Family Perceptions of End‐of‐Life Care for Long‐Term Care Residents with Dementia: Differences Between the United States and the Netherlands

Cohen, Lauren W.; Steen, Jenny T. van der; Reed, David; Hodgkinson, Jennifer C.; Soest‐Poortvliet, Mirjam C. van; Sloane, Philip D.; Zimmerman, Sheryl

doi:10.1111/j.1532-5415.2011.03816.x

Cited by 36 publications

(44 citation statements)

References 32 publications

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“…ECOG PS was highly correlated with physical function (Smith et al, 2012) and is the main correlate of not working (Phipps et al, 2011;Gomes et al, 2012;Pantilat et al, 2012). Poor ECOG PS of a patient would become a greater stressor for the caregiver (Tordoff et al, 2012) and family caregivers of terminal cancer patients who had poor ECOG PS scores were likely to need more assistance with patients dependent on care for activities of daily living or IADL including help with transportation, shopping, homemaking, emotional support, nutritional care, nursing care, and personal care (Baker et al, 2011;Chochinov et al, 2011;Cohen et al, 2012;Fairfield et al, 2012;Gomes et al, 2012;Pantilat et al, 2012;Tordoff et al, 2012).…”

Section: Discussionmentioning

confidence: 99%

Employment Status and Work-Related Difficulties among Family Members of Terminally Ill Patients Compared with the General Population

Kim

Chang

Rok

et al. 2013

Asian Pacific Journal of Cancer Prevention

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Background: Although caregiving to patients with terminal illness is known to be a stressful burden to family members, little attention has been focused on work-related problems. We aimed to investigate employment status and work-related difficulties of family caregivers of terminal cancer patients, comparing with the general population. Methods: Using structured questionnaires, we assessed family caregivers of 481 cancer patients determined by physicians to be terminally ill, from 11 university hospitals and the National Cancer Center in Korea. Results: Among 381 family caregivers of terminal cancer patients (response rate, 87.6%), 169 (43.9%) were not working before cancer diagnosis, but currently 233 (63.7%) were not working. Compared with the general population (36.5%), the percentage of not working among the family caregivers was higher (OR=2.39; 95%CI= 1.73-3.29). A major reason for not working was to provide assistance to the patients (71.6%). 40.6% of those who continued working and 32.3% of those who not working family members reported extreme fatigue. Caregivers of old age, those who were female, those with a lower household income, and those caring for patients with a low performance status were not working at a more significant rate. Conclusion: Family caregivers of terminal cancer patients suffer job loss and severe work-related difficulties, probably due to caregiving itself and to fatigue. We need to develop supportive programs to overcome the burden of caregivers of the terminally ill.

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Section: Discussionmentioning

confidence: 99%

Employment Status and Work-Related Difficulties among Family Members of Terminally Ill Patients Compared with the General Population

Kim

Chang

Rok

et al. 2013

Asian Pacific Journal of Cancer Prevention

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“…We also adjusted for three variables as they related to the time of the patient’s death: families’ baseline understanding, the physician’s assessment of perception of dementia, and time since the first death in the study, because of trends in treatment and outcome [17,18]. …”

Section: Methodsmentioning

confidence: 99%

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

Steen

Onwuteaka‐Philipsen

Knol

et al. 2013

BMC Med

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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.

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“…Those that exist focus on nursing home residents, and find some differences in quality of care and quality of life as judged by proxy respondents, but provide no details of the type of care received, such as the provision of palliative care or communication between patient and care providers. [15][16][17][18] Detailed cross-country comparisons on end-of-life care, such as those on patients with cancer, can shed light on which aspects of care are universally difficult or, alternatively, managed well in a variety of settings and cultural contexts; and draw attention to those areas where improvements can be made. 19 Comparing Belgium, Italy and Spain is interesting, as all three countries have achieved either preliminary or advanced integration of palliative care in the healthcare system.…”

Section: Introductionmentioning

confidence: 99%

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

Penders

Albers

Deliëns

et al. 2017

Geriatrics Gerontology Int

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Family Perceptions of End‐of‐Life Care for Long‐Term Care Residents with Dementia: Differences Between the United States and the Netherlands

Cited by 36 publications

References 32 publications

Employment Status and Work-Related Difficulties among Family Members of Terminally Ill Patients Compared with the General Population

Employment Status and Work-Related Difficulties among Family Members of Terminally Ill Patients Compared with the General Population

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

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

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