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.