Caring for family members with Alzheimer's disease (AD) is extremely stressful and burdensome. Caregivers face problems of mental, physical, and emotional strains; career interruptions; lack of time for self, and others; isolation; and financial difficulties (Anthony-Bergstone, Zarit, & Gatz, 1988; Given, Collins, & Given, 1988; Zarit, Reever, & BachPeterson, 1980). Caregivers are often upset and disillusioned and express hopelessness about their situations. Many scholars have suggested a crisis may precipitate growth and development not possible when life progresses exactly as planned (Decker, 1993; Hanna, Giordano, Dupuy, & Puhakka, 1995; Reed 1991a). Levington and Gruba-McCallister (1993) maintain one's experiences, both good and bad, can promote growth toward personal wholeness and integrity. Fahlberg, Wolfer, and FahJberg (Ì 992) state experiences such as fear, loss, and grief provide the impetus for moving from a place of self-centeredness toward a broader view of life.
Some define this movement as selftranscendence - the ability to reach beyond constraints of "the here and now" so peace, contentment, and personal meaning can be found within a difficult life situation (Coward, 1996; Reed 1991b). The family caregiving experience might provide the context for the development of self-transcendence. Therefore, the purpose of this study was to identify evidence of selftranscendent views and behaviors in caregivers of adults with dementia.
CAREGIVING AND SELFTRANSCENDENCE
The caregiving experience provides a life-change framework within which to explore attitudes and behaviors that may be related to self-transcendence. Reed (1991b) and others (Haase, Britt, Coward, Kline-Leidy, & Penn, 1992) have linked the concept of self-transcendence with critical life events and pointed out those events can serve as the impetus for change and growth. Franici (1962) argues that people can lift themselves above difficult situations to create meaning from these experiences and move toward a purposeful and meaningful life.
CAREGIVER DEMOGRAPHIC D
Many scholars from several disciplines have theorized about the concept of transcendence. A summarization of the general points related to self -transcendence reveal it is seen as a developmental phenomenon (Chinen, 1986; Fahlberg et al., 1992; Reed, 1991a, 1991b, 1995; Smith, 1995; Tornstam, 1996, 1997) occurring primarily in old age or during times of life crises (Chinen, 1986; Reed, 1991a; Tornstam, 1996). Many scholars note the movement toward transcendence is inherently human and all individuals have an instinctive drive to move in a transcendent direction (Benner, 1989; Conn, 1987; Frankl, 1962; Reed, 1991b; Smith, 1995; Tornstam, 1996).
Coward and Reed (1996) note everyone has the ability to experience transcendence and it is related to a more positive way of living life. Benner (1989) states transcendence is a human characteristic and Asante (1984), Coward (1990a), and Hanna et al. (1995) note that to achieve transcendence, individuals must expend effort. Contexts such as environment, culture, and personality may influence one's path toward transcendence (Chinen, 1986; Tornstam, 1996). It is also viewed as a resource for, or characteristic of, mental health (Young & Reed, 1995). Outcomes of self-transcendence include an increased sense of well-being, an inner peace, and an enhanced meaning or purpose in life (Haase et al., 1992).
Reed (1991b) identified self-transcendence as a developmental issue of later life. Reed stated self-transcendent views and behaviors are resources individuals can use to cope with stressful life events. Reed argued that as individuals grow and develop, they are better able to see the perspectives of others, and they become less focused on their own concerns. Reed (1995) further defined self-transcendence as
the expansion of one's conceptual boundaries inwardly through introspective activities, outwardly through concerns about others' welfare, and temporally by integrating perceptions of one's past and future to enhance the present (p. 340).
Coward (1995) extended Reed's conceptualization of self-transcendence by saying that those individuals experiencing a life crisis who achieve a broadened perspective can find meaning within a difficult life situation.
Reed (1991b) states post-formal reasoning is necessary for the development of self-transcendent views and behaviors. Reed explains post-formal reasoning in the following way:
as complexity in life increases, higher levels of organization [postformal reasoning] are needed to accommodate the increasing complexity in a way that supports continued development (p. 69).
Post-formal reasoning is used to make sense of the world as one grows older and as life becomes more complex and difficult. Reasoning that occurs through post-formal thought processes helps individuals understand life challenges and find meaning within difficult life experiences, such as caring for a loved one with dementia.
