Background 1 The most important reason for this slow growth of empirical data in this area probably relates to the obvious methodological problems of obtaining reliable subjective accounts of individuals with severe dementia who have compromised cognitive abilities, frequently with concurrent impaired communicative skills. 2 3 4 5 6 7 7 As mentioned above, there were no quality of life assessment tools for patients with very severe dementia as representative of our population. Unfortunately, the instruments developed for demented patients were not found applicable to our patients who were in much more advanced stages of dementia (e.g. the Mini Mental State Examination could not be completed by any of our patients). For this reason a project was launched in 1998 by the department of Palliative Geriatrics (Geriatriezentrum am Wienerwald), to develop a new instrument based on observations made by the staff (physicians, nurses and physiotherapists) completely independent on the patients' cooperation. Methods Patients 2  Development of the item-pool Thirteen staff members comprising doctor, nurses, and therapists from the department of Palliative Geriatrics at the Geriatriezentrum am Wienerwald in Vienna had observed severely demented patients during a one year period (May 1998 to April 1999). The patient's behaviour was documented at one of the wards (32 beds). Based on this documentation, 65 items for the description of behaviour in demented inpatients were derived and allocated to categories, supposedly reflecting relevant aspects of their well-being such as voice, language, mood, eye contact, acceptance of body contact, gait, muscular tension, hand movement, sleep, activities, communication, independence concerning food intake. This approach is different from prevailing approaches, which mainly are based on the use of items from existing instruments measuring specific aspects. Subsequently, by means of this item-list, 771 assessments of 217 in-patients in various situations such as eating, dressing, grooming had been obtained between June 1999 and September 2000 by physicians and nurses. Each of the original 65 items was scored on a 5-point Likert scale from 0 = never to 4 = always. Further assessments 8 9 10 11 The BCRS describes the severity of cognitive impairment providing five main axes (concentration, short term memory, long term memory, orientation, and self-care ability) and five co-axes (language, psychomotoric, mood and behaviour, drawing skills, calculating skills) each rated on a 7-step scale. The GDS is a proxy rating scale to assess the severity of dementia in elderly people on a seven point Likert-type scale (1 = no impairment; 7 = most severe impairment). The Barthel-Index was used to assess the activity of daily living in 10 areas (feeding, transfers bed to chair and back, grooming, toilet use, bathing, mobility, climbing stairs, dressing, stool control, bladder control). The Spitzer Index is a global quality of life measure covering five areas (activity, daily life, health, social relations, future) with a maximum score of 10 points. 12 Statistical analysis Descriptive statistics were generated for demographic data and diagnostic categories and for the BCRS and GDS scales, for the Barthel and Spitzer Indices, as well as for the newly developed instrument. A factor analysis (principle component analysis, oblimin with Kaiser normalisation as rotation method), based on these 771 assessments was performed. The number of interpretable factors was determined by interpretation of a Scree plot. The consistency of the factors was tested by Cronbach's alpha coefficients. To improve the consistency of the scales, items have been deleted based on the criteria of changes in