Blessed assurance The role of religion and spirituality in Alzheimer's disease caregiving and other significant life events.
In recent years, research in a broad range of disciplines has turned attention to how religion and spirituality influence different aspects of physical and mental health (Ellison, 1991; Koenig, 1994; Levin, 1994). Matthews, Larson, and Barry (1993) have identified a "faith factor," referring to the consistent manner in which research has shown religion to have a positive influence on overall health. A similar line of work has highlighted the importance of religion and spirituality as resources for coping with stressful life events (Chang, Noonan & Tennstedt, 1998; Pargament, 1998; Pargament et al., 1990; Picot, Debanne, Namazi & Wykle, 1997).
The present study sought to further clarify the connections among religion, spirituality, and significant life events by examining a group of Alzheimer's disease caregivers and a matched comparison group of noncaregivers. How is it that religion and spirituality improve health or help people cope with life events? A "true-believer" would argue that "prayer works" and that God has taken favor on them. This type of response can meet with great skepticism and resistance from both the practitioner and scientific communities. Indeed, as noted by King and Dein (1998), many practitioners have held long-standing negative views of religion, in particular, because of its propensity to induce guilt among fallible followers. They have viewed religion as part of the problem of emotional distress, not as part of the solution. Researchers have not traditionally examined the role of religion or spirituality in the human condition because of a similarly historic tension between science and religion. Ironically, by employing the scientific method, both practitioners and clinicians can objectively examine the relationships among religion, spirituality, and well-being and gain important insight into the underlying nature of these relationships.
2. Religion and spirituality defined
Part of the tension between religion and science is the often ambiguous or ill-defined terms of religion and spirituality. Writers even at the forefront of research in this area will use the terms interchangeably, which can contribute to confusion when interpreting study results. Religion and spirituality are defined here in the following ways. Religion is a particular doctrinal framework that guides sacred beliefs and practices in ways that are sanctioned by a broader faith community. It is a system of beliefs and practices that helps structure how people worship. Spirituality refers to beliefs and practices that connect persons with sacred and meaningful entities beyond themselves. These beliefs and practices often create and sustain a personal relationship with a supreme being as defined according to one's own beliefs, and give meaning and purpose to life. Although they are not mutually exclusive, religion emphasizes a communal type of worship and spirituality emphasizes a personal or meditative worship experience.
Moreover, this study proposed as a specific construct to help explain the connection between religion, spirituality, and well-being a condition under which spiritual and religious beliefs and practices have a positive impact on health outcomes. The Reconciled Life Perspective (RLP) refers to the extent to which individuals have reconciled their spiritual and religious beliefs and practices with adverse events in their lives. Those with a strong RLP do not feel abandoned by a supreme being, but rather draw on this entity for support. They do not expect that they will be protected from traumatic life events because they adhere to a particular religion or spiritual practice or belief. The study proposed that strong religious and spiritual beliefs and practices are effective adaptation resources if persons have a strong RLP, i.e., they are beneficial if persons do not feel abandoned by their faith when adverse events occur. As a first step, this study sought to begin to clarify the RLP construct. On-going research initiatives, led by the author, are seeking to take the next steps by linking a RLP to positive health and well-being outcomes.
3. Impact of religion and spirituality on well-being
Religion played an important role in the scholarly writings of early sociologists. Durkheim (1951) argued that religion served both a social and a mental health function. Not only was religious participation an important social activity, but also those who adhered to religions with clear lines of unquestioned religious authority were less likely to commit suicide than individuals who followed religions that offered a less defined authority structure. James (1958) articulated different aspects of religion noting that it may have beneficial or deleterious effects on individuals. The "healthy soul" has fully integrated religious beliefs into his or her lifestyle, and has a positive view of religious and spiritual beliefs. The "sick soul" has an undue focus on the guilt associated with failing to measure up to certain standards of a particular religion. The "sick soul" also would include persons who feel abandoned by their religion or who are disappointed that their lives have not measured up to their expectations.
