Interviews of the family caregiver | |
Symptoms, treatment and care before death and circumstances of death as reported by the caregiver and identified by retrospective evaluation of medical and care files; evaluation if advance directives have been applied. | |
Caregiver satisfaction with care: End of Life in Dementia-Satisfaction with Care (EOLD-SWC) (Volicer L et al., [8]) | |
Burden: Modified version of Burden Scale for Family Caregivers (BSFC) | |
Patient suffering: Mini Suffering State Examination (MSSE) | |
Quality of life: Modified version of Quality of Life in Late Stage Dementia (QUALID) | |
Symptom management: End of Life in Dementia-Symptom Management (EOLD-SM) (Volicer L et al., [8]) | |
Persons with dementias comfort in dying: Comfort Assessment of Dying with Dementia (CAD-EOLD) (Volicer L et al., [8]) | |
Caregiver wellbeing: WHO five (WHO-5) | |
Caregiver depression: Beck Depression Inventory II (BDI II) | |
Open questions: Caregivers’ problems, challenges, barriers, needs, preferences regarding end-of-life care. | |
Description - LTC | |
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. |