Abstract
BackgroundPatients 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.MethodsWe 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.ResultsA 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.ConclusionsAwareness 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.
Highlights
Patients with dementia frequently do not receive adequate palliative care which may relate to poor understanding of the natural course of dementia
We studied if and how caregiver understanding of the progressive and terminal nature of dementia relates to patient comfort when dying
Between January 2007 and July 2010, 34 long-term care facilities from each of the 12 provinces in The Netherlands participated in the Dutch End Of Life in Dementia (DEOLD) study
Summary
Patients with dementia frequently do not receive adequate palliative care which may relate to poor understanding of the natural course of dementia. The number of people living with dementia will more than triple by 2050 [1], and more family and professional caregivers will provide end-of-life care. We studied if and how caregiver understanding of the progressive and terminal nature of dementia relates to patient comfort when dying. Understanding the clinical trajectory of dementia may be the basis of high-quality palliative care at the end of life, along with the need “to diagnose dying” [2,3]. A US study in nursing home patients with advanced dementia showed that if families had limited understanding of the poor prognosis and clinical course of advanced dementia, patients were more likely to undergo burdensome interventions [6]. Retrospective work in diverse settings in patients with terminal diseases linked recognition of dying van der Steen et al BMC Medicine 2013, 11:105 http://www.biomedcentral.com/1741-7015/11/105 to fewer diagnostic and therapeutic interventions [7] and to patients more frequently being at peace with their situation [8]
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