Contemporary research, like the work of Koenig (1994), has identified two key reasons why religion, in particular (though one could add spirituality), may play an important role in overall well-being. First, religion provides a framework for understanding why, in the words of noted rabbi and author Harold Kushner, "bad things happen to good people." A religious belief system can offer a rationale for why pain and suffering exist. Second, many religions foster the hope in an "afterlife" that will transport followers to a utopian existence after they die. Current difficult circumstances are manageable if viewed as temporary burdens before an eternal reward. Levin (1994) adds another somewhat less mystical explanation for the link between religion and health. Some religions, e.g., Mormonism, promote lifestyles (no smoking, no drinking) that, in turn, have a positive impact on health.
4. Religion and spirituality and coping
The work of Pargament et al. (Pargament, 1998; Pargament et al., 1990) has extensively focused on religion and coping. He has called for an incorporation of the religious dimension into research on coping because of the consistency with which he has found persons to rely on their religious practices during times of stress and crises. Furthermore, Pargament (1990) has identified ways in which religion can play a role in coping. For one thing, religion may play a role in a coping ritual. For example, most funerals have a religious component that seeks to comfort the bereaved. Religious or spiritual involvement also may prevent potentially risky coping behaviors, such as alcohol use or drug abuse.
A specific coping behavior associated with both religion and spirituality is prayer. Bearon and Koenig (1990) highlight the importance of prayer during sickness. They found that among an elderly population, the use of prayer as a supplement to medical care was common, though the practice of prayer did vary by religion and education. The respondents did not express an expectation that God played an active role in health and illness, but, nevertheless, most prayed about health concerns on a regular basis.
Interestingly, Reed (1994) has noted that spirituality, which in this context may or may not include a religious element, should be viewed differently than as an ad hoc coping resource only to be called upon when life approaches an overwhelming state. Rather, she argues that spirituality might be "better understood as a basic human phenomenon, sustained throughout life, and occurring in various observable behaviors ..." (p. 394).
5. Religion, spirituality, and Alzheimer's disease caregiving
Less studied has been the specific role of religion and spirituality in the AD caregiving experience. Certainly, one of the most stressful life events that one could ever encounter is caring for a family member or close friend who has a dementing illness. Four different themes highlight the work that has been done in this area, some experiential, but most research based: (1) church or synagogue as a support network; (2) use of religion or spirituality as coping resources; (3) personal accounts of spiritual growth; and (4) transcending loss to find meaning.
The first theme emphasizes the supportive role that churches, synagogues, and other places of worship can play in the caregiving experience. Stuckey (1998) describes situations where churches became active participants in the caregiving experience, with church members taking on chores around the house or offering the caregiver respite. Burgener's (1994) work not only documents an association between attending to spiritual needs and increased well-being, but also advocates for linking religious institutions with healthcare providers. As partners in service delivery with providers, religious institutions can help bridge the mistrust of the social service industry inherent in certain age or religious groups. They can legitimize the importance of seeking help in the caregiving situation and facilitate initial and follow-up interactions with the service provider.
Second, relying on religious or spiritual beliefs has consistently been shown to be an important coping strategy in the caregiving situation. Whitlatch, Meddaugh, and Langhout (1992) report that religiosity emerged as a significant coping resource across multiple aspects of caregiving. Stolley, Buckwalter, and Koenig (1999) identify prayer as an important way that caregivers cope with their situations. Picot et al. (1997) underscore the need for practitioners to attend to the spiritual and religious coping needs of caregivers, particularly among African Americans.
The third theme encompasses the work of Fish (1996) and Sisk (1992). These caregivers, Fish for her mother and Sisk for her parents-in-law, speak of spiritual growth during their respective caregiving experiences. Fish adhered to the promise that God would never abandon her and describes how she gained strength from this promise. Sisk writes of how her faith in God sustained her during the challenges of caregiving.
How do people get through the rough times without the help of the Lord and his people? I must say a word about the supernatural strength that is ours to draw on in difficult times like these. The Lord did promise us that he would never put more on us than we could bear and his grace would be sufficient for every trial (p. 56).
Finally, others have reported that caregivers use their religious beliefs to bring meaning and purpose to their circumstances (Farran, Keane-Hagerty, Salloway, Kupferer & Wilken, 1991; Kaye & Robinson, 1994; Wright, Pratt & Schmall, 1985). Rather than focusing on the sadness of the disease, they rely on their faith to transcend the losses associated with this disease and look for positive outcomes that have emerged despite the loss.
