28
Views
5
CrossRef citations to date
0
Altmetric
Miscellaneous

Quality of life in dementia: an ethical and philosophical perspective

Pages 525-534 | Published online: 09 Jan 2014

References

  • Baldwin C, Hughes J, Hope T, Jacoby R, Ziebland S. Ethics and dementia: mapping the literature by bibliometric analysis. int. Ceriatr Psychiatry 18,41–54 (2003).
  • Dresser RS, Robertson JA. Quality of life and nontreatment decisions for incompetent patients: A critique of the orthodox approach. Law Med Healthcare. 17,234–244 (1989).
  • Drane JF, Coulehan JL. The best-interest standard: surrogate decision making and quality of life. J. Clin. Ethics. 6,20–29 (1995).
  • Dresser R, Whitehouse PJ. The incompetent patient on the slippery slope. Hastings Cent. Rep. 24,6–12 (1994).
  • Baldwin C, Hughes J, Hope T, Jacoby R, Ziebland S. Ethics and dementia: mapping the literature by bibliometric analysis. Int. J. Ceriatr. Psychiatry. 18, 41–54 (2003).
  • Ready RE. Quality of life in dementia. Med. Health]?. I 85,216–218 (2002).
  • Hughes JC. Ethics and the psychiatry of old age. In: Psychiatry in the Elderly 3rd Edition. Jacoby R, Oppenheimer C (Eds). Oxford University Press, Oxford, UK, 863–895 (2002).
  • Burns A, Russell E, Page S. New drugs for Alzheimer's disease. BE J. Psychiatry 174, 476–479 (1999).
  • Post SG. The Moral Challenge of Alzheimer disease: Ethical Issues from Diagnosis to Dying 2nd Edition. Johns Hopkins University Press, MD, USA, 63–64, (2000). Very significant book, covering a number of issues in medical ethics relating to dementia and discussing the concept of quality of life in a number of areas.
  • Whitehouse PJ, Orgogozo J-M, Becker RE et al Quality-of-life assessment in dementia drug development. Alzheimer. Dis. Assoc. Disord 11,56–60 (1997).
  • Salek SS, Walker MD, Bayer AJ. A review of quality of life in Alzheimer's disease. Part 2: issues in assessing drug effects. PharmacoEconomics 14(6), 613–627 (1998).
  • Kitwood T, Bredin K. A new approach to the evaluation of dementia care. J. Advanc. Health Nurs. Carel (5), 41–60 (1992).
  • •Classic paper in establishing the method of dementia care mapping.
  • Williams J, Rees J. The use of dementia care mapping as a method of evaluating care received by patients with dementia — an initiative to improve quality of life. J. Adv. NUTS. 25,316–323 (1997).
  • Ballard C, O'Brien J, James I etal Quality of life for people with dementia living in residential and nursing home care: the impact of performance on activities of daily living, behavioral and psychological symptoms, language skills and psychotropic drugs. Int. Ptychogeriatr 13(1), 93–106 (2001).
  • Ballard CG, O'Brien JT, Reichelt K, Perry EK. Aromatherapy as a safe and effective treatment for the management of agitation in severe dementia: the results of a double-blind, placebo-controlled trial with Melissa. J. Clin. Psychiatry63(7), 553–58 (2002).
  • Fossey J, Lee L, Ballard C. Dementia care mapping as a research tool for measuring quality of life in care settings: psychometric properties. Int. J. Ceriatr. Psychiatry 17(11), 1064–1070 (2002).
  • Bond J, Corner L. Researching dementia: are there unique methodological challenges for health services research? Ageing Soc. 21, 95–116 (2001).
  • Lyketsos CG, Gonzales-Salvador T, Chin JJ, Baker A, Black B, Rabins P. A follow-up study of change in quality of life among persons with dementia residing in a long-term care facility. int. J. Ceriatr Bychiatry 18(4), 275–281 (2003).
  • Lo B, Dornbrand L. Understanding the benefits and burdens of tube feedings. Arch. Intern. Med. 149(9), 1925–1926 (1989).
  • Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N. Engl. Med. 342,206–210 (2000).
  • Wilmot S, Legg L, Barratt J. Ethical issues in the feeding of patients suffering from dementia: a focus group study of hospital staff responses to conflicting principles. Nurs. Ethics 9,599–611 (2002).
  • Fairbairn G. Ending lives: age, autonomy and the quality of life. In: Ageing, Autonomy and Resources. Lesser AH (Ed.). Ashgate, Aldershot, UK and Brookfield, USA, 88–115 (1999).
  • Post SG. Infanticide and geronticide. Ageing Soc. 10(3), 317–328 (1990).
  • Walter JJ, Shannon TA. Quality of Life: the New Medical Dilemma. Paulist Press, NY, USA (1990).
  • Bond J, Corner L. Researching dementia: are there unique methodological challenges for health services research? Ageing Soc. 21, 95–116 (2001).
  • Albert SM, Logsdon RG (Eds). Assessing Quality of Life in Alzheimer's disease. Springer Publishing Company, NY, USA (2000).
  • ••Contains a number of highly informativearticles both about the development of quality of life assessments and, more conceptually, about of quality of life itself.
  • Lawton MP. Quality of life in Alzheimer's disease research. Alzheimer. Dis. Assoc.Disord 11 (Suppl. 6), 91–99 (1997).
  • Struttmann T, Fabro M, Romieu G etal Quality-of-life assessment in the old using the WHOQOL 100: differences between patients with senile dementia and patients with cancer. Int. Psychogetiab: 11(3), 273–279 (1999).
  • Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing Quality of life in older adults with cognitive impairment. fiychosom. Med. 64(3), 510–519 (2002).
  • Bond J. Quality of life for people with dementia: approaches to the challenge of measurement. Ageing Soc. 19,561–579 (1999).
  • •One of the few papers to consider the philosophical approaches to measuring quality of life.
