Outcome Measures for Dementia in the Advanced Stage and at the End of Life

Increasing life span and lack of medication for prevention or treatment of progressive dementias will significantly increase the number of individuals with advanced dementia worldwide. Providing optimal care for them will stretch health care resources and will require evaluation of different treatment strategies. This paper is presenting measures that may be used in this patient population. Evaluation of global goals of palliative care may include measuring quality of life by QUALID scale, comfort by DS-DAT scale, and engagement by MPES scale. Symptom control may be achieved by measuring pain by PAINAD or PACSLAC scales, by evaluating behavioral symptoms and their management (agitation by SOAPD scale, apathy by AES scale and rejection of care by RTC-DAT scale), and by monitoring patients for dyspnea using RDOS scale. Outcomes of palliative care at the end of life may be evaluated by EOLD-CAD scale and by determining family satisfaction with care (EOLD-SWC). Items included in these scales, psychometric properties, and research use of these scales are described. It is hoped that information in this paper will stimulate research interest in this important area.