Journal of Gerontological Nursing

Subjective Responses to Caregiving for a Spouse with Dementia

Suzanne Narayan, PhD, RN; Marsha Lewis, PhD, RN; Jane Tornatore, PhD; Kenneth Hepburn, PhD; Sheila Corcoran-Perry, PhD, RN, FAAN

Abstract

ABSTRACT

Family members, typically spouses, serve as the primary caregivers for individuals with dementia. While it is recognized that caregivers experience both positive and negative subjective responses to caregiving, relatively little research has been done on the relationship between these types of responses. The objectives of the study were to examine the relationships between and among spouse caregivers' positive and negative subjective responses to caregiving, and increase understanding of the experience of being a spouse caregiver for a person with dementia. Fifty spouse caregivers completed quantitative measures of positive subjective responses (Positive Aspects of Caregiving and Caregiver Competence) and negative subjective responses (Relational Deprivation, Role Captivity, and Loss of Self). Additionally, participants were interviewed concerning their caregiving experiences. Positive Aspects of Caregiving and Caregiving Competence were significantly related to each other (p < .01 ), as were the three measures of negative subjective responses (p< .01). No significant correlations were found between any measures of a positive and a negative subjective response, suggesting the two types of responses are independent. Duration of caregiving was significantly related to Positive Aspects of Caregiving (p < .05), Caregiver Competence (p < .05), and Relational Deprivation (p < .01). Qualitative interview data revealed that participants simultaneously experienced caregiving as self-affirming, while also enduring losses and difficulties resulting from their caregiving role. Integrating the positive and negative aspects of the whole of caregiving is important to understand the caregiving experience and to design interventions to support caregivers.

Abstract

ABSTRACT

Family members, typically spouses, serve as the primary caregivers for individuals with dementia. While it is recognized that caregivers experience both positive and negative subjective responses to caregiving, relatively little research has been done on the relationship between these types of responses. The objectives of the study were to examine the relationships between and among spouse caregivers' positive and negative subjective responses to caregiving, and increase understanding of the experience of being a spouse caregiver for a person with dementia. Fifty spouse caregivers completed quantitative measures of positive subjective responses (Positive Aspects of Caregiving and Caregiver Competence) and negative subjective responses (Relational Deprivation, Role Captivity, and Loss of Self). Additionally, participants were interviewed concerning their caregiving experiences. Positive Aspects of Caregiving and Caregiving Competence were significantly related to each other (p < .01 ), as were the three measures of negative subjective responses (p< .01). No significant correlations were found between any measures of a positive and a negative subjective response, suggesting the two types of responses are independent. Duration of caregiving was significantly related to Positive Aspects of Caregiving (p < .05), Caregiver Competence (p < .05), and Relational Deprivation (p < .01). Qualitative interview data revealed that participants simultaneously experienced caregiving as self-affirming, while also enduring losses and difficulties resulting from their caregiving role. Integrating the positive and negative aspects of the whole of caregiving is important to understand the caregiving experience and to design interventions to support caregivers.

Dementia is a devastating disorder currently affecting 3 to 4 million individuals in the United States, most of whom receive care in community, rather than institutional, settings (National Institutes of Health, 1998; Shanas, 1979; U.S. Congress, 1990). With projected increases in the prevalence of AJzheimer's disease and related dementias, the number of individuals needing to be cared for in the community will also increase (National Institute on Aging, 1998). Family members, typically spouses, serve as the primary caregivers for individuals with dementia, often providing care for many years (Stone, Cafferata, & Sangi, 1987).

The caregiver role is associated with a risk of physical and mental health problems including depression, impaired immune response, burden, sleep difficulties, anxiety, as well as family discord and social isolation (Clipp & George, 1990; George & Gwyther, 1986; Kiecolt-Glaser, Dura, Speicher, Trask, Si Glaser, 199!; Lieberman & Fisher, 1995; Schulz, O'Brien, Bookwala, & Fleissner, 1995; Shields, 1992; Stommel, Given, & Given, 1990; Zarit, Reever, & Bach-Peterson, 1980). However, caregivers can experience both positive and negative responses to caregiving (Archbold, Stewart, Greenlick, & Harvath, 1990; Kinney Oc Stephens, 1989; Pearlin, Mullan, Semple,&Skaff,1990).

