Original Study
Nursing Home Residents Dying With Dementia in Flanders, Belgium: A Nationwide Postmortem Study on Clinical Characteristics and Quality of Dying

https://doi.org/10.1016/j.jamda.2013.01.016Get rights and content

Abstract

Objectives

There is a lack of large-scale, nationwide data describing clinical characteristics and quality of dying of nursing home residents dying with dementia. We set out to investigate quality of end-of-life care and quality of dying of nursing home residents with dementia in Flanders, Belgium.

Design/Setting/Participants

To obtain representativity, we conducted a postmortem study (2010) using random cluster sampling. In selected nursing homes, all deceased residents with dementia in a period of 3 months were reported. For each case, a structured questionnaire was filled in by the nurse most involved in care, the family physician, and the nursing home administrator. We used the Cognitive Performance Scale and Global Deterioration Scale to assess dementia. Main outcome measures were health status, clinical complications, symptoms at the end of life, and quality of dying.

Measurements

Health status, clinical complications, symptoms at the end of life, and quality of dying.

Results

We identified 198 deceased residents with dementia in 69 nursing homes (58% response rate). Age distribution was the same as all deceased residents with dementia in Flanders, 2010. Fifty-four percent had advanced dementia. In the last month of life, 95.5% had 1 or more sentinel events (eg, eating/drinking problems, febrile episodes, or pneumonia); most frequently reported symptoms were pain, fear, anxiety, agitation, and resistance to care. In the last week, difficulty swallowing and pain were reported most frequently. Pressure sores were present in 26.9%, incontinence in 89.2%, and cachexia in 45.8%. Physical restraints were used in 21.4% of cases, and 10.0% died outside the home. Comparing stages of dementia revealed few differences between groups regarding clinical complications, symptoms, or quality of dying.

Conclusion

Regardless of the dementia stage, many nursing home residents develop serious clinical complications and symptoms in the last phase of life, posing major challenges to the provision of optimum end-of-life care.

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

References (37)

  • B.Z. Aminoff et al.

    Dying dementia patients: Too much suffering, too little palliation

    Am J Hosp Palliat Care

    (2005)
  • D. Houttekier et al.

    Place of death of older persons with dementia. A study in five European countries

    J Am Geriatr Soc

    (2010)
  • S.L. Mitchell et al.

    A national study of the location of death for older persons with dementia

    J Am Geriatr Soc

    (2005)
  • Z. Cordner et al.

    Quality of life in nursing home residents with advanced dementia

    J Am Geriatr Soc

    (2010)
  • C. Goodman et al.

    End of life care for community dwelling older people with dementia: An integrated review

    Int J Geriatr Psychiatry

    (2010)
  • E.L. Sampson et al.

    Palliative assessment and advance care planning in severe dementia: An exploratory randomized controlled trial of a complex intervention

    Palliat Med

    (2011)
  • A.M. Torke et al.

    Palliative care for patients with dementia: A national survey

    J Am Geriatr Soc

    (2010)
  • S.L. Mitchell et al.

    Advanced dementia research in the nursing home: The CASCADE study

    Alzheimer Dis Assoc Disord

    (2006)
  • 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.

    View full text