  • O'Boyle CA, McGee H, Joyce CRB. Quality of life: assessing the individual. In: Advances in Medical Sociology Fitzpatrick R (Ed.). JAI Press, CT, USA, 159–180 (1994).
  • Bond J. Quality of life for people with dementia: approaches to the challenge of measurement. Ageing Soc. 19,561–579 (1999).
  • Selai CE, Trimble MR, Rossor M, Harvey RJ. Assessing quality of life in dementia: preliminary psychometric testing of the Quality of Life Assessment Schedule (QOLAS). Neumpsychological Rehabilitation 11,219–243, (2001).
  • Gill TM. Quality of life assessment: values and pitfalls. R. Soc. Med. 88,680–682 (1995).
  • Selai CE, Trimble MR, Rossor MN, Harvey RJ. The Quality of Life Assessment Schedule (QOLAS) - a new method for assessing quality of life in dementia. In: AffeZcirg Quality olLife inAlzheimer, Disease. Albert SM, Logsdon RG (Eds). Springer Publishing Company, NY, USA, 31–48 (2000).
  • Jennings B. A life greater than the sum of its sensations: ethics, dementia and the quality of life. In: Assessing Quality of Life in Alzheimer's Disease. Albert SM, Logsdon RG (Eds). Springer Publishing Company, NY, USA, 165–178 (2000).
  • Jennings B. A life greater than the sum of its sensations: ethics, dementia and the quality of life. In: Assessing Quality of Life in Alzheimer's Disease. Albert SM, Logsdon RG (Eds). Springer Publishing Company, NY, USA, 169–170 (2000).
  • Jennings B. A life greater than the sum of its sensations: ethics, dementia and the quality of life. In: Assessing Quality of Life in Alzheimeti disease. Albert SM, Logsdon RG (Eds). Springer Publishing Company, NY, USA, 168 (2000).
  • Griffin JP. Well-Being: its Meaning, Measumment and Moral Importance. Clarendon Press, Oxford, UK (1986).
  • •Still the most commonly cited philosophical text in this area.
  • Jennings B. A life greater than the sum of its sensations: ethics, dementia and the quality of life. In: Assessing Quality of Life in Alzheimeti disease. Albert SM, Logsdon RG (Eds). Springer Publishing Company, NY, USA, 171 (2000).
  • Ibid
  • Brock D. Quality of life measures in healthcare and medical ethics. In: The Quality of Life. Nussbaum M, Sen A (Eds). Clarendon Press, Oxford, UK, 95–132 (1993).
  • •Useful paper commenting on theories of quality of life and finking them to our understanding of other issues in medical ethics.
  • Jennings B. A life greater than the sum of its sensations: ethics, dementia and the quality of life. In: Assessing Quality of Life in Alzheimer's Disease. Albert SM, Logsdon RG (Eds). Springer Publishing Company, NY, USA, 172 (2000).
  • Brock D. Quality of life measures in healthcare and medical ethics. In: The Quality of Life. Nussbaum M, Sen A (Eds). Clarendon Press, Oxford, UK, 97 (1993).
  • Brock D. Quality of life measures in healthcare and medical ethics. In: The Quality of Life. Nussbaum M, Sen A (Eds). Clarendon Press, Oxford, UK, 98 (1993).
  • Moore A, Hope T, Fulford KWM. Mild mania and well-being. Philosophy Psychiatry & Ptychology 1(3), 165–177 (1994).
  • Rabins P. Measuring Quality of life in persons with dementia. int. PTchogetiatE 12\(Suppl. 1), 47–49 (2000).
  • Volicer L, Hurley AC, Camberg L. A model of psychological well-being in advanceddementia. In: Assessing Quality of Life in Alzheimer's Disease. Albert SM, Logsdon RG (Eds). Springer Publishing Company, NY, USA, 111–124 (2000).
  • Hughes JC. Ethics and the antidementia drugs. Int. J Geriatc Psychiatry 15,538–543 (2000).
  • Department of Health. Reference Guide to Consent for Examination or Treatment. Department of Health, London, UK (2001).
  • Dworkin R Lifis Dominion. An Argument about Abortion and Euthanasia. Harper Collins, London, UK, 201 (1993).
  • Dresser R. Dworkin on dementia: elegant theory, questionable policy. Hastings Cent. Rep. 25,32–38 (1995).
  • Hope T Personal identity and psychiatric illness. In: Philosophy Psychology and Psychiatry Griffiths AP (Ed.). Cambridge University Press, Cambridge, UK, 131–143 (1995).
  • Jaworska A. Respecting the margins of agency: Alzheimer's patients and the capacity to value. Philos. Public Aff 28, 105–138 (1999).
  • Bond J. Sociological perspectives. In: A Handbook of Dementia Care. Cantley C (Ed.). Open University Press, Buckingham and Philadelphia, USA, 44–61 (2001).
  • Hughes JC. Views of the person with dementia. J Med. Ethics. 27,86–91 (2001).
  • •One of a few papers specifically to consider personhood in dementia.
  • Brock D. Quality of life measures in healthcare and medical ethics. In: The Quality of Life. Nussbaum M, Sen A (Eds). Clarendon Press, Oxford, UK, 98 (1993).
  • Schermer M. In search of the good life for demented elderly. Med. Healthcam Philos. 6(1), 35–44 (2003).
  • Bond J, Corner L. Researching dementia: are there unique methodological challenges for health services research? Ageing Soc. 21, 95–116 (2001).
  • Kitwood T, Bredin K. Towards a theory of dementia care: personhood and well-being. Ageing Soc. 12,269–287 (1992).
  • •Classic paper in establishing the links between personhood in dementia and well-being.
  • Whitehouse PJ, Rabins P. Quality of life and dementia. Alzheimer. Dis. Assoc. Disoml. 6,135–138 (1992).
  • Whitehouse PJ. Quality of life: future directions. In: Assessing Quality of life in Alzheimer, Disease. Albert SM, Logsdon RG (Eds). Springer Publishing Company NY, USA, 179–184 (2000).

