Table 1.
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 | ||||
Quality of Life in Late-Stage Dementia (QUALID) [50, 51] | 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 |
Due to collaboration with other research groups and input from research assistants in the field, changes in the baseline dataset were done during the inclusion period
aThrough collaboration with two research groups interested in a) palliative care and b) physical strength, three assessment tools for palliative care and two physical tests were added to the baseline-dataset after 153 patients had been included
bAfter the inclusion of 544 patients, some assessment tools were removed from the baseline-data set since the included patients ensured sufficient power to complete the planned analysis, and to keep the dataset at a minimum to ensure that the patients and their caregivers were not exhausted by the large size of the dataset