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2008: End-of-Life care for people with dementia

Aksoy S and Tenik A (2002), The four principles of bioethics as found in13th century Muslim scholar Mawlana’s teachings,BMC Medical Ethics,3:4

Allan, K. (2001), Drawing out views on services: a new staff-based approach,Journal of Dementia Care, Nov/Dec 2000

Alzheimer’s Australia (2006),Palliative care and dementia, Discussion paper 7, Alzheimer’s Australia

Alzheimer Europe (2001),Equality in the provision of care at home (EPOCH), Alzheimer Europe

Alzheimer Europe (2006),Alzheimer Europe report: the use of advance directives by people with dementia, Alzheimer Europe

Alzheimer Europe (2007),Dementia in Europe Yearbook 2007, Alzheimer Europe

Alzheimer’s Society (2007),Policy Positions: palliative care/withdrawing and withholding treatment,

Angelo et al. (1995),AD 1995 Reinstatement of the Oath of Hippocrates, Accessed online on 9 April 2008,

Bauer-Wu S, Barrett R and Yeager K (2007), Spiritual perspectives and practices at the end of life: a review of the major world religions and application to palliative care.Indian Journal of Palliative Care, 2007, 13:53-8. Accessed online on 14 February 2008,;year=2007;volume=13;issue=2;spage=53;epage=58;aulast=Bauer-Wu

Beauchamps TL and Childress JF (1994),Principles of Biomedical Ethics, 4th ed. Oxford University Press.

Bell V and Troxel D (2001), Spirituality and the person with dementia – a view from the field,Alzheimer’s Care Quarterly, 2 (2), 31-45

Berghmans R (1998), Advance directives for non-therapeutic dementia research: some ethical and policy considerations.Journal of Medical Ethics, 24, 32-37

Bickel K and Arnold R (2004), Fast Facts and Concepts #109. Death rattle and oral secretions.End-of-Life/Palliative Education Resource Center,

Blanchard F (2006), We have to fight against the idea that Alzheimer’s disease is death of the spirit. InLes Cahiers de la Fondation Médéric Alzheimer: Supporting and caring for people with dementia throughout end of life, Number 2, June 2006

Buchanan A (1988), Advance directives and the Personal identity problem.Philosophy and Public Affairs, 17, 277-302

Burns A, Jacoby R, Luthert P and Levy R (1990), Causes of death in Alzheimer’s disease, Age and Ageing, 19, 341-4. In De Vries, K (2003),Palliative care for people with dementia.

Capezuti E, Evans L, Strumpt N and Maislin G (1996), Physical restraint use and falls,J. American Geriatric Society, 1996 Jun;44(6):627-33

Cotter VT (2005), Restraint free care in older adults with dementia. The Keio Journal of Medicine, 54 (2): 80-4

Council of Europe (1997),Council of Europe’sConvention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, Oviedo, Spain

Council of Europe,Recommendation Rec(2003)24 of the Committee of Ministers to member states on the organisation of palliative care and explanatory memorandum,

Cox J (2003), Why do we ignore these ethical issues?Journal of Dementia Care, Nov/Dec, 25-28

Cox S and Cook A (2007), Caring for people with dementia at the end of life. InPalliative care for older people in care homes, Hockley, J. and Clark, D., McGraw-Hill Higher Education

Daar A and Khitamy A (2001), Bioethics for clinicians: 21. Islamic bioethics, CMAJ, 2001, 164 (1),  

Department  of Health and Ageing (2004),Guidelines for a palliative approach in residential aged care, Rural Health and Palliative Care Branch, Department of Health and Ageing, Canberra:

De Vries K (2003), Palliative care for people with dementia. In Adams T and Manthorpe J (2003),Dementia Care, Arnold Publishers

Dinning L (2006), The spiritual care of people with severe dementia. In Hughes JC (Editor) (2006),Palliative care in severe dementia in association with Nursing and Residential care,Quay Books Division, MA Healthcare Limited

Downs M (2004), Palliative care in dementia, Mental Health in Old Age Bulletin, Issue 7,

Fearnley K. (2007), Response to Alzheimer Europe’s questionnaire on social support to people with dementia and their carers in Scotland.