Turning now to the aims of the present study, the purpose here was to build on this body of previous work by looking for reasons why and how both religion and spirituality are related to health and coping. If persons develop a RLP, they have reconciled their life circumstances with their religious and spiritual views. Accordingly, they would be expected to experience more positive health outcomes than those who do not develop a RLP. If reconciliation cannot be developed, religion and spirituality may become barriers to positive health outcomes. Nonbelievers may not have a religious tradition with which to reconcile when adverse life events occur. However, they may still feel abandoned or bitter because of their circumstances. Therefore, as the construct is proposed, a RLP is linked to religious beliefs but not exclusively so. In other words, the fact that some agnostics, for example, are not able to reconcile with adverse events in life may be linked to their nonbelief.
Farran, Herth, and Popovich (1995) speak of hope in a way similar to a RLP. They note that it appears those who remain hopeful in hopeless situations have developed the "basic roots of hope." The hypothesis proposed for the present study is that these roots of hope are actually religion, spirituality, and a RLP. A vague sense of what these roots are does not adequately explain how a person can transcend the hopelessness of a certain situation, such as Alzheimer's disease or other traumatic life events. Rather, the hypothesis here is that the roots of hope lie in a firm belief that God or a supreme being has a plan and that there is purpose and meaning for what otherwise seems meaningless.
Most of the research in this area has examined the relationships among religion and outcomes such as life satisfaction or health, rather than the relationships among spirituality and health outcomes or spirituality and coping. However, personal spiritual beliefs and practices, those that go beyond doctrine and sanctioned observances and connect one to a supreme being, may be just as or even more important than communal worship (religion) to AD caregivers and persons dealing with other adverse life events. Therefore, the aims of this study were focused on identifying both spiritual and religious elements that persons rely on during stressful life experiences.
Twenty informants, 10 AD caregivers and 10 noncaregivers, were interviewed about their life experiences and spiritual and religious beliefs. Research participants were identified through the Caregiving Core of the University Alzheimer Center at University Hospitals of Cleveland and Case Western Reserve University, a National Institute on Aging Alzheimer's Disease Research Center. The Caregiving Core is comprised of persons who are either the primary care providers for family members with dementia or noncaregivers who serve as a comparison group.
The potential informant pool was drawn from self-identified Catholic and Protestant respondents in the Caregiving Core. The caregivers were telephoned first from a list of potential informants that was arranged in the order that informants entered the Caregiving Core. Caregivers who agreed to be interviewed were matched with noncaregivers. That is, both groups identified with a Christian religion and were evenly matched on gender, age, and marital status (see Table 1 for a description of the informants). In the caregiver group, there were two Catholic males, three Protestant males, three Catholic females, and two Protestant females. In the noncaregiving group, there were three Catholic males, two Protestant males, two Catholic females, and three Protestant females. Three caregivers and three noncaregivers declined to be interviewed. Two of those who declined were Protestant and four were Catholic.
Table 1 Profile of informants (N= 20) Caregivers Noncaregivers Mean age 74.7 74.30 Gender 5 males 5 males 5 females 5 females Religion 5 Catholic 5 Catholic 5 Protestant(a) 5 Protestant(b) (a) American Baptist, Lutheran, Methodist, Nazarene. (b) Episcopalian, Congregational, Methodist, Presbyterian, United Church of Christ.
Selecting a group of people who at least identified with a particular Christian religion offered a starting point upon which to build further lines of inquiry, including non-Christian religions and persons who identify with no particular faith tradition. By focusing first on persons of the Christian faith, certain common beliefs could be assured to allow meaningful comparisons among the informants.
Religious and spiritual beliefs and practices and a RLP were assessed with the Life Reflection Interview (LRI). The LRI was designed to avoid steering responses in any particular direction. Sample questions include: What words come to mind when I say religion? What words come to mind when I say spirituality? Reflecting on your life, were there times when your religious beliefs were especially important to you? Again reflecting on your life, were there times when you were more spirituality minded? Can you describe those times for me?
Once an informant agreed to participate, an interview was scheduled at the time and place most convenient to the informant. Most interviews lasted 45 min to an hour. Five lasted about 30 minutes and two went for nearly 2 hours. The tape recordings of the interviews were transcribed and reviewed for accuracy.