Reed (1991b) also argued that as complexity and organization increase, individuals' conceptual boundaries are expanded from concrete ideas related to the way things work to more complex, expanded, and abstract boundaries. Reed maintains boundary expansion is achieved through personal reflection, connections with others and the environment, and an acceptance of the past and present with hope for the future.
Research Related to SelfTranscendence
Little research examining the relationships between self-transcendence and caregiving was located in the literature. One qualitative study by Miller (1994) investigated aspects of self- transcendence in family caregivers of adults with dementia after participation in a support group aimed at building trust, promoting a positive orientation, promoting control, and affirming and promoting strengths (Erickson, Tomlin, & Swain, 1983). Participants in Miller's study reported a process of Connecting with others, self, and a higher power or God. Miller concluded that, through this process, caregivers were able to transcend the rigors of caring for their family members to find meaning and peace within their difficult life experiences.
In a non-caregiver sample, Reed (1986) found an inverse relationship between self-transcendence and poor mental health symptomology in depressed and mentally healthy older adults. In another study of self-transcendence in individuals age 80 to 100, Reed (1991a) found a significant inverse relationship between mental health problems and self-transcendence, strengthening the link between selftranscendence and mental well-being.
In a sample of healthy adults, Coward (1996) found moderate positive correlations between self-rated health and self-transcendence, and strong positive relationships between self-transcendence and a sense of coherence, self-esteem, hope, and emotional well-being. Similarly, Upchurch (1999) found self- transcendence was positively related to activities of daily living and health status in a sample of older women.
Evaluating self-transcendence in individuals experiencing a life-changing event, Coward (1990a, 1990b, 1991, 1995) found self-transcendence to be related to emotional well-being in women with advanced breast cancer and individuals with AIDS. The results of these studies support the conceptual linkages between self-transcendence and positive psychosocial variables. The limited research related to selftranscendence in individuals experiencing life-changing events emphasizes the study of self -transcendence in populations such as caregivers of adults with dementia is needed.
The study was approved by the human participants protection committee. A descriptive, naturalistic field study design (Lincoln & Guba, 1985) was used. Purposive non-probability sampling technique was used to select a sample of 10 informants (Polit & Hungler, 1995). Sampling criteria specified informants were English speaking family caregivers of adults with dementia.
CONCEPTUAL CLUSTERS FOR DATA ANALYSIS
To invite potential participants into the study, leaders of caregiving support groups sponsored by the Alzheimer's Disease and Related Disorders Association described the study to support group members and extended an invitation for the caregivers to participate. Interested individuals who gave permission to be contacted were telephoned by the researcher to explain the study, to discuss protection of confidentiality, and to schedule an interview at the participants' convenience. The demographic characteristics of the sample are described in Table 1.
Data were generated by a guided interview focusing on the informants' experiences. The grand tour question, "Tell me about your experiences with caregiving" was used to initiate data collection. Probe questions were asked to gain further information. Examples of probe questions include:
* "What kinds of things do you do to stay involved with your interests, society, and people other than your loved one with dementia?"
* "Can you tell me about what you think about the changes in yourself and your life as you grow older?"
* "Can you tell me about how your thoughts of the past and present might affect the future?"
Participants were encouraged to talk about any and all of their caregiving experiences. Probes such as, "That is so interesting" and "Can you tell me more about that?" were used, if necessary, to elicit additional information. Each participant was interviewed once and a follow-up phone call was made if the investigator had questions related to the data. Each interview was tape recorded and transcribed verbatim. The interviews lasted from 45 minutes to 2 hours.
Data was managed via the QRS-NUDIST 4.0 (Sage Publications Software, Thousand Oaks, CA) computer program to facilitate coding and analysis. Data were analyzed using an inductive process framed by Reed's (1991b) definitions of self-transcendence (Table 2). Reed categorized selftranscendent views and behaviors into four conceptual clusters:
* Temporal integration.
* Aging acceptance.
