Quality of life of adults with trisomy 21 living in mental retardation homes compared with those staying under parental care

Abstract

Genetic counseling today includes providing information about the probability of future behavior and state of health of surviving patients with Down syndrome (DS). Comparative studies on quality of life of DS adults are rare. A consideration for termination of a trisomic fetus is the insecurity, loneliness, and desperation after the death of caring parents. Our study concentrated on the analysis of behavioral data and coping abilities of the patients themselves. We investigated 59 DS adults who live in an institution and 59 DS adults who live at home. The control group consisted of 59 mentally retarded patients with nongenetic disorders in the same institution. The results show significant differences between the "institutionalized" and the "home-care" cohort. Men and women differ in coping with their situations at home, which in turn leads to more interest in homework of women. At working places, this group is more motivated and shows a better mood. In comparison with other mentally retarded adults, those with trisomy 21 are far more socially interested and active. The implication for genetic counseling will be discussed.