magnitude of the Cronbach's alpha coefficients and on the fit of the item with the content of the core items of the factors. To test the stability of the factor structure, we conducted separate analyses for doctors and nurses. For testing construct validity, we used the two external criteria, Brief Cognitive Rating Scale and the Barthel-Index. To test for inter-rater reliability Spearman rank correlation coefficients were calculated. We included only data in which the electronic recording confirmed that it was obtained at exactly the same time. Results Most patients suffered from severe dementia as indicated by the results of the BCRS (mean ± SD: 57 ± 8.8) and GDS (mean ± SD: 5.7 ± 1.1) and the low level of activity of daily living (mean ± SD of Barthel Index: 26.8 ± 29.7) in the present sample also reflected by the distribution of diagnoses according to ICD-10. Of the 771 assessments 386 had been performed by nurses and 385 assessments by physicians. By means of the electronic recordings we identified 22 pairs of assessments made at the same time by a nurse and a physician. A planned feasibility analysis after 120 assessments resulted in the exclusion of the Spitzer Index because of a general floor effect (mean score <3). 1 Table 1 Eigenvalues and explained amounts of variance for the 5-factor solution  Eigenvalues % of Variance Cumulative %   Factor nurse physician nurse physician nurse physician 1 10.0 10.7 24.4 26.0 24.4 26.0 2 5.7 6.1 13.8 15.0 38.2 41.0 3 4.9 4.8 11.9 11.8 50.0 52.1 4 2.5 2.1 6.1 5.0 56.1 58.0 5 2.0 2.5 4.9 6.1 61.0 63.9 Extraction Method: Principal Component Analysis. 2 Table 2 Structure Matrix Factor 1 2 3 4 5    Nurse Physician Nurse Physician Nurse Physician Nurse Physician Nurse Physician Communication  ITEM 59 0.82 0.83 -0.19 -0.14 0.04 -0.32 0.29 0.05 0.06 0.25 ITEM 62 0.81 0.64 0.02 0.16 0.08 -0.39 0.28 0.22 -0.09 0.34 ITEM 6 0.79 0.78 -0.26 0.13 -0.07 -0.29 0.18 0.08 0.10 0.17 ITEM 61 0.79 0.67 -0.23 -0.13 0.10 -0.56 0.22 0.09 0.08 0.25 ITEM 8 0.78 0.81 -0.20 0.08 -0.16 -0.25 0.14 0.12 0.12 0.18 ITEM 65 0.73 0.77 -0.27 -0.13 -0.05 -0.05 0.52 0.10 0.01 0.48 ITEM 56 0.70 0.69 -0.08 0.08 -0.15 0.07 0.07 -0.06 0.05 0.10 ITEM 14 0.70 0.85 -0.11 -0.11 0.02 -0.10 0.44 -0.06 0.15 0.26 ITEM 32 0.66 0.64 -0.14 -0.06 0.35 -0.48 0.03 -0.11 0.15 0.22 ITEM 31 0.65 0.65 -0.12 0.01 0.32 -0.54 0.08 0.00 0.15 0.19 ITEM 13 0.64 0.76 -0.24 -0.04 0.06 -0.42 0.11 0.13 0.12 0.20 ITEM 50 0.64 0.77 -0.40 -0.19 -0.04 -0.17 0.46 -0.03 0.19 0.35 ITEM 64 0.62 0.61 0.05 0.13 0.06 -0.17 0.49 -0.21 0.03 0.40 ITEM 60 0.59 0.69 0.12 0.17 -0.27 0.03 0.01 0.28 -0.11 0.07 ITEM 15 0.45 0.73 0.03 -0.13 -0.08 0.19 0.34 -0.19 0.12 0.06  Negative Affect  ITEM 18 -0.08 0.04 0.83 0.87 -0.03 -0.14 -0.08 0.11 -0.28 -0.02 ITEM 22 -0.04 0.09 0.80 0.74 0.11 -0.34 -0.10 0.08 -0.20 0.00 ITEM 3 -0.07 0.02 0.75 0.82 0.16 -0.18 -0.13 0.17 -0.11 -0.06 ITEM 24 -0.09 -0.01 0.74 0.76 -0.05 -0.18 -0.05 0.12 -0.37 0.08 ITEM 27 0.04 0.02 0.66 0.77 -0.13 -0.10 -0.17 0.45 -0.45 -0.05 ITEM 17 -0.28 -0.17 0.66 0.71 -0.08 0.14 -0.16 0.38 -0.58 -0.12 ITEM 25 -0.30 0.17 0.65 0.63 0.03 -0.02 -0.29 -0.02 -0.08 -0.07 ITEM 54 -0.20 -0.20 0.62 0.58 -0.09 0.10 0.19 0.28 -0.34 0.05 ITEM 53 -0.10 -0.01 0.60 0.50 -0.07 0.23 0.14 0.17 -0.28 0.01 ITEM 47 -0.28 -0.26 0.53 0.61 0.00 0.11 -0.26 0.37 -0.45 -0.11  Bodily contact  ITEM 35 0.00 0.17 0.02 -0.03 0.93 -0.76 -0.08 -0.13 0.11 -0.11 ITEM 34 0.01 0.27 0.00 0.07 0.93 -0.81 -0.09 -0.12 0.12 -0.09 ITEM 33 0.03 0.37 0.00 0.14 0.90 -0.77 -0.09 -0.06 0.12 0.00 ITEM 36 -0.06 -0.21 0.01 0.10 0.89 -0.81 -0.13 -0.15 0.16 -0.08 ITEM 37 -0.06 -0.27 0.01 0.15 0.86 -0.76 -0.12 -0.16 0.17 -0.06  Aggression  ITEM 4 -0.14 0.01 0.25 0.27 -0.19 0.08 0.13 0.91 -0.88 0.08 ITEM 19 -0.24 -0.05 0.31 