Past research experience (Stuckey, 1998) has shown the importance of moving from the general to the specific when referring to a "higher power." At first, a general approach is used, allowing informants to provide cues as to who or what they believe this "higher power" to be, including beliefs that would be considered nontraditional. Typically, research participants in this age group and geographic region are likely praying to and believing in the Judeo-Christian God. All of the informants were comfortable with using the word "God" as a specific reference to a "higher power."
7. Qualitative thematic approach
Data analysis followed a qualitative thematic design as outlined by Luborsky (1994), or what Weiss (1994) terms an "issue-focused" approach. The main reason for selecting a qualitative approach centered on an intent to elicit personal views on the nature of religion and spirituality without leading the informants in any particular direction. A qualitative approach facilitates the ability of informants to freely express their views.
Luborsky notes, however, that in order for a qualitative thematic approach to work, definitions of terms must be clear at the outset. The word "theme" itself has become a part of the lexicon of the general population and has thereby become somewhat ambiguous. Luborsky's definition for themes (generalized statements about beliefs, attitudes, values, and sentiments) was used here. Themes are the domain of the respondent. They are generated by the responses provided by the informants. Patterns, on the other hand, are what Luborsky defines as the arrangement of findings from the researcher's point of view. The analysis approach looked for emergent themes and then grouped them into common patterns.
Five patterns were identified from the themes common to the interviews with informants: attributes of God and faith; spiritual growth; values; definitions and details; and caregiving and other significant life events. The themes and patterns are listed in Table 2. In addition, the respective numbers of informants grouped into each pattern are provided, as well as the numbers of informants expressing each of the themes. Not included in the table are themes identified from only one informant. After a review of the patterns of themes, this section concludes with a brief comparison of the two groups and a review of data pertinent to the RLP construct.
Table 2 Themes and patterns of responses (N = 20) Caregivers Noncaregivers (n = 1) (n = 10) Attributes of God and faith 9 10 God has a plan, i.e., for everything there is a reason 5 2 Somebody who loves, listens, cares, protects 2 4 Life without religion is meaningless; has to be something there 2 3 Bad things happen but it is not God's fault; that's life 4 6 Question or blame God 1 2 Heaven offers hope for the future 3 3 God in nature 0 3 Spiritual growth 8 10 Spiritual maturity 4 4 Prayer for coping and for comfort 9 6 Spiritual mentor; upbringing 2 6 Foundation for children 3 5 Values 7 7 Humor 3 4 Optimism 3 3 Self-reliance 2 3 Moral living 1 2 Volunteerism; helping others 1 2 Definitions and details 3 6 Definitions of religion and spirituality are similar or unimportant 2 4 Details of life do not matter 2 2 Caregiving and other significant life events 10 10 Religion or spirituality have played a supportive role 10 10 Caregiving is not an obligation -- it is a reflection of spirituality 3 Girls of caregiving 5
8.1. Attributes of God and faith
The most common pattern consisted of themes that pertain to attributes or qualities of God and one's faith. The most frequent theme in this pattern of responses for caregivers was the belief that God had a plan for their lives; that is, things happen for a reason regardless of whether or not the reason was evident. Five caregivers and two noncaregivers mentioned that God had a plan for them and was in control of their lives.
Embedded in the idea that God has a plan is the notion that "God loves me and is watching out for me," attributes mentioned by two caregivers and four noncaregivers. Events in life do not happen at random; God is both provider and protector, as reflected in the comments from the following caregiver:
I really feel that God has been watching over me. Not that I am special or anything, but it seems like whenever I had a real problem, he pulls me through somehow or leads me in the right direction.
Even amidst turmoil, religion is an anchor that holds a person against the tide of hopelessness. Two caregivers and three noncaregivers stressed that without religion, life had no meaning.
I guess I believe somewhat fatalistically that things are going to happen and that they are planned to happen that way. To think (like) people who don't have a faith or don't believe that there's something beyond this life would be a devastating thought for me.
