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Am J Hosp Palliat Care. 2012 Feb;29(1):9-12. doi: 10.1177/1049909111410306. Epub 2011 Jun 10.

End-of-life issues in caring for patients with dementia: the case for palliative care in management of terminal dementia.

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  • 1Avon and Wiltshire NHS Trust, The Coppice, Brislington, Bristol, UK.


The number of people suffering with dementia is increasing in the general population and the trend is projected to continue as people live longer, especially in countries with developed economies. The most common cause of dementia (among the many other causes) is Alzheimer's dementia, which is considered a terminal illness. The disease could eventually lead to death, or death could occur as a consequence of co-morbid physical complications. The problem of end of life (EOL) care for patients suffering from dementia though spoken of and written about, does not get the attention and system support as for example patients suffering from cancer receive. Many reasons have been advanced for the current state of affairs where EOL issues for patients suffering from dementia are concerned. This article attempts to revisit the issues, and the reasons, that may contribute to this. Some guidelines on palliative management in cases of patients suffering from severe dementia exist; the evidence base for these guidelines though is relatively weak. The ethical and legal issues that may influence or impact on the decision to initiate the palliative care pathway in the management of EOL issues for dementia patients in the terminal or end stage of the illness is highlighted. Initiatives by the department of health in England and Wales, and other bodies with interest in dementia issues and palliative care in the United Kingdom to ensure good and acceptable EOL pathways for patients with dementia are mentioned.

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