Midway through our interview, Mrs. Jones, whose husband was diagnosed with Alzheimer's disease two years earlier, began talking about a change in her husband that distressed her-his forgetfulness. My immediate association was to short-term memory loss, a core part of the professional criteria of dementia. She then told us a story about his inability to set the alarm in their house in response to her admonitions to do so. Again, her description appeared to conform to the clinical criteria for dementia, which include functional decline and difficulties with higher-order cognitive tasks that require planning and sequencing (executive functioning). At this point, her story seemed off the central focus of our research: how families understand, manage, and seek help for the behavioral changes of a person who has been diagnosed with dementia. What followed next, however, surprised me. Mrs. Jones described how her husband became frustrated when he was unable to set the alarm, and then proceeded to "vent at her," which she described as his getting very angry and pounding on the walls of the house. These outbursts occurred often and represented a change from how he had been before he was diagnosed with Alzheimer's disease. We later learned that despite being very involved in her husband's medical care, she had yet to mention these violent outbursts to his primary care physician. While the reasons for not telling his physician never became entirely clear, her own nonmedical, psychosocial explanation of his distress, a sympathetic physician who reinforced her interpretation of his behavioral changes, and the realities of a very constrained health-care system all played important roles. This vignette highlights some of the core issues that will be explored in this chapter, which focuses on the behavioral changes of people with dementia as observed and responded to by families and primary care providers. We use the term behavioral changes to refer to the diverse set of noncognitive symptoms (for example, depression, irritability, psychosis, wandering, agitation, aggression) that fall outside the formal diagnostic criteria for dementia (which emphasize cognitive symptoms and functional decline), yet are common clinical manifestations and are cited by family caregivers as among the most challenging aspects of living with a person who has been diagnosed with dementia (Chappell and Penning 1996; Chenoweth and Spencer 1986). For those interested in the anthropology of senility, primary care settings are important sites for study because that is where most people who suffer from dementia are diagnosed and treated (Small et al. 1997). Yet despite the enormous public-health significance of Alzheimer's disease, "underdiagnosis" and "undertreatment" of dementia is ubiquitous in primary care (Boise et al. 1999; Callahan, Hendriel, and Tierney 1995). This lack of medicalization is striking because it occurs against the backdrop of clinical guidelines highlighting the need for early diagnosis and of considerable optimism among scientists and clinical researchers about the ability of pharmacological and nonpharmacological interventions to delay the progression of cognitive decline and ameliorate behavioral symptoms (Doraiswamy 2003). This disjunction between "expert" knowledge and routine clinical practice raises intriguing questions about how behavioral changes in persons with dementia are valued and responded to in primary care settings, where older adults, their families, and physicians come together. Anthropological perspectives may help us to understand how social and cultural processes influence the occurrence and timing of medicalization of cognitive decline, functional impairment, and behavioral change in older adults who meet criteria for dementia. This chapter is based on early analysis of interviews conducted with families and primary care physicians who provide care to a person who has received a formal diagnosis of some type of degenerative dementia (such as Alzheimer's disease). To frame our analysis, we use the concept of borderlands. Our use of this concept developed from the observation that clinical encounters in primary care have the potential for intimacy and supportive intervention as well as conflict, misunderstanding, and unnecessary or even dehumanizing medicalization. The concept of borderlands, which was developed in postcolonial feminist discourse, holds together the dual aspects of these settings that are so important to the experience and actions of families and primary care providers. Gloria Anzaldúa describes borderlands as "physically present wherever two or more cultures edge each other, where people of different races occupy the same territory, where under, lower, middle, and upper classes touch, where the space between two individuals shrinks with intimacy" (19087, 19). Her writing, which derives from her own experience growing up as a Latina woman on the Texas- Mexico border, highlights the psychological meaning of living between two cultures. Among other things, this postcolonial situation requires of those who live in it a tolerance of the ambiguity that results from contact with multiple, sometimes contradictory cultural frames. The concept of borderlands is relevant to our examination of behavior change among people with dementia and primary care settings in at least three ways. First, behavioral aspects of dementia have occupied a borderland in the history of the professional description and diagnostic criteria of dementia. After years of languishing in the shadows of cognitive symptomatology, there is now a flourishing scientific discourse and debate about dementia behavioral symptoms, their etiology, and their management. Second, in routine primary care settings, "troublesome" behaviors often elude formal medical intervention because of their ambiguous nature. Families and primary care clinicians struggle to clarify, understand, and negotiate care for these changes, highlighting what Sharon Kaufman (1993) has referred to as the boundaries of professional authority. Third, primary care settings can be viewed as contested spaces. They are contested because of the sometimes competing agendas of patients, families, primary care providers, insurance companies, and health systems. Within these borderlands of primary care, families and primary care providers are not passive, but actively resist what they view as oppressive bureaucratic structures or inadequate care. In this chapter, we will describe two cases that differ substantially in the degree of intimacy and trust that is achieved between family and primary care physician. Despite their differences, each case shows the relevance of borderlands to the experience of families and primary care physicians, with particular attention to how these clinical and interpersonal processes of care are influenced by larger structural forces (health-care bureaucracies, political economy of health care, physician education), which operate somewhat in opposition to "expert" discourse on the diagnosis and management of Alzheimer's disease and related dementias. Our attention to the structural and cultural contexts of care is influenced by the work of Cohen (1995), who emphasizes the need to examine multiple perspectives, including those of biology, culture, and political economy, in relationship to local contexts and politics of communities and families in order to account for medicalization of senility. The importance of structural constraints in the management of chronic illness in contemporary American health-care settings has been highlighted by others (Good 1998; Kaufman 1993; Kleinman 1998; Mitteness and Barker 1995). These structural constraints, combined with the lack of formal training for primary care providers in the care of persons with dementia and the latter's skepticism of "expert" knowledge, converge to make the medicalization of noncognitive, behavioral changes less likely. The outcomes are varied, and they are complicated by cultural, gender, and age differences in the clinical encounter. Before discussing the case material, we review historical and contemporary perspectives on dementia behavioral symptoms to highlight their borderland status.
|Original language||English (US)|
|Title of host publication||Thinking About Dementia: Culture, Loss, and the Anthropology of Senility|
|Publisher||Rutgers University Press|
|Number of pages||21|
|State||Published - 2006|
ASJC Scopus subject areas
- Medicine (miscellaneous)