Caring for Patients Dying with Dementia: Challenges in Subacute Care in Australia

Australian Bureau of Statistics. 3201.0 — Population by age and sex, Australian states and territories, June 2010. Canberra: author; 2010.

Thompson G. , McClement S. , Daeninck P. “Changing lanes”: facilitating the transition from curative to palliative care. J Palliat Care 2006; 22(2): 91–98.

Bauer M. , Fitzgerald L. , Haesler E. Hospital discharge planning for frail older people and their family. Are we delivering best practice? A review of the evidence. J Clin Nurs 2009; 18(18): 2539–2546.

Shepperd S. , McClaran J. , Phillips C.O. Discharge planning from hospital to home. Cochrane Database Syst Rev 2010; 1: CD000313.

Hunt S. Older adulthood. In: Crisp J. , Taylor C. , editors. Potter and Perry's fundamentals of nursing. 3rd ed. Chatswood: Elsevier Australia; 2009.

Nepal B. , Ranmuthugala G. , Brown L. Modelling costs of dementia in Australia: evidence, gaps, and needs. Aust Health Rev 2008; 32(3): 479–487.

Australian Institute of Health and Welfare. Dementia in Australia: national data analysis and development. Canberra: author; 2007. Catalogue no. AGE 53.

Access Economics. Keeping dementia front of mind: incidence and prevalence 2009–2050. Scullin (ACT): Alzheimer's Australia; 2009.

Hertogh C.M. Advance care planning and the relevance of a palliative care approach in dementia. Age Ageing 2006; 35(6): 553–555.

Sampson E.L. , Thuné-Boyle I. , Kukkastenvehmas R. Palliative care in advanced dementia: a mixed methods approach for the development of a complex intervention. BMC Palliat Care 2008; 7: 8.

Michel J. , Pautex S. , Zekry D. End-of-life care of persons with dementia. J Gerontol A Biol Sci Med Sci 2002; 57(10): M640–M644.

Gove D. , Sparr S. , Dos Santos Bernardo A.M. Recommendations on end-of-life care for people with dementia. J Nutr Health Aging 2010; 14(2): 136–139.

Birch D. , Draper J. A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. J Clin Nurs 2008; 17(9): 1144–1163.

Bloomer M. , Moss C. , Cross W. Problems associated with care at the end of life in acute hospitals. End of Life J [Internet] 2011 [cited 2012 June 27]; 1(1). http://endoflifejournal.stchristo-phers.org.uk/professional-issues/problems-associated-with-care-at-the-end-of-life-in-acute-hospitals

Aleksandric V. , Hanson S. Health system reform and care at the end of life: a guidance document. Canberra: Palliative Care Australia; 2010.

Department of Health, State Government of Victoria, Australia. Sub-acute care services. Melbourne: author; 2011.

Digby R. , Moss C. , Bloomer M. Transferring from an acute hospital and settling into a subacute facility: the experience of patients with dementia. Int J Older People Nurs 2011; 7(1): 57–64.

Porock D. , Parker Oliver D. Recognizing dying by staff in long-term care. J Hosp Palliat Nurs 2007; 9(5): 270–278.

Murphy D. , Bolger M. , Agar R. Best practice for care in the last days of life. Work Older People 2007; 11(3): 25–28.

Chan R. , Webster J. End-of-life care pathways for improving outcomes in caring for the dying. Cochrane Database Syst Rev 2010; 1: CD008006.

Chang E. , Hancock K. , Harrison K. Palliative care for end-stage dementia: a discussion of the implications for education of health care professionals. Nurs Educ Today 2005; 25(4): 326–332.

Grbich C. , Maddocks I. , Parker D. Identification of patients with non-cancer diseases for palliative care services. Palliat Supp Care 2002; 3: 5–14.

Skilbeck J.K. , Payne S. End of life care: a discursive analysis of specialist palliative care nursing. J Adv Nurs 2005; 51(4): 325–334.

de Vries K. , Sque M. , Bryan K. Variant Creutzfeld-Jakob disease: need for mental health and palliative care team collaboration. Int J Palliat Nurs 2004; 9(12): 512–520.

Aronheim J. , Morrison S. , Morris J. Palliative care in advanced dementia: a randomized controlled trial and descriptive analysis. J Palliat Med 2000; 3(3): 265–273.

Bloomer M. , Morphet J. , O'Connor M. Nursing care of the family before and after a death in the ICU — an exploratory pilot study. Aust Crit Care. Forthcoming 2012.

Bloomer M. , Lee S. , O'Connor M. End of life clinician-family communication in ICU: a retrospective observational study — implications for nursing. Aust J Adv Nurs 2010; 28(2): 17–23.

Tilden V. , Thompson S. Policy issues in end-of-life care. J Prof Nurs 2009; 25(6): 363–368.

Grady P. At life's end, many patients are denied a peaceful passing. New York Times. May 29, 2000.

