The aim of this study was to examine the mediating effect of formal and informal social support on the relationship of caregiver burden and quality of life (QOL), using a sample of 320 parents (aged 50 or older) of adult children with autism spectrum disorder (ASD). Multiple linear regression and mediation analyses indicated that caregiver burden had a negative impact on QOL and that informal social support partially mediated the relationship between caregiver burden and parents' QOL. Formal social support did not mediate the relationship between caregiver burden and QOL. The findings underscored the need to support aging parents of adult children with ASD through enhancing their informal social support networks.

This article offers an examination of aging processes of lifelong caregivers and the possibilities for social exclusion place experienced by parents of adult children with autism spectrum disorder (ASD). This study of parental caregivers ( n = 51) sheds light on how enduring caregiving roles can lead to social exclusion in three ways: misunderstanding of ASD and stigma, the complexity of the caregiving roles, and impact on daily routines including challenges with long-term planning for both the adult children and the parental caregivers. Implications for practice to address social exclusion include education and building greater communication ties among family member for family members and advocacy for more and higher quality services including respite care. This article concludes with discussion of the impact of this aging, yet caregiving population and the need for knowledge about aging processes and anticipating aging for these caregivers.

IntroductionA specially commissioned working group produced a report on caregiving, intellectual and developmental disabilities (IDDs), and dementia for the National Institutes of Health–located National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers.MethodsExperts in caregiving, dementia, and IDDs examined the current state of research, policy, and practice related to caregiving and supports; identified the similarities and dissimilarities between IDD-related care and services and the general population affected by dementia; and considered how these findings might contribute to the conversation on developing a dementia care research and services development agenda.ResultsFive major areas related to programs and caregiving were assessed: (1) challenges of dementia; (2) family caregiving interventions; (3) supportive care settings; (4) effects of diversity; and (5) bridging service networks of aging and disability.DiscussionRecommendations included increasing supports for caregivers of adults with IDDs and dementia; increasing research on community living settings and including caregivers of persons with IDDs in dementia research; acknowledging cultural values and practice diversity in caregiving; increasing screening for dementia and raising awareness; and leveraging integration of aging and disability networks.

Although the internal consistency of the scales ranged from moderate to strong, the FQOLS-2006 had only a moderate degree of construct and criterion validity when used with a sample consisting predominantly of minorities from socioeconomically disadvantaged backgrounds.

Increased attention should be focused on supporting the current and future needs of both aging caregivers and their adult children with ASD. Future research on the dynamics of social support, health, and burden is also urgently needed to address the growing number of aging caregivers of adults diagnosed with ASD.