Dunlop J (2006), The Feeding Tube Dilemma: Key Questions, The Center for Bioethics Human Dignity,

Dylan J (2007),What is a person?Faith Magazine, March-April 2007, accessed online on 1/2/2008,

Evers C and Sutton L (2007), Understanding the palliative care needs of people with dementia, (accessed online on 17 February 2008)

Eurostat (2007), Causes of death, accessed online on 7 February 2008,,45323734&_dad=portal&_schema=PORTAL&screen=welcomeref&open=/C/C2/C27/C22&language=en&product=Yearlies_new_population&root=Yearlies_new_population&scrollto=0

Finuncane TE, Christmas C and Travis K (1999), Tube feeding in patients with advanced dementia: a review of the evidence,JAMA, 282, 1365-1370

Francke AL (2003),Palliative care for terminally ill patients in the Netherlands.The Hague, Ministry of Health, Welfare and Sport,  

Gillon R (1994), Medical ethics: four principles plus attention to scope.BMJ, 309,184

Goldsand G, Rosenberg ZRS and Gordon M(2001), Bioethics for clinicians: 22. Jewish bioethics,CMAJ, 164 (2),

Henderson J (2006), Palliative care in dementia caring at home to the end,Journal of Dementia Care, May/June 2007

Holmerová I, Jurašková B, Kalvach Z, Rohanova E, Rokosová M and Vaňková H (2007), Dignity and palliative care in dementia,The Journal of Nutrition, Health & Aging, Volume 11, Number 6

Hughes JC, Jolley D, Jordan A and Sampson EL (2007), Palliative Care in Dementia: issues and evidence:Advances in Psychiatric Treatment,Volume 13, Issue 4, 251 – 260, July 2007

Innes A (2003), Developing ethnically sensitive and appropriate dementia care practice. In Adams T and Manthorpe J (2003),Dementia Care, Arnold Publishers

Jeffery P (2001), Going against the stream: Ethical aspects of Ageing and Care. Gracewing, Leominster (UK) and Liturgical Press, Collegeville (USA). In Hughes, J. C. (Editor) (2006),Palliative care in severe dementia in association with Nursing and Residential care,Quay Books Division, MA Healthcare Limited

Kao AC (2004),Seven minutes to midnight.

Keene J, Hope T, Fairburn CG and Jacoby R (2001), Death and dementia, International Journal of Geriatric Psychiatry, Volume 16, Issue 10, 969-974

Kennell-Shank C (2005), Faiths differ on end-of-life treatments; Guidance is offered on euthanasia, easing pain, The San Diego Union Tribune, 7 April 2005,

Kishore RR (2003), End of Life Issues and Moral Certainty: A Discovery through Hinduism,Eubios Journal of Asian and International Bioethics13, 210-3,

Kitwood, T (1997),Dementia reconsidered – the person comes first, Open University Press

König et al. (2004), Religion, spirituality and acute care hospitalisation and long-term care use by older patients; Arch Intern Med, 164 (14). In Brandt, H. (2006),Palliative care in Dutch nursing homes, Vrije Universiteit

Kuhse H (1999), Some reflections on the problem of advance directives, personhood and personal identity.Kennedy Institute of Ethics Journal, Vol.9, no.4, 65-381

Li, I. (2002), Feeding tubes in patients with severe dementia,American Family Physician, 2002; 1605-10

Lynn J, Adamson DM (2005), Living well at the end of life, adapting health care to serious chronic illness in old age. Washington: Illness Trajectories and palliative careBMJ(clinical Research ed):330:7898:1007-10011

Mallia P (2003),Biomedical ethics: the basic principles,

Manthorpe J and Price E (2003), Out of the shadows,Community Care, Apr. 3, 2003

Markwell, H. and Brown, B. (2001), Bioethics for clinicians: 27. Catholic bioethics,CMAJ, July 24, 2001; 165 (2)

Materstvedt LJ, Clark D, Ellerschaw J, et al. (2003), Euthanasia and physician-assisted suicide: a view from an EAPC Ethics Task Force,Palliative Medicine, 17, 97-101

McCann RM, Hall WJ and Groth-Juncker AG (2004), Comfort care for terminally ill patients: the appropriate use of nutrition and hydration.JAMA1994; 274:1263-1266.

McCarthy M, Addington-Hall J and Altman D (1997), The experience of dying with dementia: a retrospective study,International Journal of Geriatric Psychiatry, 12:404-9.

Monschein, M (2008), Antipsychotika schaden bei Alzheimer (press release – pressetext.austria, Internet newsletter),

Morgan, K and Clarke, M (1995), To what extent is dementia underreported on British death certificates? InternationalJournal of Geriatric Psychiatry, (abstract accessed online on 28 July 2008 at:

Morris, C. and Murray, M. (1997), Swallowing problems – how to help,Journal of Dementia Care, March/April 1997

Narayanasamy A, Clissett P, Parumal L, Thompson D, Anasamy, S and Edge R (2004), Responses to the spiritual needs of older people,Journal of Advanced Nursing, 48 (1), 6-16

National Council for Palliative Care and The Alzheimer’s Society (2006),Exploring Palliative Care for People with Dementia: a discussion document, August 2006,

