Original StudyNursing Home Residents Dying With Dementia in Flanders, Belgium: A Nationwide Postmortem Study on Clinical Characteristics and Quality of Dying
Section snippets
Study Design
A retrospective cross-sectional study was conducted in Flanders, the Dutch-speaking part of Belgium, where 6.3 million people (58% of the Belgian population) live. Structured questionnaires were completed by the nurse most involved in care for the resident, the family physician (FP), and the nursing home administrator regarding deceased nursing home residents with dementia, in a representative sample of Flemish nursing homes (ie, high-care nursing homes for elderly people). There are several
Sample Description
Sixty-nine nursing homes (58% response rate) participated, representative of all nursing homes in Flanders in terms of size, region, and ownership because of the proportionate sampling. The main reasons for not participating were lack of time because of high work pressure, staff shortage, or overload of requests for research participation. Response rates for FPs, nurses, and nursing home administrators were 52.9%, 88.4%, and 95.0%, respectively. The median time between death of the resident and
Discussion
This study shows that nearly half of all nursing home residents in Flanders, Belgium, die with dementia, and half of these have very severe or advanced dementia at the time of death. Regardless of the stage of dementia, many residents develop serious clinical complications and symptoms in the terminal phase of life.
To our knowledge, this is the first nationwide population-based study describing the clinical characteristics and quality of dying of nursing home residents with dementia. The random
Conclusion
In conclusion, considering our finding that half of nursing home residents die with dementia, a number that will only increase in the future, dying well with dementia in nursing homes is one of the most important public health challenges for end-of-life care. Serious clinical complications and distressing symptoms were reported regardless of the stage of dementia. This suggests that research addressing the challenge of providing high-quality end-of-life care for residents with dementia should
Acknowledgments
We thank the umbrella organizations for nursing homes (Vereniging van Vlaamse Steden en Gemeenten, Federatie Onafhankelijke Seniorenzorg and the Federatie van Rustoorden van België), BVGG-Crataegus, CRA-Domus, Belgische Vereniging voor Gerontologie en Geriatrie, Expertisecentrum Dementie, Federation Palliative Care Flanders, and the work group Palliatieve Zorg en Geriatrie for their support given to this study; Eva Dumon for her support in data collection; Departement R&D van de CM Landsbond
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Cited by (0)
There are no conflicts of interest.
This study was supported by a major grant from Vrije Universiteit Brussel (GOA HW, VUB 2007) and is part of the “Dying Well With Dementia” study, the Fund for Scientific Research in Flanders, Belgium (postdoctoral grant to L. Van den Block). The Vrije Universiteit Brussel and the Fund for Scientific Research in Flanders did not have any role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; or in preparation, review, or approval of this manuscript.
In Belgium, the study protocol and anonymity procedures were approved by the ethical review board of the University Hospital of the Vrije Universiteit Brussel. Patient anonymity was preserved and physician confidentiality maintained through the registration and data entry processes.