Scales for evaluation of End-of-Life Care in Dementia

Abstract

Systematic evaluation of end-of-life care in dementia has been hampered by a lack of instruments to specifically address those issues that are unique for persons who are dying with dementia. This study evaluated psychometric properties of three scales designed to measure outcomes of care of persons suffering from terminal dementia. A survey of family caregivers whose loved one died during the past year was conducted using a questionnaire that included questions regarding satisfaction with care, physical and emotional symptoms that occurred during the last 90 days of the care recipient's life, and comfort during the dying process. Three scales were developed based on responses from 156 questionnaires: Satisfaction with Care at the End-of-Life in Dementia (SWC-EOLD), Symptom Management at the End-of-Life in Dementia (SM-EOLD) with Physical and Psychological Symptoms subscales, and Comfort Assessment in Dying with Dementia (CAD-EOLD) with four subscales: Physical Distress, Dying Symptoms, Emotional Distress, and Well Being. The three scales developed and evaluated in this study can be used as outcome measures in studies investigating effectiveness of interventions aimed to improve end-of-life care for individuals with dementia.