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. |