The end of life care received by patients with advanced dementia and their carers is of increasing importance as the incidence of dementia is set to rise in the next 30 years. Currently, inappropriate admissions to hospital are common in the UK and patients are less likely to be referred to palliative care services, receive less pain control but undergo more invasive interventions compared to their cognitively intact counterparts. Patients and families are seldom informed of the terminal nature of dementia and advance care planning discussions are rare. The aim of this study was to improve the understanding of end of life care needs for this patient group and their carers, and to use this information to devise an intervention to improve care. Qualitative data were obtained from relatives of 20 patients with advanced dementia admitted to an inner London teaching hospital acute National Health Service (NHS) Trust and 21 health care professionals involved in their care. Framework analysis was used to analyse the transcripts. The results showed that participants’ understanding of dementia and its likely progress was poor. Provision of information regarding the future was rare despite high information needs. Attitudes regarding end of life care were often driven by the participant’s illness awareness. These attitudes served to guide the decision making process and appear to be a major barrier to the provision of more appropriate care. Implications for patient care are discussed and suggestions for future interventions are made.
Addington-Hall, J. ( 1998). Reaching out; specialist palliative care for adults with non-malignant diseases. National Council for Hospice and Specialist Palliative Care Services.
2.
Caplan, G.A., Meller, A., Squires, B., Chan, S., & Willett, W. ( 2006). Advance care planning and hospital in the nursing home . Age and Ageing, 35, 581-585.
3.
Caron, C.D., Griffith, J., & Arcand, M. ( 2005). End-of-life decision making in dementia: The perspective of family caregivers. Dementia, 4, 113-136.
4.
Chang, E., Hancock, K., Harrison, K., Daly, J., Johnson, A., Easterbrook, S., Noel, M., Luhr-Taylor, M., & Davidson, P.M. (2005). Palliative care for end-stage dementia: a discussion of the implications for education of health care professionals . Nurse Education Today, 25, 326-32.
5.
Connolly, M.J. ( 2001). The disadvantaged dying - Care of people with non-malignant conditions. In Kinghorn, S. , Gamblin, R. (Eds.) Palliative Nursing. Bringing comfort and hope (pp. 231-244). Edinburgh: Baillière Tindall.
6.
Davies, E., & Higginson, I.J. (2004) Palliative Care: The Solid Facts. Copenhagen: WHO. Retrieved December 3, 2009 from http://www.euro.who.int/document/E82931
7.
Engel, S.E., Kiely, D.K. & Mitchell, S.L. ( 2006). Satisfaction with end of life care for nursing home residents with advanced dementia. Journal of American Geriatric Society , 54, 1567-1572.
8.
Fabiszewski K.J., Volicer B., & Volicer, L. ( 1990). Effect of antibiotic treatment on outcome of fevers in institutionalized Alzheimer patients. Journal of American Medical Association, 263, 3168-72.
9.
Ferrell, B.A. ( 1995). Pain evaluation and management in the nursing home. Annals of Internal Medicine, 123, 681-695.
10.
Fine, R.L. ( 2006). Ethical issues in artificial nutrition and hydration . Nutrition in Clinical Practice, 21, 118-25.
11.
Finucane, T.E., Christmas, C., & Travis, K. ( 1999). Tube feeding in patients with advanced dementia: A review of the evidence. Journal of American Medical Association , 282, 1365-70.
12.
Forbes, S., Bern-Klug, M., & Gessert, C. ( 2000). End-of-life decision making for nursing home residents with dementia. Journal of Nursing Scholarship, 32, 251-258.
13.
Fox, P.L., Raine, P., & Jadad, A.R. ( 1999). Prevalence and treatment of pain in older adults in nursing homes and other long-term care institutions: A systematic review . Canadian Medical Association Journal, 160, 329-333.
14.
Fuchs-Lacelle S., & Hadjistavropoulos, T. (2004). Development and preliminary validation of the pain assessment checklist for seniors with limited ability to communicate (PACSLAC). Pain Management Nursing, 5, 37-49.
15.
Gillick, M.R. ( 2000). Rethinking the role of tube feeding in patients with advance dementia. New England Journal of Medicine, 342, 206-210.
16.
Hanrahan, P., Raymond, M., McGowan, E., & Luchins, D.J. ( 1999). Criteria for enrolling dementia patients in hospice: A replication. American Journal of Hospice Palliative Care , 16, 395-400.
17.
Helme, R.D., & Gibson, S.J. ( 2001). The epidemiology of pain in elderly people. Clinics in Geriatric Medicine, 17, 417-431.
18.
House of Commons Health Committee. (2005). House of Commons Health Committee Report on Palliative Care (Fourth Report of Session 2003-4; Volume 1).
