You are here

  • Home
  • Online First
  • Quality of end-of-life nursing home care in dementia: relatives’ perceptions

Article Text

Article menu
Download PDFPDF
Original research
Quality of end-of-life nursing home care in dementia: relatives’ perceptions
  1. Isabel Vandenbogaerde1,2,3,
  2. Aline De Vleminck1,2,3,
  3. Agnes van der Heide4,
  4. Luc Deliens1,2,3,
  5. Lieve Van den Block1,2,3 and
  6. Tinne Smets1,2,3
  1. 1End of Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium
  2. 2Department of Public Health and Primary Care, Universiteit Gent, Gent, Belgium
  3. 3Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel, Brussel, Belgium
  4. 4Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
  1. Correspondence to Isabel Vandenbogaerde, End of life care research group, Vrije Universiteit Brussel, Brussel, Brussel, Belgium; isabel.vandenbogaerde{at}vub.be

Abstract

Objectives Only a few studies have investigated the quality of end-of-life care provided to nursing home residents with dementia as perceived by their relatives. We aim to investigate the quality of end-of-life care as perceived by relatives and to investigate which characteristics of nursing home residents with dementia, their relatives and the care they received are associated with the evaluation the quality of end-of-life care as perceived by the relatives.

Methods Data used were from two cross-sectional studies performed in Flanders in 2010 and 2015. Questionnaires were sent to bereaved relatives of nursing home residents with dementia and 208 questionnaires were returned. The quality of end-of-life care as perceived by the relatives was measured with the End-of-Life with Dementia–Satisfaction With Care scale (scores ranging 10–40).

Results In total, 208 (response rate2010: 51.05%, response rate2015=60.65%) bereaved relatives responded to the questionnaire. The quality of end-of-life care as perceived by them was positively associated with the nursing home resident being male (b=1.78, p<0.05), relatives receiving information on palliative care (b=2.92, p<0.01) and relatives receiving information about medical care from care providers (b=2.22, p<0.01).

Conclusion This study suggests that relatives need to be well informed about palliative and medical care. Future end-of-life care interventions in nursing homes should focus on how to increase the information exchange and communication between nursing home staff and relatives.

  • communication
  • end of life care
  • nursing home care
  • quality of life

Data availability statement

Data are available upon reasonable request. The data that support the findings of this study are available on request from the corresponding author, [IV]. The data are not publicly available due to [restrictions e.g. their containing information that could compromise the privacy of research participants]

https://doi.org/10.1136/bmjspcare-2021-003497

Statistics from Altmetric.com

    Request Permissions

    If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

    Data availability statement

    Data are available upon reasonable request. The data that support the findings of this study are available on request from the corresponding author, [IV]. The data are not publicly available due to [restrictions e.g. their containing information that could compromise the privacy of research participants]

    View Full Text

    Footnotes

    • Twitter @IVandenbogaerde

    • Contributors All authors gave final approval of the submitted manuscript and agreed to be accountable for all aspects of the work. All authors' specific contributions are as follows: study concept and design: IV, ADV, AvdH, LD, LVdB and TS; analysis and interpretation of data: IV, ADV, AvdH, LD, LVdB and TS; preparation of manuscript: IV, ADV, AvdH, LD, LVdB and TS. The guarantor: IV

    • Funding This work was supported by the European Union’s Seventh Framework Programme (FP7/2007e2013) under grant agreement 603111 (Palliative Care for Older People in Care and Nursing Homes in Europe (PACE) project Palliative Care for Older People, 2015). The authors thank all nursing homes who participated in the study. The authors thank the PACE consortium. The data collection that was part of the 2010 Dying Well With Dementia Study was supported by a major grant from the Vrije Universiteit Brussel (GOA, HW and VUB).

    • Competing interests LVdB is a Francqui research professor (2020-2023). ADV received funding for a postdoctorate fellowship in FWO, Belgium.

    • Provenance and peer review Not commissioned; externally peer reviewed.