%0 Journal Article
%T Outcome Measures for Dementia in the Advanced Stage and at the End of Life
%A Ladislav Volicer
%A Jenny T. van der Steen
%J Advances in Geriatrics
%D 2014
%R 10.1155/2014/346485
%X 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. 1. Background The authors of this review both enjoy international collaboration and started working together almost 20 years ago when they discovered that they have a common concern for persons with advanced dementia. The collaboration started by sharing scales that can be used for research in population. Initially, U.S. discomfort and dementia staging scales were used in Dutch studies that investigated treatment of pneumonia [1¨C3]. The Dutch translation of these scales was evaluated and additional work assessed a cut off for severe dementia [4] and the staging of the items [5] and the Dutch investigators also evaluated a new U.S. set of scales for dementia at the end of life [6]. Recent work developed also from sharing newly collected [3] and existing data [7]¡ªthe Dutch author analyzing the U.S. data and vice versa. Where previous work focused on pneumonia, newer work was on modifiable factors that are increasing risk of behavioral symptoms of dementia [7]. The common theme in this research was concern for quality of life of person with advanced dementia that could be supported by palliative care, as summarized in recent work defining domains and recommendations for palliative in dementia [8]. The authors share a belief that barriers to performing high-quality research in this population can be overcome, and one important barrier was the lack of outcome measures with optimal psychometric properties
%U http://www.hindawi.com/journals/ager/2014/346485/