The first cluster, generativity, can be identified from activities facilitating connections with others - such as helping others; involvement with family, community, and church; and being helped. Introjectivity activities are those personal experiences that assist one to connect with the self - such as hobbies, leisure time, formal or informal learning, and spiritual activities. Temporal integration includes evidence of acceptance of the past, present, and hope for the future. Evidence of aging acceptance is found when individuals express an acceptance and integration of age-related changes. The text of each interview was searched for words, phrases, or descriptors to uncover evidence of self-transcendence to provide units of data. As the data units were coded, each code representing one of the four conceptual clusters of self-transcendence was entered into the QRS*NUDIST 4.0 (Thousand Oaks, CA) computer program until the data were reduced into meaningful chunks.
Trustworthiness of the study findings was achieved through procedures to ensure credibility, consistency, dependability, and transferability (Sandelowski, 1986). Credibility (validity) was achieved by sharing the results of data analysis with three of the informants who confirmed that they agreed with the interpretations of the investigator. Consistency (reliability) was attained by the investigator conducting all the interviews and asking the same grand tour and probe questions to all informants. Dependability (validity and reliability) was ensured by having a research assistant code four of the interviews along with the investigator.
Coding procedures and resultant codes for themes were evaluated in a work session. The research assistant and the investigator were in 90% agreement regarding coded data. A consensus session was held to refine procedures for the disputed data. Transferability was attained by conducting the interviews in the informants' natural home environment.
Helping Others. All caregivers were involved in helping others because they were caring for a family member with dementia. Seven of the caregivers were also involved in helping others in addition to the care receivers. One caregiver spoke of helping those who had helped her, and one caregiver reported helping in community activities such as distributing Christmas candy. However, six of the caregivers reported helping activities related only to helping others in caregiving situations. Thus, connections to society outside the caregiving role were very limited.
Being Helped. Six of the caregivers reported being helped by others. Several caregivers reported being helped by their Alzheimer's disease support group. Only two caregivers spoke of other family members helping with care. One caregiver mentioned her husband provided emotional support, and the other said the family helped to make decisions. One caregiver reported she had no one to help with caregiving activities. No caregiver reported being helped in a personal way, apart from the role as caregiver. One caregiver said, "I have no brothers and sisters. I have no one to help me. I have my husband. But, you know, that wasn't his responsibility." Lack of help from others indicates few opportunities to connect with others outside the caregiving role.
Hobbies. Only four caregivers reported having hobbies. Participants said they had litde time for hobbies or personal interests. Most of the hobbies reported were those that could be enjoyed in the caregivers' homes, (e.g., sewing, growing plants, gardening, working in the yard). All caregivers reporting hobbies had placed their family member in a nursing facility. Neither of the caregivers caring for their family member in the home reported any hobbies.
Leisure. Four participants reported some sort of leisure time activities, such as visiting family, taking a drive, or resting at home. Respondents were quick to point out they had very litde leisure time. Two respondents said they enjoyed leisure time, but these types of activities were very infrequent. One respondent said she only had a very small amount of time to herself, it was very precious, and essential to her sanity. Caregivers reported they had too many responsibilities to engage in extended or frequent leisure activities.
Life-long Learning. Eight of the caregivers spoke about the need to keep learning, yet most said they did not have the time or energy to do so. One caregiver said she was going to start art classes. Two mentioned they enjoyed reading and learning new things. Four caregivers spoke only of the need to learn more about Alzheimer's disease by reading or talking with others.
Spiritual. Six caregivers spoke about spiritual issues. Four respondents said faith or talking to a higher power helped them through difficult times. One spoke of power and strength coming from God. Two said prayer helped them through difficult times in caregiving. All caregiver responses related to spirituality were linked to how spiritual beliefs helped them with their caregiving roles. A caregiver described her spirituality in this way, "I can honestly say that my faith has carried me more than anything."
Past Acceptance. Six of the caregivers spoke about acceptance of the way things had worked out. One said life has always worked out for her, both the good and bad, and she had learned acceptance. One caregiver mentioned caregiving made her stronger, while another said she was happy to pay her mother back for the care she had received as a child. Another caregiver said he felt his life was over when he had to place his wife in a nursing home, but he had since discovered life goes on and it can be joyful. Another caregiver described the strength gained from caregiving.
