Can a dementia patient make their own decisions? The Role of Capacity
The ability of a person with dementia to make their own decisions is a nuanced topic that hinges on the concept of decisional capacity. Contrary to common misconceptions, a dementia diagnosis does not automatically remove a person's right to make choices. Instead, capacity is a functional assessment tied to a specific decision at a specific time. This approach prioritizes patient autonomy while providing necessary safeguards.
How Decisional Capacity Is Assessed
For a person to be considered to have decisional capacity, they must demonstrate four key abilities related to the specific decision in question:
- Understanding: Can the person comprehend the information relevant to the decision? This includes understanding the nature of the situation, the available options, and the potential consequences of each option.
- Appreciation: Can the person appreciate how this information applies to their own situation? This involves having insight into their condition and understanding how the decision's outcome will affect them personally.
- Reasoning: Can the person use logical thought to compare the options and weigh the risks and benefits associated with each choice?
- Expressing a Choice: Can the person clearly and consistently communicate their decision? This can be verbal or non-verbal, such as squeezing a hand or blinking an eye.
Capacity is fluid and can fluctuate with a person's health, medication, or time of day. A person may have the capacity to make small daily choices, like what to wear, but lack the capacity for more complex decisions, such as managing finances or consenting to a major medical procedure.
Tools for Preserving Autonomy
For individuals with dementia, proactive planning is crucial to ensure their wishes are honored even as their decision-making abilities change. Legal tools and supportive frameworks are available to help maintain autonomy for as long as possible.
Advance Directives
These are legal documents made while the person still has full legal capacity. They specify medical treatment preferences for a time when the individual can no longer make or communicate those decisions.
- Health Care Power of Attorney (or Proxy): Appoints a trusted person to make medical decisions on the patient's behalf when they lack capacity.
- Living Will: States the person's wishes regarding end-of-life care, such as the use of life-sustaining treatment.
- Dementia-Specific Advance Directives: Some states and organizations offer specialized directives that allow individuals to plan for specific scenarios related to living with dementia, such as care settings and behavioral preferences.
Supported Decision-Making (SDM)
SDM is a legal alternative to guardianship that allows a person with a disability to retain their decision-making rights with the assistance of a trusted network of supporters. Supporters can help gather information and communicate decisions but do not have the legal authority to make decisions for the person. This model is person-centered and empowers individuals with mild to moderate cognitive impairment to remain independent for longer.
When Legal Competency Is an Issue: Guardianship vs. Power of Attorney
If a person with dementia loses legal capacity and has not executed durable powers of attorney, a court may need to appoint a legal guardian or conservator to make decisions on their behalf. This can be a more restrictive process compared to advance planning.
Comparison Table: Power of Attorney vs. Guardianship
| Feature | Durable Power of Attorney | Guardianship/Conservatorship |
|---|---|---|
| Initiation | Appointed by the individual (Principal) while they still have legal capacity. | Appointed by a court after the individual is deemed incapacitated. |
| Authority | The agent's authority is granted by the principal and is defined in the legal document. | The guardian's authority is granted by the court and is subject to court oversight. |
| Effectiveness | Remains valid even if the principal later becomes incapacitated. | Becomes necessary if no durable POA is in place or if the existing POA is contested. |
| Cost | Generally less expensive and less complex to set up. | More expensive, lengthy, and complex due to court involvement. |
| Control | Maximizes the individual's control by allowing them to choose their agent and define their wishes in advance. | Removes decision-making authority from the individual and places it with the court-appointed guardian. |
The Ethical Balance
Ethical considerations are paramount when dealing with decision-making in dementia. The principle of respecting a patient's autonomy must be balanced with the duty to do no harm (nonmaleficence). Caregivers and medical professionals must navigate this delicate balance, ensuring the patient's dignity and previously expressed values are respected. Regular reassessment of capacity is essential, as is prioritizing the least restrictive intervention necessary. Discussions about these difficult topics should occur as early as possible after a diagnosis to capture the individual's wishes while they are still able to participate meaningfully.
Conclusion
In summary, a person with dementia can absolutely make their own decisions, and their right to do so should be presumed and respected for as long as possible. The level of this ability is not fixed but rather depends on a specific assessment of their decisional capacity for each particular choice. By planning ahead with advance directives and exploring supportive decision-making models, individuals with dementia can maintain a greater degree of control and autonomy. When legal capacity is lost, mechanisms like durable powers of attorney and guardianship provide structured oversight, but early planning remains the most effective way to ensure a patient's wishes are respected.. For legal planning assistance, consulting an elder law attorney is advisable.
