An anthropological perspective of alzheimer disease

Anthropological contributions to the study of ad 

To speak about AD from the anthropological point of view is to speak about the social, cultural, and symbolic dimensions of dementia. It means considering how social and cultural factors affect the various manifestations and perceptions of the illness. At the same time, any attempt at a wider understanding of AD also must involve an analysis of dementia in several sociocultural contexts. This means analyzing the various meanings of dementia in several contexts for everyone who is affected by it, whether patients or caregivers. This approach provides a contextualized and transcultural study of the process involved in AD.

However, the majority of studies on dementia have been made in the context of Western societies. We know little about how AD is experienced or understood elsewhere. Some studies have attempted to show the universality of dementia in elderly patients and have dealt very little with the transcultural variability of the illness or the differences between social and ethnic groups.

We should mention, however, the study anthropologist Lawrence Cohen2 did of elders and their families between 1983 and 1990 in four stratified districts of Banaras, India. Two of these districts were inhabited by the middle and upper-middle classes, one was a poor district, and one was in an economically and ethnically heterogeneous area close to the heart of the holy complex in the city of Banaras. Cohen examined the different ways in which the inhabitants of these districts perceived and explained changes in the behavior and personality of people they defined as elderly. He used local knowledge to demonstrate any social constructions with regard to weakness, dementia, and sexagenarians and explored the family practices that maintain the intergenerational differences in that particular society.

In another study, Cohen3 observed how local practices in the treatment of AD in India are rooted in culture and the political economy. He also suggested that the discourse of AD allows its victims to be reconstituted as “nonpersons” and that it is the social rather than the biologic process that deprives elderly demented patients of their own being. I will discuss the loss of identity in the person with AD later.

Another interesting anthropological contribution is that of Reynoso,4 who studied the experiences of AD in a Puerto Rican family—members of an ethnic minority that suffers economic and social inequality—in Boston. The author showed how the illness of the family member was exacerbated by the family's economic and political situation because not enough culturally suitable services were available, and their ability to attract resources and improve their general health conditions was limited. Reynoso showed that sociocultural conditions determine whether the family remains the fundamental unit of support for its members.

A final anthropological reference is the article by Braun et al,5 who explored the perceptions of Vietnamese refugees in relation to care, dementia, and the search for help in the context of their culture and the history of immigration in the United States. These investigators showed how migration and changes in cultural context can affect changes in cultural values with respect to the care of elderly demented patients in such a way that, in this study and unlike in the previous study I described, the family ceases to be the main source of help and support for its members.

Domestic and family context of alzheimer dementia 

Both the wide range of literature available and practical experiences confirm that family members care for most people with AD. The family unit has always attracted the attention of anthropologists. In the field of health care, the family and the domestic group are considered spaces of social life in which cohabitation and relationships with health, illness, and care are manifested daily. In fact, according to Menendez,6 it is in the context of the domestic group that we find the greatest frequency and recurrence of suffering and illness and where the career of a patient begins, ie, the illness is detected and diagnosed, and activities of caring and curing are carried out.

In the domestic environment, we can see very clearly what happens with health, illness, and care. Here is where the social groups make operative and objectify a wide range of knowledge, beliefs, values, attitudes, and types of behavior surrounding the process of health, illness, and care that give meaning and significance to the care strategies taken. The domestic environment is the microstructure that most affects how the subjects involved in health, illness, and care formulate their representations and practices.6

With this in mind, it is interesting to discuss the sociocultural construction of the AD process by analyzing how a patient's closest relatives and caregivers describe (or redescribe) this dementia and how they interpret (or reinterpret) it. When I speak of the sociocultural construction of the suffering of a patient with AD, I am using the theoretical approach of Berger and Luckmann7 and therefore referring to the forms of intersubjective meaning by which subjects identify, design, typify, and understand the health, illness, and care processes through a series of social representations and practices. An anthropological analysis helps me determine and study the practices that are generated for the care of the patient. I now define two main axes of analysis—representations and practices. I consider both of these fundamental to understanding the Alzheimer process from the anthropological point of view, especially if we remember that the social and cultural planes interconnect on several levels.

After a theoretical and methodological revision of social representations and practices with regard to Alzheimer dementia, we will explore other topics that will help us better understand the problem. We can use anthropological concepts and theories, for example, to investigate how biomedical discourse is rationalized and legitimized and refer, among other underlying or related aspects, to the biomedicalization of dementia or the stigma and marginalization associated with this illness.

What do we understand in this context by representations? According to Jodelet,8 representations are the set of knowledge, notions, beliefs, attitudes, values, and opinions, etc, that are constructed and shared in society, that have a pragmatic meaning, and that structure the relationship between subjects and reality through a certain way of designing, understanding, and interpreting reality, which determines how they behave and shapes their experiences with meaning.

