End of life care practice and symptom management outcomes of nursing home residents with dementia: secondary analyses of IQUARE trial

  • Antoine ElynEmail author
  • Sandrine Sourdet
  • Lucas Morin
  • Fati Nourhashemi
  • Nicolas Saffon
  • Philipe de Souto Barreto
  • Yves Rolland
Research Paper



End-of-life care is a central issue in nursing homes. Poor care outcomes have been reported, especially among residents with dementia. Our aim was two-fold: to assess whether the diagnosis of dementia was associated with specific patterns of care and symptom management for residents with dementia during the last 6 months of life, and to compare these patterns of care between residents with dementia who died within 6 months and those who survived longer.


Secondary prospective analyses of the IQUARE trial (trial registration number NCT01703689). 175 nursing homes in South West France. Residents with and without dementia at baseline (May–June 2011), stratified according to their vital status at 6-month follow-up.


Of 6275 residents enrolled in IQUARE study (including 2688 with dementia), 494 (7.9%) died within 6 months. Compared to residents without dementia (n = 254), those with dementia (n = 240) were less likely to be self-sufficient (OR = 0.08, 95% CI 0.01–0.64). They were more likely to have physical restraints (OR = 1.65, 95% CI 1.08–2.51) and less likely to be prescribed benzodiazepines (OR = 0.58, 95% CI 0.38–0.88). Among residents with dementia, those who died during the first 6 months of follow-up were more likely to be identified with a formal “end-of-life” status (OR = 5.71, 95% CI 3.48–9.37) although such identification remains low with only 15% of them. They were more likely to experience pain (OR = 1.43, 95% CI 1.04–1.97) and to be physically restrained (OR = 1.46, 95% CI 1.08–1.98). However, pain relief and psychological distress management were not improved.


Poor quality indicators such as physical restraints are associated with end-of-life care for residents with dementia. Among symptom management outcomes, pain medication remains low even if pain complaint increased at life end.


Palliative care Dementia Nursing homes Symptom management End-of-life Physical restraint 


Compliance with ethical standards

Conflict of interest

The authors report no conflict of interest related to this research article.

Ethical approval

The study protocol follow the principles of the 1964 Helskinki declaration and was approved by the ethic committee of the Toulouse University Hospital and the Consultative Committee for the Treatment of Research Information on Health (“Commission Nationale de l’Informatique et des Libertés”, CNIL decision no 07-438).

Informed consent

Nursing homes volunteered to participate in IQUARE trial. Individual consent to participate was sought for each of the residents participating in the study. Residents who expressed a refusal to participate were not included.

Supplementary material

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Copyright information

© European Geriatric Medicine Society 2019

Authors and Affiliations

  1. 1.Palliative Care Unit “Résonance”University Hospital of ToulouseToulouse Cedex 9France
  2. 2.Frailty Hospital, Gerontology and Internal MedicineUniversity Hospital of Toulouse, Cité de la santéToulouse Cedex 9France
  3. 3.INSERM, URM1027 “Aging and Alzheimer Disease: From Observation to Intervention”, Faculté de MédecineToulouseFrance
  4. 4.Aging Research CentreKarolinska Institutet and Stockholm UniversityStockholmSweden
  5. 5.Gerontology and Internal MedicineUniversity Hospital of Toulouse, Cité de la santéToulouse Cedex 9France

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