Understanding Capacity and Person-Centered Care
Participation in decision-making is a right that extends to persons with dementia, though the manner of involvement evolves as the disease progresses. A person-centered approach to care is essential, focusing on the individual’s unique needs, preferences, and emotions rather than a one-size-fits-all model based solely on diagnosis. Recognizing that an individual with dementia still retains a sense of self and personhood is the first step toward creating an environment that respects their dignity and maximizes their autonomy. Capacity to make decisions is not an all-or-nothing concept; it can fluctuate and is task-specific, meaning a person might be able to make a choice about their daily activities but not a complex financial decision. This nuanced understanding forms the foundation for meaningful engagement.
The Importance of Advance Care Planning
Early-stage diagnosis is a crucial time for advance care planning. This involves the person with dementia expressing their values, preferences, and wishes for future care while they are still capable of doing so. Documents like an advance directive or a durable power of attorney for healthcare can be established. These legal tools ensure that if a person becomes unable to make a decision, their designated surrogate or family members can make choices consistent with the person’s stated wishes, values, and beliefs. Involving a trusted family member or friend from the beginning can provide crucial support and ensure their voice is honored. Early conversations are critical for documenting preferences regarding living arrangements, financial matters, and even end-of-life care, providing reassurance for both the individual and their future decision-makers.
Practical Strategies for Supported Decision-Making
Supported decision-making (SDM) is a powerful model that empowers individuals with cognitive impairments to make their own choices with assistance. It contrasts with the more restrictive guardianship model, emphasizing support over substitution. For persons with dementia, SDM can be implemented through several practical strategies:
- Simplify Choices: Instead of overwhelming options, offer a limited, manageable number of choices. For example, “Would you like to wear the blue or the red sweater today?” gives a sense of control without creating frustration.
- Use Visual and Written Aids: Visual cues, schedules with pictures, or simple written notes can help individuals understand and retain information. For example, a visual schedule of daily activities can provide a sense of security and predictability.
- Maintain Routine and Consistency: A consistent daily routine reduces anxiety and confusion by creating a predictable rhythm. Familiar activities and cues, like setting the table before dinner, can reinforce a sense of order.
- Adaptive Communication: Use short, simple sentences and speak slowly and clearly. Allow plenty of time for the person to process and respond. Observing non-verbal cues like facial expressions and body language is key to understanding their emotional state and preferences.
Adapting Participation Through Different Stages
The level of participation and the methods used will change as dementia progresses. Caregivers must be flexible and continually adapt their strategies to respect the person's evolving abilities.
Early Stage
In the early stages, the person can still participate fully in most decisions. Caregivers should act as partners, supporting the person in organizing thoughts, keeping track of appointments, and making complex plans. This is the ideal time to discuss future wishes and preferences for care, living situations, and finances, and to complete legal documents like advance directives.
Middle Stage
As the disease advances, the focus shifts to supported decision-making for daily care. Routine becomes more important, and simple, concrete choices are more effective. Caregivers should prioritize tasks the person can still perform and help with the more complex steps. Involving the person in household tasks they can manage, like folding laundry or watering plants, maintains a sense of purpose.
Late Stage
In the late stages, verbal communication may diminish, but the person's emotions and feelings often remain intact. Participation now involves reading non-verbal cues and interpreting their comfort levels. Caregivers focus on providing comfort, maintaining dignity, and fulfilling past preferences based on prior conversations or written wishes. Communication might shift to touch, music, or a calm, reassuring presence.
Making Decisions When Capacity is Lacking
When a person completely loses the capacity to make a specific decision, legal and ethical frameworks guide how a substitute decision-maker (like a designated attorney or family member) must proceed. The core principle is to act in the person's "best interests," which involves considering their known values, wishes, and feelings. It is important to note that a caregiver's or family member's own interests should not influence the decision. Complex decisions, such as a move to a care home or major medical treatment, may require a more formal process involving multiple stakeholders and ethical committees to ensure all angles are considered.
Here is a comparison of different approaches to decision-making for a person with dementia:
| Aspect | Supported Decision-Making (SDM) | Substitute Decision-Making (Best Interests) |
|---|---|---|
| Core Principle | Maximizes the autonomy and independence of the individual by providing support. | Assumes capacity is lost and a designated person or body makes decisions. |
| Who Decides | The person with dementia, with support. | A surrogate decision-maker, guardian, or legal authority. |
| Role of Supporter | Provides information, clarifies options, assists communication, and helps implement the decision. | Acts in the person's best interests, based on their known values and wishes. |
| Capacity Requirement | Assumes the person retains some level of capacity for the decision. | Applied when a person is legally assessed as lacking capacity for a specific decision. |
| When to Use | As long as the person with dementia can express preferences, even non-verbally. | When the person's capacity is deemed non-existent for the specific decision. |
Balancing Autonomy and Safety
Caring for a person with dementia is an ethically complex task that requires balancing their autonomy with their safety. A key aspect of person-centered care is constantly evaluating this balance. For example, a person may wish to continue driving, but safety concerns for themselves and others may override this wish. In such cases, a sensitive approach is required, including professional assessments and involving family members in the conversation, always with documentation. Similarly, a person with dementia might make an unwise decision about finances, but a lack of capacity shouldn't be presumed. Careful observation and professional consultation can help determine when protective measures are necessary, such as engaging a financial power of attorney. The goal is to provide a safe and supportive environment while empowering the person to be as independent as possible.
For more information on legal aspects of care, the Alzheimer's Association offers extensive resources on navigating financial and legal planning: https://www.alz.org/help-support/legal-financial
Conclusion: The Path Forward
Engaging a person with dementia in their own care decisions is not only possible but is a fundamental aspect of ethical, person-centered care. From early conversations about advance directives to interpreting non-verbal cues in later stages, their involvement honors their dignity and promotes a higher quality of life. For caregivers and families, this means shifting perspectives from 'deciding for' to 'deciding with' or 'advocating for' the individual. By using communication strategies tailored to their abilities, maintaining familiar routines, and leveraging legal protections, we can ensure that people living with dementia retain a sense of control and self-determination throughout their journey.