Websites

  • Ready RE, Ott BR. Quality of life measures for dementia. Health Qual Life. Outcomes 1(1), 11 (2003). Available online at: www.hqlo.com/content/1/1/11 (Accessed 31st May, 2003).
  • ••Important on-line resource with an up-to-date review of assessment schedules for quality of life and some well-informed comments about future developments.
  • World Health Organization. The structure of the WHOQOL-100. www.who.indevidence/assessment-instruments/Q0L/q15.htm (Accessed 21st May, 2003).
  • World Health Organization. Introducing the WHOQOL instruments. www.whaindevidence/assessment-instruments/Q0L/q11.htm (Accessed 21st May, 2003).
  • •Useful to have the World Health Organization definition of quality of life and access to a description of this well researched instrument. It is not, however, particularly well-established as a tool in dementia care.
  • Department of Health. Reference Guide to Consent for Examination or Treatment www.doh.gov.uk/consent/refguide/pdf (Accessed 31st May, 2003).
  • Policy, Ethics and Life Sciences Research Institute. Newcastle Symposium on the Goals of Ageing Research, April 2001. www.peals.ncl.ac.uldageing/index.htm (Accessed 29th May, 2003).
  • •Several papers in this symposium are relevant and mention quality of life but particularly the papers in Session 3, entitled 'Priorities and quality of life' by Midgley and Lesser.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.