This study was designed to examine the relationships between and among spouse caregivers' positive and negative subjective responses to caregiving, and increase understanding of the experience of being a spouse caregiver for a person with dementia. Findings from the study will assist nurses and other health professionals to recognize and be sensitive to caregivers' responses to the caregiving experience. The study was part of a larger 3 -year investigation designed to test interventions targeted at family caregivers of noninstitutionalized individuals with dementia. The interventions are aimed at enhancing participants' decision-making and behavior management skills.

The theoretical underpinning of this study, as for much of the empirical work on caregiving, is stress theory. In its most general form, the stress model consists of three parts: Stressors, outcomes, and moderators. Stressors are difficult situations or conditions faced by caregivers (e.g., demands and tasks that tax and threaten to overwhelm the caregivers' resources). Outcomes include a broad range of possible consequences related to the physical and emotional health and well-being of both caregivers and care recipients. Moderators, the third component of the model, comprise social, personal, and material resources to help regulate the relationship between Stressors and outcomes.

Aneshensel, Pearlin, Mullan, Zarit, and Whitlach (1995) elaborated on types of Stressors. Some Stressors are viewed as inherent in caregiving activities. They include the objective conditions of caregiving (e.g., supervising the activities of the person with dementia) and the subjective responses these obligations elicit from the caregiver (e.g., a sense of being trapped in the caregiver role and feeling the loss of a shared relationship with the family member with dementia). Other Stressors result from the intrusion of caregiving into aspects of life beyond the context of caregiving. These Stressors include role strains (e.g., hardships and difficulties experienced in roles and activities outside of caregiving) and ìntrapsychic strains (problems and circumstances that diminish the caregiver's sense of self). For example, caregivers may endure role strain as a result of conflicts between caregiving demands and employment-related pressures. Additionally, caregivers whose personal identity is closely connected to that of a loved one with dementia are particularly vulnerable to a sense of loss of self.

Interest in the beneficial aspects of caregiving has mounted, as is evident from the proliferation of constructs such as rewards of caregiving (Archbold, Stewart, Greenlick, & Harvath, 1 990), positive aspects of caregiving (Resources for Enhancing Alzheimer's Caregiver Health [REACH], 1998), caregiving satisfaction (Lawton, Moss, Kleban, Glicksman, & Rovine, 1991; Macken, 1986), caregiving uplifts (Kinney & Stephens, 1989), caregiving competence, and caregiving gains (Pearlin, Mullan, Sempe, & Skaff, 1990). Cantor (1983) and Cicerelli (1983) have demonstrated that positive aspects of caregiving predict less stressful caregiving experiences.

There is limited but intriguing evidence concerning the relationship between positive and negative responses to caregiving. Deimling (1994) has suggested "just as with measures of positive and negative affect, which have been shown to be distinct and orthogonal dimensions (Bradburn, 1969), positive and negative caregiving effects may exist simultaneously and be orthogonal" (p. 272). Lawton, Moss, Kleban, Glickman, and Rovine (1991) characterized caregiving as "an activity of mixed valence for the caregiver" (p. 182). That is, caregiving can be fulfilling and self-affirming as well as depleting to caregivers' energies. Lawton, Moss, Kleban, Glickman, and Rovine found that, at least for spouse caregivers, positive responses to caregiving were largely unrelated to negative responses.

Overall, the literature revealed little acknowledgment of caregivers* positive subjective responses to caregiving and sparse evidence concerning the relationship between caregivers' positive and negative responses to caregiving. In addition, researchers have focused almost exclusively on quantitative measurement of subjective responses to caregiving, rather than exploring these perceptions in the caregivers* own words. Therefore, in this study the authors addressed the following research questions:

* What is the relationship between spouse caregivers* perceptions of positive aspects of caregiving, caregiving competence, relational deprivation, role captivity, and loss of self?

