Watchman K (2005) Practitioner raised issues and end of life care for adults with Down syndrome and dementia. Journal of Policy and Practice in Intellectual Disabilities, 2 (2), pp. 156-162. http://onlinelibrary.wiley.com/doi/10.1111/j.1741-1130.2005.00026.x/full
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 end-of-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.
Journal of Policy and Practice in Intellectual Disabilities: Volume 2, Issue 2