Daily Life and Planning for the Future of Ageing People with Down Syndrome: Results from a National Study on Caregivers

Background: Limited research concerns the study of continuity in the future of the physical and social status of elderly people with DS that is when people who take care of them will not be there anymore (“after we have gone”). Objective: From a biopsychosocial perspective, to investigate the daily life of ageing people with Down Syndrome over 45 years old in order to identify the most important issues in better planning for their future. Methods: A cross-sectional Italian national study was carried out. An ad hoc questionnaire was administered to formal and informal caregivers of aging people with Down Syndrome. Results: 136 family members and health professionals were involved. Most of the people with Down Syndrome live at home, attend a daily center and do many activities. Most of them had never worked and she/he is not at all autonomous. 25% of caregivers declared that, nowadays, there is not planning for the future, and 30.9% of participants who planned their future collected information when it occurred (e.g. when the parents pass away). Conclusions: The aging of people with DS requires attention to the planning of their future. In order to better plan, it is necessary to avoid programming “in emergency”, but for time, keeping in mind of the activities developed by the people, their abilities and all of the elements that have allowed them to live well up to a point of their life.