Goals of care in advanced dementia: quality of life, dignity and comfort

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.