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Table 2 Part B, follow-up visit with family caregiver post-mortem: instruments and measures

From: IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol

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.