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

• 作者: Erika Guastafierro Matilde Leonardi Venusia Covelli
• 来源期刊: 老年问题研究(英文)
• 学科: 数学
• 关键词: Down Syndrome Trisomy 21 Future Life Ageing ELDERLY Biopsychosocial Approach
• 年，卷（期）: 2020,（6）
• 页码范围: 95-115
• 页数: 21页
• 分类号: O17

摘要

<strong>Background</strong>:<span> </span><span>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 (“<i></i></span><i><i><span>after</span></i><span> </span><i><span>we</span></i><span> </span><i><span>have</span></i><span> </span><i><span>gone</span></i></i><span>”). </span><b><span>Objective</span></b><b><span>:</span></b><span> 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. </span><b><span>Methods</span></b><b><span>:</span></b><span> A cross-sectional Italian national study was carried out. An <i></i></span><i><i><span>ad</span></i><span> </span><i><span>hoc</span></i></i><span> questionnaire was administered to formal and informal caregivers of aging people with Down Syndrome. </span><b><span>Results</span></b><b><span>:</span></b><span> 136 family members and health professionals were involved. Most of </span><span>the </span><span>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). </span><b><span>Conclusions</span></b><b><span>:</span></b><span> </span><span>The a</span><span>ging of people with DS requires attention to the planning of their future. In order to better plan, it is necessary to avoid programming </span><span>“</span><span>in emergency</span><span>”</span><span>, 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.</span>