Past Negative. Six of the caregivers expressed negative feelings about past times and events. One said caregiving was wearing her out and she had accidentally overdosed on pills because of fatigue caused by stress. Two caregivers said the stress of caregiving built up until they lost their patience or temper with others. Another felt overwhelmed by the enormity of the longterm caregiving experience and stated she felt like an emotional wreck. Another said she hated caregiving. Six caregivers who expressed acceptance of past events also expressed negative thoughts and feelings about the past. This indicates some ambivalence related to past and present circumstances.
Present Acceptance. Eight of the caregivers expressed acceptance of their present situation. One stated she had a good Ufe once she had resolved the guilt over placing her husband in a nursing home. Another mentioned she adjusted to life and kept going forward. One caregiver said life is better than she ever imagined, and another said helping her mother was an opportunity to be a caring person. One caregiver said she found joy in life even though she had to be more realistic and work to make herself happy. One caregiver described acceptance by saying, "Well, my thoughts keep me company now and I like that."
Present Negative. Nine of the caregivers expressed some negative feelings about their present situation. One mentioned there was notbing at home except a cat, another said her mother's behavior was disturbing, and one said her life is lonely. Two of the caregivers expressed sorrow at the state of their relatives' health, and one participant talked about how sad she was her dad had dementia. One caregiver said she worried so much that she was numb, and felt like she could do nothing right. One said she felt trapped. Another said, "it is hard to let go of the way you want things to be." Another daughter said her mother's life was pathetic, and her own Ufe wasn't any fun anymore. Caregivers expressed ambivalence regarding their present situation. Some expressed acceptance, but many spoke negatively about their present life.
Future Acceptance. Half of the caregivers expressed positive feelings about the future. One said her financial future was secure, another said preparing for the future is important, and another said he had learned not to worry about what might happen in the future. Even though half of the respondents talked about future acceptance, the responses were very brief. The participants were reluctant to talk about the future. One caregiver said she tried not to fJhink much about the future.
Future Negative. Four caregiver respondents reported negative statements about the future, and most of the data were related to the hope they would not have Alzheimer's disease or feeling scared they might. One participant said,
Uh, I do worry that I'm going to get this too [Alzheimer's disease]. And I think that anyone who has an Alzheimer's person in the family wonders that. If I do [have Alzheimer's disease] I think I'll shoot myself.
It seemed hard for the caregivers to think about the future and their answers were very brief.
Positive Acceptance. Seven caregivers talked about growing older, three did not - even though they were asked how they felt about getting older. Four of the caregivers said they simply were not going to or did not plan to get older. Some stated they did not feel older and only one said she looked forward to growing older because she Uked the mellowness of age. One caregiver said he didn't feel older, but he must be because he cannot do the same things he had done when he was younger.
Negative Acceptance. Six caregivers responded negatively to aging. Two respondents said they used growing older as an excuse to not lose weight. One caregiver was upset because she had developed arthritis even though she had always taken care of herself, exercised, and eaten properly. One participant said she felt she was getting older and she didn't take care of herself, another said she wished she could stop getting older, and yet another said she hated getting older and she prayed she didn't live beyond her faculties. One caregiver said, "The downward trend, I hate the thought of it. I can't stand being sick. I'm the world's worst at it." Another said, "I hope there's a cure for that [growing older], I use it as an excuse to not take care of myself."
After the data were analyzed within the framework of Reed's (1991b) conceptual clusters, the data were examined again for conceptual meaning. Concepts that emerged from synthesizing the data included social isolation, ambivalence, burden of care, and emotional fragiUty.
Social Isolation. Each of the caregivers spoke about social isolation. They stated it was very difficult to connect with society, to be part of the community, and to engage in social activities - even though many of the caregivers expressed a desire to do so. Some caregivers reported even with increased leisure time, such as during respite care or after nursing home placement, they had difficulty engaging in social activities and concerns. One caregiver said, "Last year [when I brought my dad to Uve in a nursing home] I gave up most everything I did." Another said, "Tuesdays are my days, but usually there is a stack of paperwork waiting for me in the bedroom."
The caregivers spoke of caregiving as the central focus of their lives. Even when asked specific questions about their Ufe in general, they talked primarily about the duties and activities associated with caregiving. Their daily chores, leisure activities, plans, and hopes were situated within the caregiver context. They reported little time for usual developmental activities, such as grandparenting and volunteering.
