Care of demented elders is extremely difficult; much of the burden of care is shouldered by home caregivers. Since the study by Zarit and colleagues (1980), many researchers have probed the problems of these caregivers. Pallett (1990) recently reviewed the literature on home caregivers of elders with AIzheimer's-type dementia and formulated a conceptual framework for home caregiver burden. Kuhlman and associates (1991) also clarified many issues of home care and Alzheimer's disease through review of previously published studies. Additionally, a number of scales for measuring burden have been developed (Kinney, 1989; Lawton, 1989; Montgomery, 1985; Novak, 1989; Poulshock, 1984; Rabins, 1982; Robinson, 1983; Vitaliano, 1991; Zarit, 1980).
There are studies that have concluded that there is no relationship between burden and seriousness of a demented elder's problematic behavior, but it is agreed that degree of burden and stress on caregivers is increased as symptoms of dementia worsen (Poulshock, 1984; Miller, 1987; O'Connor, 1990; Nygaard, 1988; Pearson, 1988). Nevertheless, in our study, we encountered many caregivers who found fulfillment in caring for elders with serious dementia, and they approached their task with an attitude of understanding, consideration, and affection.
What is the reason for this difference in findings? Lynch (1990) suggested that understanding the caregiver's subjective perceptions is important in accurately understanding the well-being of the caregiver. We also believe that a detailed study of how caregivers perceive and respond to the elder in their care is important in considering why some caregivers gain a sense of satisfaction or joy in the care of demented older people.
The purpose of the present study, therefore, was to identify the following:
* How caregivers saw the demented elders in their charge and what attitude they had toward them;
* How their perceptions and attitudes of the demented elders changed;
* When, and in what manner, their perceptions and attitudes changed; and
* What specific changes they displayed.
The sample in this study consisted of 49 family caregivers (an Japanese) of demented elders who made use of day care services. The day care centers were all located in Japan's Kanto region (around Tokyo). We explained the purpose of the study individually to each person interviewed and sought his or her cooperation and understanding of our research aims. The 49 persons interviewed included 9 men and 40 women. Of the 9 men, 8 were husbands of day care clients; 1 was a son of a day care client. Of the 40 women, 11 were wives, 10 were daughters, and 19 were daughters-inlaw.
The age range for male caregivers was 46 to 78 (M = 68.3); the age range for female caregivers was 38 to 79 (M = 55.5). The average age of all caregivers was 57.9 years. The demented elders subjects included 16 men and 33 women. The age range for male elders was 63 to 86 years (M = 76.0); the age range for female elders was 58 to 99 years (M = 78.7).
The severity of dementia was evaluated using the DSM-HI-R scale. Nine patients were evaluated as having mild dementia, 13 with moderate dementia, and 27 with severe dementia.
The study of the 49 family caregivers was conducted through interviews using a list of semistructured questions. The questions focused on the caregiver's understanding and perception of the demented elder in their care from the time they became aware of symptoms of dementia to the present. The questions also focused on how the attitude of the caregiver had changed toward the elder.
With the caregiver's cooperation, the interviews were recorded by hand or on tape. These interviews provided a clear picture of the process through which the caregiver's perception of, as well as attitude toward, the demented elder changed in the course of his or her care. We then sought to characterize the content of these changes from the point of view of the caregiver. We compared the characterizations for all 49 caregivers and analyzed the process through which the perceptions and attitudes of the caregiver had changed.
The caregivers clearly described the changes in their perceptions and attitudes toward the demented elder in the course of their daily lives. It became clear that these perceptions and attitudes changed over the course of time in a process of 7 stages, during each of which the caregiver demonstrated certain characteristic perceptions and attitudes toward the elder. As the caregiver moved from one stage to the next, he or she gained a progressively deeper understanding of die person being cared for; we did not observe any cases of caregivers whose understanding regressed or whose attitude became more negative.
Of the 49 caregivers studied, 1 (2.0%) was in stage 1, 1 (2.0%) was in stage 2, 6 (12.2%) were in stage 3, 9 (18.4%) were in stage 4, 5 (10.2%) were in stage 5, 17 (34.7%) were in stage 6, and 10 (20.4%) were in stage 7. The relationship between the caregiver's stage and the elder's level of dementia is shown in the Table.
Stage 1: First Notice of Eider's Dementia and Confrontational Approach
It is difficult for a caregiver to communicate with a demented elder, who becomes unable to understand words and whose behavior becomes disruptive. A dementia victim becomes unable to act normally in different situations and the caregiver is unable to predict what he or she will say or do. The caregiver becomes confused by the demented family member.
Most caregivers in stage 1 verbally express their concern about changes in the elder's behavior, and try to get the elder to explain what has happened; although they are aware of a change in the elder's behavior, they have not clearly grasped it as symptoms of dementia, interpreting it as deliberate selfishness or "daughter-in-law tormenting." As reflected in statements of stage 1 caregivers toward their charges (eg, "I got mad," "I was always negative," "The thought that I had to take care of this kind of person made me sick," "I would argue with him/her as an equal," and "we quarreled"), they tended to demonstrate negative or confrontational behavior.
