Volicer L
School of Aging Studies, University of South Florida, Tampa, FL, USA.
J Nutr Health Aging. 2007 Nov-Dec;11(6):481.
Prolongation of human lifespan is increasing the number of individuals suffering from Alzheimer's disease and other progressive dementia worldwide. There are about 5 million of these individuals in both United States and European Union and many more in other countries of the world (1). Because there is no curative treatment for these diseases, most individuals with dementia survive to an advanced stage of dementia at which time many of them require institutional care. Home care for individuals with advanced dementia and especially institutional care are very expensive and are becoming major public health problems. The cost of care for advanced dementia is often increased by the use of aggressive medical interventions that may not be in the best interest of the patient. Because advanced dementia is currently incurable, it should be considered a terminal illness, similar to terminal cancer. Therefore, palliative care may be the most appropriate strategy for management of advanced dementia (2). The goals of palliative care are maintenance of quality of life, dignity and comfort and the four articles in this special issue are addressing these goals. Enhancement of quality of life in dementia requires attention to three main domains: provision of meaningful activities, appropriate medical care, and treatment of behavioral symptoms (3). Individuals with advanced dementia may not be able to participate in many activity programs but they still may maintain some quality of life if they are provided care in a pleasant environment with constant presence of a caregiver. Simard describes a program, Namaste Care, which is specifically tailored for individuals with advanced dementia. This program requires neither major expenditure nor increased staffing and should be instituted in all facilities that care for individuals with advanced dementia. Maintaining functional status of individuals with advanced dementia is important because it improves their self esteem and facilitates provision of care. Van der Steen et al. present evidence that lower respiratory tract infection leads frequently but not always to functional decline. However, it is significant that the Dutch participants in this study were never hospitalized and always treated in a nursing home. Hospitalization leads to functional deterioration even in cognitively intact elderly individuals (4). In addition, treatment of lower respiratory infection is more effective when provided in a nursing home than when the resident is transferred to an acute care setting (5). It should also be considered that antibiotic treatment of lower respiratory tract infections in individuals with terminal dementia does not increase their comfort and lifespan (6). Dignity is an often invoked goal of care in dementia but it is often poorly defined and characterized. Holmerova et al. provide a detailed description of the concept of dignity and its application in dementia care. They also present two specific examples of problems encountered when individuals with advanced dementia are treated insensitively in an acute care setting. Dignity oriented care should treat everybody as an individual and provide care according to the goals of care determined before any crisis situation (7). Namaste Care is an example of care setting that respects individual's dignity until death; respecting "the spirit within". Tube feeding in individuals with advanced progressive dementia does not promote quality of life, dignity or comfort. Tube feeding deprives individuals from contact with the caregiver during hand feeding and from enjoyment of the taste of food. Tube feeding often requires use of restraints that decreases an individual's dignity and comfort. Despite the lack of beneficial effects and the burdens that the tube feeding imposes (8), it is still widely used in individuals with advanced dementia. Pang et al. compare the use of tube feeding in two different settings of dementia care, one in which tube feeding is not used and one in which everybody dies with some form of artificial feeding. She documents that the main reason for this difference is varying attitudes of medical staff and not different perceptions of best interest of the patient as expressed by the patient's relatives. It is hoped that this special issue will increase awareness of the medical community about appropriateness of palliative care for individuals with advanced dementia. Such care may not only provide better care for individuals with dementia and their families but may also save some health care resources (9). Palliative care is well accepted by many relatives of individuals with advanced dementia but not promoted by many health care professionals. We need to provide more education and research results for health care professionals to increase the use of palliative care in advanced dementia.
人类寿命的延长使得全球患阿尔茨海默病及其他进行性痴呆症的人数不断增加。在美国和欧盟，这类患者约有500万，世界其他国家的患者更多（1）。由于这些疾病无法治愈，大多数痴呆症患者会存活到痴呆晚期，此时他们中的许多人需要机构护理。为晚期痴呆症患者提供家庭护理，尤其是机构护理，成本非常高昂，正成为重大的公共卫生问题。积极的医疗干预可能不符合患者的最佳利益，但却常常增加晚期痴呆症的护理成本。鉴于晚期痴呆症目前无法治愈，应将其视为一种绝症，类似于晚期癌症。因此，姑息治疗可能是管理晚期痴呆症最合适的策略（2）。姑息治疗的目标是维持生活质量、尊严和舒适度，本期特刊中的四篇文章探讨了这些目标。提高痴呆症患者的生活质量需要关注三个主要方面：提供有意义的活动、适当的医疗护理以及治疗行为症状（3）。晚期痴呆症患者可能无法参与许多活动项目，但如果他们在一个有护理人员随时陪伴的宜人环境中接受护理，仍可维持一定的生活质量。西马尔德介绍了一个专门为晚期痴呆症患者量身定制的项目——合十礼护理。该项目既不需要大量资金投入，也不需要增加人员配备，所有照料晚期痴呆症患者的机构都应采用。维持晚期痴呆症患者的功能状态很重要，因为这能提升他们的自尊，并便于提供护理。范德·斯廷等人提供的证据表明，下呼吸道感染经常但并非总是导致功能衰退。然而，值得注意的是，这项研究中的荷兰参与者从未住院，一直在养老院接受治疗。即使是认知功能正常的老年人，住院也会导致功能恶化（4）。此外，并将患者转至急性护理机构相比，在养老院治疗下呼吸道感染更有效（5）。还应考虑到，对晚期痴呆症患者使用抗生素治疗下呼吸道感染并不能提高他们的舒适度和延长寿命（6）。尊严是痴呆症护理中经常提到的一个目标，但往往定义模糊且缺乏特征描述。霍尔梅罗娃等人详细阐述了尊严的概念及其在痴呆症护理中的应用。他们还给出了两个具体例子，说明在急性护理环境中对晚期痴呆症患者进行冷漠治疗时会遇到的问题。以尊严为导向的护理应将每个人视为个体，并根据危机情况发生前确定的护理目标提供护理（7）。合十礼护理就是一个尊重患者尊严直至死亡的护理范例，即尊重“内在的精神”。对晚期进行性痴呆症患者进行鼻饲并不能提高生活质量、尊严或舒适度。鼻饲使患者在人工喂食时无法与护理人员接触，也无法享受食物的味道。鼻饲通常需要使用约束措施，这会降低患者的尊严和舒适度。尽管鼻饲没有益处且带来负担（8），但它仍在晚期痴呆症患者中广泛使用。庞等人比较了在两种不同的痴呆症护理环境中鼻饲的使用情况，一种不使用鼻饲，另一种则是每个人都在某种形式的人工喂食下离世。她记录表明，这种差异的主要原因是医护人员态度不同，而非患者亲属所表达的对患者最佳利益的不同认知。希望本期特刊能提高医学界对晚期痴呆症患者姑息治疗适宜性的认识。这种护理不仅可以为痴呆症患者及其家人提供更好的照料，还可能节省一些医疗资源（9）。姑息治疗得到了许多晚期痴呆症患者亲属的认可，但许多医护人员并未积极推广。我们需要为医护人员提供更多教育和研究成果，以增加姑息治疗在晚期痴呆症中的应用。
