Factors predicting mortality in midlife adults with and without Down syndrome living with family.
Midlife adults with Down syndrome living at home die more often than same-age adults with other ID — watch cardiac and respiratory red flags.
01Research in Context
What this study did
Stancliffe et al. (2007) tracked midlife adults with Down syndrome who still lived with family. They wanted to see who died and why. The team compared death rates to adults with other intellectual disabilities living at home.
What they found
Adults with Down syndrome died more often in midlife than their peers with other ID. Heart and lung problems caused most deaths. Living at home did not protect them from these risks.
How this fits with other research
Tenenbaum et al. (2012) later showed the same adults land in hospital twice as often and stay longer, mostly for chest infections and thyroid trouble. The 2007 death data now make sense — respiratory illness builds up over time.
Gastelum Guerrero et al. (2024) pooled 15 studies and found people with Down syndrome have worse lipid profiles — lower good cholesterol, higher triglycerides. This supports the cardiac part of the 2007 mortality picture.
Jones et al. (1992) saw the same bad lipids but puzzled over why coronary disease rates stayed low. Stancliffe et al. (2007) give one answer: adults do die from heart issues, just not always classic heart attacks.
Why it matters
If you support adults with Down syndrome living at home, schedule yearly cardiac and respiratory checks. Track coughs, fatigue, and thyroid labs. Push for lipid panels and flu shots. Early action can bend the mortality curve down before families face sudden loss.
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02At a glance
03Original abstract
BACKGROUND: Little is known about the mortality of individuals with Down syndrome who have lived at home with their families throughout their lives. The current study evaluates the predictors, causes and patterns of mortality among co-residing individuals in midlife with Down syndrome as compared with co-residing individuals with ID owing to other causes. METHOD: This paper examines mortality in 169 individuals with and 292 individuals without Down syndrome from 1988 to 2007. Dates and causes of death were obtained from maternal report, the Social Security Death Index and the National Death Index. Risk factors predicting mortality, including demographic variables, transition variables, and initial and change measures of health, functional abilities and behaviour problems, were obtained from maternal report. RESULTS: Having Down syndrome is a risk factor of mortality, net of other risk factors including older age, poorer functional abilities, worsening behaviour problems, residential relocation and parental death. The causes of death among individuals with and without Down syndrome who are in midlife and co-residing with their families are similar, and are most commonly due to cardiovascular or respiratory problems. CONCLUSIONS: The findings indicate that midlife adults with Down syndrome who co-reside with their families generally exhibit similar causes of mortality as do midlife adults with intellectual disability owing to other causes, but show an elevated risk of mortality in midlife net of other variables, such as age and changes in functional abilities and behaviour problems.
Journal of intellectual disability research : JIDR, 2007 · doi:10.1111/j.1365-2788.2007.01006.x