Orchard H (2002), Spiritual care in care homes: perceptions and practice. In Hockley J and Clark D (Eds.),Facing Death: palliative care for older people in care homes, Open University Press

Pointon B (2007), Towards better care for people with dementia at the end of life,Journal of Dementia Care, May/June 2007

Pointon B (2008), 'Who Am I?': The Search for Spirituality in Dementia - The Family Carer's Perspective. In Gilbert P, Coyte ME and Nicholls V (Eds.) (2008), Spirituality, values and mental health; jewels for the journey, Jessica Kingsley Publishers

Regnard and Huntley (2006) in Hughes JC (Editor) (2006),Palliative care in severe dementia in association with nursing and residential care,Quay Books Division, MA Healthcare Limited

Regnard C (2006), If bad drivers rather than cars are responsible for most road deaths, why blame morphine and ignore bad prescribers?Presented to the House of Lords All party Committee on Dying Well, 7th November 2006

Reilly RB et al. (1994), Projecting patients’ preferences from living wills: an invalid strategy for management of dementia with life-threatening illness.Journal of the American Geriatric Society, 42:997-1003

Sampson EL, Gould V, Lee D and Blanchard MR (2006), Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study,Age and Ageing, 35: 190-3

Santamaria N (2005) PRIME Trial Australian Government, Canberra (unpublished). In Alzheimer’s Australia (2006),Palliative care and dementia, Discussion paper 7, Alzheimer’s Australia

Schmidl, M. (2006),Nicht verlassen werden bis zuletzt – Palliative Betreuung von Demenzkranken und ihren Angehörigen, transcript of speech (unpublished) – Alzheimer Austria

Shahid A (1995),Islamic medical ethics: some questions and concerns,

Shapiro DS and Friedmann R (2006), To feed or not to feed the terminal demented patient – is there any question?IMAJ, Volume 8, July 2006

Simard J (2007), Silent and invisible; nursing home residents with advanced dementia,The Journal of Nutrition, Health & Aging, Volume 11, Number 6

Smith S (2005), Dementia palliative care needs assessment: a focus on spiritual care,Scottish Journal of Healthcare Chaplaincy, Vol. 8, No.1

Stanford University (2008),The Principle of Beneficence in Applied Ethics, Stanford Encyclopedia of Philosophy,

Steinberg A (2008), Jewish Medical Ethics, The Schlesinger Institute for Jewish Medical Ethics, accessed on line on 13 February 2008)

Sulmasy DP (2002), A biopsychosocial–spiritual model for the care of patients at the end of life, The Gerontologist, 42:24-33. Accessed online on 14 February 2008,

Summersall J and Wight S (2006), When it’s difficult to swallow: the role of the speech therapist. In Hughes, JC (Editor) (2006),Palliative care in severe dementia in association with Nursing and Residential care,Quay Books Division, MA Healthcare Limited

Swiss Academy of Medical Sciences (2006), Palliative Care. Medical-ethical guidelines and recommendations, Accessed online on 7 February 2008:

Swiss Academy of Medical Sciences (2008), Le rationnement au sein du système de santé: Forum organisé par la Fondation Risiko-Dialog le 13 mars 2008 à Berne, accessed online on 9 April 2008, 

The National Advisory Board on Health Care Ethics (ETENE), (2003),End-of-life care – memorandum of the National Advisory Board on Health Care Ethics; Report of the working group, ETENE

Van der Steen J  et al. (2002), Withholding antibiotic treatment in pneumonia patients with dementia. A quantitative observational study,Archives of Internal Medicine, Vol. 162, No.15

Volicer L (2005),End-of-life care for people with dementia in residential care settings, Alzheimer’s Association

Wang WW and Moyle W (2005), Physical restraint use on people with dementia: a review of the literature.Australian Journal of Advanced Nursing, 2005 Jun-Aug;22(4):46-52

Watson R (2003), Addressing the physical care needs of people with dementia. In Adams T and Manthorpe J (2003),Dementia Care, Arnold Publishers

Werth JL Jr, Gordon JR and Johnson RR Jr (2002), Psychosocial issues near the end of life,Aging & Mental Health, Volume 6, Number 4, 402-412

Woods, B, Keady, J and Seddon., D (2007),Involving families in care homes: a relationship-centred approach to dementia care, Jessica Kingsley Publishers

World Health Organisation (2002),WHO Definition of Palliative Care, (accessed on 1/8/2007)

World Health Organisation (2004), Better Palliative Care for Older People,

Yalom ID (1980), Existential psychotherapy. New York: Basic Books



Last Updated: Monday 23 April 2012