Abstract
A population sample of people with Down syndrome, studied from infancy, has now been followed up at the age of 50years. From the original sample of 54, there were 27 still in the study at the age of 50, all but four of the losses resulting from deaths. Intelligence and language skills were tested and daily living skills assessed. Memory/cognitive deterioration was examined using two test instruments. Other aspects of the people's lives were examined via carers' reports. Scores on verbal tests showed little change. Those on a non-verbal test, on self-help skills and on both memory tests showed some decline, even when the scores of those already suffering from dementia were discounted. At the age of 50, those not already diagnosed with dementia showed some decline on most tests. While this may include scores of people who subsequently develop dementia, it may also reflect the normal ageing process in this population.
Highlights
Life expectancy for people with Down syndrome has increased dramatically over the last century
By the age of 50, 27 of the original 54 participants with Down syndrome were still in the study, all but four of the losses being due to death
As IQ tests do not cover all ages, the Bayley Scales of Infant Development were used up to 4 years; the Merrill Palmer Scales at 11 years; and the Leiter Scale from 21 years. Only those people who featured at every stage of the study were included for analysis, that is those 27 who were in the study at every age from 21 up to 50 years
Summary
Life expectancy for people with Down syndrome has increased dramatically over the last century. In 1988, it was estimated that nearly half (44%) of those born between 1952 and 1981 will survive to the age of 60 and 13.6% to the age of 68 (Baird & Sadovnik, 1988) This increased lifespan is attributed largely to the decline, due to heart surgery, in deaths brought about by heart defects (Zhu et al, 2013), supported by Englund, Jonsson, Zander, Gustafstasson and Anneren (2013) who cite pneumonia as the main cause of death in people with Down syndrome. “some 20%–30% of elder adults with Down syndrome might never show any, or at most mild, symptoms of AD” (Zigman, 2013) Welcome as is this increase in the lifespan of people with Down syndrome, it brings with it some concerns. The vulnerability of the group to dementia has become increasingly clear, leading to the current emphasis on diagnosis and the search for effective treatments
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