Ambivalence. The caregivers spoke with ambivalence about their situations. While many of them said they did not like caregiving and they wished things were different, some of the same caregivers said they had learned and grown from the caregiving experience. Positive, neutral, and negative statements were made by the same caregivers related to issues of the past, present, and future. One caregiver said, "I guess being a caregiver, I mean, there were times where I was just so devastated, uh, about a year ago...and I still feel overwhelmed." Later the same caregiver said, "Caring for a loved one makes you stronger."
Caregivers also spoke with ambivalence related to the decision to institutionalize their family members. Although the participants said institutional placements were necessary, all spoke of it with guilt, sadness, and uncertainty. One participant said, "I know it [nursing home placement] is for the best, but I just feel so bad about it."
Burden of Care. The data revealed caregivers felt caring for their relative with dementia was their individual responsibility. A wife caring for her mother said her mother's care was her responsibility, not her husband's responsibility. A daughter with siblings, caring for her mother, said she was better able to handle her mother than any of her siblings. In fact, several caregivers reported caring for their relative was not the responsibility of any other family members.
Emotional Fragility. Emotional fragility also was evident in the caregivers' statements. The caregivers displayed many loud sighs, tears, and sad expressions during the interviews. They referred to the "ups and downs" of caregiving, such as hearing the news of a new memory drug only to realize later it would not be available for several months or years. Many caregivers wept when they spoke about nursing home placements. Caregivers said they were emotionally drained, the possibility of getting Alzheimer's disease was very scary, they felt guilty, they felt like "emotional wrecks," and life was not fun anymore. Many of the caregivers said they were relieved to be able to tell their story (to the interviewer) but it was exhausting to talk about their experiences.
In general, the caregivers in this study did not demonstrate much evidence of post-formal thought and their conceptual boundaries seemed restricted by social isolation, ambivalence, burden of care, and emotional fragility. These findings may indicate the absence of self-transcendence or that most of the caregivers in this study are still searching for meaning within their difficult life situation. While the data indicated some of the caregivers had reconciled the challenges of caregiving, few spoke of finding meaning from the experience, and few expressed selftranscendent views and behaviors. Frankl (1962) states individuals can make meaning by accepting difficult life events and in the most difficult circumstances, individuals can choose their attitude toward a situation, even if they cannot change the situation.
Many of the caregivers in this study expressed anger or emotional turmoil about their current situation and data indicated they were struggling to accept the challenges of their lives. Reed (1991b) argues when the developmental process of increasing organization is interrupted, development may be hindered. Caregiving for a loved one with dementia may be a developmental crisis that can provide the opportunity for growth and increasing development. However, growth, development, and self-transcendence require time and effort that may not be available to family caregivers because of social isolation and the burden of care. Caregivers in this study reported little time for tasks such as self-reflection (e.g., journaling, meditation, visualization) suggested by Reed to promote post-formal reasoning and boundary expansion, hence self-transcendence.
Caregivers in this study also demonstrated ambivalence, which may be indicative of less organization, less post-formal reasoning, and more concrete boundaries. Participants described both acceptance and non-acceptance of the past, present, and future. Some of the caregivers expressed great fear for what their future might hold.
Some expressed anger about their present situation, saying they hated caregiving. These data are disturbing when compared with Reed's (1991a) finding that higher indicators of acceptance of the present and hope for the future were related to lower levels of depression in older adults. Although depression was not measured in this study, the link between self-transcendence and depression in caregivers is an important area for future research because the rate of depression has been noted to be higher in family caregivers (Wright, Clipp, & George, 1993).
Social isolation and the burden of caregiving meant few respondents in this study had opportunities to connect with people, places, or things not related to caregiving. Erikson, Erikson, and Kivnick (1986) argue connections with friends and family are vital for healthy development as one ages. These connections validate past experiences and provide supportive resources for dealing with the challenges of aging and increasingly complex lives. In addition, the burden of care expressed by the caregivers meant they perceived little opportunity for personal quiet time to engage in reflective activities necessary for finding connections with self and personal meaning (Kolkmeier, 1995).
