Volume 17, Issue 10 pp. 1667-1676
ORIGINAL ARTICLE: EPIDEMIOLOGY, CLINICAL PRACTICE AND HEALTH

End-of-life care for people dying with dementia in general practice in Belgium, Italy and Spain: A cross-sectional, retrospective study

Yolanda W .H. Penders

Corresponding Author

Yolanda W .H. Penders

Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium

Correspondence: Dr Yolanda W H Penders PhD, End-of-Life Care Research Group, Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB) & Ghent University, Laarbeeklaan 103, 1090 Brussels, Belgium. Email: [email protected]Search for more papers by this author
Gwenda Albers

Gwenda Albers

Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium

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Luc Deliens

Luc Deliens

Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium

Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium

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Guido Miccinesi

Guido Miccinesi

Clinical and Descriptive Epidemiology Unit, Cancer Prevention and Research Institute, Florence, Italy

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Tomás Vega Alonso

Tomás Vega Alonso

Public Health Directorate, Regional Ministry of Health (Dirección General de Salud Pública, Consellería de Sanidad), Castile and Leon, Valladolid, Spain

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Maite Miralles

Maite Miralles

Public Health Directorate, Regional Ministry of Health (Dirección General de Salud Pública, Conselleria de Sanitat), Comunitat Valenciana, Valencia, Spain

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Sarah Moreels

Sarah Moreels

Scientific Institute of Public Health (Wetenschappelijk Instituut Volksgezondheid, Institut Scientifique de Santé Publique), Unit of Health Services Research, Brussels, Belgium

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Lieve Van den Block

Lieve Van den Block

Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium

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on behalf of EUROIMPACT
First published: 06 January 2017
Citations: 12

Abstract

Aim

To describe and compare end-of-life care for people with mild or severe dementia in general practice in Belgium, Italy and Spain, in terms of place of care, place of death, treatment aims, use of specialized palliative care and communication with general practitioners (GPs).

Methods

Cross-sectional retrospective survey was carried out of nationwide networks of GPs in Belgium, Italy and Spain, including patients who died aged 65 years or older in 2009–2011 and were judged by the GP to have had dementia (n = 1623).

Results

GPs reported a higher proportion of older people with severe dementia in Belgium (55%) than in Spain (46 %) and Italy (45 %), and a higher proportion of patients living in care homes (57% vs 18% and 13%, respectively). A palliative treatment aim was common in the last 3 months of life in all three countries. Specialized palliative care services were provided in 14% (Italy, severe dementia) to 38% (Belgium, severe dementia) of cases. Communication between GP and patient about illness-related topics occurred in between 50% (Italy) and 72% (Belgium) of cases of mild dementia, and 10% (Italy) to 32% (Belgium) of cases of severe dementia. Patient preferences for end-of-life care were known in a minority of cases. Few people (13–15 %) were transferred between care settings in the last week of life.

Conclusions

Although overall treatment aims at the end of life are often aligned with a palliative care approach and transfer rates are low, there is room for improvement in end-of-life care for people with dementia in all countries studied, especially regarding early patient–GP communication. Geriatr Gerontol Int 2017; 17: 1667–1676.

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