Educational Webinars

Research and Support for Young Caregivers and Families Affected by ALS


Presenter: Melinda Kavanaugh, PhD, MSW, LCSW, University of Wisconsin - Milwaukee
Despite the growing body of research on caregivers in ALS, the most vulnerable and isolated population of caregivers, children and youth caregivers, or “young caregivers,” remain hidden. Young caregivers, between the ages of 5-19, participate in all aspects of daily care, from feeding and bathing, to toileting and transferring, all in relative isolation. A growing body of international young caregiver research highlights the emotional and social impacts, underscoring gaps in evidence-based programming across countries. A survey of U.S. families in ALS found almost one third of families have a child or youth under age 18 providing care. Recent data suggests sleep disruption and minimal caregiving training is common in young caregivers, increasing anxiety and setting up the potential for long-term health effects in young caregivers. Dr. Kavanaugh will provide a discussion of current research on children and youth caregivers in ALS/MND, including perspectives of the person with ALS, how research has been used to inform evidence-based interventions and supports, and a roadmap for future inclusion of children and youth in caregiving research, programming, and supports.