Personal social networks of people with Down syndrome

Abstract

Studies in the neurotypical population have demonstrated that personal social networks can mitigate cognitive decline and the development of Alzheimer disease. To assess whether these benefits can also be extended to people with Down syndrome (DS), we studied whether and how personal networks can be measured in this population. We adapted a personal networks instrument previously created, validated, and implemented for the neurotypical population. We created two versions of the survey: one for participants with DS, ages 25 and older, and another for their study partners, who spent a minimum of 10 h/wk in a caregiver role. Participants with DS gave concordant data to those of study partners. Their personal networks included a median network size of 7.50, density 0.80, constraint 46.00, and effective size 3.07. Personal networks were composed of 50% kin, 80% who live within 15 miles, and 80% who eat a healthy diet. In this proof‐of‐principle study, we demonstrated that the personal networks of people with DS can be quantitatively analyzed, with no statistical difference between self‐report and parent‐proxy report. Future research efforts can now evaluate interventions to enhance personal networks for preventing Alzheimer disease in this population.

Sustainability of personal social networks of people with Down syndrome

“…Another explanation could be that insufficient time had transpired from the end of pandemic restrictions. Even after the state of Previous research demonstrated that self-reported assessments of social networks matched proxy-reported assessments (Skotko et al, 2023). At this follow-up time point, this was the case for mostbut not all-measures.…”

“…Our survey for both the study partners and people with DS was adapted from the PERSNET personal networks instrument (Dhand et al, 2016(Dhand et al, , 2018Prust et al, 2021) and is previously described (Skotko et al, 2023). In short, the survey elicited the names of people with whom the person with DS "discussed important stuff with," "hung out with," and sought help from when they felt sick (please see Supplementary Materials of Skotko et al, 2023, for a copy of the survey). Names were then unduplicated.…”

“…Personal networks are the persons around an individual who provide support, circulate information, and influence health behaviors (Dhand et al, 2016). In our previous research, we demonstrated that the personal networks of people with DS could be quantitatively analyzed, with no difference between selfreport and parent-proxy report (Skotko et al, 2023).…”

Experiential diversity training and science learning for college students alongside peers with intellectual and developmental disabilities

“…Improving social networks for people with IDDs has far reaching benefits. For instance, expanding social personal networks of people with Down syndrome can mitigate cognitive decline and the development of Alzheimer’s disease [55].…”

“…Improving social networks for people with IDDs has far reaching benefits. For instance, expanding social personal networks of people with Down syndrome can mitigate cognitive decline and the development of Alzheimer's disease [55]. Many IDDs-transition specialists suggest that coordination with either postsecondary education institutions or local agencies that provide employment support can provide bridges to a more self-determined and secure future [52,53,56].…”