Supporting Youth With A Parent Who Is Living Younger-Onset Alzheimer's: A Crucial Component In Integrated Care.

Abstract

Supporting Youth With A Parent Who Is Living Younger-Onset Alzheimer's: A Crucial Component In Integrated Care Lorenzo's House, a nonprofit in Chicago, focuses on a transformative approach that supports children and young adults who are living with a parent with younger-onset Alzheimer's. Youth are often affected by a parent's diagnosis at a neurobiologically vulnerable time in their lives. Youth frequently don't know how to explain their experience as a care partner with their peers, leaving them isolated and managing the ongoing change by themselves. By creating spaces specifically catered towards these young care partners, we are radically shifting the journey of what younger-onset Alzheimer's looks like for children and young adults. We focus on the relationship between the parent diagnosed and their children, what children need as care partners, and what issues and struggles they face at a variety of ages in this journey. Our three youth programs focus on innovation to support youth living with a parent with younger-onset Alzheimer's: Lorenzo's Camp, a camp designed by youth care partners, therapists, medical professionals - intended to share common stories and build an alliance; the Light Club, a virtual youth care partner group injected with team building and relationship development; and lastly youth-led advocacy work. Our model shifts the narrative for how youth experience being a member of a family that is navigating a younger-onset Alzheimer's diagnosis.