Open Access Open Badges Research article

Caregivers’ understanding of dementia predicts patients’ comfort at death: a prospective observational study

Jenny T van der Steen1*, Bregje D Onwuteaka-Philipsen2, Dirk L Knol3, Miel W Ribbe1 and Luc Deliens24

Author Affiliations

1 Department of General Practice & Elderly Care Medicine, , EMGO Institute for Health and Care Research, VU University Medical Center, Van der Boechorststraat 7, Amsterdam, 1081BT, The Netherlands

2 Department of Public and Occupational Health, VU University Medical Center, EMGO Institute for Health and Care Research, Van der Boechorststraat 7, Amsterdam, 1081BT, The Netherlands

3 VU University Medical Center, Department of Epidemiology and Biostatistics, VU University Medical Center, De Boelelaan 1118, Amsterdam, 1081HZ, The Netherlands

4 Ghent University and Vrije Universiteit Brussels, End-of-Life Care Research Group, Laarbeeklaan 103, Brussels, 1090, Belgium

For all author emails, please log on.

BMC Medicine 2013, 11:105  doi:10.1186/1741-7015-11-105

Published: 11 April 2013



Patients with dementia frequently do not receive adequate palliative care which may relate to poor understanding of the natural course of dementia. We hypothesized that understanding that dementia is a progressive and terminal disease is fundamental to a focus on comfort in dementia, and examined how family and professional caregivers’ understanding of the nature of the disease was associated with patients’ comfort during the dying process.


We enrolled 372 nursing home patients from 28 facilities in The Netherlands in a prospective observational study (2007 to 2010). We studied both the families and the physicians (73) of 161 patients. Understanding referred to families’ comprehension of complications, prognosis, having been counseled on these, and perception of dementia as “a disease you can die from” (5-point agreement scale) at baseline. Physicians reported on this perception, prognosis and having counseled on this. Staff-assessed comfort with the End-of-Life in Dementia - Comfort Assessment in Dying (EOLD-CAD) scale. Associations between understanding and comfort were assessed with generalized estimating equations, structural equation modeling, and mediator analyses.


A family’s perception of dementia as “a disease you can die from” predicted higher patient comfort during the dying process (adjusted coefficient −0.8, 95% confidence interval (CI): −1.5; -0.06 point increment disagreement). Family and physician combined perceptions (−0.9, CI: −1.5; -0.2; 9-point scale) were also predictive, including in less advanced dementia. Forty-three percent of the families perceived dementia as a disease you can die from (agreed completely, partly); 94% of physicians did. The association between combined perception and higher comfort was mediated by the families’ reporting of a good relationship with the patient and physicians’ perception that good care was provided in the last week.


Awareness of the terminal nature of dementia may improve patient comfort at the end of life. Educating families on the nature of dementia may be an important part of advance care planning.

Palliative care; End of life; Dementia