* How do spouse caregivers describe their experience of caregiving in relation to the five variables listed above? The authors were also interested in examining the relationship between demographic variables and caregivers subjective responses to caregiving.

Table

TABLE 1DEMOGRAPHIC CHARACTERISTICS OF SPOUSE CAREGIVERS AND CARE RECIPIENTS

TABLE 1

DEMOGRAPHIC CHARACTERISTICS OF SPOUSE CAREGIVERS AND CARE RECIPIENTS

METHOD

Participants

Participants for this repon were the first 50 spouses recruited for a larger intervention study of family caregivers of community-dwelling individuals with dementia living in the greater metropolitan Minneapolis-St. Paul area. Data were obtained from only 43 participants for the qualitative interview. (Data were missing from seven participants whose interviews were not recorded because of human error or equipment malfunction.)

Table

TABLE 2INTERVIEW QUESTIONS

TABLE 2

INTERVIEW QUESTIONS

Information about the study was distributed to potential participants through Alzheimer's Association-affiliated support groups and informational sessions; by letters from physicians; and through various employees in HMOs, day care centers, and other agencies working with individuals with dementia or their families. Spouses were eligible to participate in the study if:

* Their husband or wife had major memory problems.

* The person with dementia was not expected to be placed in a nursing home or group home within the next year.

* The spouse was the primary caregiver for the care recipient. Demographic characteristics of the participants are presented in Table 1 . Thirty-seven (74%) of the spouse caregivers were women and all were White. Caregivers ranged in age from 50 to 88 years, with an average age of 73, Care recipients ranged in age from 60 to 88, with an average age of 77. As might be expected with an older sample, most (94%) of the spouse caregivers were not currently employed. The sample was welleducated. Fifty-six percent of the caregivers reported household incomes between $20,000 and $39,000 per year. All participants had been caring for their spouses for 6 years or less.

Instruments

Data were collected on two positive (i.e., positive aspects of caregiving and caregiver competence) and three negative (i.e., relational deprivation, role captivity, loss of self) subjective responses associated with caregiving. The Positive Aspects of Caregiving scale (alpha = .88) contained 11 items phrased as statements about the caregiver's perceptions of good things that have arisen from the caregiving experience (REACH, 1998). Response options are on a 5point scale (5 = agree and 1 = disagree). A higher score indicates a greater presence of positive aspects of caregiving. An individual's score is the sum of the scale items.

Table

TABLE 3MEANS, STANDARD DEVIATIONS, RANGES AND ALPHAS OF STUDY VARIABLES

TABLE 3

MEANS, STANDARD DEVIATIONS, RANGES AND ALPHAS OF STUDY VARIABLES

The Caregiver Competence scale (alpha = .74) contained two items related to thoughts and feelings about caregiving and two items asking participants to rate how competent and self-confident they feel about caregiving. Response options are on a 4point scale, with higher numbers indicating a greater sense of competence. A persons score on the Caregiver Competence scale is the average of the scale items.

The measures of subjective negative responses (i.e., relational deprivation, role captivity, loss of self) were developed by Pearlin, Mullan, Semple, and Skaff (1990). The Relational Deprivation scale contained six items, three of which focused on the extent to which participants felt relational losses in the areas of intimacy with spouse and contact with others (alpha = .77) and three that focused on the loss of goals and activities once shared with the spouse (alpha = .67). The Role Captivity scale (alpha = .83) comprised three items related to feeling trapped or wishing to be free and the Loss of Self scale (alpha = .76) contained two items focused on loss of an "important part of yourself" and "who you are." Response options for these three measures are on a 4-point scale, with higher numbers indicating a greater presence of the variable. A person's score on the scales measuring the negative subjective responses is the average of the scale items,

In addition to the quantitative measures, a semi-structured interview was conducted to gather participants' perceptions of the caregiving experience. The interview included 10 questions. The first and last questions were open-ended, and the remaining questions focused on different aspects of the caregiving experience (Table 2). Interviewers asked the questions using minimal prompts (e.g., is there anything else you want to say about being a caregiving spouse?). All of the questions were found to elicit participants' positive and negative subjective responses.

