Family Caregiving of Aging Adults With Down Syndrome

Abstract

Although persons with Down syndrome now live to approximately 60 years, the implications of increased longevity on family caregiving have received inadequate attention. Even compared with adults with other types of intellectual disabilities, by their late 40s and 50s adults with Down syndrome often show multiple health problems, cognitive-adaptive declines, and changes in daily work and activities. If alive, their parents are more often elderly, as mothers give birth to newborns with Down syndrome at a median age of 32 years (with high percentages age 40 and older). In addition, higher percentages of adults with (vs. without) Down syndrome live in their family homes and greater percentages may ultimately reside with siblings. Compared with caring for other adults with intellectual disabilities, aging adults with Down syndrome may present earlier-and possibly more severe and more health-relatedcaregiving challenges to their parents and siblings. As a field and as a society, the authors note that we need to promote revisions of family support policies and interventions; recognize the inter-relations of aging-related changes and their effects; and anticipate how aging-related changes in the brother-sister with Down syndrome and the parent(s) might affect sibling caregivers.

Comparing differences in support needs as perceived by parents of adult offspring with down syndrome, autism spectrum disorder and cerebral palsy

“…As individuals with intellectual disabilities (ID) often qualify for SSI (Reschly, Myers, & Hartel, 2002), this finding could be explained by individual characteristics of adults with DS (e.g., a great likelihood of having ID, Hodapp, Burke, Finley, & Urbano, 2016). As individuals with intellectual disabilities (ID) often qualify for SSI (Reschly, Myers, & Hartel, 2002), this finding could be explained by individual characteristics of adults with DS (e.g., a great likelihood of having ID, Hodapp, Burke, Finley, & Urbano, 2016).…”

“…In addition, regarding formal services, the present authors found that parents of adults with DS were more likely to have their | 203 offspring receive SSI or SSDI. As individuals with intellectual disabilities (ID) often qualify for SSI (Reschly, Myers, & Hartel, 2002), this finding could be explained by individual characteristics of adults with DS (e.g., a great likelihood of having ID, Hodapp, Burke, Finley, & Urbano, 2016). This could also be explained by families of adults with DS (versus other types of IDD) being more informed and socially connected (Dykens et al, 2000) enabling them to better navigate the SSI/SSDI service delivery systems.…”

“…In one of the few studies to mention the potential impact of the type of disability, Heller, Miller, Hsieh, and Sterns (2000) conducted an intervention study of a person-centred planning intervention; in their study, they lowered the minimum age of a participating family when the offspring had DS as individuals with DS show agerelated declines earlier (Hodapp et al, 2016). Regarding research, it seems that the Down syndrome advantage persists, in some respects, into adulthood.…”

“…For example, although there were significant differences in future planning barriers between DS group and ASD or CP group, there is a dearth of research exploring how future planning differs with respect to the type of disability. In one of the few studies to mention the potential impact of the type of disability, Heller, Miller, Hsieh, and Sterns (2000) conducted an intervention study of a person-centred planning intervention; in their study, they lowered the minimum age of a participating family when the offspring had DS as individuals with DS show agerelated declines earlier (Hodapp et al, 2016). Thus, the findings from this study, the DS advantage and the early ageing of individuals with DS justify the need to more closely examine families of individuals with DS into adulthood.…”

Getting by with a little help from my friends: siblings report on the amount of informal support received by adults with disabilities

“…Specifically, informal support levels were lowest in housing, with over 60% having very little support in this area. To some extent, this makes sense, in that most adults with IDDs continue to reside in their parents' homes well into adulthood (Fujiura 2014;Williamson & Perkins 2014;Hodapp et al 2016). It is also often the case that housing plans need to be modified as the adults' life circumstances (and the circumstances of their parents and siblings) change over time (Bigby 1996(Bigby , 2000.…”