Managing the care of adults with Down’s syndrome

Summary points

• People with Down’s syndrome have experienced a dramatic increase in life expectancy, which is now in their mid-50s

• The approach to primary care for adults with Down’s syndrome is similar to that for the general adult population, with the addition of screening for conditions specific to Down’s syndrome

• Practitioners must be vigilant for conditions that are more common in Down’s syndrome than in the general population, such as hypothyroidism, obstructive sleep apnea, and osteoporosis

• Adults with Down’s syndrome have a lower risk of hypertension, coronary artery disease, and solid tumors than the general population

• People with Down’s syndrome have an increased risk of Alzheimer’s dementia, but not all adults experience this; the onset of dementia is not typically seen before age 40. By age 60, 40-77% of adults will have Alzheimer’s dementia

• Respiratory infection is the leading cause of death in adults with Down’s syndrome

Sources and selection criteria

We based this narrative review on articles found by searching PubMed and the Cochrane Database of Systematic Reviews. We then applied snowball techniques to sources for the articles identified from both databases. Search terms first included “Down syndrome”, “preventive health care”, “epidemiology”, and “adults with Down syndrome”. We then searched specifically for articles dealing with comorbidities identified within that search. To date, few randomized controlled trials have involved adults with Down’s syndrome, and many studies that do exist used small sample sizes. We referenced many of these studies to ensure that our review was thorough and accurate. The information contained in this review results primarily from literature arising from observational studies and expert consensus, unless noted otherwise.