Social representations help us name and define the various aspects of our reality and, at the same time, enable us to interpret it. The representations we make about the world in which we live become part of the social fabric in different ways. They become both part of the pre-existing thought pattern and are converted by individuals in society into an agreed-upon vision of reality.

All this presupposes that these representations should be studied in conjunction with affective, mental, and social elements by considering the social relationships affecting these representations and the material, social, and ideal realities in which they intervene.

In our case, when we discuss what relatives and caregivers of AD patients understand about their suffering, we are discussing how they construct the Alzheimer process through a system of representations. Within this framework, we can analyze how current biomedical discourse on dementia affects the social construction surrounding the suffering of those who have it. We also can analyze how these representations affect the relationships among the relatives and caregivers of AD patients and how they influence health care practices.

We now turn to the care practices and the close relationship between them and the representations. When we refer to the practices that relatives and caregivers use when they are looking after someone with AD, we are thinking specifically of the series of activities designed to cure, prevent, and treat the patient's suffering. These practices generally evolve from a structure of resources that are available both inside and outside the domestic environment. As well as the patient, several other social actors also participate. These may be members of the family group or other groups, such as networks of social support—friends, neighbors, and associations for relatives of AD sufferers—or formal caregivers, such as the social and health professionals who most frequently come into contact with the disease (doctors, neurologists, psychiatrists, nurses, psychologists, and social workers).

The health care practices involved in the Alzheimer process include a series of social representations that the actors and social groups attribute to different resources and practices. As we discussed earlier, it is especially interesting for anthropological analysis, therefore, to link representations with practices.

However, Menéndez and Di Pardo9 state—rightly, in my opinion—that the practices do not reproduce the representations either mechanically or identically…The representation guides the action, which is resolved in the act. A practice can change in any given situation because of changes in the manifestations of an illness…so that, in theory at least, the relationship between representation and practice must not be thought of univocally. Any discrepancy is part of this relationship but, assuming that it also expresses regularities,…the concept of knowing supposes assuming the existence of a continuing synthesis that integrates apparent inconsistencies from which the fundamental is actually how knowledge affects the reality. If we use this concept, we must recognize that there are inconsistencies not only between the representations and practices but also between representations and between practices. The context, the situation, or the specific problem can encourage the use of one or another representation or practice. What is important is to determine whether the differences suggest that there is any dominant structure.9

In accordance with this approach, a difference exists between medical knowledge—understood in a broad sense as the knowledge arising from the health care environment and referring therefore to all the professionals involved in this environment—and the knowledge of social groups. With their knowledge and intervention, professionals can exert control over the representations and practices of social groups (particularly in the family or domestic environment) with regard to the health, illness, and care process. In this study and in this context, it appears that this medical and technical knowledge materializes in a discourse that usually dominates all other knowledge and discourses.

Biomedical discourse and the social construction of alzheimer dementia 

Discourse of whatever type has a decisive role in the construction and reproduction of social reality. It is also an instrument with which to legitimize social order. In the majority of everyday situations, discourses help us configure and organize reality in a certain way. However, one discourse usually is agreed upon and accepted by the majority, and it usually comes from the dominant or most powerful groups in society. The discourse becomes dominant as the popular classes begin to use it and make it their own. It is also true, however, that this discourse gets transformed, modified, and reconstructed by various social groups.

The incorporation of the dominant discourse into day-to-day life is clearly reflected in experiences of AD. We can see, for example, how the recollections of participants in a support group get less and less distinguishable from the ideology and organization of the group itself.10

On the basis of these theoretical arguments, it may be interesting to analyze any supposed dominant discourse on dementia, particularly Alzheimer dementia, precisely for its implications of the very social construction of the illness and its repercussions for the domestic environment. Henceforth, I consider “popular” knowledge of AD to incorporate meanings and significance (knowledge) from various medical models (or from one dominant model). This knowledge then produces its own models for explaining suffering within a given social structure.11

From the anthropological perspective, Herskovits12 highlighted the consequences of the way in which AD discourse currently is constructed in Western society. She showed how this basically biomedical model is useful for certain political and economic interests. She described, for example, its role in responding to the need to finance and legitimize researchers and scientific institutions. Similarly, it is used to legitimize and justify certain types of therapy.

Also, any discourse that establishes a link between aging and AD will present old age as a “terrifying and monstrous experience.” The traditional image of an elderly person as “naturally senile” therefore would change because of the notion that an old person with AD is pathologically demented.

Similarly, the dominant discourse on dementia favors and legitimizes the birth of a “social movement” that provides a social problem and an answer to it. AD becomes a problem for everybody involved, whether they are patients or the people around them. In fact, in the context of this discourse, the patients' relatives are presented as other victims.

In any case, the biomedicalization of dementia appears to be guaranteed. Lyman13 argued that confidence in the biomedical model for explaining the experience of dementia dominates the social construction of this type of suffering and, in turn, influences treatment and care, which affect how the illness progresses.