This behavior is the result of the caregiver's belief that he or she cannot permit the older person to treat them confrontationally, and the conviction that the elder assumes that attitude because he or she harbors negative or confrontational feelings toward the caregiver. As a result, the relationship between the caregiver and the elder is tense and it becomes difficult to maintain the relationship between the two that existed before symptoms of dementia appeared.
Stage 2: Caregiver Recognizes Dementia and Ceases Criticism of Elder
In this stage, caregivers recount statements including "I read about dementia and realized that Grandfather was suffering from dementia - that was why he had changed," and "The doctor told me Grandfather was suffering from dementia, so I realized that the changes stemmed from dementia." Stage 2 caregivers learn about dementia care by reading books or from physicians. They recognize that the peculiar behavior of the elder is the result of dementia, and they therefore accept that the demented person does not harbor negative feelings or animosity toward them.
Although their understanding of dementia has improved, however, these caregivers still do not know how to cope with the demented person and generally respond to problems on a trial and error basis. They continue to talk to the demented person "whether he/she understands or not," carrying on verbal communication that is only formal and empty. Some study respondents said they tried to avoid interaction or engage in only minimal contact. In this phase, it became clear that there were some caregivers who consciously abandoned their previous relationship with the patient. Others tried following guidebooks on care of the elderly.
Relationship Between Caregiver Stage and Elder Level ot Dementia*
Stage 3: Hope that Elder's Condition Will Return to Normal
In this stage, caregivers think that because the elder is an adult, the elder ought to be able to do certain activities, scolding is the only way to make them understand, or there is some way to prevent the worsening of the dementia - all expressions of the caregiver's faint hope of improvement in the demented person's condition. Because of that expectation, caregivers in this stage adopt the same attitude he/she might in seeking to train or discipline a child, ie, scolding when something is done wrong, trying to get them to remember the names of flowers, having them help with cooking, doing simple calculations, and so on. In other words, the caregiver's expectation that the elder will return to normal patterns of behavior is an indication of his or her hope of regaining the kind of the relationship with the demented person that existed before the dementia developed.
Stage 4: Resignation to the Fact of Dementia and Adoption of Hands-Off Care Policy
In this stage the caregiver realizes that "nothing I say has any effect" on the elderly family member and "ultimately, nothing can be done." Typical comments from caregivers include "I simply keep a watch on him/her," "I do not intervene," and "I speak firmly to him/her much less frequently."
By this phase, the caregiver sees how the dementia has impaired the elder's abilities and daily activities and, in the course of routine care, realizes that nothing can be done to reverse the symptoms. During stage 3, the caregiver had hopes that his or her care would slow down or alleviate the symptoms, and was disappointed when this did not happen. This situation causes the caregiver to adopt an attitude of resignation, and to eventually give up trying to resist the demented person's behavior or take a coercive approach. When this happens, it means the caregiver has deliberately ceased to relate to the demented person; it does not matter if the demented person is confrontational or negative because it is at this point that the bond with the caregiver snaps.
Responses such as "Nothing I say has any effect" and "No matter what I say, he/she does not understand" are indications of verbal communication growing more difficult. However, all human beings, regardless of culture, communicate by means of words and gestures; communication consists of both verbal and nonverbal communication (Ruesch, 1968). Nevertheless, stage 4 caregivers apparently conclude that because they cannot communicate verbally with their demented family members, they can no longer communicate at all. Although it should be possible for the caregiver and the elder to communicate by nonverbal means, the caregiver has yet to realize this. It is not until the succeeding stage that the caregiver becomes aware of the potential for nonverbal communication.
From stage 1 to stage 4, the caregiver is at the mercy of unreliable verbal communication with the demented family member; generally relies on ordinary, conventional forms of care; and ultimately abandons hope of any kind of communication. Caregivers in these circumstances feel powerless and oppressed by their burden. The demented person, too, probably feels a sense of anxiety and isolation in a situation in which communication has been cut off with the person upon which he or she must depend. Under these circumstances, it is extremely difficult for demented elders to receive appropriate care.
This situation is the result of the caregiver, facing responsibility for a demented elder for the first time, relying on ordinary, conventional forms of care. We call this phase (spanning stages 1 through 4) the "beginning process."
Stage 5: Recognition that Interaction With Demented Elder Is Taking Place
In this stage, one caregiver commented that the elder "seems to know that I'm angry by my expression - and when I get angry, seems all the harder to handle." Other stage 5 caregivers, too, through observations of the expressions, gestures, and behavior - the nonverbal signs - of the demented elder in their care, showed that they had begun to notice their own influence on and interaction with the demented elder. That the caregiver had begun to observe such nonverbal signs in the elder indicates that he or she had acquired a way of checking the effectiveness and impact of the care given, which is likely to pave the way for better care.
