Culture & caregiving – includes bibliography

Culture & caregiving – includes bibliography – Confronting Alzheimer’s: Help for Patients and Families

Why should a caregiver’s ethnicity matter? Recent research suggests that Alzheimer’s disease, which affects at least one person in five after age 75, with rates undifferentiated by ethnicity, is a remarkably democratic disease. Whites, African Americans, Hispanics, Asians, and American Indians caring for family members with Alzheimer’s disease all face the same problems. They have to respond to patients who wander, don’t sleep much, or must be cleaned when they are incontinent.

The problems may not differ, but reactions to them and caregiver coping strategies do. Levels of anxiety, acceptance of symptoms, and attitudes toward doctors and outside help vary considerably in different cultures. As a Suncoast Gerontology Center training manual, Removing Barriers to Community Services, notes, “Culture is a powerful shaper of human behavior because it is the foundation of conscious and unconscious beliefs … about ‘proper’ ways to live.” This was confirmed by an AoA-funded study comparing American Indian and white responses to caregiver stress, which was undertaken in 1984 by California researcher Catherine L. Strong. Strong found that the emotions of frustration, anger, guilt, anxiety, and conflict correlated with the individual’s response to loss of control over the situation, which related directly to that person’s cultural values relating to control.

American Indian respondents used a coping strategy known as “passive forbearance” to accept their lack of control over the situation. In the words of one woman, “A person has to make up their mind to be strong to go through such things. A person gets used to that.” As a result, they did not have feelings of anger, guilt, anxiety, and conflict. The primary emotion expressed by American Indians was one of loss. As one Indian man explained, “There are so few of us … I’m afraid we’re a dying race. My uncle is almost the oldest person in the tribe. I’ll never live the life he’s lived, all the animals he’s trapped and killed, all the things he’s done. I take into consideration that I’ll never see those days, the days when he was young. “

The white respondents, on the other hand, showed high stress stemming from a belief that they should be able to do more to influence the situation. Said one woman of her sister: “The worst part was getting her to cooperate. It was like batting your head on a stone wall.” The difference between American Indians and whites was attributed to a major difference in cultural values: “The white man … is torn between two ideals; on the one hand he believes in freedom, in minding his own business, and in the right of people to make up their own minds; but on the other hand, he believes that he should be his brother’s keeper. The Indian society is unequivocal: interference of any form is forbidden, regardless of the folly, irresponsibility, or ignorance of your brother. “

Trainers who know how to detect cultural aspects of caregiving behavior will be able to offer training that works with, and not against, a caregiver’s culture. Unfortunately, these differences and other cultural traits are not always easy to detect, because a person from an ethnic or minority group often adopts “a civic culture” to negotiate the everyday world in which the majority culture dominates. People who “learn the drill” of the majority culture may do it so well that they almost appear to be part of that culture. These adaptations contribute to the illusion of “the melting pot” and mask from service providers, the true extent of cultural variation in American society. But service staff need to be aware that, to one degree or another, ethnicity is kept and used to solidify one’s psyche and organize resources to meet challenges.

Ramon Valle, Professor of Social Work and director of several studies on Alzheimer’s at San Diego State University, advocates determining an ethnic minority member’s position along an acculturation continuum and observing the degree to which the person’s cultural behavior changes depending on the situation. The acculturation continuum is a way of thinking that allows for each individual to be perceived as very traditional, bicultural, or very assimilated. A given person may be perceived to be at different points along the continuum with respect to different issues. For example, on religious items, an ethnic person may be very traditional while being assimilated on matters of business. The situation often drives the degree of ethnicity revealed. Among business partners, the ethnic person’s real feelings may be concealed in order to present a consistent front with colleagues who are from the majority culture. Only among family members may the same interaction be recounted with the actual feelings revealed. “The trainer should be sensitive to caregivers’ concerns about how to act during training sessions. Caregivers may silently wonder how much of their own personal culture is safe to reveal.”

Removing Barriers stresses that service providers need to examine their own views on the right way to behave, which for the majority, are derived from a mixture of American culture and the culture of the country their ancestors left. “Most ways of thinking and acting are cultural in origin,” the manual observes. It points out that these attitudes were learned at a certain time in history as a member of a certain racial, social and economic group and as a person of a certain age, sex, and religious and political affiliation. “People absorb their own cultural map for living so well that certain ways of behaving appear to be the only reasonable ways to act.” Service providers who are not aware of their own cultural mind-set are not going to be very effective in working with ethnic or racial minorities.

Another important task of support group leaders is to discard the simplistic ideas Americans may have about minority groups. For example, some service providers tend to think of minorities as undifferentiated when they are very heterogenous. The government term “Hispanic” may refer to all Spanish-speaking people but Mexicans, Cubans, Puerto Ricans, Salvadorans, Peruvians, and Nicaraguans all have distinct cultures.

Within each group there will also be variations depending on the age of the minority group member, the recentness of the immigration, and whether or not people came willingly to the U.S., arrived as refugees, were brought as slaves, or were colonized. And finally, there will simply be differences between people who are unique individuals before they are white, Hispanic, African American, American Indian, or Asian.

Service providers should be aware that culture is not static. Culture is a dynamic process that changes constantly in response to interaction with other cultures and changing societal conditions.

COPYRIGHT 1992 U.S. Government Printing Office

COPYRIGHT 2004 Gale Group