
• Diagnostic testing limitations
• Cardiopulmonary resuscitation preferences
• Intensive care unit admission criteria

The Society for Post-Acute and Long-Term Care Medicine provides evidence-based guidelines for stage-appropriate interventions.

The National Hospice and Palliative Care Organization offers decision trees for common scenarios.

Residential Care Transitions

Document guidelines for:

• Triggers for considering residential care
• Preferred setting characteristics
• Financial considerations for various options
• Geographic preferences for facility location
• Balance between safety and autonomy

The Alzheimer's Association's Community Resource Finder helps locate appropriate care settings.

The National Center for Assisted Living provides assessment tools for residential transitions.

Creating Value-Based Care Guidelines

Defining Personal Quality of Life

Document what constitutes quality of life, including:

• Important relationships and social connections
• Meaningful activities and engagement
• Environmental preferences and comforts
• Spiritual and religious practices
• Sensory experiences that bring joy

The Association for Frontotemporal Degeneration provides quality-of-life assessment tools.

The Eden Alternative offers frameworks for defining meaningful engagement at all stages.

Behavioral Symptom Management

Express preferences regarding:

• Non-pharmacological approaches to try first
• Medication use thresholds and limitations
• Environmental modifications versus medication
• Physical restraint alternatives
• Balance between alertness and symptom control

The American Psychiatric Association's dementia guidelines provide evidence on behavioral intervention approaches.

The National Center for Complementary and Integrative Health offers research on non-pharmacological options.

Implementation and Accessibility

Ensuring Document Availability

Make plans for:

• Electronic health record integration
• Emergency room access protocols
• Copies for all potential decision makers
• Regular review and updating
• Portable versions for care transitions

MyDirectives digital advance care planning platform provides secure storage and accessibility.

The Physician Orders for Life-Sustaining Treatment (POLST) paradigm ensures directive visibility across care settings.

Supporting Decision Makers

Provide additional guidance:

• Decision-making worksheets based on your values
• Video messages explaining your reasoning
• Letters of guidance to future caregivers
• Examples of acceptable versus unacceptable situations
• Decision trees for common scenarios

The Conversation Project offers tools for creating supplemental guidance.

The Family Caregiver Alliance provides resources for implementing these preferences.

Documenting stage-specific care preferences provides a roadmap for preserving dignity and ensuring person-centered care throughout the dementia journey, while reducing the emotional burden on family caregivers making difficult decisions.