Co-investigators and research assistants were trained in interviewing techniques for this qualitative measure. Training included listening to an interview with a family caregiver and critiquing the interviewer's approaches. In addition, research assistants and co-investigators role-played the parts of both caregiver and the interviewer in simulated interviews prior to collecting data from study participants. Review of the transcripts validated that interviewers were nondirective.

Demographic data were collected as part of a questionnaire mailed to study participants. Data included the caregiver's age, gender, educational level, and ethnic background, and the care recipient's age, family income, and length of time the care recipient had required assistance because of dementia.

Procedure

Following approvai by the appropriate human participants committees, data for this report were collected from spouse dyads during the initial data collection point for the intervention study. A mailed packet of questionnaires, including a consent form and the scales to measure the variables in this report, was sent to the spouse caregiver. During a scheduled appointment at the couple's home, two research team members (coinvestigators or research assistants) reviewed the consent form with the couple and obtained written consent. At this time, one team member conducted a semi-structured interview with the spouse caregiver, while the second team member collected other measures with the care recipient. Qualitative interviews lasted approximately 15 to 30 minutes. Questionnaires were reviewed with the caregivers to assure they understood the items and did not accidentally miss any of them. After the inhome data collection, participants were randomly assigned to treatment and control groups for the intervention study.

Table

TABLE 4CORRELATIONS AMONG THE STUDY VARIABLES

TABLE 4

CORRELATIONS AMONG THE STUDY VARIABLES

RESULTS

Relationship Between Positive and Negative Subjective Responses

Descriptive statistics for the study variables are summarized in Table 3. The means on the two positive subjective responses indicate that the participants, on average, believed they had received at least some benefits from caregiving, and viewed themselves as competent caregivers. One third of the sample agreed "a little" or "a lot" that they had experienced good things from caring for their spouse with dementia. Nearly two thirds (66%) perceived themselves as "somewhat" or "very" competent caregivers.

In regard to the negative subjective responses, participants acknowledged experiencing relational deprivation and role captivity. Nearly half (47%) experienced relational deprivation "quite a bit" or "completely." Almost two thirds (66%) reported feelings of role captivity, with more than a quarter (26%) of the sample feeling "somewhat" or "very much" trapped in their caregiving role. On average, participants reported relatively little loss of self. Only 17% of the sample acknowledged having lost a sense of self "quite a bit" or "completely."

Pearson product-moment correlations of all the study variables showed significant relationships between several of the subjective responses to caregiving (Table 4). A significant positive correlation (r = .46, p < .01) was found between positive aspects of caregiving and caregiver competence, suggesting that participants who believed good things came from caregiving also tended to view themselves as self-confident and competent caregivers. The three negative subjective response variables (i.e., relational deprivation, role captivity, loss of self) were moderately and significantly related to each other (Table 4). Thus, caregivers suffering from a loss of an intimate relationship with their spouse were more likely to feel trapped in their caregiving role and experience diminished self-identity. There were no significant relationships between either positive aspects of caregiving or caregiver competence and loss of self, relational deprivation, or role captivity, suggesting the positive subjective responses may be independent of the negative subjective responses to caregiving.

Caregiving Experience

Qualitative information from the semi-structured interview was analyzed to illustrate caregivers' experiences as they related to positive aspects of caregiving, caregiver competence, relational deprivation, role captivity, and loss of self. Prior to coding the interview data, the research team developed working definitions of the study variables drawn from Pearlin, Mullan, Semple, and Skaff (1990) and REACH (1998). Next, four research team members independently coded the transcripts for instances of the five variables, with two team members coding each variable. Then, the team members met, reviewed their coding of each variable, and arrived at consensus on the coding of transcript excerpts that were ambiguous or that one of the team members had coded differently from the other. Finally, the team conducted an additional review of the coded transcripts and compiled lists of key words and phrases interpreted by the research team as participants' expressions of the positive and negative responses to caregiving.

Positive Subjective Responses to Caregiving

Thirty-three percent of participants explicitly mentioned positive feelings, as well as other benefits, advantages, or opportunities inherent in their caregiving experience. They used words and phrases, such as, "you get closer together," interpreted as strengthening their relationship with others; and "learning there are things to be thankful for," that implied new learning.

