Down syndrome and aging: a leadership and social justice landscape

The growing phenomenon of aging adults with Down syndrome and other intellectual and developmental disabilities and dementia can be traumatic and overwhelming for families and caregivers. The realization is beset with angst and necessitates restructuring policies and programs while exploring the leadership landscape to facilitate a values framework for persons with Down syndrome. This article considers the changing role of the caregiver and the influences of community support networks, social policy, social justice, and quality of life adaptations for aging persons with Down syndrome and dementia. Note: To maintain confidentiality, personal communications noted throughout this article identify the individual using initials rather than surname.