Ninth International Conference on Health, Wellness & Society

Abstract

During the last few decades, there has been a significant increase in the life expectancy of people with Down syndrome (DS) – from nine years in 1929 to 60 years in 2002. This dramatic increase has presented people with DS and their families with new challenges related to the aging process– the first signs of which appear in people with DS around the age of 30. The aim of this study was to better understand the perception of adults with DS of their own aging, and to look at the perception of parents of adults with DS in relation to their children. We conducted interviews with 33 people with DS over the age of 30 and with their parents. The analysis is based on phenomenological approach. The participants with DS addressed the issue of aging mainly through the decline in the functioning of an old person they knew. They found it difficult to talk about their own old age or the end of life of their parents. The parents were surprised at the lack of understanding of their children about their own aging. They emphasised the changes needed in policy and regulations, so as to ensure that their children with DS age with dignity and quality of life. Our study identifies the increasingly pressing need to prepare adults with DS for their own and their parents’ ageing and end of life in a timely manner.