In recent decades, the life expectancy of people with intellectual and developmental disabilities (IDD)—for example, in Germany—has significantly increased, although it still remains well below that of the general population. As a result, the number of very elderly individuals with IDD in need of adequate care has also risen. It is now known that people with milder cognitive and socio-emotional impairments, like older nondisabled individuals, prefer to spend the later stages of their lives in familiar surroundings with people they know and trust. A recent study has shown that individuals with mild IDD also wish to remain in those familiar environments when the time comes for them to die. They want to be surrounded by people they know when they are dying. However, they often find it difficult to imagine the process of dying itself. In contrast, many already have clear ideas about how they would like to be buried and how they wish to be remembered. Yet not all facilities for people with IDD have spatial and staffing resources to enable them to remain in their usual environments until the end of their lives. Additionally, caregivers often lack the knowledge needed to ensure respectful and dignified care in such situations. The care provided to a dying person with IDD must always be aligned with their abilities, needs, and wishes—without neglecting the physical and emotional well-being of the caregivers and co-residents. This is especially true for individuals with severe or profound cognitive and socio-emotional impairments.

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Ageing, Dying, and Death of People with Intellectual and Developmental Disabilities

  • Lotte Habermann-Horstmeier

摘要

In recent decades, the life expectancy of people with intellectual and developmental disabilities (IDD)—for example, in Germany—has significantly increased, although it still remains well below that of the general population. As a result, the number of very elderly individuals with IDD in need of adequate care has also risen. It is now known that people with milder cognitive and socio-emotional impairments, like older nondisabled individuals, prefer to spend the later stages of their lives in familiar surroundings with people they know and trust. A recent study has shown that individuals with mild IDD also wish to remain in those familiar environments when the time comes for them to die. They want to be surrounded by people they know when they are dying. However, they often find it difficult to imagine the process of dying itself. In contrast, many already have clear ideas about how they would like to be buried and how they wish to be remembered. Yet not all facilities for people with IDD have spatial and staffing resources to enable them to remain in their usual environments until the end of their lives. Additionally, caregivers often lack the knowledge needed to ensure respectful and dignified care in such situations. The care provided to a dying person with IDD must always be aligned with their abilities, needs, and wishes—without neglecting the physical and emotional well-being of the caregivers and co-residents. This is especially true for individuals with severe or profound cognitive and socio-emotional impairments.