The following example illustrates the positive aspects of caregiving perceived by a 59-year-old woman who was engaged in a demanding, full-time professional career and had cared for her husband for less than a year.

I have learned a lot about my own strengths-having more confidence in myself to make major decisions alone....and living in the moment. I thought I did that before but with an Alzheimer's patient in your life, that's very much what you do because you can't really talk about the past a lot...So living in the present is just really important and valuing what we have and enjoying it.

Emerging from this excerpt is a sense of the caregiver's feelings of confidence and enjoyment in relation to learning more about herself and living in the present.

The interviews yielded several examples of caregivers' explicit appraisal of their caregiving ability, as well as revealing activities that reflected demonstration of competence. Forty-seven percent of the caregivers used language such as, "I've done pretty good," "I've taken good care of her and I'm satisfied with that," and "I feel on top of it," to describe their appraisal. A 60-year-old retired caregiving wife commented on her own caregiving abilities in the following way:

And I think I've done pretty good.... I try to do a lot of things to help him and I try to think of new things to keep him busy, which there aren't too many things.... So, but I've been learning. And I think now I'm doing OK.

This participant viewed herself as a good caregiver and described her efforts to keep her husband involved in activities geared to his cognitive abilities.

One example of a caregiver whose language reflected both positive aspects of caregiving and caregiver competence follows:

I feel that I can handle everything that has come along so far. And I just feel I'm on top of it I've learned to cook and I'm in that process and I love it... Oh, I love to read recipe books and I love, see that [television channel], it's a cooking channel and I watch them [sic], and it's really interesting. It's, you know, doing a recipe, is like reading a score in music, you know, and you figure it out and if it comes out well, super.

Table

TABLE 5CORRELATIONS BETWEEN STUDY AND DEMOGRAPHIC VARIABLES

TABLE 5

CORRELATIONS BETWEEN STUDY AND DEMOGRAPHIC VARIABLES

In this example, this 76-yearold Caregiving husband conveyed both a sense of delight in a good thing that came out of Caregiving (e.g., learning how to cook) and expressed self-confidence in his newly developed ability.

Negative Subjective Responses to Caregiving

A majority of participants (74%) clearly expressed relational deprivation with their spouses, as well as with members of their social network. They described their spouses as "not the person that they used to be." Their loss of intimacy and companionship with their spouse was described in words such as, "more like a child relationship," "we don't do anything together," and "no touching at all." Caregivers descriptions of the loss of contact with friends included, "we haven't made one new friend, lost quite a few others," and "abandoned by friends, family, neighbors." The following excerpt from a 63-year-old caregivmg wife is typical:

It's, it's not like having a mate. I'd say he's still my friend but it's just lonely. Real, real lonely. And there's nothing you could sit down and discuss or even if I talk about something the neighbor said or something going on in the family, two seconds later he does not remember and he usually doesn't, usually doesn't respond. And then just the intimacy and the personal things of being together are gone and that's probably the hardest.... Our social life has not changed because I won't let it but it's not the same and sometimes I feel very jealous and very sad that we can't be the same way or that he can't converse with the guys the same.

This example illustrates multiple losses including intimacy, shared conversation, and a satisfying social life.

Sixty-one percent of participants expressed feelings of role captivity. Caregivers used words that described feeling confined, tied down, trapped, and obligated, and wanting to escape or get away. Phrases that reflected role captivity included, "feeling like I'm in jail," "can't go anywhere," and "have to take care of everything." A 70-year-old woman commented on her undesired role as primary caregìver for her second husband:

So finding myself in this confined position, you know, I keep thinking, "Oh golly, this is not what I wanted for my retirement years." And I keep thinking that by the time [husband] gets over [sic], or is no longer [there] to take care of, I'll probably be too old to care if I go anywhere anymore.... You know I feel very sorry on the one hand and I feel very trapped on the other hand.

This participant's words conveyed vividly her reluctance and regret at being held captive to Caregiving.