On a positive note, several caregivers reported spiritual connections helped them to cope with caregiving challenges. Some caregivers said the strength gained from the knowledge of God or a higher power helped them the most in dealing with the difficulties encountered in caregiving. Reed (1991b) states religious expression may help individuals expand self-boundaries and achieve self-transcendence.
Literature suggests difficult life experiences may provide the opportunity to develop self-transcendent views and behaviors, and research has linked self-transcendence to positive outcomes (Coward, 1996; Haase et al., 1992; Miller, 1994; Reed, 1991a; Unchurch, 1999). However, the development of self-transcendence during a life crisis is not automatic. In fact, results of this study show social isolation, burden of care, ambivalence, and emotional fragility may hinder the development of self-transcendence in family caregivers. Therefore, it may be important to find ways to facüitate self-transcendence in individuals experiencing challenging life events.
Miner's (1994) study of family caregivers aided by support group interactions indicates self-transcendent views and behaviors might be nurtured and facilitated. Participants in Miller's study reported after 12 months of participation in a support group designed to facilitate connections with others, foster inner strength, and promote control, they were able to find meaning and personal transcendence through connections with others, connections with self, and connections with a higher power. The participants said these connections facilitated their finding meaning within the caregiving experience. Miller wrote that these connections fostered the development of transcendence.
Although no practice guidelines can be formulated from this limited descriptive study, a few practice implications should be mentioned. Nurses can assess the stress and burden experienced by family caregivers. They may be able to assist caregivers in finding connections with others, increased personal time, respite care, and assistance to facilitate activities to promote self-transcendent views and behaviors (Acton & Wright, 2000).
Unfortunately, few societal accommodations are made for famiUes caring for individuals with dementing illnesses. It is simply not sociaUy acceptable to "lose one's mind," and there are few social activities in which cognitively impaired individuals can engage. Because of this, caregivers and their family members with dementia often choose to stay home, away from pubUc scrutiny, thus increasing social isolation and burden of care and decreasing opportunities for connections vital to the development of self-transcendence.
Nurses can help by educating society about dementing illnesses and assisting the public to find ways to connect with families caring for cognitively impaired relatives. In addition, nurses can work with family caregivers to overcome the social embarrassment sometimes associated with the problematic behavior of their family members with dementia.
There are several limitations to this study. First, the sample size was very small. Using 10 participants is congruent with qualitative work, yet a small sample means none other than contextual generalizations can be made. Participants in this study consisted of caregivers who cared for their family members at home and in institutions. Research shows that although caregiving experiences may change, the overall stress and burden of caregiving, while different, may not be reduced by institutionalization (Berry, Zarit, & Rabatin, 1991; Colerick & George, 1986; Light, Niederehe, & Lebowitz, 1994).
AU the caregivers in this study were White and weU-educated with a fairly high income. While this is typical of the geographic area where the study was conducted, it is not typical of the entire caregiving population. The sample consisted of spouses and adult child caregivers, and even though their experiences and burdens are similar, their developmental processes are different.
Last, no data related to length of caregiving, caregiver emotional state, or level of care-receiver impairment were collected. Thus, the influence of these variables cannot be evaluated. Future researchers might consider a more homogenous sample with a triangulated approach, such as matrix analysis (Miles & Huberman, 1994), so contextual variables such as length of caregiving experience or caregiver burden can be compared to the interview data.
Despite the study limitations, results suggest caregivers may have difficulty developing self-transcendent views and behaviors. In addition, they may experience developmental delays caused by the caregiving experience. Therefore, it is imperative to find ways to help caregivers engage in post-formal reasoning, to replace less complex organization with more complex patterns so conceptual boundaries may be expanded and healing and acceptance might be found within the caregiving experience. Future research efforts should be aimed at further clarification of the linkages between family caregiving and self-transcendence, and the development of specific strategies to faciUtate self-transcendent views and behaviors in family caregivers.
As the percentage of the population older than 65 continues to increase, so too will the numbers of those with cognitive impairment. Thus, it is critical to find ways to reduce the negative effects of family caregiving and enhance the developmental processes of caregivers.
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CAREGIVER DEMOGRAPHIC D
CONCEPTUAL CLUSTERS FOR DATA ANALYSIS