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THIRTEEN: The Ethical Challenge of Treating Pain in Alzheimer Disease: A Dental Case
- Johns Hopkins University Press
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mc h a t e r t h i r t e e n The Ethical Challenge of Treating Pain in Alzheimer Disease A Dental Case Gunilla Nordenram, D.D.S., Ph.D. Dementia may be defined as an acquired global impairment of intellect, memory, and personality, but without impairment of consciousness. Many types of dementia disorders exist, of which Alzheimer disease (AD) is the most common. AD involves serious communication problems, speech being limited to a few words or incomprehensible sounds. If behavioral and psychological symptoms in dementia occur, aggression, shouting, anxiety, and hallucination become particular problems. It has been shown, however, that persons in a severe stage of the disease can still react to various stimuli and experience uncomfortable sensations (Asplund et al., 1991). This latter aspect of their situation has been an important motivation for this book, which explores various types of palliation or comfort care that should be provided to such patients. Although cognition and social behavior in moderate and severe dementia are impaired, the afflicted patients have a rich and powerful emotional life. Loss of intellect is not loss of personhood (Bernat, 1996). Decisions regarding treatment needs and the management of treatment must attempt to maximize the patient’s quality of life and improve safety. An often overlooked area is oral care. The oral region is a “private” zone of the body. Entrance to the mouth is restricted to persons who are near and dear to us and to certain professionals (e.g., dentists, dental hygienists, speech therapists, and physicians). Personal space in terms of the oral region varies from person to person—whether a friend, an acquaintance , or a stranger, and in this hierarchical scale, enemies are far away. Elias Canetti (1960) talks about teeth as an instrument of power or a weapon, not just a biological part of the body, and asserts that the teeth are the armed guardians of the mouth. For a newborn baby, the sucking reflex is vital for its survival, notwithstanding that nowadays we can feed a baby artificially through a tube. When we touch the cheek of a newborn, the baby turns its head toward the touched side—the orienting reflex. For a tiny infant, feeding also means close contact with the caregiver and the first opportunity to establish confidence and nonverbal communication . In the late stage of dementia, the sucking reflex and the orienting reflex have returned, and the oral zone may be as significant for the severely demented person as it is for the newborn baby. When persons suddenly become afraid, they often put their hands in front of their faces, instinctively and immediately guarding their mouths. The aggressive behavior of persons with AD in oral care situations may be an expression of fear caused by a lack of understanding of what is going on and of why people want to look into their mouth. They feel that the private oral zone has been invaded, arousing emotions that the patient can no longer interpret or verbalize. The most natural reaction in this situation is to hide the mouth or forcefully reject any attempt to enter it. However, refusal behavior in dental care can also mean something else. As an illustration, I describe one of my patients, Cathy, whom I met in about 1990. When I first met her in the hospital, she was aggressive, restless, and agitated. She screamed, bit, and fought whenever anyone tried to open her mouth. Cathy’s life is a living illustration of modern European history. She was born in Saint Petersburg, Russia, at the beginning of the last century, into a wealthy family. She was brought up by a private governess, learning several languages and how to play various music instruments, to embroider, to manage a household—all the things that a fine young lady needed to know at that time. She married young. In her thirties, her husband was executed by the Stalin regime. She managed to leave the Soviet Union and settled down in France. After World War II, she remarried, taking as husband a French diplomat. They lived in various parts of the world and her knowledge of Ethics of Pain Management in Alzheimer Disease 21 [35.168.113.41] Project MUSE (2024-03-19 02:17 GMT) languages was very convenient. Her husband’s last post was at the French embassy in Stockholm, and when he retired they remained in Stockholm, living in a large apartment in the...