End-of-Life Care Challenges for Persons With Intellectual Disability and Dementia: Making Decisions About Tube Feeding

People with intellectual disabilities are living longer, and greater numbers of individuals are surviving into the age of risk where they are developing Alzheimer's dementia. This is particularly true for older people with Down syndrome, who are uniquely at risk of developing Alzheimer's dementia and who account for about one third of all people with intellectual disabilities and Alzheimer's dementia. There is a growing realization of the increased care needs for individuals with intellectual disabilities and Alzheimer's dementia across the continuum of dementia (McCarron, Gill, Lawlor, & Begley, 2002). Dementia is a terminal illness, and there are unique care issues around the end stage of this disorder (McCallion & McCarron, 2004). Researchers have confirmed that in end-stage dementia, a terminal picture includes severe intellectual deterioration, marked personality and mood changes, loss of sphincter control, seizure activity, immobility with...