The Role and Timing of Palliative Care in Supporting Persons with Intellectual Disability and Advanced Dementia

Journal of Applied Research in Intellectual Disabilities

Volumn 24, Issue 3, 2011, Pages 189-198

  Mccarron, Mary ^a   Mccallion, Philip ^b   Fahey Mccarthy, Elizabeth ^a   Connaire, Kevin ^c  

^a TRINITY COLLEGE DUBLIN   (Ireland)

^b STATE UNIVERSITY OF NEW YORK   (United States)

^c St Francis Hospice ^*  (Ireland)

Author keywords

Dementia; Focus group; Intellectual disability; Palliative care

Indexed keywords

EID: 79954548556     PISSN: 13602322     EISSN: 14683148     Source Type: Journal    
DOI: 10.1111/j.1468-3148.2010.00592.x     Document Type: Article

References (30)

1. Abbey J. (2003) Ageing, dementia and palliative care. In: Palliative Care Nursing: A Guide to Practice, 2nd edn (eds M. O'Connor & S. Aranda), pp. 326-332. Radcliffe Medical Press, Abingdon.
2. Blackman N. & Todd S. (2005) Caring for People with Learning Disabilities who are Dying. Worth Publishing Ltd, London.
3. Botsford A. & Force L. T. (2000) End of Life Care: A Guide for Supporting Older People with Intellectual Disabilities and Their Families. NYSARC, Albany, NY.
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, 326-332.
5. Coventry P. A., Grande G. A., Richards D. A. & Todd C. J. (2005) Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening diseases: a systematic review. Age and Ageing 34, 218-227.
6. Davies E. & Higginson I. J. (2004) Better Palliative Care for Older People. World Health Organization, Copenhagen.
7. Department of Health and Children (2001) Report of the National Advisory Committee on Palliative Care. Stationary Office, Dublin.
8. Downs M., Small N. & Froggatt K. (2006) Explanatory models of dementia: links to end-of-life care. International Journal of Palliative Nursing 12, 209-213.
9. Evans B. (2002) Improving palliative care in the nursing home: from a dementia perspective. Journal of Hospice and Palliative Nursing 4, 91-99.
10. Jones A. & Tuffrey-Wijne I. (2004) Positive Approaches to Palliative Care Workbook. British Institute for Learning Disabilities, Worcestershire.
11. Krueger R. & Casey M. A. (2000) Focus Groups: A Practical Guide for Applied Research, 3rd edn. Sage Publications Inc., London.
12. Mahon M. M. & Sorrell J. M. (2008) Palliative care for people with Alzheimer's disease. Nursing Philosophy 9, 110-120.
13. McCallion P. & McCarron M. (2004) Intellectual disabilities and dementia. In: Living with Grief: Alzheimer's Disease (ed. K. Doka), pp. 67-84. Hospice Foundation of America, Washington, DC.
14. McCarron M. & McCallion P. (2007) End-of-life care challenges for persons with intellectual disability and dementia: making decisions about tube feeding. Intellectual and Developmental Disabilities 45, 128-131.
15. McCarron M., Fahey-McCarthy E., Connaire K. & McCallion P. (2008) Supporting Persons with Intellectual Disability and Advanced Dementia: Fusing the Horizons of Intellectual Disability, Dementia and Palliative Care, Report. Trinity College Dublin, Dublin.
16. Mitchell-Susan L., Kiely D. K. & Hamel B. B. (2004) Dying with advanced dementia in the nursing home. Archives of Internal Medicine 164, 321-326.
17. O'Brien J. (2001) The Genius of the Principle of Normalization. Center on Human Policy, Syracuse, New York.
18. Prasher V. P. (1995) End stage dementia in adults with Down syndrome. International Journal of Geriatric Psychiatry 10, 1067-1069.
19. Prasher V. P., Chung M. C. & Haque M. S. (1998) Longitudinal changes in adaptive behavior in adults with Down syndrome: Interim findings from a longitudinal study. American Journal on Mental Retardation 103, 40-46.
20. Qaseem A., Snow V., Shekelle P., Casey D. E. Jr, Cross J. T. Jr & Owens D. K. (2008) Evidence-based interventions to improve the palliative care of pain, dyspnea, and depression at the end of life: A clinical practice guideline from the American College of Physicians. Annals of Internal Medicine 148, 141-146.
21. QSR International Pty Ltd (2006) NVivo. QSR International Pty Ltd, Doncaster Victoria.
22. 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.
23. Sandelowski M. (2000) Whatever happened to qualitative description? Research in Nursing and Health 23, 334-340.
24. Shuster J. L. (2000) Palliative care for advanced dementia. Clinics in Geriatric Medicine 16, 373-386.
25. Solomon M. Z. & Jennings B. (1998) Palliative care for Alzheimer patients: Implications for institutions, caregivers, and families. In: Hospice Care for Patients with Advanced Dementia, Progressive Dementia (eds L. Volicer & A. Hurley), pp. 88-113. Springer Publishing Co, New York.
26. Swanson K. A. (2007) Dementia and co-morbidities: an overview of diagnosis and management. Journal of Pharmacy Practice 20, 296-317.
27. Todd S. (2004) Death counts: the challenge of death and dying in learning disability services. Learning Disability Practice 7, 12-15.
28. Tuffrey-Wijne I. (2002) The palliative care needs of people with intellectual disabilities: a case study. International Journal of Palliative Nursing 8, 222-231.
29. Tuffrey-Wijne I., Hollins S. & Curfs L. (2005) Supporting patients who have intellectual disabilities: a survey investigating staff training needs. International Journal of Palliative Nursing 11, 182-188.
30. Tuffrey-Wijne I., Hogg J. S. & Curfs L. (2007) End-of-life and palliative care for people with intellectual disabilities who have cancer or other life-limiting illness: a review of the literature and available resources. Journal of Applied Research in Intellectual Disabilities 20, 331-344.