0.18 -0.22 0.16 0.13 0.84 -0.83 0.09 ITEM 1 0.05 0.20 0.28 0.20 -0.07 0.12 0.01 0.71 -0.78 0.08 ITEM 29 0.22 0.11 0.20 0.21 -0.10 0.05 0.03 0.84 -0.77 0.15  Mobility  ITEM 40 0.42 0.56 -0.31 -0.23 -0.20 0.08 0.79 -0.14 0.22 0.80 ITEM 41 0.49 0.64 -0.28 -0.27 -0.23 0.07 0.71 -0.19 0.23 0.63 ITEM 57 0.01 0.01 0.01 0.08 -0.05 0.00 0.68 0.14 -0.18 0.70 ITEM 42 0.04 0.07 0.07 0.06 -0.02 0.05 0.68 0.20 -0.18 0.80 ITEM 43 0.43 0.63 -0.43 -0.15 -0.08 -0.09 0.66 0.00 0.22 0.64 ITEM 55 0.41 0.46 -0.14 -0.07 -0.10 0.04 0.42 -0.23 0.03 0.34 Extraction Method: Principal Component Analysis. Rotation Method: Oblimin with Kaiser Normalization. 3 4 Table 3 Cronbach alpha coefficients Factor Number of Items Nurse Physician 1 – Communication 15 0.93 0.94 2 – Negative Affect 10 0.88 0.89 3 – Bodily Contact 5 0.90 0.90 4 – Aggression 4 0.86 0.87 5 – Mobility 6 0.81 0.82 Table 4 Item severity and Item selectivity  Item severity Item selectivity Communication Nurse Physician Nurse Physician  59 Responding to distant calls 0.57 0.63 0.82 0.85 62 Looking for contact 0.53 0.56 0.81 0.71 06 Speaks comprehensibly 0.64 0.69 0.79 0.81 61 Contact possible 0.83 0.90 0.79 0.74 08 Speaks meaningful groups of words 0.59 0.68 0.77 0.82 65 Eats and drinks by him-/herself 0.66 0.68 0.79 0.78 56 Reads newspaper 0.24 0.19 0.69 0.64 14 Carries out simple orders 0.39 0.64 0.73 0.84 32 Maintains visual contact 0.72 0.74 0.65 0.71 31 Visual contact possible 0.80 0.85 0.63 0.72 13 Comprehends single words 0.89 0.88 0.63 0.81 50 Uses both hands intentionally 0.62 0.67 0.70 0.79 64 Worries about others 0.25 0.23 0.65 0.63 60 Rings the bell 0.29 0.31 0.58 0.67 15 Carries out complicated orders 0.08 0.24 0.47 0.64  Negative Affect      18 Full of despair 0.40 0.43 0.82 0.86 22 Sad/crying 0.32 0.36 0.77 0.75 03 Whining voice 0.33 0.32 0.72 0.83 24 Nervous/anxious 0.37 0.40 0.76 0.75 27 Wailing 0.30 0.31 0.69 0.80 17 Tensed 0.36 0.43 0.73 0.72 25 Resignated 0.27 0.38 0.65 0.63 54 Restless/confused 0.25 0.31 0.62 0.59 53 Problems to fall asleep 0.25 0.36 0.59 0.49 47 Muscular tension 0.37 0.43 0.60 0.62  Bodily Contact      35 Bodily contact possible at shoulders 0.77 0.87 0.92 0.78 34 Bodily contact possible at arms 0.81 0.91 0.90 0.80 33 Bodily contact possible at hands 0.82 0.94 0.88 0.73 36 Bodily contact possible at the head 0.63 0.63 0.91 0.88 37 Bodily contact possible in the face 0.56 0.55 0.88 0.84  Aggression      04 Aggressive voice 0.27 0.27 0.89 0.90 19 Aggressive acts 0.21 0.19 0.85 0.84 01 Loud voice 0.32 0.33 0.80 0.80 29 Insulting others 0.23 0.22 0.81 0.88  Mobility      40 Walking upright 0.37 0.40 0.92 0.95 41 Walking straightup to 0.33 0.36 0.87 0.87 57 Departs from ward 0.07 0.05 0.53 0.46 42 Wanders around 0.16 0.17 0.53 0.62 43 Sitting upright 0.57 0.57 0.80 0.81 55 Ready to help on ward 0.13 0.09 0.55 0.54 5 Table 5 Correlations with BCRS scores and Barthel Index  Communication Negative Affect Bodily contact Aggression Mobility Physicians       BCRS 1 – concentration -0.71* 0.05 0.07 -0.02 -0.45*  BCRS 2 – short time memory -0.67* 0.02 0.11 -0.01 -0.42* BCRS 3 – long time memory -0.68* 0.14 0.09 0.08 -0.46* BCRS 4 – orientation -0.65* 0.12 0.12 0.11 -0.40* BCRS 5 – everyday life competency -0.47* -0.04 -0.04 -0.10 -0.44* BCRS 6 – language -0.71* -0.02 0.02 -0.09 -0.37* BCRS 7 – psychomotorics -0.41* -0.01 0.06 -0.10 -0.59* BCRS 8 – mood and behaviour -0.60* 0.10 -0.02 0.03 -0.34* BCRS 9 – constructive skills -0.55* 0.03 0.02 -0.06 -0.34* BCRS 10 – calculation skills -0.59* 0.17* 0.09 0.09 -0.35*  Main axis -0.73* 0.07 0.09 0.02 -0.49* Co-axis -0.71* 0.07 0.04 -0.03 -0.49* BCRS total score -0.74* 0.07 0.06 -0.01 -0.50*  Nurses       Barthel Item 1 – feeding 0.70* -0.21* -0.10 0.02 0.63* Barthel Item 2 – transfer 