Rethinking Alzheimer's Care By Sam Fazio, Ph.D., Dorothy Seman, R.N., M.S., N.H.A., and Jane Stansell, R.N., M.S.N.

Excerpted from Chapter 1: Reconceptualizing Alzheimer's of Rethinking Alzheimer's Care, by Sam Fazio, Ph.D., Dorothy Seman, R.N., M.S., N.H.A., and Jane Stansell, R.N., M.S.N.

Copyright © 1999 by Health Professions Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

Chapter 1
Reconceptualizing Alzheimer's

Alzheimer's disease often is characterized by many negative descriptors. The language used by families and professionals to discuss dementia includes words such as "inability," "deterioration," "sufferer," "victim," and "burden." Portrayals of Alzheimer's disease in the mas media often focus on the popular or problematic topics such as poor-quality care in nursing facilities, aggressive behaviors, or the rapid deterioration that leads to death. Many films and books have a negative or sensationalistic tone and seem to be designed primarily to attract attention. Titles include "The Living Death," "The Never-Ending Funeral," or "The Burden of Alzheimer's Disease," and content reflects issues such as coping, controlling, or managing.

This negative focus provides families, other caregivers, and the public with a limited and narrow view of the disease. These negative characterizations seem to contribute to the development of perceptions, interpretations, and approaches to care as well as the overall anticipation and expectation of what lies ahead. People are introduced to and prepared for a grim future filled only with extensive loss and decline. Less negative alternatives to describe Alzheimer's disease must be introduced to families, professionals, and the public. The effects of our descriptors can be monumental, therefore, the words that are used to describe Alzheimer's disease must be chosen carefully and reflect a more balanced or encompassing view (Fazio, 1996).

THE IMPACT OF WORDS

Words do shape thoughts and, ultimately, actions. They lead to different perspectives and form a language that has an impact on perceptions. Words come with "baggage" and possess universal as well as individual meanings, while they shape the consciousness of the people who communicate with them (Gayle, 1989; Muller & Cox Dzurec, 1993). In addition, language and terminology can influence and lead to misconception and victimization.

The daughter of a man with Alzheimer's disease shared her reaction to his most recent hospitalization. She described with much frustration how her father was referred to variously as "victim," "vegetable," and "shell." She said, with passion, "I never considered my father a shell of a human being. A shell is something lying in the garbage, like an eggshell. It's something you throw away. You don't love, care for, and respect a shell, but you do a person."

The power of words and language is evident when the effects of labeling are considered. Labels become a permanent part of a person and help to shape his or her personal and social identity. They dehumanize the individual while they limit his or her potential; at times they lead to the individual withdrawing and caregivers distancing themselves (Goffman, 1963). Dehumanization becomes apparent with Alzheimer's disease as stages, terms, categories, and tests are developed and applied to provide some sort of uniformity to the uncertainty of this disease. Figure 1 outlines the effects of labels as well as possibilities when labels do not exist.

This bombardment of negative terminology is reinforced and fostered by many health care professionals. For instance, frequently they prepare families for the "difficult road ahead" or try to help by suggesting caregiving techniques that manage, control, and restrict. Their interventions can seem one-dimensional, focusing only on the immediate needs of the caregiver. In addition, they try to apply a medical structure to an ambiguous and at times nonmedical experience.

The stigma of Alzheimer's disease begins with the word "disease." The medical definition of disease has been referred to as a specific entity that is the sum total of the numerous expressions of one or more pathological processes (Cassell, 1991). It also is described as "the professional's construction, perception or inference about a condition with more or less discretely identified characteristics that are believed to be related to lesions and other abnormalities in the structure or function of biological (or psychological) systems" (Wynne, Shields & Sirkin, 1992, p. 12). In both examples the definitions include pathology or abnormalities that can lead to negative associations. In addition, the word "disease" has come to be linked with impaired health, the constant exploration of causes and cures, and, at times, pity--all of which dementia care has enough. Of course, the biology of Alzheimer's disease must be recognized, however, it does not need to be constantly emphasized or reinforced in everyday care approaches.

The medical model of dementia care, sometimes called the illness model, emphasizes abnormalities in the structure and function of body organs that lead to disease. The problem is defined as "the primary concern." Symptoms are viewed as a direct result of the impairments that are inside the individual's body tissue, and it is assumed that these symptoms are attributed to the dysfunction of the body parts. At the same time, there is a continuous effort by professionals to outline the stages of disease progression. It is believed that stages are needed to identify a predictable disease course and associated treatments. Neither assumption lends itself to the uniqueness of dementia because symptoms often result from factors outside the body, and disease progression is very individual.

In addition, many words used in the medical model are impersonal , even militaristic. Common descriptions can foster adversarial relationships as health care providers discuss "wars to be won" and diseases to be "conquered" and "defeated." Many discussions include phrases such as "administering a battery of tests," "identifying the enemy," and "developing a plan of attack." There is usually a chief of staff, a head nurse on duty, and other charge nurses who are contributing to a perception of hierarchy, rigidity, and coldness. As you can see, describing dementia in the context of a battlefield is a very defeating framework.