International Variation in Place of Death of Older People Who Died From Dementia in 14 European and non-European Countries

Reyniers, Thijs; Deliens, Luc; Pasman, H. Roeline W.; Morin, Lucas; Addington‐Hall, Julia; Frova, Luisa; Cardenas‐Turanzas, Marylou; Onwuteaka-Philipsen, Bregje D.; Naylor, Wayne; Ruíz-Ramos, Miguel; Wilson, Donna M.; Loučka, Martin; Csikós, Ágnes; Rhee, YongJoo; Teno, Joan M.; Cohen, Joachim; Houttekier, Dirk

doi:10.1016/j.jamda.2014.11.003

Cited by 114 publications

(113 citation statements)

References 38 publications

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“…The under-reporting of dementia on death certificates was noted in articles in this review [10, 18–20]. Doll et al [21] compared their findings to European statistics (EURODEM) and determined that they had only recorded 30% of dementia cases from death certificates.…”

Section: Resultsmentioning

confidence: 96%

Dementia ascertainment using existing data in UK longitudinal and cohort studies: a systematic review of methodology

et al. 2017

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BackgroundStudies investigating the risk factors for or causation of dementia must consider subjects prior to disease onset. To overcome the limitations of prospective studies and self-reported recall of information, the use of existing data is key. This review provides a narrative account of dementia ascertainment methods using sources of existing data.MethodsThe literature search was performed using: MEDLINE, EMBASE, PsychInfo and Web of Science. Included articles reported a UK-based study of dementia in which cases were ascertained using existing data. Existing data included that which was routinely collected and that which was collected for previous research. After removing duplicates, abstracts were screened and the remaining articles were included for full-text review. A quality tool was used to evaluate the description of the ascertainment methodology.ResultsOf the 3545 abstracts screened, 360 articles were selected for full-text review. 47 articles were included for final consideration. Data sources for ascertainment included: death records, national datasets, research databases and hospital records among others. 36 articles used existing data alone for ascertainment, of which 27 used only a single data source. The most frequently used source was a research database. Quality scores ranged from 7/16 to 16/16. Quality scores were better for articles with dementia ascertainment as an outcome. Some papers performed validation studies of dementia ascertainment and most indicated that observed rates of dementia were lower than expected.ConclusionsWe identified a lack of consistency in dementia ascertainment methodology using existing data. With no data source identified as a “gold-standard”, we suggest the use of multiple sources. Where possible, studies should access records with evidence to confirm the diagnosis. Studies should also calculate the dementia ascertainment rate for the population being studied to enable a comparison with an expected rate.Electronic supplementary materialThe online version of this article (doi:10.1186/s12888-017-1401-4) contains supplementary material, which is available to authorized users.

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Section: Resultsmentioning

confidence: 96%

Dementia ascertainment using existing data in UK longitudinal and cohort studies: a systematic review of methodology

et al. 2017

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“…Here, most patients with dementia live at home, but almost all die in institutional long-term care settings [16, 17]. Certified elderly care physicians coordinate multidisciplinary teams in nursing homes.…”

Section: Methodsmentioning

confidence: 99%

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

et al. 2017

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BackgroundWhen entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base.MethodsIn 2015–2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries. The terminal phase was defined as dying but because of the difficulty predicting it, we included advanced dementia. We initially analysed the three parts separately, followed by an integrated analysis of (1)-(3) to inform service development.Results(1) The EAPC domain of “avoiding overly aggressive, burdensome, or futile treatment” was regarded of particular relevance in the terminal phase, along with a number of recommendations that refer to providing of comfort. (2) Families preferred continuity in care and living arrangements. Despite a recognition that this was a time when they had complex support needs, they found it difficult to accept involvement of a large team of unfamiliar (professional) caregivers. Mostly, terminal care was preferred at the place of residence. (3) The expert interviews identified preferred, successful models in which a representative of a well-trained team has the time, authority and necessary expertise to provide care and education of staff and family to where people are and which ensure continuity of relationships with and around the patient.ConclusionA mobile team that specializes in palliative care in dementia and supports professional and family caregivers is a promising model. Compared to transfer to a hospice in the last weeks or days, it has the potential to address the priorities of families and patients for continuity of care, relationships and specialist expertise.

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“…More details on the database and methods can also be found in other publications based on the IPoD database. 38–40 …”

Section: Methodsmentioning

confidence: 99%

Differences in place of death between lung cancer and COPD patients: a 14-country study using death certificate data

Cohen

Beernaert

Block

et al. 2017

npj Prim Care Resp Med

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Chronic obstructive pulmonary disease and lung cancer are leading causes of death with comparable symptoms at the end of life. Cross-national comparisons of place of death, as an important outcome of terminal care, between people dying from chronic obstructive pulmonary disease and lung cancer have not been studied before. We collected population death certificate data from 14 countries (year: 2008), covering place of death, underlying cause of death, and demographic information. We included patients dying from lung cancer or chronic obstructive pulmonary disease and used descriptive statistics and multivariable logistic regressions to describe patterns in place of death. Of 5,568,827 deaths, 5.8% were from lung cancer and 4.4% from chronic obstructive pulmonary disease. Among lung cancer decedents, home deaths ranged from 12.5% in South Korea to 57.1% in Mexico, while hospital deaths ranged from 27.5% in New Zealand to 77.4% in France. In chronic obstructive pulmonary disease patients, the proportion dying at home ranged from 10.4% in Canada to 55.4% in Mexico, while hospital deaths ranged from 41.8% in Mexico to 78.9% in South Korea. Controlling for age, sex, and marital status, patients with chronic obstructive pulmonary disease were significantly less likely die at home rather than in hospital in nine countries. Our study found in almost all countries that those dying from chronic obstructive pulmonary disease as compared with those from lung cancer are less likely to die at home and at a palliative care institution and more likely to die in a hospital or a nursing home. This might be due to less predictable disease trajectories and prognosis of death in chronic obstructive pulmonary disease.

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International Variation in Place of Death of Older People Who Died From Dementia in 14 European and non-European Countries

Cited by 114 publications

References 38 publications

Dementia ascertainment using existing data in UK longitudinal and cohort studies: a systematic review of methodology

Dementia ascertainment using existing data in UK longitudinal and cohort studies: a systematic review of methodology

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

Differences in place of death between lung cancer and COPD patients: a 14-country study using death certificate data

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