0.46* -0.27* -0.17* -0.08 0.83* Barthel Item 3 – personal care 0.41* -0.17* -0.02 -0.12 0.36* Barthel Item 4 – toilet use 0.47* -0.25* -0.20* -0.12 0.67* Barthel Item 5 – bathing 0.08 -0.07 0.04 -0.06 0.09 Barthel Item 6 – moving 0.43* -0.28* -0.18* -0.09 0.83* Barthel Item 7 – stairs 0.32* -0.23* -0.14 -0.03 0.72* Barthel Item 8 – dressing 0.51* -0.23* -0.22* -0.09 0.67* Barthel Item 9 – bowel 0.48* -0.20* -0.16* -0.15* 0.57* Barthel Item 10 – bladder control 0.44* -0.20* -0.22* 0.14 0.56* Barthel Index 0.56* -0.28* -0.20* -0.10 0.83* * p < 0.001 6 Table 6 Factor Scores of Observations by Gender of the Patients Factor Observations of Males (x ± SD) N = 123 Observations of Females (x ± SD) N = 648 t-score p value 1 – Communication 34.8 ± 13.2 33.8 ± 11.8 0.82 0.415 2 – Negative Affect 9.5 ± 6.7 14.8 ± 6.7 -8.37 <0.001 3 – Bodily Contact 14.9 ± 4.3 16.7 ± 4.9 -4.18 <0.001 4 – Aggression 3.1 ± 3.0 4.3 ± 3.5 -3.21 0.001 5 – Mobility 8.1 ± 5.5 6.3 ± 5.5 3.38 0.001 7 Table 7 Paired sample test and Spearman Rank correlation coefficients between nurses and physicians related to the same patient at the same day (22 pairs) Factor Nurse (x ± SD) Physician (x ± SD) t-score/p R/p 1 – Communication 25.8 ± 10.5 26.4 ± 8.9 -0.35/0.727 0.71/<0.001 2 – Negative Affect 11.9 ± 7.6 8.6 ± 5.0 2.46/0.023 0.57/0.006 3 – Bodily contact 15.9 ± 5.7 18.4 ± 2.9 -2.22/0.038 0.53/0.011 4 – Aggression 4.3 ± 3.0 2.2 ± 2.1 3.69/0.001 0.35/0.112 5 – Mobility 6.5 ± 5.7 5.1 ± 5.8 2.03/0.056 0.81/<0.001 Discussion The special problem in the assessment of well-being in patients with severe dementia is their lack of competence which is compromising the reliability of their reports. Consequently, observer ratings are the only alternative for such self-ratings. However, observer ratings inherit the potential risk of overrating the well-being of patients if the provider and rater of health care services are identical. We have controlled for this risk by semi-quantitatively describing the frequency of distinct behaviour patterns in demented patients. The results of this study demonstrate that the behaviour of old-old patients with severe dementia can be described by five factors of the Vienna List. By explaining more than 60% of the total variance these five factors obviously cover a considerable part of the possible spectrum of behaviour in these patients. Since nurses and physicians have different intensity of contact and corresponding different perspectives, it was surprising that their assessments were highly correlated in three of the five factors. The two factors, aggression and mobility, yielded higher scores among the nurses as compared to doctors. As concerns aggression, there are mainly two explanations for this difference. Firstly, nurses spend more time and have closer contact with the patients and consequently have a higher risk to induce aggressive behaviour in the patients. In addition, the extended period of contact increases the chance to experience an episode of aggressive behaviour. Secondly, patients normally behave differently towards nurses and doctors due to differences in role expectation and familiarity related to the frequency of contact. However, we consider this later explanation as unlikely in these patients due to their cognitive impairment. Regarding mobility it is plausible that the doctors report lower scores for mobility of the patients as the doctor mainly sees the patient under certain circumstances, i.e. during the rounds where the ward routines limit the mobility of the patient. Since these five factors encompass most of the behavioural repertoire of demented old-old patients we assume that these factors can be regarded as a useful approach to describe the well-being in these patients.