What should substitute decision makers consider when making decisions for individuals with dementia?

According to the Alzheimer's Association, over 6 million Americans are living with Alzheimer's dementia, highlighting the vital role of substitute decision makers. Knowing what should substitute decision makers consider when making decisions for individuals with dementia? is essential for honoring their wishes and ensuring their quality of life, even as their capacity diminishes.

Quick Summary

Substitute decision makers must balance the individual's known past wishes, present values, and overall best interests, considering their physical, emotional, and financial well-being, while involving them whenever possible. This complex process requires careful assessment, communication, and adherence to legal guidelines.

Key Points

• Honor Wishes: Base decisions on the individual's documented advance directives and known values when they had capacity.

• Act in Best Interest: When wishes are unclear, prioritize the person's current quality of life, comfort, and well-being.

• Practice Person-Centered Care: Tailor decisions to the individual's personal history, daily routines, and spiritual beliefs.

• Communicate Effectively: Serve as the primary point of contact with healthcare providers, ensuring the patient's preferences are known and understood.

• Manage Finances Transparently: Maintain meticulous records for all financial matters to protect against disputes and ensure proper asset management.

• Seek Support: The emotional burden is heavy; utilize support groups and professional advisors to avoid caregiver burnout.

• Involve the Individual: Whenever possible, involve the person with dementia in simple decisions to maintain their dignity and self-esteem.

The Core Responsibility of a Substitute Decision Maker

Being named a substitute decision maker (SDM) is a profound responsibility that requires careful and ethical judgment. For individuals with dementia, a progressive and often unpredictable condition, this role becomes increasingly complex over time. The primary duty of an SDM is to make choices that respect the person's autonomy while prioritizing their health, safety, and quality of life.

Understanding Legal Standards: Substituted Judgment vs. Best Interest

When making decisions, SDMs typically rely on a hierarchical approach rooted in legal and ethical principles.

1. Substituted Judgment: This is the highest standard. It requires the SDM to make decisions based on what they believe the individual with dementia would have chosen for themselves if they still had the capacity to do so. This relies on the individual's expressed wishes, values, and beliefs documented in advance directives or previously discussed with the SDM.
2. Best Interest: If the individual's past wishes are unknown, unclear, or impossible to follow, the SDM must determine the course of action that is in the individual's overall best interest. This involves weighing the risks and benefits of potential decisions while considering the person's physical, emotional, and social well-being.

Balancing Past Wishes and Current Well-being

A significant challenge for SDMs is when a person's prior wishes appear to conflict with their current well-being. For example, a person may have previously stated a desire to avoid medical interventions, but is now in distress and could be helped by treatment. The SDM must navigate this by considering:

• The Individual's Current State: How does the decision affect their current quality of life and physical comfort? For instance, would a treatment, despite previous resistance, significantly alleviate pain or suffering now?
• The Progressive Nature of Dementia: The SDM must recognize that the person's values and priorities may change over time as their disease progresses. What they valued five years ago may not align with their current reality or comfort.
• The Emotional Toll: Confronting past wishes can be emotionally difficult. SDMs should seek support from family, professionals, and support groups to manage these complex decisions.

Practical Steps for Navigating the Role

Communication Strategies with Healthcare Teams

Effective communication is paramount. SDMs should act as a bridge between the individual with dementia and their healthcare team.

• Be a Patient Advocate: Clearly communicate the individual's known preferences and values to doctors, nurses, and other care providers.
• Ask Clarifying Questions: Don't be afraid to ask for explanations in plain language. If you are unclear about a prognosis or treatment, request that the doctor repeat it or phrase it differently.
• Share Patient-Specific Information: Remind healthcare staff of the individual's hobbies, likes, dislikes, and personality traits. Sharing personal stories helps humanize the patient and can lead to more person-centered care.

Financial and Estate Considerations

Managing finances for a person with dementia is a critical and sensitive task. It is vital to separate the SDM's interests from the individual's and act transparently.

• Document Everything: Keep meticulous records of all financial transactions, including bills paid, investments managed, and assets protected. This protects the SDM from future legal challenges or family disputes.
• Plan for Long-Term Care Costs: Research options for home care, assisted living, or memory care facilities. Understand how Medicare, Medicaid, or long-term care insurance will factor into these costs.
• Gather Important Papers: Ensure all important documents—wills, insurance policies, bank records, and advance directives—are organized and securely stored in one place.

Navigating Complex Choices and Conflicts

Resolving Family Conflicts

Disagreements among family members about the best course of action can be emotionally and legally challenging. Here are some strategies for resolving such conflicts:

• Hold a Family Meeting: Bring together all invested family members to discuss the care plan openly and honestly. Having a neutral third party, like a mediator, can help facilitate the discussion.
• Refer to Legal Documents: The legal hierarchy established in documents like a power of attorney should serve as the final authority. Remind all parties of the individual's documented wishes.
• Document Disagreements: If a consensus cannot be reached, documenting the reasons for the disagreement and the final decision can provide clarity and protection.