None of the informants expressed anger at God for difficult trials experienced in their lives. The most common theme among noncaregiving informants (n = 6), which was also expressed by four caregivers, was that God was not responsible for any unfortunate circumstances. They all felt similarly to the words of this noncaregiver who commented on the paradox of a benevolent God in a world of suffering:
It's very easy for me to see God's work in the beauty of nature, when you are out in the sky and the sun and the snow and whatever. That's no problem. But it's very difficult to see it when I am driving through a slum, or I'm hearing about hundreds of children starving to death in Africa or something. But I also truly believe ... the world is the world and human beings are human beings -- good and bad choices. And I think God's role is to just be there with us through these times of trouble.
This informant also referred to the beauty of nature, which was a theme identifiable in three of the noncaregiver interviews. They found evidence of God in the world around them. They reported believing that this world could not have happened by chance or evolution alone, and had to be the work of some sort of Divine Creator.
While not angry with God, per se, one of the caregivers and two noncaregivers indicated that they had questioned God on occasion, another in this pattern of themes. The one caregiver was straggling with the recent death of his adult daughter.
The only thing I blame God for is taking my daughter. I don't really blame him. She was in a lot of pain and suffering. I don't know why she died when she did, but she did. I just can't understand that if a God is there and he controls things like that, why maybe he wouldn't have taken my wife (who has Alzheimer's).
Hope is a thread among six informants (three caregivers, three noncaregivers) regarding how they viewed their respective futures, particularly hope in an afterlife that will be a reunion with those family members and friends who have already died. One noncaregiver, whose son had taken his own life several years ago, referred to the hope of his son being in a better place:
I'd have never made it without that feeling that he's being taken care of. We can't understand it, but maybe someday we will ... I just know he's in good hands, no question about it in my mind. I don't have to pray for that; it's a given. I pray for a better understanding of why it happened. There's just no doubt that he's in good hands and someday we will be, too.
Hope was also expressed in ways that suggest believing that God cares is a comfort. Simply believing that God takes interest in the personal suffering provided hope to some caregivers, in particular, that they were not alone. One informant noted that religion was a hope to draw on as the need arises during one's life.
8.2. Spiritual growth
These informants were more likely to turn to their religious and spiritual beliefs and practices during negative life events. Nearly all of the informants commented that it was when they were in most need of support that they were most likely to turn to God or to their spiritual support networks. Some acknowledged a certain amount of guilt associated with turning to their faith only during times of stress, but most indicated that they felt the presence of God in both the good and bad times in their lives.
Deane (1999) has remarked that it is perhaps only during times of trial, such as caregiving, that real spiritual growth can occur. When asked whether or not they believed in God, most of the informants automatically responded, "oh, yes," "sure," and "of course." However, some of the informants clearly had developed depth to their religious and spiritual beliefs and practices. They answered the question "do you believe in God?" with detailed, thoughtful answers. A theme of "spiritual maturity" emerged from eight of the interviews (four caregivers, four noncaregivers). With advancing age, these informants had moved beyond a self-serving reason for practicing a particular faith (e.g., to go to heaven, to obtain blessings) to a desire to have a personal connection with the divine.
Part of spiritual growth was reflected in the use of prayer. Prayer was an important aspect of their coping strategies, for both caregivers and noncaregivers. In fact, it was the second most common theme among the informants (nine caregivers, six noncaregivers). However, no one spoke about praying for a "cure" or praying for a specific outcome. One noncaregiver, who had actually gone through a difficult caregiving experience with her mother several years ago, remarked on how she viewed prayer:
I find I don't pray for somebody to get a job or somebody to get well, but rather that they feel God's presence in whatever they are experiencing ... if you feel God's presence in your life, you can't help but have some peace.
Informants were asked if any one person or persons served as a spiritual or religious mentor to them. Eight informants (two caregivers, six noncaregivers) identified either a person or persons who had a significant impact on their spiritual growth. Often a parent, these mentors served as role models throughout the lives of the informants as they dealt with difficult situations in life. One caregiver frequently invoked "words of wisdom" her now deceased mother had shared with her as a child.
Five noncaregivers and three caregivers reinforced the importance of sending children to church. They believed that how one raises a child lays the foundation for future religious and spiritual beliefs and practices. Interestingly, in several of the homes, the children of the informants who had gone to church were no longer practicing a religion. The informants acknowledged that their children were now adults and had to make their own decisions. They simply wanted to make sure that both their children and grandchildren had a foundation of faith when they were young.
