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. Data were provided from family members and physicians of patients with dementia. The main goals were to describe treatment, care and patient- and family-level outcomes, and factors associations with outcome [11, 14]. The 28 nursing homes and 6 residential homes with psychogeriatric units studied were selected for variability in relevant characteristics [14], for example, facility size (ranging from 11 to 210 “psychogeriatric” beds, mostly for dementia), and availability of a palliative care unit. These facilities represented the country average with respect to family’s perceived quality of care as reported in public online databases [14]. We report on 17 physician teams (28 facilities) that collected data on 372 residents with a diagnosis of dementia upon admission to the facility. The homes recruited families and the 58% who participated were not demographically different from non-participants. The study obtained ethics approval from the Medical Ethics Committee of the VU University Medical Center (no 2006/179) and families provided informed consent before taking part.

Data collection

Facilities recruited family members deemed most involved in the patient’s care up to a year before conclusion of data collection. Families reported their understanding of the nature of dementia eight weeks after the patient’s admission to the facility (baseline), and semi-annually. The eight-week time frame before the baseline assessment allowed for the physician care planning meeting with the family, which is required within six weeks of admission [15]. Physicians were surveyed within two weeks of the patient’s death and families after two months.

Understanding variables

Figure 1 (left box) lists the concepts used to define families’ baseline understanding of dementia. As in previous US work [6], comprehension of complications (item 1) was defined as understanding the types of health problems patients may experience in the later stages of dementia. We asked both families and physicians to estimate life expectancy (prognosis; items 2 and 6), with response options “shorter than one month,” “one through six months,” “seven through twelve months,” “longer than twelve months,” and “don’t know.” We dichotomized these categories into a prognosis of 12 months or less versus longer than 12 months and don’t know.

Figure 1 Framework guiding analyses. aReferring to the assessment at eight weeks after admission, or ((3), (4) and (7)) the period between admission and eight weeks after admission. bMid-way study, for proximity to family assessment throughout the data collection period, or, for newly employed physicians, soon after being employed. cPossible mediators (a) and (b) are factors related to (more balanced) families’ decision making as described by the theoretical model of Caron et al.[5]. Full size image

“Having been counseled” referred to receiving information on the type of health problems patients may experience in later stages of dementia (item 3) and on how long the patient may live (item 4). The general perception of whether dementia is a disease you can die from (items 5 and 8) was assessed at baseline for the families and at a year after start of data collection for the physicians, or soon after their employment by the participating home. This perception was rated with five (score 1 to 5) response options: “completely agree,” “partly agree,” “neither agree nor disagree,” “partly disagree” and “completely disagree,” with a “don’t know” option for families only. We considered the respondent to have agreed with the statement if they agreed “completely” or “partly.” For regression analyses, we combined “don’t know” with the middle category of “neither agree, nor disagree,” and we summed families’ and physicians’ 1 to 5 scores resulting in total scores between 2 and 10.

Possible confounders

Possible confounding factors for which we adjusted were families’ highest completed educational level (combined into a four-level hierarchical variable) and whether the assessor of comfort at death was a physician or a nurse since physicians may report higher levels of comfort [16]. 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].

Possible mediators

Possible mediators of understanding of the progressive nature of dementia and patient outcome were care processes and other family factors identified by Caron et al. as related to decision making, such as attitudes, relationships and interaction [5, 13] (Figure 1, middle box). Table 1 shows the possible mediators as defined in the DEOLD study.

Table 1 Possible mediators and associations between perception of dementia and patient comfort when dying (EOLD-CAD) Full size table

Regarding care processes as possible mediators, we used indicators for palliative care and overall assessments of quality of care to limit confounding of single treatment by patient condition (for example, antibiotic treatment may reduce discomfort in pneumonia [19]). Similar to previous US work [6], we defined potentially burdensome interventions as hospitalization, emergency room visit, or new or ongoing parenteral therapy or tube feeding.

Outcome

The assessment of a patient’s comfort during the dying process used End-of-Life in Dementia–Comfort Assessment in Dying (EOLD-CAD; staff assessment, Figure 1, right box) [20], a validated 14-item scale which assesses quality of dying [21] and has better psychometric properties and user friendliness than other such measures [16]. Total scores range from 14 to 42 with higher scores representing more comfort.

Subgroups by dementia severity

Dementia severity was assessed with the highly discriminative Bedford Alzheimer Nursing Severity-Scale (BANS-S) [22, 23]. To compare with US work [6], we also defined advanced dementia as a Cognitive Performance Scale (CPS) [24] score of 5 or 6 and a Global Deterioration Scale (GDS) [25] score of 7.

Analyses

Power calculations with α = 0.05, R2 = 0.17, 80% power, ICC = 0.05 and a mean of 3 patients per cluster (physician), indicated that 135 patients sufficed. We performed generalized estimating equations (GEE) regression analyses to adjust for clustering of patients with physicians, with EOLD-CAD-scores as the dependent variable, and understanding as the independent variable. Confidence intervals (95% CI) were calculated. As demonstrated to be appropriate in previous work [26], missing items, if maximum 4 of 12, were imputed with patient means to calculate a total score. Later missing data on physician’s perceptions of dementia (11%) was mostly due to staff turnover and was imputed in the combined physician-family score by the mean of the not very variable physician’s score. Analyses were performed without imputation, and, to check for possible differences, also with simple imputation.

We performed mediator analyses according to the MacArthur approach [27]. In brief, we examined the possible mediators assessing in adjusted GEE analyses, first, if there was a significant (P <0.05) association between the understanding variable and the possible mediator, and, second, if there also was an association or interaction between the possible mediator and outcome in presence of the understanding variable. We used probit, ordinal probit, Poisson or linear regression as appropriate for the type of possible mediator being the outcome in the first series of analyses. If associations were significant in both steps (Table 1), the mediator was tested in structural equation modeling (SEM) to model multiple associations and quantify direct and indirect effects using M-plus version 6.11 (2011) (Muthen & Muthen, Los Angeles, CA, USA). Other analyses were performed with PASW 18.0.0 (2009) (PASW Statistics for Windows, Version 18.0, SPSS Inc., Chicago, IL, USA).

To examine possible family-physician communication and resulting consensus, we additionally tested correlations between families’ and physicians’ understanding using Pearson’s correlation coefficients. We calculated Cohen’s kappa and 95% CI for agreement between family and physicians responding to the same dichotomous understanding items. Agreement was slight for kappa <0.2; fair, 0.2 to 0.4; moderate, 0.4 to 0.6; substantial 0.6 to 0.8; almost perfect >0.8 [28].