Placement, relocation and end of life issues in aging adults with and without Down's syndrome: a retrospective study.
Adults with Down syndrome move more often and enter nursing homes sooner than other adults with intellectual disabilities—plan early.
01Research in Context
What this study did
The team looked back at records for adults with Down syndrome and adults with other intellectual disabilities. They counted how many times each person moved homes and when they entered a nursing home for end-of-life care.
The goal was to see if the Down syndrome group faced more moves and earlier placement.
What they found
Adults with Down syndrome moved more often and entered nursing homes sooner than adults with other intellectual disabilities.
The gap shows up right at the end of life, not just in earlier years.
How this fits with other research
Storch et al. (2012) pull the 2010 study into a big picture review. They say falls, pain, and hospice barriers pile up as adults with IDD age. The extra moves seen here are one piece of that larger load.
Schupf et al. (1997) also compared Down syndrome to other ID. They found women with Down syndrome hit menopause earlier. Both papers show the same group hitting life milestones sooner, whether it is menopause or nursing-home entry.
Chou et al. (2009) asked caregivers about future plans. They found older caregivers feel lost about what comes next. The 2010 numbers prove those worries are real: moves and nursing-home entry happen, and they happen more for the Down syndrome subgroup.
Why it matters
If you serve adults with Down syndrome, expect earlier and more frequent relocations. Start transition planning before a crisis. Map local nursing-home options early, secure medical records, and train families on what signs trigger a move. A clear roadmap lowers stress for everyone when the time comes.
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02At a glance
03Original abstract
BACKGROUND: Aging adults with Down's syndrome (DS) experience more relocations and other life events than adults with intellectual disabilities aged 50 and older without DS. Age-related functional decline and the higher incidence of dementia were implicated as the contributing factors that led to relocation and nursing home placement. METHOD: A retrospective study of adults with intellectual disabilities who were born prior to the year 1946 was conducted to analyse the number of relocations experienced over a 5- and 10-year period. The cohort consisted of 140 individuals (61 with DS between ages 50-71 years, and 79 without DS between ages 57-89 years) who had been referred to a diagnostic and research clinic. RESULTS: Analyses revealed the number of relocations over a 5- and 10-year period were significantly greater in the DS group. Placement in a nursing home for end of life care was significantly higher in the DS group whereas the majority (90%) in the non-DS group remained in a group home setting. Mortality was significantly earlier in the DS group with the mean age at death to be 61.4 years compared with 73.2 years in the non-DS group. CONCLUSIONS: The present results suggest that aging adults with DS encounter more relocations, and are more likely to have their final placement for end of life care in a nursing home. In contrast, the adults without DS were subjected to less relocation and remained in the same group home setting.
Journal of intellectual disability research : JIDR, 2010 · doi:10.1111/j.1365-2788.2010.01279.x