Both caregivers (n = 3) and noncaregivers (n = 4) alike noted the value of humor. When discussing the power and purpose of prayer, one of the informants related the following story about a time when he was traveling with his grandson:
If you can't find something say a 'Hail Mary' and you'll find it. And he (grandson) wanted to mail a postcard. 'Where's the box?' he asked. I said, 'You know what to do. I taught you the prayer now say it.' (Soon he saw a mailbox) and he said, 'It works!' And I said, 'Sometimes it works!' When we were looking for a restaurant or a bed and breakfast or something, I'd say, 'We've got to pray.' And then it would work -- it worked most of the time. I had to have a good answer in case it didn't work! Oh, I did: there's a better one up the road!
Whether it be caring for a family member with Alzheimer's, holding vigil for a sibling fighting overseas, or grieving over the loss of a child, the value of humor permeated the interviews. While not an aspect of religion or spirituality, per se, it does play an important complementary role in that humor can help make burdens seem not so overwhelming.
Similarly, another value that emerged from six of the informants (three caregivers, three noncaregivers) was the importance of a positive outlook on life. They reported that no matter what hand is dealt in life, the optimist sees the bright side, even if it is a lousy hand. This approach to living facilitated their ability to cope with situations that could easily bring someone with a more negative outlook to the brink of depression.
A third value common in both caregiver and noncaregiver interviews (n = 5) was self-reliance. In the words of one caregiver: "People have to take care of themselves." There was no overt expectation that God would make life easier for them simply because they prayed a certain way or because they followed a particular religion. Informants expressed the idea that no matter what they had to deal with, God would be a support for them and their religious and spiritual beliefs and practices would buttress that support.
Informants spoke that religion, in particular, provided a "road map" for life. Three noted that most religions share a common value of moral living. Also identified by three of the informants was a need to be of service to others. They stressed the importance of volunteering and helping others and linked the motivation for these activities to their religious beliefs.
8.4. Definitions and details
At this point, it bears mentioning that the distinction between religion and spirituality was not a major issue for any of these informants. Six of them viewed the definitions for the terms as either interchangeable or unimportant. However, for those who did draw a distinction, they held views that are compatible with the working definitions presented at the outset of this article. In other words, religion encompasses the communal aspect of worship, and spirituality pertains to a personal relationship with something or someone greater than oneself.
Mentioned by four informants in particular, but implied from the answers of others, was the notion that the answers to the details in life, the theological or philosophical dilemmas that scholars contemplate on a regular basis, also were not important. Informants made comments similar to this noncaregiver about the existence of God: "Yes, there is a God; no question. I don't care about the specifics. God is real."
One of the caregivers relayed a story about how she had drawn comfort from an owl that was outside her window late one night. Her father had recently died, and the last time she had seen such an owl was on a trip with her father. To the question, "Did God send this owl as a comfort or was it a chance occurrence?" she answered "What's the difference?" What mattered to her is that she had found comfort from the presence of the owl. She did not care about the details concerning what brought the owl to her window.
In a similar vein of "the details do not matter," a noncaregiver informant commented on the specifics of what it would be like to die, a growing topic of discussion among several of these older informants:
I am thoroughly convinced that God has something in mind for me. Jesus has told us where and how, but I have no description of it. All I know is that something will be done. And I believe that simply because I can't believe that God, having created this tremendous environment that we are in, is going to waste any of it. He may waste my body, but what he does with me, I don't know. But I know there is a promise that something will happen. So I find myself being less concerned about it only because I am confident that there is something there ... The Bible and Jesus' words tell me I don't have to worry about it.
8. 5. Caregiving and other significant life events
All 20 of the informants had relied on their religious or spiritual beliefs and practices when coping with significant and stressful life events. Even though these informants were drawn from a population of people who identified as being either Catholic or Protestant, no additional religious or spiritual data (e.g., frequency of attendance at religious services, self-ratings of religiosity) were known about these informants before they were interviewed. Of course, it would have been useful to have been able to include data from the six informants who declined to be interviewed. Nevertheless, the fact that all 20 acknowledged, with varying degrees of importance, supportive roles of their religious and spiritual beliefs and practices when coping with adverse life events is significant.