The general acceptance of the biomedical model of dementia assumes that senility is an inevitable condition of aging. This belief has legitimized the research and political interests that provide help for health care and that have provided caregivers with a certain degree of order and control in their difficult job of looking after the demented patient. It must be said that this discourse satisfies people's needs and interests. For example, it gives order and control to something that is initially confusing and destructuring. As a chronic illness, Alzheimer dementia is characterized by an “uncertain course,” but explaining the illness in terms of a time structure and stages enables the experience to be organized and improves the caregivers' ability to predict and supervise the development of the illness.

However, although there are some general referents, the time component of the experience depends on the individual and responds to the interests and perceptions of those involved. By applying the methodological approach to our particular case, we will capture both the individuality and the variety of the experiences.

Another important aspect of this approach is the psychologic relief relatives and caregivers feel when they incorporate the medical discourse on dementia into their own experiences. Explaining that the behavior of the patient is a response to their illness helps remove feelings of guilt. The discourse on AD captures the problem from a clinical perspective, normalizing and supplying maneuverability for the patient's “discomfort” and “disorder.” This very maneuverability of suffering justifies medical supervision of the person. In this way, power over the illness and those who suffer from it again is given to a group that is considered to have—and to show that they have—knowledge.

With regard to this medicalization of dementia, some authors such as Bond14 suggest that, if we change the biomedical model of suffering, society will help generate new social relationships between people with dementia and their relatives and close friends.

Loss of self and social death 

Herskovits12 highlights another consequence of the dominance of biomedical discourse on AD—the use of such metaphors as “the never-ending funeral,” “the loss of being,” “death before death,” or “living death.” In fact, Alzheimer dementia is frequently referred to as a process characterized by a loss or degradation of the being. I think this question also is worth exploring when analyzing discourse. Moreover, certain socioanthropological theoretical foundations for this analysis can provide an essential reference framework.

Obviously, I am referring to the classic study by Mead,15 which provides two useful concepts for this analysis. The first is the concept of mind, which is seen as an essential human component that emerges and finds shape through contact in and with society. The second is the concept of self, which is born out of learning and the process of socialization. It refers to the individual's self-perception as a result of other people's behavior toward them. According to Goffman,16 mind is equivalent to personal identity, and self is equivalent to social identity.

With AD, the controversy over identity originates from the puzzle created by the title of Cohen and Eisdorfer's17 book, The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders . Despite this reference to the question of identity and self in Alzheimer dementia, however, the article by Sabat and Harre18 is more specific. These authors suggest that the personal identity (mind) of the person with AD persists right up to an advanced stage, even right to the end of the illness, while the person's social identity (self) can be lost indirectly as a result of the illness. They report that the main cause of loss of social identity is the way the person is viewed and treated by others.

Sabat and Harre18 then consider that this loss of social identity can be predicted if the caregivers and other people who are significant in the patients' social world refrain ad hoc from classifying them as incapable and confused and avoid interpreting language utterances and nonverbal forms of communication as indicators of confusion. If the social identity of people with AD were recognized, they would recover their dignity, possibly increase their independence, have the satisfaction of being understood, and be able to continue their social relationships.

A person's social identity is recognized through a series of attributes that can make a person different from the others at a given moment, such as an illness or disability, and convert him or her into someone “less attractive” and looked down on. One such attribute is what Goffman19 described as stigma. He says we use stigma to construct a suitable ideology for explaining a person's inferiority. In fact, he says the person with a stigma is not considered totally human. We use this supposition to practice several forms of discrimination through which we decrease the person's chances of survival, often without realizing it. Therefore, the metaphors used to describe AD, which illustrate loss of identity and a certain social death,20 are a discreet way of stigmatizing the person suffering from dementia.

The literature on the stigma attached to dementia in general, and AD in particular, is rather scarce. A study by Shifflet and Blieszner21 focused on the consequences of social stigma for patients' support groups. The authors took Goffman's symbolic interactionism as a reference framework and suggested that Alzheimer dementia may involve both a tribal stigma and a behavioral stigma. They then question the reactions of the support groups and their strategies for confronting this stigma. The most important finding of this study, which was carried out with 11 relatives of AD patients, was that, after hearing the diagnosis of dementia, most subjects reacted by feeling more ashamed and offended, although the diagnosis also was greeted with a certain amount of relief. Thus, the cultural meanings associated with illness can mark a person as strange or different.

Using this theoretical approach in my study, I aim to recover the voice and opinion of the actors involved in the day-to-day experience of Alzheimer dementia, especially those of the patients' closest relatives. In this way, I hope to hear how they feel, how they live, and how they perceive, evaluate, and interpret the illness. I trust the results of my study will help nurses better understand the experience so that we can work more coherently in the direct and day-to-day care of our patients.