Loss of self in the sense of loss of personal identity was not verbalized as explicitly as the other subjective responses. Only 19% of caregivers used language that was interpreted as loss of self. Examples of the way caregivers expressed this response were, "I just don't have a life of my own anymore," Tm not doing anything to better myself," "I can't do it anymore," and "I gave it up" (referring to activities such as clubs, job, and church). Caregivers such as this retired businessman did express a diminishment of self that occurs when caregiving takes over their lives, displacing or decreasing their previous activities or involvements.

I used to be going all the time. I was president of this club, and businessman clubs, and when you're a real estate broker, you run. Now I can't do all of that. So that cuts me down. I just don't do it anymore.

This participant clearly disclosed a sense of self-loss associated with the exclusion of roles and activities that were self- validating.

Consistent with the quantitative findings of positive correlations between relational deprivation, role captivity, and loss of self, one participant's comments reflected all of these negative subjective responses. This 80-yearold caregiving wife poignantly described her caregiving experience in this way:

A long time ago, when the husband died, the wife was buried alive with the body. I think that's kind of what happens [laughs] to wives sometimes over here because you lose a lot of your [incomplete thought], you aren't buried aìive, you aren't dead, you aren't tortured or any [sic] that way, but you are so bound by the husband's illness it almost puts you in an illness phase when you are still healthy.

This participant's use of an analogy conveyed her simultaneous feelings of loss and being trapped in the caregiving role.

Positive and Negative Subjective Responses to Caregiving

Fifty-eight percent of spouses expressed both positive and negative subjective responses in the interview. This 60-year-olwoman's experience of being a caregiver is illustrated in the following example:

Well, it's been somewhat difficult because it's a totally different role that I'm playing. We used to be husband and wife, lovers, soul mates, best friends, and that's all changed. And it's changed over a period of time so that it wasn't like it happened overnight or anything.... Someone suggested to write down everything you've [sic] accomplished since I retired.. ..and that's quite a list there, so I have accomplished quite a few things....! had to take over all the financial situation. I had to get long-term care insurance for myself. I had to get new medical insurance for us before I retired.... And there have been just so many things I've had to deal with... .and I think, I've done pretty good.... I have to just do the best I can, you know. So I do try that....I have to say I grieved for maybe a year after he was diagnosed because I realized we didn't have the relationship we once had.... I used to get up every morning and read my books and cry before I went to work. And it just took me a while to get through it,... I think you just learn as much as you can. I've read a lot of things. I go to support groups.... So you know, just try to make the best of a situation. You can't do everything you used to, but do what you can do.

This participant, who scored high on reíational deprivation, positive aspects of caregiving, and caregiver competence, describes the painful loss of her relationship with her husband, as well as the new skills she has learned in her caregiving role.

Relationship Between Demographic Variables and Subjective Responses

An examination of the correlations between caregiver demographics and subjective responses to caregiving revealed several significant relationships (Table 5). Caregiver age was negatively related to role captivity (r = -.44, p < .01) indicating that younger spouse caregivers were more inclined to experience feelings of being trapped and loss of freedom than their older counterparts. Duration of caregiving was significantly and positively associated with relational deprivation (r = .38, p < .01), positive aspects of caregiving (r - .33, p < .05), and caregiver competence (r = .35, />< .05).

Thus, the longer caregivers were involved in the task of caregiving, the more likely they were to suffer relational deprivation. In contrast, caregivers* sense of competence and confidence in their own caregiving ability increased over time, as did their recognition that they had gained valuable things from caregiving. Correlations between caregiver gender and loss of self (r = .28, f = .058) and role captivity (r = .28, p = .053) approached significance. This suggests that caregiving wives were more likely to experience a diminished sense of self and feelings of being trapped in the caregiver role than were caregiving husbands.

DISCUSSION

As might be expected, the positive subjective responses to caregiving, measured by positive aspects of caregiving and caregiver competence, were significantly related. This moderate, but significant relationship is consistent with Pearlin, Mullan, Semple, and Skaff's (1990) finding of a relationship between caregiver competence and personal gain - a measure that taps some of the same characteristics as the Positive Aspects of Caregiving scale. Similarly, significant relationships found among the negative subjective responses, relational deprivation, role captivity, and loss of seif, were comparable to the results of Aneshensel, Pearlin, Mullan, Zarit, and Whitlach (1995) and Pearlin, Mullan, Semple, and Skaff (1 990) for loss of self and role captivity and role captivity and relational deprivation.

