Family caregivers in later life: A longitudinal study of well-being and mental health in families of adults with autism and developmental disabilities

Project Summary/Abstract This project aims to improve our ability to support the resilience of family caregivers of adults with autism and developmental disorders as the caregivers move into later life. Based on a 30 year longitudinal study that prospectively followed families from when their children were referred for possible autism or developmental delays, we will use a social convoy model to investigate trajectories of social connectedness and isolation over the next five years as they affect caregivers’ mental health and well-being. This model describes changes in social connectedness over time that may increase vulnerability or reduce the effects of caregiver burden. We examine additional interacting factors specifically related to family caregiver well-being and mental health in families with adult children with developmental disabilities. We will use questionnaires, app-based diaries, face to face interviews and exploratory measures of biological and cognitive aging over the course of 5 years during which our sample is in their 60’s, linked to rich behavioral data from the past 20-30 years. Our objective is to identify life milestones, such as retirement and the adult child’s moving out, as well as caregiver coping strategies that allow us to support well-being and mental health in family caregivers as they age.