{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,24]],"date-time":"2026-06-24T23:38:49Z","timestamp":1782344329324,"version":"3.54.5"},"reference-count":35,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2011,6,10]],"date-time":"2011-06-10T00:00:00Z","timestamp":1307664000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Am J Hosp Palliat Care"],"published-print":{"date-parts":[[2012,2]]},"abstract":"<jats:p>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\u2019s 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.<\/jats:p>","DOI":"10.1177\/1049909111410306","type":"journal-article","created":{"date-parts":[[2011,6,10]],"date-time":"2011-06-10T20:14:35Z","timestamp":1307736875000},"page":"9-12","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":22,"title":["End-of-Life Issues in Caring for Patients With Dementia"],"prefix":"10.1177","volume":"29","author":[{"given":"Albert M. E.","family":"Coleman","sequence":"first","affiliation":[{"name":"Avon and Wiltshire NHS Trust, The Coppice, Brislington, Bristol, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2011,6,10]]},"reference":[{"key":"bibr1-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM200104123441501"},{"key":"bibr2-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1097\/JGP.0b013e3181e043d0"},{"key":"bibr3-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1111\/j.1525-1497.2004.30329.x"},{"key":"bibr4-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa0902234"},{"key":"bibr5-1049909111410306","author":"Ruth K","year":"2010","journal-title":"National End of Life Care Intelligence Network (NEoLCIN)"},{"key":"bibr6-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1099-1166(199703)12:3<404::AID-GPS529>3.0.CO;2-2"},{"key":"bibr7-1049909111410306","unstructured":"House of Commons Health Committee Palliative Care: fourth report of session 2003-04. Paragraph 79. www.publications.parliament.uk\/pa\/cm200304\/cmselect\/cmhealth\/454. Accessed February 17, 2011."},{"key":"bibr8-1049909111410306","author":"Harris S","year":"2010","journal-title":"National End of Life Care Intelligence Network (NEoLCIN)"},{"key":"bibr9-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1093\/ageing\/afj025"},{"issue":"6","key":"bibr10-1049909111410306","first-page":"288","volume":"38","author":"Van der Steen JT","year":"2007","journal-title":"Tijdschr Gerontol Geriatr"},{"key":"bibr11-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1097\/00002093-200607000-00008"},{"key":"bibr12-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1093\/ageing\/afl067"},{"key":"bibr13-1049909111410306","volume-title":"Living Well With Dementia: A National Dementia Strategy","author":"Department of Health","year":"2009"},{"key":"bibr14-1049909111410306","volume-title":"The End of Life Care Strategy: Delivering High Quality Care for Adults at the End of Life","author":"Department of Health","year":"2008"},{"key":"bibr15-1049909111410306","volume-title":"The End of Life Care Strategy. Quality Markers and Measures for End of Life Care","author":"Department of Health","year":"2009"},{"key":"bibr16-1049909111410306","unstructured":"The National Council for palliative care. Priorities for dementia care within the end of life care strategy\u2019s quality markers and measures for commissioners. http:\/\/www.ncpc.org.uk\/download\/publications\/EndofLifeQualityMarkersForDementia.pdf. Accessed February, 2011."},{"key":"bibr17-1049909111410306","unstructured":"Allen RS, Kwak J, Lokken KL, Haley WE. End of life issues in the context of Alzheimer\u2019s dementia. Alzheimer\u2019s Care Q. 2003;4(4):312\u2013330. doi:10.1901\/jaba.2003.4-312.a. http:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC2789353\/pdf\/nihms102673.pdf. Accessed February, 2011."},{"key":"bibr18-1049909111410306","unstructured":"Alzheimer\u2019s Research trust, (Luengo-Fernandez R, Leal J, Gray A). Dementia 2010. The prevalence, economic cost and research funding of dementia, compared with other major diseases. Executive Summary. A report produced by the Health Economic Research Centre, University of Oxford for the Alzheimer\u2019s Research Trust. www.dementia201.org. Accessed February, 2011."},{"key":"bibr19-1049909111410306","volume-title":"Counting the Costs. Caring for People With Dementia in Hospital Wards","author":"Alzheimer\u2019s Society","year":"2009"},{"key":"bibr20-1049909111410306","doi-asserted-by":"publisher","DOI":"10.17925\/ENR.2010.05.02.29"},{"key":"bibr21-1049909111410306","unstructured":"Nuffield Council on Bioethics. Dementia: ethical issues. 2009. www.nuffieldbioethics.org. Accessed February 17, 2011."},{"key":"bibr22-1049909111410306","unstructured":"Sampson EL, Thune-Boyle I, Kukkastenvehmas R, Palliative care in advanced dementia; a mixed methods approach for the development. BMC Palliative Care. 2008;7:8. 11th July 2008. http:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC2475530\/pdf\/1472-684X-7-8.pdf. Accessed February 17, 2011."},{"key":"bibr23-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1136\/jme.27.2.92"},{"key":"bibr24-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.67.1.59"},{"key":"bibr25-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1093\/eurpub\/ckp006"},{"key":"bibr26-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1001\/jama.291.22.2734"},{"key":"bibr27-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1177\/104990919901600110"},{"key":"bibr28-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-8519.2008.00667.x"},{"key":"bibr29-1049909111410306","doi-asserted-by":"publisher","DOI":"10.1136\/jme.2010.038950"},{"key":"bibr30-1049909111410306","volume-title":"Bioethics. 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