Practitioner‐Raised Issues and End‐of‐Life Care for Adults with Down Syndrome and Dementia

Abstract

The author interviewed a small group of practitioners working in intellectual disability and palliative care settings about their perceptions of a number of end-of-life issues related to people with Down syndrome who were affected by dementia. The study, which took place in Scotland, identified a number of issues and perceptions expressed by the subjects as well as gaps in services and practice. Key among the findings were the need for people with Down syndrome to be more involved in planning for their own endof-life care; a lack of communication between those persons working in palliative care and intellectual disability settings; identification of a "care culture clash;" deficits in training programs for staff involving dying, death, and bereavement; and that end-of-life care for people with Down syndrome and dementia is a neglected area of research. The author highlights the lack of uniform practice when working with people with Down syndrome in the end stages of dementia and provides some recommendations for further discourse and research.

Respecting autonomy in the end‐of‐life care of people with intellectual disabilities: a qualitative multiple‐case study

“…Tuffrey-Wijne states that breaking bad news to people with ID is a process, and that truth-telling should be facilitated so it can contribute to making people with ID better informed (Tuffrey-Wijne 2012). Some authors suggest that communication about end-of-life wishes and preferences should take place earlier in life, when people are healthier and better able to communicate, for example by using a life story, values assessment, or a preferred places-of-care plan (Watchman 2005;Foster et al 2006;Stein & Kerwin 2010). We do think that early attention to wishes and preferences can contribute to a respect for autonomy if it helps people with ID to make their own choices about end-of-life care.…”

“…These studies show that people with ID are often not (fully) informed and involved in decision‐making (Friedman ; Tuffrey‐Wijne et al . , , , ; Watchman ; Ryan & McQuillan ; Wagemans et al . ).…”

“…Yet there have been studies that indirectly address elements of respect for autonomy, such as truth-telling, the involvement of people with ID in decision-making and life preferences. These studies show that people with ID are often not (fully) informed and involved in decision-making (Friedman 1998;Tuffrey-Wijne et al 2005Watchman 2005;Ryan & McQuillan 2006;Wagemans et al 2010). People with severe ID in particular were often protected from the truth and not helped to understand the consequences of their diagnosis.…”

Caregiving and Adults With Intellectual Disabilities Affected by Dementia

“…Waking at night because of pain may be attributed to a general characteristic of dementia and remain untreated (Kerr, Cunningham, & Wilkinson, 2006). The literature on end‐of‐life care also raises issues and suggests the need for staff training involving dying, death and bereavement, communication with palliative care services, and the involvement of individuals and family members in decision‐making (McKechnie, 2006; Service, 2002; Watchman, 2005). While noting an absence of specific research, McCarron and McCallion (2007) offer principles drawn from the general literature to guide decision‐making on tube feeding at end‐of‐life.…”

The experience of caring for a dying client with intellectual disabilities. A qualitative study with direct-caregivers

“…Most studies about the end of life care for people with intellectual disabilities are directed on the palliative stage [3][4][5][6], but not the terminal stage until the death of the client.…”