| Description | Base-line version 1 0212 n=153 | Base-linea version 2 0712 n=391 | Base-lineb version 3 0813 n=152 | Follow up 6 mnd version 1 0812 n=318 | Follow upb 6 mnd version 2 0813 n=191 | Follow up from 12 mnd version |
---|---|---|---|---|---|---|---|
Physical health status | |||||||
 Blood pressure and pulse |  | x | x | x | x | x | x |
 Body Mass Index |  | x | x | x | x | x | x |
 General Medical Health Rating (GMHR) [31] | Four-category scale rating medical health | x | x | x | x | x | x |
 Mobilization-Observation-Behaviour-Intensity-Dementia Pain Scale (MOBID-2) (Including VAS) [32] | Assessment of pain in patients with dementia | x | x | x | x | x | x |
 Unified Parkinson’s Disease Rating Scale (UPDRS), six-item version [33] | Assessment of extra-pyramidal symptoms | x | x |  | x |  |  |
 Edmonton Symptom Assessment System (ESAS-r) [34] | Assessment of pain and distressing symptoms such as fatigue, drowsiness, nausea, appetite disturbances, dyspnoea, depression, anxiety, and wellbeing |  | x | x |  |  |  |
 Karnofsky Performance Status (KPS) [35] | Functional performance status |  | x | x | x |  |  |
 Resident Assessment Instrument (RAI), subscales skin and nutrition [36] | Distressing symptoms, care and treatment provided |  | x |  | x |  |  |
 Charlson’s co-morbidity index [37] | Co-morbid conditions | x | x | x | x |  |  |
Cognitive function and severity of dementia | |||||||
 Mini Mental State Examination (MMSE) [23] | Screening for cognitive impairment | x | x | x | x | x | x |
 Severe Impairment Battery – 8 (SIB-8) [24] | Cognitive impairment in severe dementia | x | x | x | x | x | x |
 Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) [26] | Informant-rated scale of estimated cognitive decline | x |  |  |  |  |  |
 Clinical Dementia Rating Scale (CDR) [28] | Level of dementia (cognition and function) | x | x | x | x | x | x |
 Functional Assessment Staging of Alzheimer’s Disease (FAST) [30] | Level of dementia (cognition and function) |  | x | x | x | x | x |
 Diagnoses | Type of dementia according to an algorithm | x | x | x |  |  |  |
Neuropsychiatric and depressive symptoms | |||||||
 Neuropsychiatric Inventory Nursing Home version (NPI-NH) [38] | Neuropsychiatric symptoms | x | x | x | x | x | x |
 Neuropsychiatric Inventory–Questionnaire (NPI-Q) [43] | A brief assessment of neuropsychiatric symptoms | x | x |  |  |  |  |
 Cornell Scale for Depression in Dementia (CSDD) [44] | Depression in persons with dementia. | x | x | x | x | x | x |
 Confusion Assessment Method (CAM) [45] | Assesses the occurrence of delirium | x | x |  | x |  |  |
Functioning in daily living and physical symptoms | |||||||
 Physical Self-Maintenance Scale (PSMS) [46] | Measures basal ADL | x | x | x | x | x | x |
 Life-Space Assessment (LSA) [47] | Assessment of life-space mobility |  | x | x | x | x | x |
 Short Physical Performance Battery (SPPB) [48] | Chair stand, balance, and walking |  | x | x | x | x | x |
Quality of life | |||||||
 Quality of Life in Alzheimer’s Disease – patient rated (QoL-AD) [49] | Measures disease-specific QoL | x |  |  |  |  |  |
 Quality of Life in Alzheimer’s Disease – staff rated (QoL-AD) [49] | Measures disease-specific QoL | x |  |  |  |  |  |
 Quality of Life in Alzheimer’s Disease – patient or staff rated (QoL-AD) [49] | Measures disease-specific QoL |  | x |  | x |  |  |
Measures QoL in severe dementia | x | x | x | x | x | x | |
 EQ-5D (including VAS) [52] | Measures health-related QoL | x | x | x | x | x | x |
 Medication regular prescription | Drug type and daily dose | x | x | x | x | x | x |
Cost of care | |||||||
 Resource Utilization in Dementia (RUD) [54] | Formal and informal care | x | x | x |  |  |  |
 Resource Utilization in Dementia – Formal Care (RUD-FOCA) [55] | Measures direct care time required in nursing |  |  |  | x | x | x |
Caregiver burden | |||||||
 Relative Stress Scale (RSS) [56] | Assessment of caregiver burden | x |  |  |  |  |  |