With regard to the specific stress of caring for a spouse with Alzheimer's disease, none of the caregivers spoke of their situations as burdensome. Everyone identified a supportive role that their religious or spiritual beliefs and practices had afforded them during their caregiving experiences. As mentioned, nine of them noted the important role of prayer in their lives and all commented on how they felt the support of their faith.
Three of the caregivers explained their motivation for caring for their spouses. Caregiving could be compared to a life's mission -- almost like a reflection of their spirituality. To deny this mission was to deny God. They indicated almost a resentment of anyone who thought they were "heroes" or "saints" for being caregivers.
People tell me I'm so wonderful -- I don't think it's so wonderful. It's just something I promised to do 65 years ago. I feel very guilty when people tell me that I am a saint. I'm not a saint. I am fulfilling a commitment.
Five caregivers spoke of gifts that had been identified either because of the experience of living with AD or because of things that had happened on their lives. For example, one of the informants commented on the birth of their first granddaughter as being a gift amidst this disease. Another caregiver explained why she felt so fortunate:
I feel very blessed ... he has been what any woman would want as a husband. He's kind; he's loving, considerate, gentle. And I just feel so blessed ... We have two great kids. What else could you want in life? ... I think that's why I have so much faith ... There must be a reason why he has lived as long as he has in the nursing home to give me extra time with him.
8.6. Comparisons between caregivers and noncaregivers
Major differences in the themes expressed by the two groups of informants did not emerge. There were two themes expressed more by caregivers than by noncaregivers: "God has a plan" and "prayer for coping and for comfort." Given the realities of a caregiving situation, it is expected that caregivers might be spending more time in prayer and thinking that God had a plan since it is difficult to make sense out of Alzheimer's disease from strictly a human point of view.
On the whole, however, both caregivers and noncaregivers identified an important role that their religious or spiritual beliefs afforded them when coping with difficult challenges in life. Some had developed more of a "spiritual maturity" than others, but this distinction did not fall along caregiver/noncaregiver lines.
8.7. The RLP
When selecting which informants could be categorized as having achieved a RLP, the interviews were reviewed for comments that indicated either a disappointment with God or feelings of abandonment by one's religious or spiritual faith. There were two caregivers, and perhaps one noncaregiver, who, while not overtly hostile toward God or toward religion, gave certain indications of resentment or disappointment either with persons representing the church or with God. For one informant, a deep-seeded bitterness toward the church resulted when her friend, an unwed mother, was killed along with her child in an automobile accident. The priest permitted the funeral for the friend's daughter to take place in the church, but not for the friend. The informant has not been to church since (over 30 years) and spoke quite harshly about all "organized" religion. On the other hand, she said she bears no bitterness toward God for the actions of the priest.
The two caregivers who showed signs of not attaining a RLP were clearly struggling with their current situations. One cried throughout much of the interview and harbored resentment against several friends and family members who had disappointed her. The other caregiver openly questioned God why his wife was still living in her current state. Yet, he still relied on his religious beliefs for support.
The purpose of this study was to learn more about how persons of faith, when confronted with traumatic life events, are able to transcend crisis and maintain a sense of hope and purpose rather than falling into despair. For both groups of informants, religion and spirituality were, and continue to be, important sources of strength and support over the life course.
Certain limitations of this study bear mentioning, which center on the homogeneity of the informant pool. Although the sample selection was by design, it does prevent generalizing the findings to a diverse spectrum of religions or spiritual beliefs and practices. Important next steps are not only to interview a larger number of informants, but also to include a more heterogeneous sample, including those of non-Christian religions and those who identify with no religion.
Nevertheless, the importance of the findings, which support previous research in this area, remains undiminished. Like Pargament's (1990, 1998) works, these data lend support for integrating religion and spirituality into the coping paradigm. All of these informants spoke of how they relied on their religious and spiritual beliefs and practices, particularly prayer, as coping resources throughout their lives. However, as identified by Reed (1994), most of these informants were using their religious beliefs and practices as coping resources throughout their lives, not uniquely in any one event. Even though they commented that they were more likely to draw on their religious or spiritual beliefs during times of stress, they emphasized the importance of going to the well of religious or spiritual support not only during crisis, but also when feeling grateful toward God. Similar to the work of Farran et al. (1991), many of the caregivers had relied on their religious and spiritual beliefs to transcend sadness and to find meaning and girls in their caregiving situations. And finally, like Stolley et al. (1999), all but one of the caregivers and three fourths of all the informants (n = 15), relied on prayer as a way to cope with negative life events.
