The Importance of Starting Early
For individuals with dementia, it is critical to initiate advance care planning (ACP) as early as possible, ideally shortly after a diagnosis. Dementia is a progressive disease that steadily erodes cognitive function, making it difficult for a person to make decisions as the condition advances. Planning while the patient still has full capacity ensures that their preferences and values guide all future medical decisions. Involving the patient in these discussions gives them a sense of control over their future and ensures their wishes are accurately captured. Conversely, postponing these conversations can lead to families guessing at their loved one's desires during a crisis, often leading to conflict and moral distress.
Key components of an advance care plan for dementia
An advance care plan is not a single document but a comprehensive process involving multiple conversations and legal paperwork. For dementia patients, the plan must be flexible and address the unique, progressive nature of the disease. Key elements include:
- Health Care Proxy (Durable Power of Attorney for Healthcare): This legal document names a trusted individual, known as an agent or proxy, to make medical decisions on the patient's behalf when they can no longer do so. The proxy should be someone who understands the patient's values and is comfortable advocating for their wishes, even when faced with pressure from other family members.
- Living Will: A living will outlines specific medical treatments and interventions the patient wants or does not want, especially concerning life-sustaining measures. For dementia patients, this might include preferences for artificial hydration, nutrition (feeding tubes), mechanical ventilation, and CPR. A dementia-specific advance directive may address these preferences across the different stages of cognitive decline.
- Values Worksheet or Narrative: Beyond legal forms, documenting the patient's personal values and beliefs is crucial. This can include what makes their life meaningful, what they consider a good quality of life, and their religious or spiritual preferences. This values history helps a healthcare proxy make decisions in situations not explicitly covered by the living will.
- Finances and Property (Durable Power of Attorney for Finances): While separate from healthcare, a financial power of attorney is a critical part of a complete plan, designating a trusted person to handle finances, pay bills, and manage property.
Practical steps for creating the plan
To create an effective ACP, families should engage in structured conversations involving the patient, family members, and the healthcare team. The process should be a journey of ongoing dialogue, not a single, uncomfortable discussion. The Alzheimer's Association recommends several practical steps to get started:
- Gather Existing Documents: Collect any wills, powers of attorney, or other directives already in place. Review them with the patient to see if updates are needed.
- Use Conversation Starters: Ease into the topic with indirect prompts, such as discussing a movie plot, a news story, or using guided resources like those from The Conversation Project.
- Appoint a Proxy and Back-Up: Help the patient choose a primary healthcare proxy and a successor in case the first is unable to serve. Ensure the proxy is aware of their role and comfortable carrying out the patient's wishes.
- Communicate and Document: Clearly state the patient's decisions in the appropriate legal documents and share copies with the proxy, doctors, and other trusted family members. Some states offer registries to store these documents for easy access.
- Review and Update Regularly: As dementia progresses and new situations arise, the care plan may need adjustments. Regular reviews, perhaps annually, are essential to ensure the documents reflect the patient's evolving condition and preferences.
Comparison of Planning Documents: Living Will vs. Healthcare Proxy
It is common to confuse a living will with a healthcare proxy, but they serve distinct purposes. Having both provides the most comprehensive protection for a dementia patient.
| Feature | Living Will | Health Care Proxy (Durable Power of Attorney for Healthcare) |
|---|---|---|
| Purpose | Outlines specific medical treatments the patient wants or does not want in end-of-life situations. | Appoints a trusted person to make broad medical decisions on the patient's behalf when they cannot. |
| Scope | Limited to specific medical interventions and conditions, such as resuscitation and feeding tubes. | Broad authority to make decisions for any unforeseen medical situation, including interpreting wishes in new contexts. |
| Decision-Making | Provides direct instructions to medical professionals, requiring little interpretation. | Grants decision-making power to an agent who uses their judgment, guided by the patient's values. |
| Key Benefit | Reduces uncertainty about specific, foreseen end-of-life decisions. | Offers flexibility to handle unexpected medical problems or changing patient conditions. |
| Best Practice | Used in combination with a healthcare proxy for complete coverage. | Crucial for adapting the plan as dementia symptoms progress and new issues arise. |
Conclusion
An advance care plan for dementia patients is an empowering and essential process that safeguards patient dignity and provides peace of mind for both the individual and their family. By initiating these conversations early, documenting preferences through a combination of legal directives and personal values statements, and regularly reviewing the plan, families can navigate the complexities of dementia with greater clarity and confidence. The core of effective ACP lies in open communication, ensuring that care remains centered on the patient's values and wishes throughout their journey with the disease. Proactive planning transforms a potentially traumatic period into a path guided by compassion and foresight.
The Conversation Project offers valuable resources and guides to help families start these important discussions.
