A Family Booklet About Comfort Care in Advanced Dementia: Three-Country Evaluation

Journal of the American Medical Directors Association

Volumn 13, Issue 4, 2012, Pages 368-375

  van der Steen, Jenny T ^a   Arcand, Marcel ^b   Toscani, Franco ^c   de Graas, Tjomme ^d   Finetti, Silvia ^c   Beaulieu, Marie ^b,e   Brazil, Kevin ^f,g   Nakanishi, Miharu ^h   Nakashima, Taeko ^h   Knol, Dirk L ^a   Hertogh, Cees M P M ^a  

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^b UNIVERSITÉ DE SHERBROOKE   (Canada)

^c Lino Maestroni Foundation Palliative Medicine Research Institute   (Italy)

^d Evean nursing home   (Netherlands)

^e UNIVERSITY INSTITUTE OF GERIATRICS OF SHERBROOKE   (Canada)

^f MCMASTER UNIVERSITY   (Canada)

^g MCMASTER UNIVERSITY   (Canada)

^h 11 Toyo Kaiji Bldg   (Japan)

Author keywords

Advance care planning; Decision aid; Decision making; Dementia; Nursing homes; Palliative care

Indexed keywords

ADULT; ADVANCED DEMENTIA; ARTICLE; BOOKLET ON COMFORT CARE; CANADA; DEMENTIA; EVALUATION; FEMALE; HUMAN; INTERNET; ITALY; LONG TERM CARE; MAJOR CLINICAL STUDY; MALE; NETHERLANDS; NURSING HOME PATIENT; PATIENT CARE; PATIENT SATISFACTION; RATING SCALE; RETROSPECTIVE STUDY;

EID: 84860340170     PISSN: 15258610     EISSN: 15389375     Source Type: Journal    
DOI: 10.1016/j.jamda.2011.02.005     Document Type: Article

References (41)

