Titlebook: End of Life and People with Intellectual and Developmental Disability; Contemporary Issues, Roger J. Stancliffe,Michele Y. Wiese,Mary McCar

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Experience of End-of-Life Issues by People with Intellectual Disability,s, rather than the views of others such as caregivers and clinicians. Topics include their experiences when family or friends die, and engagement with their own dying and death. The extent to which people with intellectual disability actively participate in research about the end of life is critique

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Advance Care Planning with and for People Who Have Intellectual and Developmental Disabilities,arios, ACP is an ongoing, collaborative process but it remains largely underutilised. This chapter reviews critical issues related to ACP for people with intellectual and developmental disabilities, including standards for assessing capacity in healthcare decision-making. Recommendations for facilit

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Decision-Making at the End of Life: Challenges and Opportunities for People with Intellectual and Mng as a dialogue. In recent years, the concept of informed consent has become more and more popular, associated with the perception of the autonomous patient. However, in many parts of the world people with intellectual disabilities have not always been viewed as autonomous. The United Nations Conve

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How People with Intellectual Disability Are Dying and Implications for Quality Care,rgent and growing need for care, for an ageing population with increased incidence of life-limiting illnesses requiring often extended periods of care. A necessary first step to providing quality end-of-life care is to understand the conditions under which this group currently experiences death. Thi

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Living and Dying Well with Dementia,t that while onset may be at an earlier age and more rapid in early dementia stages, there is often a long late stage where decisions about end-of-life care and dying well must be supported. For the individual and caregivers, later stages of dementia can be complicated by lack of understanding and p

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Supporting People with Intellectual Disability at End of Life: Moral Distress Among Staff Caregiversupport to the person dying, and the failure to celebrate the person‘s life within local customs. Where people work to deliver high-quality care, such disruption can lead to carers experiencing moral distress, which can have behavioural and physical consequences if unresolved. This chapter describes

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Accessible Funerals and People with Intellectual Disability,aking of others’ death. It examines research on funeral attendance and barriers, involving adults with intellectual disability. COVID-19 has restricted funeral participation for all, highlighting how people with disabilities have often been excluded from these rituals long before the pandemic. Exper

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