“Neither Gone nor Here”: Coping with Personality Change and Loss of Identity in Neurologic Disease (FR415)

Abstract

•Describe neuroanatomical localization of at least three personality or behavioral symptoms that occur in selected neurological diseases.•List neurotransmitter involvement in behavioral symptoms and match with potential pharmacotherapies.•Describe three characteristics of bedside nursing assessment that differentiate apathy from depression. Loss of identity is one of the most feared consequences of neurologic disorders. While all illnesses can alter physical abilities and change relationships, neurologic disorders such as Alzheimer’s disease, Parkinson’s disease, and glioblastoma can uniquely alter fundamental personality traits that contribute to identity. Degeneration or destruction of particular areas of the brain can lead to behavioral changes, such as apathy, impulsivity, and perseveration. In addition to confounding symptom management, advance care planning, and complex medical decision making, these changes can cause profound distress by permanently altering relationships with caregivers and care providers. They must be distinguished from common symptoms of anxiety and depression to help clinicians approach treatment and to allow Palliative Care and hospice staff to provide counseling and support to caregivers. An understanding of the neurophysiology of personality and identity changes can help care providers and staff understand and anticipate the uniquely devastating nature of certain neurologic diseases. Three neurologists who practice Palliative Care, a nurse, and a chaplain will lead a case-driven discussion to explore the unique effects of these changes including refusal of care, loss of language ability, inappropriate behavior, and emotional lability. In addition we will explore the challenges these changes present to caregivers particularly surrounding existential distress, loss, and the desire to remain connected to their loved ones.