END-OF-LIFE AND DYING IN PERSONS WITH INTELLECTUAL DISABILITIES: IMPLICATIONS FOR COUNSELLING, EDUCATION AND SUPPORT

Abstract

People with intellectual disabilities (ID) generally have a shorter lifespan, but the duration of quality life is becoming more and more extended. That is why supportive, holistically oriented palliative care is also gaining in importance in the period when a client with ID is dying or is in the end-of-life stage of life. Although recent years have seen a steady increase in published surveillance and theoretical studies, empirical data about the needs of palliative care for people with ID are still rather rare. Most of the staff working in the health, social, and other service sectors are confronted with the difficulty of caring for, the approach to be taken to, and communication with people with ID. These people need adequate support in the topics of death, dying, accompanying, and mourning. People engaged in the helping professions should not deliberately avoid these topics, but, on the contrary, become initiators of open, clear, and objective communication heading towards the greatest possible extent of help and support to people with ID. At the same time, it is a huge demand for education and a great challenge for the pre-graduate and professional training of helping professions.