19.
Lefebvre-Chapiro, S. ( 2001). The Doloplus scale - evaluating pain in the elderly . European Journal of Palliative Care, 8, 191-193.
20.
Luddington, L., Cox, S., Higginson, I., & Livesley, B. ( 2001). The need for palliative care for patients with non-cancer diseases: a review of the evidence. International Journal of Palliative Nursing, 7, 221-226.
21.
Lunney, J.R., Lynn, J., Foley, D.S., Lipson, S., & Guralnick, J.M. (2003). Patterns of functional decline at the end of life. The Journal of the American Medical Association, 289, 2387-2392.
22.
Mace, N.L., & Rabin, P.V. ( 1991) The 36-hour Day: A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss in Later Life. Baltimore, MD: The Johns Hopkins University Press.
23.
Medical Research Council. (2000). A Framework for development and evaluation of RCTs for complex interventions to improve health. London: MRC.
24.
Mitchell, S.L., Kiely, D.K., & Hamel, M.B. ( 2007). Dying with advanced dementia in the nursing home . Archives of Internal Medicine, 164, 321-326.
25.
Mitchell, S., Kiely, D., & Lipsits, L.A. ( 1997). The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment . Archives of Internal Medicine, 157, 327-332.
26.
Monteleoni C. & Clark, E. ( 2004). Using rapid-cycle quality improvement methodology to reduce feeding tubes in patients with advanced dementia: before and after study. British Medical Journal, 329, 491-494.
27.
Morrison, R.S., & Siu, A.L. ( 2000). Survival in end-stage dementia following acute illness . Journal of American Medical Association, 284, 47-52.
28.
Moss, M., Braunschweig, H., & Rubinstein, R. (2002). Terminal care for nursing home residents with dementia (ethics). Alzheimer’s Care Quarterly, 3, 233-249.
29.
Murray, S.A., Kendall, M., Boyd, K., & Sheikh, A. ( 2005). Illness trajectories and palliative care. British Medical Journal, 330, 1007-1011.
30.
National Audit Office.End of Life Care Improvement Programme. ( 2005). Retrieved September 15, 2005, from http://www.nao.org.uk/guidance/index.htm.
31.
National Council of Palliative Care (NCPC)/NHS End of Life Care Programme . (2007). Retrieved October 3, 2007 from http://www.ncpc.org.uk/.
32.
National Hospice Organisation - now NHPCO. ( 2007). Retrieved September 23, 2007 from http://www.nhpco.org/templates/1/homepage.cfm.
33.
Ory, M.G., Hoffman, R.R., Yee, J.L., Tennstedt, S. & Schulz, R. ( 1999). Prevalence and impact of care giving: a detailed comparison between dementia and non-dementia caregivers. Gerontologist , 39, 177-185.
Rice, K., & Warner, N. ( 1994). Breaking the bad news: what do psychiatrists tell patients with dementia about their illness? International Journal of Geriatric Psychiatry, 9, 467-71.
36.
Ritchie J., & Spencer L. ( 1994). Qualitative data analysis for applied policy research . In: Ryman A, Burgess AG (Eds.) Analysing qualitative data . London: Routledge.
37.
Sachs, G.A., Shega, J.W., & Cox-Hayley, D. (2004). Barriers to excellent end-of-life care for patients with dementia. Journal of General Internal Medicine, 19, 1057-1063.
38.
Sampson, E.L., Gould, V., Lee, D., & Blanchard, M.R. (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, 187-9.
39.
Sampson, E.L., Ritchie, C.W., Lai, R., Raven, P.W., & Blanchard, M.R. (2005). A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia. International Psychogeriatrics, 17, 31-40.
40.
Schonwetter, R.S., Han, B., Small, B.J., Martin, B., Tope, K., & Haley, W.E. ( 2003). Predictors of six-month survival among patients with dementia: an evaluation of hospice Medicare guidelines. American Journal of Hospice Palliative Care, 20, 105-13.
41.
Shuster, J.L. Jr. ( 2000). Palliative care for advanced dementia. Clinical Journal of Geriatric Medicine, 16, 373-386.
42.
Volicer, L. ( 2001). Management of severe Alzheimer’s disease and end-of-life issues. Clinics in Geriatric Medicine, 17, 377-391.
43.
Vollmann, J. ( 2000). Rethinking the role of tube feeding in advanced dementia . The New England Journal of Medicine, 342, 1755-1756.
44.
Zwakhalen, S.M.G., Hamers, J.P.H., Huijer Abu-Saad, H., & Berger, M.P.F. (2006). Pain in elderly people with severe dementia: A systematic review of behavioural pain assessment tools . MBC Geriatrics, 6, 3.
