These articles and texts have been identified during the development of the People with Dementia page by the authors and reviewers. They provide additional information on issues and considerations for those with dementia needing palliative care. This is not an exhaustive list. References were selected for their relevance, and have not been formally reviewed for quality.
2008
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 May;17(9):1144-63.
Li D, Puntillo K, Miaskowski C. A review of objective pain measures for use with critical care adult patients unable to self-report. J Pain. 2008 Jan;9(1):2-10. Epub 2007 Nov 5.
2007
Chapman DG, Toseland RW. Effectiveness of advanced illness care teams for nursing home residents with dementia. Soc Work. 2007 Oct;52(4):321-9.
de Boer ME, Hertogh CM, Dröes RM, Riphagen II, Jonker C, Eefsting JA. Suffering from dementia - the patient's perspective: a review of the literature. Int Psychogeriatr. 2007 Dec;19(6):1021-39. Epub 2007 Aug 30.
Formiga F, Olmedo C, López-Soto A, Navarro M, Culla A, Pujol R. Dying in hospital of terminal heart failure or severe dementia: the circumstances associated with death and the opinions of caregivers. Palliat Med. 2007 Jan;21(1):35-40.
Kaasalainen S, Brazil K, Ploeg J, Martin LS. Nurses' perceptions around providing palliative care for long-term care residents with dementia. J Palliat Care. 2007 Autumn;23(3):173-80.
Modi SC, Whetstone LM, Cummings DM. Influence of patient and physician characteristics on percutaneous endoscopic gastrostomy tube decision-making. J Palliat Med. 2007 Apr;10(2):359-66.
van der Steen JT, Mitchell SL, Frijters DH, Kruse RL, Ribbe MW. Prediction of 6-month mortality in nursing home residents with advanced dementia: validity of a risk score. J Am Med Dir Assoc. 2007 Sep;8(7):464-8. Epub 2007 Aug 13.
van Herk R, van Dijk M, Baar FP, Tibboel D, de Wit R. Observation scales for pain assessment in older adults with cognitive impairments or communication difficulties. Nurs Res. 2007 Jan-Feb;56(1):34-43.
2006
Cervo FA, Bryan L, Farber S. To PEG or not to PEG: a review of evidence for placing feeding tubes in advanced dementia and the decision-making process. Geriatrics. 2006 Jun;61(6):30-5.
Herr K, Bjoro K and Decker S. Tools for Assessment of Pain in Nonverbal Older Adults with Dementia: A State-of-the-Science Review. Journal of Pain and Symptom Management 2006. 31(2):170-192.
Kettl P. Helping families with end-of-life care in Alzheimer's disease. J Clin Psychiatry. 2007 Mar;68(3):445-50.
Kiely DK, Volicer L, Teno J, Jones RN, Prigerson HG, Mitchell SL. The validity and reliability of scales for the evaluation of end-of-life care in advanced dementia. Alzheimer Dis Assoc Disord. 2006 Jul-Sep;20(3):176-81.
Roger KS. A literature review of palliative care, end of life, and dementia. Palliat Support Care. 2006 Sep;4(3):295-303.
Schulz R, Boerner K, Shear K, Zhang S, Gitlin LN. Predictors of complicated grief among dementia caregivers: a prospective study of bereavement. Am J Geriatr Psychiatry. 2006 Aug;14(8):650-8.
Zwakhalen SMG, Hamers JPH, Abu-Saad HH, Berger MPF. Pain in elderly people with severe dementia: a systematic review of behavioural pain assessment tools. BMC Geriatr. 2006 Jan 27;6:3.
2005
Allen RS, Burgio LD, Fisher SE, Michael Hardin J, Shuster JL Jr. Behavioral characteristics of agitated nursing home residents with dementia at the end of life. Gerontologist. 2005 Oct;45(5):661-6.
Bekelman DB, Black BS, Shore AD, Kasper JD, Rabins PV. Hospice care in a cohort of elders with dementia and mild cognitive impairment. J Pain Symptom Manage. 2005 Sep;30(3):208-14.
