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‘I will never be old’: adults with Down syndrome and their parents talk about ageing-related challenges

Published online by Cambridge University Press:  21 March 2019

Adi Finkelstein Open the ORCID record for Adi Finkelstein [Opens in a new window] ,
Ariel Tenenbaum  and
Yaacov G. Bachner
Adi Finkelstein*
Affiliation:
Department of Nursing, Faculty of Life and Health Sciences, Jerusalem College of Technology, Jerusalem, Israel
Ariel Tenenbaum
Affiliation:
Department of Pediatrics, Hadassah Hebrew University Medical Center, Mt. Scopus campus, Jerusalem, Israel
Yaacov G. Bachner
Affiliation:
Department of Public Health, Faculty of Health Sciences, Ben-Gurion University of the Negev, Beer Sheva, Israel
*
*Corresponding author. Email: [email protected]
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Abstract

The life expectancy of people with Down syndrome (DS) has increased significantly over the last few decades. Consequently, they and their families face new ageing-related challenges, the first signs of which appear in people with DS around the age of 30. The goal of this study was to explore the perceptions of adults with DS regarding their own and their parents’ ageing and end of life, and to examine the views and concerns of the parents regarding the ageing of their children with DS. The unique approach used in our study was to convene not only the ageing people with DS but also their parents, to discuss the subject together. A total of 33 people with DS participated in the study. Most of them were interviewed with one or two parents. Participants with DS found it difficult to talk about their own old age and addressed the issue mainly through the decline in the functioning of an older person they knew. The parents emphasised the changes needed in terms of the official 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.

Keywords

Down syndromeageingparentsqualitativeend of life
Type
Article
Information
Ageing & Society , Volume 40 , Issue 8 , August 2020 , pp. 1788 - 1807
Copyright
Copyright © Cambridge University Press 2019

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