Table 1.
Part A, baseline visit: instruments and measures
| Assessments of the person with dementia | |
| General data: Demographic data, living and care situation | |
| Etiology of dementia, date of symptom onset, date of dementia diagnosis | |
| Psychiatric and somatic comorbidities | |
| Medical care: Pharmacotherapy, tube feeding, custodial measures | |
| Cognitive status: Mini-Mental Status Examination (MMSE); Brief Language Assessment | |
| Severity of dementia: Clinical Dementia Rating (CDR) | |
| Activities of daily living: Barthel-Index | |
| Pain: Pain Assessment in Advanced Dementia (PAINAD) Scale | |
| Comfort: Discomfort Scale in Dementia (DS-DAT) | |
| Patient suffering: Mini Suffering State Examination (MSSE) | |
| Patient examination: Neurologic and somatic symptoms; psychopathology | |
| Assesment of palliative care provision | |
| Assessment of advance care planing (palliative care goals, advance directives, emergency orders) | |
| Additional information about the person with dementia obtained from the family caregiver and, if necessary, from the nursing staff (if applicable) | |
| Quality of life: Quality of Life in Late Stage Dementia (QUALID) | |
| Symptom management: Modified version of End of Life in Dementia-Symptom Management/ EOLD-SM | |
| Behavioral and psychological symptoms in dementia: Neuropsychiatric Inventory (NPI) | |
| Suicidal ideation and behavior | |
| Interviews of the family caregiver | |
| General data: Demographic data, living situation | |
| Wellbeing: WHO Five (WHO-5) | |
| Depression: Beck Depression Inventory II (BDI II) | |
| Strain: Caregiver Strain Index (CSI) (Robinson et al., 1983) | |
| Burden: Burden Scale for Family Caregivers (BSFC) | |
| Perception of care: Family Perception of Care Scale of St. Michael’s Hospice North Hampshire (FPCS) (https://www.stmichaelshospice.org.uk/NHSS_family_perceptions_of_care_scale.pdf) | |
| Satisfaction with care: Modified version of End of Life in Dementia-Satisfaction with Care (EOLD-SWC) | |
| Open questions: Caregivers’ problems, challenges, barriers, needs, preferences regarding palliative care | |
| Description of the LTC facility | |
| If the person with dementia lives in an LTC facility, the administrator is asked to provide a detailed and standardized description of the facility, infrastructure, organization, service provision, and palliative care provision. |