Family Support for (Increasingly) Older Adults with Down Syndrome: Factors Affecting Siblings’ Involvement

Abstract

Background Life expectancy for people with Down syndrome is increasing, but older adults with Down syndrome are at greater risk of developing certain pathologies associated with ageing. When ageing parents can no longer look after their child with Down syndrome, their other children are often expected to shoulder this responsibility. Method We asked 120 adult siblings of a person with Down syndrome to complete a questionnaire on their current and anticipated relationships. Results Most respondents considered these relationships to be positive, but they expressed concerns about the effects of ageing and about having to organise their sibling with Down syndrome’s future life. We investigated the impact of factors relating to the respondents and to their sibling with Down syndrome (age, gender, social inclusion, protection regime) on these general tendencies. Conclusion Siblings need to be given support, for example, via discussion groups, to facilitate the transition to becoming caregivers.

Adaptation at the Family Level in Families of Individuals With Down Syndrome: A Scoping Review

“…However, improvements in health care for individuals with DS, especially surgical treatment of congenital heart defects, have resulted in impressive changes in life expectancy and quality of life for individuals with DS ( Antonarakis et al, 2021 ; Carr & Collins, 2018 ; Hughes-McCormack et al, 2020 ). In some countries, life expectancy for individuals with DS is approaching that of the general population ( Lemoine & Schneider, 2022 ).…”