Some caregivers also commented. for example, that "Even if I get angry, it has no effect, so it is me who feels miserable." This shows how, in this stage, caregivers realize how the demented person's presence affects them; it is an expression showing cognizance of the interaction. Some caregivers were conscious of their own responsibility toward the elder: "When I would be too overbearing, urination would become more frequent, so I gradually realized that I'm responsible for the elder's condition too." They begin to refer to observable nonverbal signs to evaluate the effectiveness of their care and try to improve it.
One caregiver said, "Getting angry simply made the situation worse, so I tried dealing with the situation in a joking, humorous way. I'd act as if the mess that was caused by the old man's incontinence was the family dog's fault. I redrew my eyebrows in a gentle line and did my best to act gentle."
Stage 6: Early Efforts to Understand Demented Elder's Nonverbal Signs and Feel Empathy for Elder's Condition
All the caregivers in this stage described their understanding and empathy for the demented elder's feelings and behavior. For example, "I began to feel sorry for him/her. My anger turned to a feeling of empathy." "I care for him/her by watching and trying to guess what is needed," and "I know how he/she is feeling from his/her expression" were among caregivers' frequent comments, showing clearly that they were actively using nonverbal signs to understand and achieve nonverbal communication with the elders in their care.
Nonverbal communication is ordinarily unconscious and overshadowed by verbal communication, but once caregivers of demented elders become aware of nonverbal communication, their care becomes more sympathetic and considerate as they more actively try to communicate feelings and relations via nonverbal means (Bateson, 1972).
Stage 7: Recognizing Qualities of Elder that Transcend Disabilities Caused by Dementia
In this stage, a warm, emotional relationship develops between the caregiver and the elderly relative: "I often touch grandmother's cheek and tell her I love her," "A demented elder shows you what is most important in life," and "I do not get angry any more. In fact, I often hug her." The caregiver has learned to perceive the aspects of the elder that are not impaired by dementia and to accept him or her despite the disabilities.
Beginning in stage 5 and continuing through stage 7, the caregiver becomes aware of interaction with the demented elder, is able to give warm and considerate care by using nonverbal communication, and learns to perceive the aspects of the person not impaired by dementia. We call this phase the "awakening process."
In these 7 stages, caregivers gain an increasingly better understanding of the demented elderly relatives in their care. We believe that care of persons with dementia can be described as a developmental process consisting of the beginning process and the awakening process.
THE TWO PROCESSES
In the beginning process, the caregiver is unaware of the interaction between himself or herself and the demented family member; the caregiver relies on conventional, generalpurpose methods of care and on verbal communication; and the caregiver thinks of care in terms of training and discipline of the person cared for. In the awakening process, the caregiver realizes that there is interaction between himself or herself and the demented family member, reflects on the nonverbal signs shown by the elder in order to improve care, and provides warm and considerate care by making the most of nonverbal communication.
The quality of life of a demented elder depends on the degree to which the caregiver is aware of the nonverbal signals the patient is issuing and to which the caregiver perceives those signs.
The relationship between where the caregiver stands in the developmental process and the degree of the family member's dementia, however, could not be clarified in this study, partly because the number of caregivers was too small. We believe, however, that the more serious the degree of dementia, the more quickly the caregiver will progress through the stages. This is because the more advanced the dementia, the more seriously the elder's capacity to communicate is impaired and the harder it is to rely on verbal communication. At this point, caregivers are forced to communicate with their charges nonverbally; once they become cognizant of interaction with the demented family member, their relationship becomes warmer and more supportive, because nonverbal signs can be relied on to effectively communicate feelings.
Furthermore, it may be that in order for a caregiver to be made aware of the importance of nonverbal communication at an early stage, some sort of outside aid or assistance is required.
Care of demented elderly family members imposes a heavy burden on many caregivers, but we believe that caregivers who feel nothing but a sense of burden are confined to those in the beginning process. All human beings engage in nonverbal communication and it is possible to communicate in this way more consciously. Barring ill health on the part of the caregiver, and with sufficient social supports and intervention, it should be possible for all caregivers to progress to the awakening process.
The next task, therefore, is to develop support that will expedite the advancement of caregivers to the awakening process. One approach is to enliven and stimulate demented persons' expressions, movements, and behavior (nonverbal signs) - and prompt caregivers' awareness of nonverbal communication. Day care, we believe, is one of the most effective means to stimulate such communication. This is because the expressions of elders in day care become more lively and their conditions improve somewhat (Ichihara, 1986; Saitoh, 1986; Yauchi, 1985).
The caregivers surveyed in this study used day care services, and the resulting stimulation of nonverbal signs and communication generated by the elders prompted, in turn, developmental changes in the perceptions and attitudes of the caregivers. In addition to day care services, therefore, training and support programs for caregivers will have to be developed.
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Relationship Between Caregiver Stage and Elder Level ot Dementia*