One of the first things service providers do in serving individuals diagnosed with dementia is to determine who is in charge of the decision making processes involving treatment, disclosure of information, and financing care. However, clarifying who has legal authority to provide (or withhold) consent is not the end of the story. Regardless of who has legal authority, the service provider must develop a trusting relationship with the individual receiving services and gain the individual’s cooperation to effectively implement plans agreed-upon with the legal representative. When this does not occur, frequently the individual receiving services will behave in a manner that can make realizing even the most carefully thought-out plans difficult to achieve.
• Establish who legally has decision-making responsibility.
It is important that care providers recognize the difference between a concerned family member (who cannot legally remove the individual’s right to make decisions for him- or herself) and a family member or other person for whom guardianship has been established through a court process.
Guardianship is intended to protect the individual receiving services in specific decision-making processes. Even when the court has granted guardianship, it may be limited to specific areas.
The service provider must determine if guardianship was established through a court process and what the terms of the guardianship are. A guardianship may be limited to the estate (finances, assets) of the individual, it may be limited to a decision specific to the person (such as course of treatment), or it can be both. It is imperative that the service provider review the guardianship decree in order to understand the situation specific to the person receiving services.
• Gain the trust of the individual.
Regardless of whether a guardian has been appointed, it is essential for the service provider to engage the individual with dementia. It is human nature for individuals to resist decisions they feel are being forced upon them. Sometimes the resistance is not specific to the decision as much as to the process by which the decision is made. The service provider must work to develop a trusting relationship in which the individual feels that he or she is being treated with respect and dignity on a consistent basis. This can be more difficult when the individual has dementia and may have difficulty remembering conversations or even the individuals involved in their care and treatment. Despite memory impairments, the brain develops associations that can impact how the person perceives the service providers they encounter even when they do not clearly remember or understand their specific roles. An individual who associates the service provider with feelings of care and comfort is more likely to cooperate than if the association results in feelings of being dominated and controlled. It is important that the service provider consistently interact both verbally and non-verbally in a manner that is patient, caring, and reassuring to the person to help develop positive associations and minimize the individual’s suspicion about the motivations of the service provider.
• Engage the person in developing individualized plan.
The best plans can be sabotaged by the behavior of an individual who feels that he or she is not engaged and involved in the process. This can be especially challenging when the individual has memory impairment. The service provider who can learn what is important to the individual and what the individual wants in terms of assistance is more likely to be successful.
This is less likely to occur from a dialogue than from consistent and detailed observation of the person’s patterns of behavior. The service provider must observe and identify what engages the individual. What do they enjoy when they are relaxed and at peace? What hobbies or habits has the individual enjoyed in the past? The service provider then has a menu of options that may be comforting and reassuring to the individual. This is discussed further in Building Healthy Relationships, Chapter 1 of the Mandt System Instruction.
It is important to focus on the behavior of the individual even more than verbalizations. The individual may provide a verbal agreement but then behave in a manner that prevents implementation of that agreement. When there is a discrepancy between the verbal communication and the behavior of the individual, the service provider must recognize the resistance and engage the individual further. One method of gaining the cooperation of the individual is to explain the rationale for the recommendation and offer the individual choices rather than mandating a decision.
The service provider may find it helpful to document discussions and agreements either in writing or by video recording the discussion, allowing the individual to actually see and hear his or her involvement in the decision-making process. Ensuring that the person knows he or she has been involved in directing the planning process may be even more important than the decisions made.
• Reconcile with family if needed.
There are situations in which family members may need assistance in understanding the limitations of their role, even when they have established guardianship of the person. The service provider can help family members understand that even though they have legal authority, engaging their loved one and gaining their cooperation is necessary to the successful implementation of the service plan. When there are differences in opinion between the family and the individual concerning plans or goals, the role of the service provider is often to be the mediator, providing reality orientation and assisting the family in patiently focusing on what is realistic at that time. It is helpful to reassure the family that although it may take more time to reach the ultimate goal, the process of working together is more likely to result in positive long-term results and continued trust between everyone involved.
Aaryce Hayes – Mandt Faculty & COO