Creating a Person-Centered Care Plan

A person-centered approach ensures that care is tailored to the individual's changing needs, rather than a generic protocol. Considerations include:

• Daily Routines: What daily habits bring them comfort? Morning tea, evening news, or a daily walk? Respecting these routines can reduce distress.
• Communication Preferences: What language did they speak? What are their non-verbal cues? Being sensitive to their communication style and remaining calm is key.
• Cultural and Spiritual Beliefs: Does the person have specific cultural or religious needs related to food, clothing, or spiritual practices?.

Ethical and Practical Considerations Table

Aspect	Substituted Judgment	Best Interest
Basis for Decision	Relies on the individual's values, beliefs, and previously expressed wishes.	Focuses on the objective benefits and harms of a decision for the person's current and future well-being.
Primary Source of Guidance	Advance directives, conversations with the individual, knowledge of their life story and character.	Expert medical opinions, standard of care, quality of life assessments, emotional and physical effects.
Key Challenge	Requires interpreting potentially outdated or unstated wishes in a new context.	Can be subjective and may conflict with the person's premorbid wishes or values.
Used When...	The individual's past wishes are clear and relevant to the current decision.	The person's past wishes are unknown, unclear, or demonstrably no longer applicable.

Supporting the Substitute Decision Maker

The role of an SDM is emotionally and practically demanding. SDMs must remember to care for themselves to avoid burnout.

1. Seek Support Networks: Join support groups for caregivers of people with dementia. Sharing experiences with others facing similar challenges can reduce feelings of isolation.
2. Take Breaks: Respite care is not selfish; it is essential. Schedule regular breaks to recharge and tend to your own needs.
3. Consult Experts: Don't hesitate to seek advice from elder law attorneys, financial planners, or geriatric care managers who specialize in dementia cases.

Making informed and compassionate decisions for someone with dementia is a journey. The core principle must always be to honor the individual at every stage, respecting their past, valuing their present, and ensuring their well-being.

Conclusion

Making decisions as a substitute decision maker for someone with dementia is a complex and multifaceted responsibility. It requires a deep understanding of legal standards, a commitment to honoring the individual's past wishes and current needs, and effective communication with all involved parties. By focusing on person-centered care and seeking support when needed, SDMs can navigate this challenging role with integrity, ensuring the best possible quality of life for their loved one. For additional guidance, authoritative sources like the National Institute on Aging offer excellent resources on advance care planning.

Frequently Asked Questions

What legal authority does a substitute decision maker have?

The legal authority of a substitute decision maker is typically granted through specific legal documents, such as a Durable Power of Attorney for Health Care or Financial Affairs, or by being appointed as a guardian or conservator by a court. The SDM's powers are defined by these documents and state laws.

How do you handle disagreements among family members about a care decision?

When family members disagree, the SDM should first refer to any existing advance directives or the individual's previously stated wishes. If no clear guidance exists, consider holding a family meeting to discuss options, potentially with a neutral mediator. The SDM ultimately must act in the individual's best interest, even if not everyone agrees.

What happens if a dementia patient resists a decision made by the SDM?

Resistance often stems from confusion, fear, or a sense of lost control. Rather than confronting the individual directly, the SDM should validate their feelings and try redirection or de-escalation tactics. Involving healthcare professionals to explain the reasoning, or re-approaching the topic later, can also be effective.

Should an SDM involve a person with dementia in decision-making?

Yes, it is crucial to involve them whenever possible. Respecting a person's abilities, even as they change, promotes their dignity and self-esteem. Offer simple choices and break down tasks to make decision-making manageable. Observing non-verbal cues can also provide insight into their preferences.

How does an SDM manage financial decisions, especially for a person with complex finances?

For complex financial matters, SDMs should seek professional guidance from an elder law attorney or financial advisor specializing in dementia. It is critical to maintain transparent records, prioritize the person's needs, and protect their assets from exploitation or poor judgment.

How do an SDM's duties change as dementia progresses?

As dementia advances, the individual's capacity to participate in decisions decreases, and the SDM's role becomes more active. The focus shifts from respecting direct wishes to prioritizing the person's comfort, emotional well-being, and best interest based on their current state.

How can an SDM prepare for end-of-life decisions?

Preparation begins early by discussing and documenting end-of-life wishes while the individual still has capacity. SDMs should understand the person's stance on life-sustaining treatment, palliative care, and comfort measures. Communicating these wishes clearly with the healthcare team and family is vital.