Family support and intergenerational caregiving: report from the State of the Science in Aging with Developmental Disabilities Conference.

BACKGROUND This article summarizes the proceedings of the Family Support and Intergenerational Caregiving work group that was part of the "State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Living" symposium. OBJECTIVES The aim was to provide a research and policy agenda that would result in a better social, health, and economic well being for adults with intellectual and developmental disabilities and family caregivers. METHODS Key issues addressed were (1) demographic challenges; (2) long-term outcomes, poverty and cultural minority status; (3) interdependent roles of family members; and (4) family support policies and practices. RESULTS The group identified the following major gaps in knowledge that need to be included in a future research agenda: data on the demography of families, including information on cultural minorities and families living in poverty; research on the interdependent roles of various family members in providing support to each other, including siblings, grandparents, and the person with disabilities; and development and assessment of models for providing supports to families and that bridge the aging and disability networks. CONCLUSION The outcomes of this recommended research agenda will result in progressive policies and culturally sensitive supports that will improve the health, social, and economic well-being of adults with I/DD and their families.