Modi S, Moore C, Shah K; National Hospice Organization. Which late-stage Alzheimer's patients should be referred for hospice care? J Fam Pract. 2005 Nov;54(11):984-6. No abstract available.
Pautex S, Herrmann F, Le Lous P, Fabjan M, Michel JP, Gold G. Feasibility and reliability of four pain self-assessment scales and correlation with an observational rating scale in hospitalized elderly demented patients. J Gerontol A Biol Sci Med Sci. 2005 Apr;60(4):524-9.
Sampson EL, Ritchie CW, Lai R, Raven PW, Blanchard MR. A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia. Int Psychogeriatr. 2005 Mar;17(1):31-40.
2004
Closs SJ, Barr B, Briggs M, Cash K, Seers K. A comparison of five pain assessment scales for nursing home residents with varying degrees of cognitive impairment. J Pain Symptom Manage. 2004 Mar;27(3):196-205.
2003
Manfredi PL, Breuer B, Meier DE, Libow L. Pain assessment in elderly patients with severe dementia. J Pain Symptom Manage. 2003 Jn;25(1):48-52
Pinderhughes ST, Morrison RS. Evidence-based approach to management of fever in patients with end-stage dementia. J Palliat Med. 2003 Jun;6(3):351-4.
Schulz R, Mendelsohn AB, Haley WE, Mahoney D, Allen RS, Zhang S, Thompson L, Belle SH; Resources for Enhancing Alzheimer's Caregiver Health (REACH) Investigators. End-of-life care and the effects of breavement on family caregivers of persons with dementia. N Engl J Med. 2003 Nov 13;349(20):1936-42.
Shega JW, Hougham GW, Stocking CB, Cox-Hayley D, Sachs GA. Barriers to limiting the practice of feeding tube placement in advanced dementia. J Palliat Med. 2003 Dec;6(6):885-93.
2002
The AM, Pasman R, Onwuteaka-Philipsen B, Ribbe M, van der Wal G. Withholding the artificial administration of fluids and food from elderly patients with dementia: ethnographic study. BMJ. 2002 Dec 7;325(7376):1326.
2001
Volicer L, Hurley AC, Blasi ZV. Scales for evaluation of End-of-Life Care in Dementia. Alzheimer Dis Assoc Disord. 2001 Oct-Dec;15(4):194-200.
2000
Ahronheim JC, Morrison RS, Morris J, Baskin S, Meier DE. Palliative care in advanced dementia: a randomized controlled trial and descriptive analysis. J Palliat Med. 2000 Fall;3(3):265-73.
Morrison RS, Siu AL. A comparison of pain and its treatment in advanced dementia and cognitively intact patients with hip fracture. J Pain Symptom Manage. 2000 Apr;19(4):240-8.
van der Steen JT, de Graas T, Ooms ME, van der Wal G, Ribbe MW. When should physicians forgo curative treatment of pneumonia in patients with dementia? Using a guideline for decision-making. West J Med. 2000 Oct;173(4):274-7.
1999
Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA. 1999 Oct 13;282(14):1365-70.
Relevant Journals and online books
Dementia - The International Journal of Social Research and Practice Dementia
Acts as a major forum for social research of direct relevance to improving the quality of life and quality of care for people with dementia and their families.
Journal of Dementia Care
A multi-disciplinary, bi-monthly journal aimed at all professionals working with people with dementia. It recognises that professional carers working with people with dementia have their own special demands which deserve a specialist publication.
American Journal of Alzheimer's Disease and Other Dementias (AJADD)
A journal for and by professionals on the frontlines of Alzheimer's care, dementia, and clinical depression.
Dementia – The Caring Experience
This is a book that provides carers of people with dementia with information, advice and support. The carer information, stories and ideas in this book come directly from carers and service providers throughout Australia.
This page was created on 16 May 2008 and is due for review in May 2010
Last updated 6 July 2009