Hostname: page-component-586b7cd67f-dsjbd Total loading time: 0 Render date: 2024-11-20T11:45:34.182Z Has data issue: false hasContentIssue false
  • English
  • Français

Quality of dying of nursing home residents with dementia as judged by relatives

Published online by Cambridge University Press:  05 June 2013

Nicole van Uden ,
Lieve Van den Block ,
Jenny T. van der Steen ,
Bregje D. Onwuteaka-Philipsen ,
An Vandervoort ,
Robert Vander Stichele  and
Luc Deliens
Nicole van Uden
Affiliation:
End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Brussels, Belgium
Lieve Van den Block*
Affiliation:
End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Brussels, Belgium Department of Family Medicine, Vrije Universiteit Brussel, Brussels, Belgium
Jenny T. van der Steen
Affiliation:
Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, Expertise Centre for Palliative Care, VU University Medical Center, Amsterdam, the Netherlands
Bregje D. Onwuteaka-Philipsen
Affiliation:
Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Centre for Palliative Care, VU University Medical Center, Amsterdam, the Netherlands
An Vandervoort
Affiliation:
End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Brussels, Belgium
Robert Vander Stichele
Affiliation:
End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Brussels, Belgium Heymans Institute of Pharmacology, Ghent University, Ghent, Belgium
Luc Deliens
Affiliation:
End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Brussels, Belgium Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Centre for Palliative Care, VU University Medical Center, Amsterdam, the Netherlands
*
Correspondence should be addressed to: Professor Dr. Lieve Van den Block, Laarbeeklaan 103, 1090 Jette, Brussels, Belgium. Phone: +32 (0)2/477 43 10 or (0)2/477 47 57; Fax: +32 (0)2/477 47 11. Email: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

Providing good quality care for the growing number of patients with dementia is a major challenge. There is little international comparative research on how people with dementia die in nursing homes. We compared the relative's judgment on quality of care at the end of life and quality of dying of nursing home residents with dementia in Belgium and the Netherlands.

Methods:

This was a Belgian cross-sectional retrospective study (2010) combined with a prospective and retrospective study from the Netherlands (January 2007–July 2011). Relatives of deceased residents of 69 Belgian and 34 Dutch nursing homes were asked to complete questionnaires. We included 190 and 337 deceased nursing home residents with dementia in Belgium and the Netherlands, respectively.

Results:

Of all identified deceased nursing home residents with dementia, respectively 53.2% and 74.8% of their relatives in Belgium and the Netherlands responded. Comfort while dying (CAD-EOLD, range 14–42) was rated better for Dutch nursing home residents than for Belgian nursing homes residents (26.1 vs. 31.1, OR 4.5, CI 1.8–11.2). We found no differences between countries regarding Satisfaction With Care (SWC-EOLD, range 10–40, means 32.5 (the Netherlands) and 32.0 (Belgium)) or symptom frequency in the last month of life (SM-EOLD, range 0–45, means 26.4 (the Netherlands) and 27.2 (Belgium)).

Conclusion:

Although nursing home structures differ between Belgium and the Netherlands, the quality of care in the last month of life for residents with dementia is similar according to their relatives. However, Dutch residents experience less discomfort while dying. The results suggest room for improved symptom management in both countries and particularly in the dying phase in Belgium.

