Caring for children of parents with frontotemporal degeneration: A report of the AFTD task force on families with children

The Association for Frontotemporal Degeneration (AFTD) organized a 7-person Task Force on Families With Children to explore the concerns of families when a parent of young children or teens is diagnosed with FTD. This report summarizes the findings of the task force and highlights the need for additional attention to this topic. The task force conducted a review of related literature and existing resources and compiled issues identified by spouses/partners, teens, and adult children within an affected family. The project confirmed a significant lack of information and support for parents caring for a spouse with FTD and for their children. Recommendations include developing resources and strategies that promote comprehensive family support, including those that build resiliency in the well parent and the children, and strengthen the changing family unit. Avenues for additional research in this area of need in the FTD community are suggested.