Consistent with Deimling's (1994) contention that positive and negative caregiving effects may be orthogonal was the finding that positive and negative subjective responses to caregiving were unrelated. Quantitatively, there was no significant correlation between any measures of a positive and a negative subjective response. Participants' interview data suggested positive and negative subjective responses to caregiving can coexist. These qualitative data revealed instances of participants simultaneously experiencing caregiving as self-fulfilling and affirming, while also experiencing the perceived losses and difficulties resulting from their caregiving role. This provided qualitative support for Lawton, Moss, Klebman, Glickman, and Rovine (1991) theoretical proposition that caregiving has mixed valence for the caregiver.

This acknowledgment of mixed valence reflects the evolving image of family caregiving. This image is being transformed gradually from a limited focus on loss and burden to a more holistic portrait of personal growth within the process of giving care to a loved one. This transformation is reflected in Thorne and Patterson's (1998) description of the shifting image of chronic illness from an emphasis on loss and burden toward that of health within illness.

The finding that duration of caregiving was significantly correlated with positive aspects of caregiving, caregiver competence, and relational deprivation is a good example of this simultaneous existence of positive and negative responses. This finding must be interpreted cautiously in view of the fact that many caregivers cannot sustain their role and must institutionalize the family member with dementia. However, in this self-selected sample, veteran spouse caregivers recognized that caregiving had enriched their lives and they perceived themselves to be competent at their job.

The limitations of this research may be addressed in future studies by increasing the sample size and recruiting a more ethnically and socioeconomically diverse sample. Studies need to be undertaken to determine the role that positive subjective responses play in the overall outcomes of the caregiving experience. As part of a larger ongoing study, the relationship between positive and negative responses to caregiving will continue to be examined to reveal the similarities and differences between the caregiving experiences of spouses and other family members.

NURSING IMPLICATIONS

This study highlights the importance of clinicians' recognizing and appreciating the potential for personal benefits inherent in the spouse's caregiving experience while still acknowledging the personal costs. Realizing that both of these responses can be present within the spouse's perception of caregiving may help nurses and other health professionals understand how caregivers choose to remain in this role for many years.

Clinicians might help caregivers focus on the benefits by asking, "What have you gained from taking care of your spouse?" This type of question explicitly focuses the health professional and caregivers' attention on the positive aspects of the caregiving experience, something that is valued but often overlooked. Health professionals need to be alert to the language used by spouse caregivers as a guide for discussing caregivers' positive and negative responses. For example, the health professional working with a spouse who used the term "trapped" in discussing her caregiving situation might explore the aspects of the situation that make her feel that way.

The substantial numbers of caregivers who reported experiencing relational losses emphasize the need for supportive interventions. For example, caregivers who express a loss of relationship with their spouses with dementia may need help in working through the grieving process, even though their spouses are still physically present. The intervention appropriate for this situation would be to help caregivers recognize, identify, and legitimize the loss, and openly discuss and process their feelings.

Caregivers need to be encouraged to maintain an active network of supportive family and friends. Support groups can also provide opportunities for caregivers to share their feelings with others in similar situations. Integrating the positive and negative aspects into the whole of caregiving is important to understanding the caregiving experience, explaining the variances among caregivers, and designing interventions to support caregivers.

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TABLE 1

DEMOGRAPHIC CHARACTERISTICS OF SPOUSE CAREGIVERS AND CARE RECIPIENTS

TABLE 2

INTERVIEW QUESTIONS

TABLE 3

MEANS, STANDARD DEVIATIONS, RANGES AND ALPHAS OF STUDY VARIABLES

TABLE 4

CORRELATIONS AMONG THE STUDY VARIABLES

TABLE 5

CORRELATIONS BETWEEN STUDY AND DEMOGRAPHIC VARIABLES

10.3928/0098-9134-20010301-05

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