Growing Old Together: Similarities/Differences in Families of Adults with and without Down Syndrome

As persons with intellectual disabilities live increasingly long lives, issues arise concerning aging-related health problems, where these individuals will live, and who will be responsible for their care. Such issues become particularly salient when adults have Down syndrome (DS). By their late 40s and 50s, adults with DS often show multiple health problems and cognitive adaptive declines, and there are greater percentages of older parents who (if alive) are more often elderly. After examining aging in offspring with intellectual disabilities more generally, we examine issues of health, parental demographics, and family caregiving in families of adults with DS. Reviewing open-ended comments from over 600 sibling respondents of adults with DS versus with (non-DS) intellectual disabilities, we note similarities and differences in cross-sectional analyses across adulthood. In both the DS and (non-DS) intellectual disability groups, by the time that the brother/sister with disabilities was in their 50s, respondents reported increased sibling caregiving. In the DS group, respondents also reported that their brothers/sisters exhibited increased health problems during the 40s; these respondents themselves also showed higher rates of pessimistic comments during the 50s. When adults have intellectual disabilities, all families need to engage in future planning; in families of adults with DS, however, such planning may need to begin earlier (when adults are in their late 30s or early 40s), be more health-related, and feature more sibling involvement.