Cultural Construction of Dementia Progression, Behavioral Aberrations, and Situational Ethnicity: An Orthogonal Approach.

Neurodegenerative diseases, such as Alzheimer's disease and related dementias, induce caregivers already struggling to cope with the behavioral aberrations of dementia to constantly update their cultural construction of the disease because the outward symptoms used to interpret it are in constant flux. For ethnic minority caregivers, particularly, coping is a process of tracking a moving set of symptoms, making cultural sense of them across time, and negotiating a medical environment that can be hostile to them because of their "nonstandard" cultural health beliefs. In the midst of a constantly changing disease, achieving optimal communications with the medical establishment causes the ethnic minority caregivers to change their behaviors to better fit the expectations of the clinic, then retreat to their own cultural comfort zone only to continue oscillating between cultures for the duration of their caregiving responsibilities. Ethnic minority dementia caregiving is conceptualized here from an orthogonal perspective in which the moving elements of the ethnic minority dementia experience intersect in numerous ways and produce many coping strategy permutations corresponding to the evolving disease and its cultural constructs.Keywords: dementia; culture; ethnicity; disease model; chronic disease progressionThe purpose of this article is threefold: (a) expand the cultural construction of disease model to incorporate more flexibly the progressively changing symptom patterns common to many types of chronic disease, (b) use the progression of dementia symptoms as a chronic disease model, and (c) further the use of the model by examining dementia coping among ethnic minority caregivers by using a multistage vignette. Ethnic minority life, caregiving routines for persons with dementia (PWD), and the continuously changing disease state of dementia all move in a clockwork fashion. The cultural construction of disease is constantly revised by the caregiver because the cognitive and behavioral changes of dementia affect the PWD. Ethnic minority life is often characterized by routinely and purposively shifting behavioral norms to best fit the multitudes of social situations encountered outside their home and family cultural environment.Exploring these multiple commingled factors requires another conceptual framework designed to allow disease models to adjust to changing symptom patterns over the course of the chronic disease experience while simultaneously accounting for the multicultural life experience of ethnic minority caregivers. The orthogonal model for the multifactorial analysis of ethnic minority cultural identity and cultural identification serves well to emphasize the shifting factors of ethnic minority cultural identification itself (Oetting & Beauvais, 1991; Oetting, Swaim, & Chiarella, 1998) and can be nested into another framework likewise in constant flux, that of the progressively worsening symptoms of dementia.CULTURAL CONSTRUCTION OF DISEASE MODELSMedical sociology and medical anthropology for many years have constructed the nature of sickness as having at least two different domains for analysis: (a) disease and (b) illness. The disease domain focuses on the pathophysiology of sickness. Pathophysiology refers to the biological phenomena that lead to deleterious physical outcomes. The illness domain of sickness refers to the human experience of discomfort and other symptomatic awareness that a person has by which they judge themselves to be sick.Illness dynamics have been examined in a multitude of ways (Conrad & Barker, 2010). For example, Parsons (1951) developed his notion of the "sick role" in which a person entered a deviant social state that led to some relief of social expectations, such as job or kinship obligations. Sick people were expected to behave in ways that would return them to a normal role and social condition. Later, Mechanic (1968) developed his schema for "help-seeking behavior" in which he focused on the illness incident as a series of experiences, evaluations, and action steps leading to the resolution of symptoms. …