Caring for an adult with Down syndrome
Elizabeth Heavey PhD, RN, CNM
Kathy Peterson-Sweeney PhD, RN, PNP

June 2010 
Volume 40  Number 6
Pages 53 - 56
  PDF Version Available!

DOWN SYNDROME, or trisomy 21, is one of the most common birth defects, occurring in 1 per 733 live births in the United States.1 When this syndrome was first described in 1866, people with Down syndrome rarely lived past age 25. By the 1970s, they rarely lived beyond age 45.2 Infants born with Down syndrome today are expected to live well into their 50s. Many adults with Down syndrome live semi-independently in group homes or in assisted living situations, often working in the community.3This article explains medical conditions that are common to adults with Down syndrome as well as recommended health promotion strategies and nursing care for these vulnerable patients. (See Looking at Down syndrome for more details.) Remember that adults with Down syndrome have a wide range of intellectual abilities, so assess each patient to determine individual needs.Families of children with Down syndrome experience higher levels of stress than families with children who don't have Down syndrome or other chronic illness.4 Adults with Down syndrome still need supervision, guidance, and care provided by family members, who may be aging themselves. You can be instrumental in helping the family get appropriate resources as well as in advocating for the resources needed throughout this person's life. Websites can provide great emotional support as well as education. (See Tap these resources about Down syndrome.)Remember that adults with Down syndrome are considered legally competent to make their own medical decisions unless a legal guardian has been appointed.5 As a nurse, you're in a perfect position to ensure that patients with Down syndrome are involved in the decision-making process for their care.The need for a legal guardian should be assessed before a person with Down syndrome reaches adulthood, and then reassessed as needed. Criteria for evaluating patients to qualify for guardianship differ by state, but in general, if the court determines that the person is incapacitated,

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