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

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.

Cause of Death and End‐of‐Life Experiences in Individuals with Dementia with Lewy Bodies

“…In one study, more than one-quarter of families reported not knowing that dementia could lead to death, and awareness of dementia as a terminal condition was associated with greater comfort at the end of life. 25 Use of hospice for individuals with DLB was higher than reported rates of dementia palliative care. 13 This is important given evidence that hospice improves quality of care of individuals dying with dementia, 26 although research is limited.…”

Changes in Care Goals and Treatment Orders Around the Occurrence of Health Problems and Hospital Transfers in Dementia: A Prospective Study

“…Palliative and symptomatic goals both refer to comfort, quality of life and well-being, but differ as to whether prolongation of life is desirable. 31 In addition, physicians recorded treatment orders anticipating future scenarios. Treatment orders were assessed as a do-treat order, a do-not-treat order, or no order, and a pre-structured list of treatment orders was included in the questionnaires.…”

Critical Decisions for Older People With Advanced Dementia: A Prospective Study in Long-Term Institutions and District Home Care

“…In the absence of a surrogate and of advanced directives (ADs), regardless of whether the family is involved in decisions, the ultimate responsibility for prescribing treatment falls on the physician: the physician is the prescriber, and must act in accordance with her/his professional and ethical standards. 3 Advanced dementia may be perceived as a terminal condition, 4,5 but because patients can survive for years with this condition, they are often exposed to aggressive and/or inappropriate treatments. 6 Decisions to forgo artificial nutrition and hydration are among the most difficult and controversial ones 7,8 , but even routine clinical decisions can impact the patients' quality of life and/or survival.…”