1. Houttekier D., Cohen J., Bilsen J., et al. Place of death of older persons with dementia. A study in five European countries. J Am Geriatr Soc 2010, 58:751-756.
2. Mitchell S.L., Teno J.M., Miller S.C., Mor V. A national study of the location of death for older persons with dementia. J Am Geriatr Soc 2005, 53:299-305.
3. Olson E. Dementia and neurodegenerative diseases. Geriatric Palliative Care 2003, 160-172. Oxford University Press, New York. R. Morrison (Ed.).
4. Givens J.L., Kiely D.K., Carey K., Mitchell S.L. Healthcare proxies of nursing home residents with advanced dementia: Decisions they confront and their satisfaction with decision-making. J Am Geriatr Soc 2009, 57:1149-1155.
5. van der Steen J.T. Dying with dementia: What we know after more than a decade of research. J Alzheimer Dis 2010, 22:37-55.
6. Forbes S., Bern-Klug M., Gessert C. End-of-life decision making for nursing home residents with dementia. J Nurs Scholarsh 2000, 32:251-258.
7. Gessert C.E., Forbes S., Bern-Klug M. Planning end-of-life care for patients with dementia: roles of families and health professionals. Omega (Westport) 2000, 42:273-291.
8. Caron C., Arcand M., Griffith J. Creating a partnership with families in decision making for end-of-life care in Alzheimer disease: The perspective of family caregivers. Dementia 2005, 4:113-136.
9. Caron C., Griffith J., Arcand M. Decision making at the end of life in dementia: How family caregivers perceive their interactions with health care providers in long-term- care settings. J Appl Gerontol 2005, 24:231-247.
10. Bern-Klug M. The emotional context facing nursing home residents' families: A call for role reinforcement strategies from nursing homes and the community. J Am Med Dir Assoc 2008, 9:36-44.
11. Biola H., Sloane P.D., Williams C.S., et al. Physician communication with family caregivers of long-term care residents at the end of life. J Am Geriatr Soc 2007, 55:846-856.
12. Hennings J., Froggatt K., Keady J. Approaching the end of life and dying with dementia in care homes: The accounts of family carers. Rev Clin Gerontol 2010, 20:114-127.
13. Chang E., Easterbrook S., Hancock K., et al. Evaluation of an information booklet for caregivers of people with dementia: An Australian perspective. Nurs Health Sci 2010, 12:45-51.
14. Arcand M, Caron C. Comfort Care at the End of Life for Persons with Alzheimer's Disease or Other Degenerative Diseases of the Brain. Sherbrooke, Canada: Centre de Sante et de Services Sociaux - Institut Universitaire de Geriatrie de Sherbrooke, 2005. Available at: Accessed March 10, 2011. The Italian text is available at Associazione Italiana Malattia di Alzheimer (AIMA): Accessed January 8, 2011. The Dutch version is available from: Accessed March 10, 2011. http://www.vumc.nl/afdelingen-themas/4851287/27785/5214110/HandreikingDementie.pdf.
15. Elwyn G., O'Connor A., Stacey D., et al. International Patient Decision Aids Standards (IPDAS) Collaboration. Developing a quality criteria framework for patient decision aids: Online international Delphi consensus process. BMJ 2006, 333:417.
16. Gove D., Sparr S., Dos Santos Bernardo A.M., et al. Recommendations on end-of-life care for people with dementia. J Nutr Health Aging 2010, 14:136-139.
17. Hewitt M, Simone JV, eds. Ensuring Quality Cancer Care. Washington DC: National Academies Press, 1999. In: Davies E and Higginson IJ, eds. Better Palliative Care for Older People. Geneva: World Health Organization (WHO), 2004.
18. van der Steen J.T., Toscani F., de Graas T., et al. Physicians' and nurses' perceived usefulness and acceptability of a family information booklet about comfort care in advanced dementia. J Pall Med 2011, Accepted for publication.
19. Case D.O., Andrews J.E., Johnson J.D., Allard S.L. Avoiding versus seeking: The relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts. J Med Libr Assoc 2005, 93:353-362.
20. Polk D.M. Communication and family caregiving for Alzheimer's dementia: Linking attributions and problematic integration. Health Commun 2005, 18:257-273.
21. van der Steen J.T., van Soest-Poortvliet M., Achterberg W., Ribbe M., de Vet R., Zimmerman S., Cohen L.W. End-of-life in long-term care in the Netherlands: new findings and measurement issues. Gerontologist 2009, 49(52, Oct):57.
22. van Soest-Poortvliet M, van der Steen JT, Zimmerman S, Cohen LW, Munn J, Achterberg WP, Ribbe MW, de Vet HCW. Measuring the quality of dying and quality of care when dying in long-term care settings: a qualitative content analysis of available instruments. J Pain Symptom Manage 2011. Accepted for publication.
23. O'Connor AM, Cranney A. Patient Decision Aids - Evaluation Measures. User manual for acceptability. Ottawa, Canada: University of Ottawa, Ottawa Hospital Research Institute, 2002. Available at: Accessed January 8, 2011. http://decisionaid.ohri.ca/docs/develop/User_Manuals/UM_Acceptability.pdf.
24. Graham I.D., Logan J., Bennett C.L., et al. Physicians' intentions and use of three patient decision aids. BMC Med Inform Decis Mak 2007, 7:20.
25. Salisbury C., Wallace M., Montgomery A.A. Patients' experience and satisfaction in primary care: Secondary analysis using multilevel modelling. BMJ 2010, 341. c5004.
26. van der Steen J.T., Gijsberts M.J., Muller M.T., et al. Evaluations of end of life with dementia by families in Dutch and U.S. nursing homes. Int Psychogeriatr 2009, 21:321-329.
27. El-Jawahri A.R., Prigerson H.G. Bereavement care. Principles and Practice of Palliative Care and Supportive Oncology 2007, 645-653. Lippincott Williams & Wilkins, Philadelphia. 3rd ed. A.M. Berger, J.L. Hushter, J.H. Von Roenn (Eds.).
28. Hardin J.W., Hilbe J.M. Generalized Estimating Equations 2003, Chapman & Hall/CRC, Boca Raton FL.
29. Agresti A. Categorical Data Analysis 2002, Wiley, New York. 2nd ed.
30. Wolf-Klein G., Pekmezaris R., Chin L., Weiner J. Conceptualizing Alzheimer's disease as a terminal medical illness. Am J Hosp Palliat Care 2007, 24:77-82.
31. Feldman-Stewart D., Brundage M.D. Challenges for designing and implementing decision aids. Patient Educ Couns 2004, 54:265-273.
32. Miccinesi G., Fischer S., Paci E., et al. EURELD consortium. Physicians' attitudes towards end-of-life decisions: A comparison between seven countries. Soc Sci Med 2005, 60:1961-1974.
33. Löfmark R., Nilstun T., Cartwright C., et al. EURELD Consortium. Physicians' experiences with end-of-life decision-making: Survey in 6 European countries and Australia. BMC Med 2008, 6:4.
34. Centeno C, Clark D, Rocafort J, et al; Task force on the development of palliative care in Europe. Ranking of palliative care development in the European Union. Presented at the EAPC, Vienna, 2009. Available at: Accessed January 8, 2011. http://www.eapc-taskforce-development.eu/documents/taskforce/madrid0508.pdf.
35. Feldman-Stewart D., Capirci C., Brennenstuhl S., et al. Information needs of early-stage prostate cancer patients: A comparison of nine countries. Radiother Oncol 2010, 94:328-333.
36. Wald C., Fahy M., Walker Z., Livingston G. What to tell dementia caregivers-the rule of threes. Int J Geriatr Psychiatry 2003, 18:313-317.
37. Pfeifer M.P., Mitchell C.K., Chamberlain L. The value of disease severity in predicting patient readiness to address end-of-life issues. Arch Intern Med 2003, 163:609-612.
38. Mattimore T.J., Wenger N.S., Desbiens N.A., et al. Surrogate and physician understanding of patients' preferences for living permanently in a nursing home. J Am Geriatr Soc 1997, 45:818-824.
39. Fried T.R., Bullock K., Iannone L., O'Leary J.R. Understanding advance care planning as a process of health behavior change. J Am Geriatr Soc 2009, 57:1547-1555.
40. Fried T.R., Redding C.A., Robbins M.L., et al. Stages of change for the component behaviors of advance care planning. J Am Geriatr Soc 2010, 58:2329-2336.
41. Thompsell A., Lovestone S. Out of sight out of mind? Support and information given to distant and near relatives of those with dementia. Int J Geriatr Psychiatry 2002, 17:804-807.