Keywords

dementialong-term carepalliative care
Type
Research Article
Information
International Psychogeriatrics , Volume 25 , Issue 10 , October 2013 , pp. 1697 - 1707
Copyright
Copyright © International Psychogeriatric Association 2013 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Addington-Hall, J. (2002). Research sensitivities to palliative care patients. European Journal of Cancer Care, 11, 220–224.CrossRefGoogle ScholarPubMed
Aminoff, B. Z. and Adunsky, A. (2005). Dying dementia patients: too much suffering, too little palliation. American Journal of Hospice Palliative, 22, 344–348.CrossRefGoogle ScholarPubMed
Cohen, L. W.et al. (2012). Family perceptions of end-of-life care for long-term care residents with dementia: differences between the United States and the Netherlands. Journal of the American Geriatrics Society, 60, 316–322.CrossRefGoogle ScholarPubMed
Damiani, G.et al. (2011). Patterns of long term care in 29 European countries: evidence from an exploratory study. BMC Health Services Research, 11, 316.CrossRefGoogle ScholarPubMed
Department of Health (2012). First national VOICES survey of bereaved people key findings report. Department of Health, UK.Google Scholar
Di Giulio, P., Toscani, F., Villani, D., Brunelli, C., Gentile, S. and Spadin, P. (2008). Dying with advanced dementia in long-term care geriatric institutions: a retrospective study. Journal of Palliative Medicine, 11, 1023–1028.CrossRefGoogle ScholarPubMed
Elseviers, M. M., Vander Stichele, R. R. and Van, B. L. (2010). Drug utilization in Belgian nursing homes: impact of residents’ and institutional characteristics. Pharmacoepidemiology and Drug Safety, 19, 1041–1048.CrossRefGoogle ScholarPubMed
Engel, S. E., Kiely, D. K. and Mitchell, S. L. (2006). Satisfaction with end-of-life care for nursing home residents with advanced dementia. Journal of the American Geriatrics Society, 54, 1567–1572.CrossRefGoogle ScholarPubMed
Froggatt, K., Brazil, K., Hockley, J. and Reitinger, E. (2011). Improving care for older people living and dying in long-term care settings: a whole system approach. In Gott, M. and Ingleton, C. (eds.), Living with Aging and Dying: Palliative and End of Life Care for Older People (pp. 215–225). Oxford: Oxford University Press.Google Scholar
Froggatt, K. and Reitinger, E. (2013). Palliative Care in Long-Term Care Settings for Older People EAPC Taskforce report.Google Scholar
Gijsberts, M. J., van der Steen, J. T., Muller, M. T. and Deliens, L. (2008). Zorg aan het levenseinde bij bewoners met dementie in antroposofische en reguliere verpleeghuizen. Een pilot studie. Tijdschrift voor Gerontologie en Geriatrie, 39, 256–264.CrossRefGoogle Scholar
Helton, M. R., van der Steen, J. T., Daaleman, T. P., Gamble, G. R. and Ribbe, M. W. (2006). A cross-cultural study of physician treatment decisions for demented nursing home patients who develop pneumonia. The Annals of Family Medicine, 4, 221–227.CrossRefGoogle ScholarPubMed
Houttekier, D., Cohen, J., Bilsen, J., Addington-Hall, J., Onwuteaka-Philipsen, B. D. and Deliens, L. (2010). Place of death of older persons with dementia. A study in five European countries. Journal of the American Geriatrics Society, 58, 751–756.CrossRefGoogle ScholarPubMed
Kiely, D. K., Volicer, L., Teno, J., Jones, R. N., Prigerson, H. G. and Mitchell, S. L. (2006). The validity and reliability of scales for the evaluation of end-of-life care in advanced dementia. Alzheimer Disease and Associated Disorders, 20, 176–181.CrossRefGoogle ScholarPubMed
Meeussen, K.et al. (2012). Older people dying with dementia: a nationwide study. International Psychogeriatrics, 24, 1581–1591.CrossRefGoogle ScholarPubMed
Meijer, A., Van Campen, C. and Kerkstra, A. (2000). A comparative study of the financing, provision and quality of care in nursing homes. The approach of four European countries: Belgium, Denmark, Germany and the Netherlands. Journal of Advanced Nursing, 32, 554–561.CrossRefGoogle ScholarPubMed
Mitchell, S. L., Kiely, D. K., Jones, R. N., Prigerson, H. G., Volicer, L. and Teno, J. M. (2006). Advanced dementia research in the nursing home: the CASCADE study. Archives of Internal Medicine, 20, 166–175.Google ScholarPubMed
Mitchell, S. L., Teno, J. M., Miller, S. C. and Morisson, V. (2005). A national study of the location of death for older persons with dementia. Journal of the American Geriatrics Society, 53, 299–305.CrossRefGoogle ScholarPubMed
Mitchell, S. L.et al. (2009). The clinical course of advanced dementia. The New England Journal of Medicine, 361, 1529–1538.CrossRefGoogle ScholarPubMed
Munn, J. C.et al. (2007). Measuring the quality of dying in long-term care. Journal of the American Geriatrics Society, 55, 1371–1379.CrossRefGoogle ScholarPubMed
Mura, T., Dartigues, J. F. and Berr, C. (2010). How many dementia cases in France and Europe? Alternative projections and scenarios 2010–2050. European Journal of Neurology, 17, 252–259.CrossRefGoogle ScholarPubMed
Teno, J. M. (2005). Measuring end-of-life care outcomes retrospectively. Journal of Palliative Medicine, 8, 42–49.CrossRefGoogle ScholarPubMed
van der Steen, J. T., Deliens, L., Ribbe, M. W. and Onwuteaka-Philipsen, B. B. (2012). Selection bias in family reports on end of life with dementia in nursing homes. Journal of Palliative Medicine, 15, 1292–1296.CrossRefGoogle ScholarPubMed
van der Steen, J. T., Gijsberts, M. J., Muller, M. T., Deliens, L. and Volicer, L. (2009). Evaluations of end of life with dementia by families in Dutch and U.S. nursing homes. International Psychogeriatrics, 21, 321–329.CrossRefGoogle ScholarPubMed
van der Steen, J. T., Ribbe, M. W., Deliens, L., Gutschow, G. and Onwuteaka-Philipsen, B. D. (2013). Retrospective and prospective data collection compared in the Dutch end of life in dementia (DEOLD) study. Alzheimer Disease and Associated Disorders, PMID:23632265.Google Scholar
Vandervoort, A., Van den Block, L., van der Steen, J. T., Vander, S. R., Bilsen, J. and Deliens, L. (2012). Advance directives and physicians’ orders in nursing home residents with dementia in Flanders, Belgium: prevalence and associated outcomes. International Psychogeriatrics, 24, 1133–1143.CrossRefGoogle ScholarPubMed
van Soest-Poortvliet, M. C.et al. (2012). Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia. Quality of Life Research, 21, 671–684.CrossRefGoogle ScholarPubMed