Advance Directives provide legal documentation of a person’s wishes regarding medical treatment and care, allowing people and their families to decide in advance how care and treatment should be provided at end-of-life when a person is no longer capable of making independent decisions. For people living with advanced stages of Alzheimer’s, Advance Directives give specific, life-altering instructions to ensure a person’s will is being met. Yet Advance Directives that anticipate for the eventualities of Alzheimer’s Disease often fail to specifically prepare for the care and treatment decisions prompted by agitation and other behavioral aspects of the disease. This is a major oversight.

“Agitation and End-of-Life: Towards an Advance Directive that Prepare for Agitation and Behavioral Symptoms in Alzheimer’s Disease” proposes a framework for how Advance Directives can prepare for the unique decisions that arise as a person experiences agitation and other behavioral symptoms of Alzheimer’s.

The framework proposed in this project draws from the recent development of Psychiatric Advance Directives led in part by the American Psychiatric Association, which have pioneered the use of Advance Directives for anticipated behavioral challenges. Specifically, Psychiatric Advance Directives allow individuals to specify in advance which treatments may be administered in response to acute episodes of psychiatric illness at a time when someone is unable or unwilling to provide consent. Our project contends that the mechanisms underlying Psychiatric Advance Directives be modeled but modified to help people, families, and providers prepare for agitation and the behavioral aspects of Alzheimer’s.

Specifically, we propose a four-part framework for Advance Directives to prepare for agitation and other behavioral aspects of Alzheimer’s:

1. 1. Psychiatric medications. What treatments may – or may not – be used to manage agitation or other behavioral disturbances?

2. 2. Agitation prevention and de-escalation. What strategies and techniques can caregivers employ to mollify agitated behaviors? How should caregivers respond to episodes of agitation?

3. 3. Lifestyle preferences and values. What values – religious or otherwise – should guide care and treatment?

4. 4. Information sharing and access. When and how should caregivers, medical professionals, and family members be notified – or share information about – behavioral disturbances?

It is well established in the scientific and medical literature that agitation and behavioral aspects of Alzheimer’s can cause severe difficulty for families as the disease progresses. Advance Directives that prepare for agitation can help to create a plan and ease the challenges prompted by agitation and other behavioral aspects of Alzheimer’s.