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 the role and practice of this professional group in palliative care. This is not an exhaustive list. References were selected for their relevance, and have not been formally reviewed for quality.
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
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
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
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
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. Review
Chapman DG, Toseland RW. Effectiveness of advanced illness care teams for nursing home residents with dementia. Soc Work. 2007 Oct;52(4):321-9
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.
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. Review
Finucane T. Colleen Christmas C, Travis K. Tube Feeding in Patients With Advanced Dementia A Review of the Evidence JAMA 1999 ;282:1365-1370
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
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
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
Kettl P. Helping families with end-of-life care in Alzheimer's disease. J Clin Psychiatry. 2007 Mar;68(3):445-50. Review
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
Li D, Puntillo K, Miaskowski C. A Review of Objective Pain Measures for Use With Critical Care Adult Patients Unable to Self-Report. The Journal of Pain, 2008 9 (1):2-10
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
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
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
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
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
Pinderhughes S and Morrison S. Evidence- Based Approach to Management of Fever in Patients with End-Stage Dementia. Journal of Palliative Medicine. 2003 6(3):351-354
Roger K 2006. A literature review of palliative care, end of life and dementia Palliative and Supportive Care 4 295-303
Sampson E, Ritchie C, Lai, Ret al. A systematic review of the scientific evidence for the efficacy of a palliative approach in advanced dementia. International Psychogeriatrics 2005. 17(1): 31-40
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
Schulz R, Mendelsohn AB, Haley WE, Mahoney D, Allen RS, Zhang S, Thompson L, Belle SH; Resources for Enhancing Alzheimer's Caregiver Health 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
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
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
van Herk R. van Dijk M. Baar FP. et al. Observation scales for pain assessment in older adults with cognitive impairments or communication difficulties. Nursing Research. 2007. 56(1):34-43
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
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
Zwakhalen SM. Hamers JP. Abu-Saad HH. Et al. Pain in elderly people with severe dementia: a systematic review of behavioural pain assessment tools. BMC Geriatrics. 2006. 6:3
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