Three factors not commonly cited in past works in this area, which emerged as being potential explanations for how religion and spirituality are transformed into a RLP, are optimism, self-reliance, and a spiritual mentor. Part of the positive impact on well-being nurtured by religious or spiritual beliefs could be the influence of an optimistic outlook on life. Two people could be going through the same circumstances, but one handles it better because her/his religious or spiritual belief system encourages an optimistic frame of mind. Also evident in some of the interviews was the importance of self-reliance. If individuals do not expect divine intervention to ameliorate situations in life and rather feel it is up to themselves to find solutions to problems, then there is less opportunity for disappointment or resentment if such intervention does not occur. A third factor clearly identified by several of the informants, is the importance of a spiritual mentor or role model, someone to emulate during times of crises and to help bridge the gaps between moments of doubt or anger towards God.
A concluding implication is that all persons have the capacity to develop religious and spiritual dimensions and attention should be given to the degree to which that capacity has developed in order to fully understand human behavior. One possible explanation, albeit not the only one, for research that has suggested a positive connection between religion and health (e.g., the work of Koenig, Larson, Levin, and others) is that persons who have developed this capacity to a greater degree may realize more positive health outcomes. Certainly, many nonbelievers enjoy positive well-being outcomes. However, the motivation and rationale for this study was to look for possible explanations for why religion and spirituality have a positive impact on well-being among those who do believe in God.
A RLP is one possible explaining factor for the link between religion/spirituality and well-being, but these data do not show a clear impact of a RLP. The path leading to a better understanding of the linkages among religion, spirituality, and overall well-being may begin with a better understanding of the linkages among individuals and their religious and spiritual perspectives. However, these data neither affirm nor negate the value of a RLP. Further exploration is necessary in order to better define qualities associated with a RLP and the potential utility of the construct in explaining the connections among religion, spirituality, and well-being.
Having a RLP does not mean that one does not doubt or feel anger towards God or towards one's religious or spiritual beliefs during times of overwhelming distress. Nor does it mean that persons cannot live and prosper without a RLP or without attention to their religious or spiritual dimension. Having a RLP simply means that one has been able to transcend the immediacy of stressful life events while maintaining a connection to religious or spiritual sources of support, thereby increasing the likelihood of improved overall well-being.
The direct impact of a RLP on health and well-being was not examined in the present study because these outcome data were not available. The RLP construct should now be included in a study where those categorized as having a RLP are compared on quantifiable well-being outcome measures (e.g., physical health, depression, life satisfaction) to those without a RLP. Given the highly personal and individual nature of religious and spiritual beliefs, a strictly quantitative methodology does not provide a way to readily tap into the distinctiveness of each individual. However, without some way to quantify outcomes such as mental health or physical health in an objective manner, there is no standard way to measure, and subsequently better understand, the impact of religion and spirituality on overall well-being.
Perhaps the "why" and "how" questions of the impact of religion and spirituality on the human condition transcend complete empirical validation. However, regardless of one's personal views about religion or spirituality, the need for religious and spiritual support may be woven into the fabric of the human condition no less so than the need for, among others, physical, mental, and social support. Their role as coping resources during stressful life events should not be ignored. Religion and spirituality can provide meaning when life becomes meaningless and offer many a "blessed assurance" for a future absent of suffering amidst current deep and profound loss.
Support provided by NIA-ADRC Grant AG08012. The insightful and helpful comments of Marcia M. Neundorfer, PhD, RN, are acknowledged with deep gratitude. The author also acknowledges two anonymous reviewers for their valuable critiques on an earlier version of the manuscript.
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Jon C. Stuckey(*) University Alzheimer Center (affiliated with University Hospitals of Cleveland and Case Western Reserve University,) 12200 Fairhill Road, Cleveland, OH 44120-1013, USA
(*) Tel.: +1-216-844-6312; fax: +1-216-844-6466.
E-mail address: firstname.lastname@example.org (J.C. Stuckey)
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|Author:||Stuckey, Jon C.|
|Publication:||Journal of Aging Studies|
|Article Type:||Statistical Data Included|
|Date:||Mar 1, 2001|
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