Le B. , Watt J. Care of the dying in Australia's busiest hospital: benefits of palliative care consultation and methods to enhance access. J Palliat Med 2010; 13(7): 855–860.

Robinson L. , Hughes J. , Daley S. End-of-life care and dementia. Reviews Clin Geront 2005; 15(2): 135–148.

Hancock K. , Clayton J.M. , Parker S.M. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med 2007; 21(6): 507–517.

Gardiner C. , Cobb M. , Gott M. Barriers to providing palliative care for older people in acute hospitals. Age Ageing 2011; 40(2): 233–238.

Birch D. , Stokoe D. Caring for people with end-stage dementia. Nurs Older People 2010; 22(2): 31–36.

Schachter L. Talking about death, dying, and bereavement with terminally ill patients and their caregivers. Arch Int Med 2005; 165(12): 1437.

Miracle V.A. Vulnerable populations in research. Dimens Crit Care Nurs 2010; 29(5): 242–245.

National Health and Medical Research Council. An ethical framework for integrating palliative care principles into the management of advanced chronic or terminal conditions. Canberra: author; 2011.

National Health and Medical Research Council. Living well with an advanced chronic or terminal condition: how ethics helps. A guide for patients, family and carers. Canberra: author; 2011.

Roger K.S. A literature review of palliative care, end of life, and dementia. Palliat Support Care 2006; 4(3): 295–303.

Bloomer M. , Tan H. , Lee S. End of life care: the importance of advance care planning. Aust Fam Physician 2010; 39(10): 734–737.

Azoulay E. , Pochard F. , Chevret S. Half the family members of intensive care unit patients do not want to share in the decision-making process: a study in 78 French intensive care units. Crit Care Med 2004; 32(9): 1832–1838.

Gries C.J. , Curtis J.R. , Wall R.J. Family member satisfaction with end-of-life decision making in the ICU. Chest 2008; 133(3): 704–712.

Payne S. , Burton C. , Addington-Hall J. End-of-life in acute stroke care: a qualitative study of the experiences and preferences of patients and their families. Palliat Med 2009; 24(2): 146–153.

Thompson B.T. , Cox P.N. , Antonelli M. Challenges in end-of-life care in the ICU: statement of the 5th international consensus conference in critical care: Brussels, April 2003. Executive summary. Crit Care Med 2004; 32(8): 1781–1784.

Seal M. Patient advocacy and advance care planning in the acute hospital setting. Aust J Adv Nurs 2007; 24(4): 29–36.

Bezzina A.J. Prevalence of advance care directives in aged care facilities of the northern Illawarra. Emerg Med Australas 2009; 21(5): 379–385.

Johnstone M. , Kanitsaki O. Ethics and advance care planning in a culturally diverse society. J Transcult Nurs 2009; 20(4): 405–416.

Lehto R. , Stein K. Death anxiety: an analysis of an evolving concept. Res Theory Nurs Pract 2009; 23(1): 23–41.

Robbins I. , Lloyd C. , Carpenter S. Staff anxieties about death in residential settings for elderly people. J Adv Nurs 1992; 17(5): 548–553.

Deffner J.M. , Bell S.K. Nurses’ death anxiety, comfort level during communication with patients and families regarding death, and exposure to communication education: a quantitative study. J Nurs Staff Dev 2005; 21(1): 19–25.

Payne S.A. , Dean S.J. , Kalus C. A comparative study of death anxiety in hospice and emergency nurses. J Adv Nurs 1998; 28(4): 700–706.

Hughes J.C. , Robinson L. , Volicer L. Specialist palliative care in dementia: specialised units with outreach and liaison are needed. BMJ 2005; 330(7482): 57–58.

Harris D. Forget me not: palliative care for people with dementia. Postgrad Med J 2007; 83(980): 362–366.

Coleman A.M. End-of-life issues in caring for patients with dementia: the care for palliative care in management of terminal dementia. Am J Hosp Palliat Care 2012; 29(1): 9–12.

Aminoff B.Z. , Adunsky A. Their last 6 months: suffering and survival of end-stage dementia patients. Age Ageing 2006; 35(6): 597–601.

Shega J. , Tozer C. Improving the care of people with dementia at the end of life: the role of hospice and the US experience. Dementia 2009; 8(3): 377–389.

Sachs G.A. , Shega J.W. , Cox-Hayley D. Barriers to excellent end-of-life care for patients with dementia. J Gen Intern Med 2004; 19(10): 1057–1063.

Mitchell S.L. , Teno J.M. , Kiely D.K. The clinical course of advanced dementia. N Engl J Med 2009; 361(16): 1529–1538.

Gaspard G. , Roberts D. Palliative dementia care: a blended model. Can Nurs H 2009; 20(1): 21–24.

Ellershaw J. , Wilkinson S. Care of the dying: a pathway to excellence. Oxford: Oxford University Press; 2011.