A literature review by Linda Beuscher PhD, GNP, BCCornelia Beck PhD, RN, FAAN

Abstract

Aims. This paper presents a literature review focusing on the use of spirituality in coping by older persons with early‐stage Alzheimer’s disease from their perspectives. The purpose of this literature review is to examine the existing body of knowledge about spirituality in coping with Alzheimer’s disease and to apply a spiritual framework of coping in organizing the literature to identify themes and gaps in knowledge.

Background. Despite the abundance of Alzheimer’s disease research, little is known about how older persons with this devastating disease cope with the consequential losses. Maintaining a sense of normalcy and preserving self‐worth are coping strategies reported by older persons with early‐stage Alzheimer’s disease. As spirituality is an effective coping resource for older persons with numerous psychological and personal losses in their lives, it may be an important coping resource for person with Alzheimer’s disease.

Method. A literature search was conducted to find research published between 1990–2006 aimed at understanding spirituality in coping with early‐stage Alzheimer’s disease.

Conclusions. Six research studies were reviewed. Findings suggest that persons with early‐stage Alzheimer’s disease draw from their spirituality and faith to find meaning and courage in facing the challenges of cognitive losses. Furthermore, they are able to provide rich information about their spirituality and the psychosocial aspects of living with Alzheimer’s disease. Limited empirical knowledge compels the need for future research to explore how spirituality is utilized in coping with early‐stage Alzheimer’s disease.

Relevance to clinical practice. Enhancing persons’ abilities to cope effectively with their diseases is an important goal of nursing care. Understanding how older persons with Alzheimer’s disease cope with their memory loss is critical to the development of evidence‐based interventions to minimize the stress of living with this disease.

Introduction

Alzheimer’s disease (AD), a devastating neurological disorder, afflicts approximately 4·5 million older people in the United States (United States Census Bureau 2000). The greatest known risk factor for AD is increasing age. The prevalence of AD doubles every five years after the age of 65, escalating to nearly 50% for those over 85 years (Alzheimer’s Association 2004). This increased risk, coupled with the dramatic increase of the ageing population and life expectancy, results in an alarming projection of 13·2 million Americans who will suffer from AD by the year 2050 (Hebert et al. 2003, National Center for Health Statistics 2005).

Progressive losses of cognitive functions such as memory, attention, language, problem solving and reasoning are characteristics of AD (Sloane et al. 2002). These losses impede communication, hinder relations with others and interfere with a person’s ability to conduct daily activities, resulting in loss of autonomy, self‐esteem, sense of mastery and control (Lensyn 2004). Consequently, these losses can lead to despair, hopelessness, loneliness and depression, negatively affecting quality of life (Ross et al. 1998, Chen et al. 1999, Touhy 2001). As there is no cure for AD, helping persons cope with their cognitive losses is a goal of treatment (Jonas‐Simpson & Mitchell 2005).

Cognitive impairment progresses at various rates for different people. As cognition deteriorates, it affects the person’s ability to adapt to changes. In early‐stage AD, people are aware of their failing cognitive abilities (Phinney et al. 2002, Downs 2005). It is also the time when people may be least likely to seek support, but need it most (Cohen et al. 1984, Keady & Nolan 1995a). Therefore, addressing a person’s adaptive abilities and coping needs is pivotal in the early stages of AD. Cohen et al. (1984) have identified phases of change, reflecting cognitive status and psychological reactions. They posit that in early‐stage AD, patterns of coping are established. Thus, it is important to foster positive coping strategies and resources, which may include spirituality at this stage. While AD creates a disconnection, spirituality may provide a connection for a person with AD.

Understanding the adaptive abilities of persons with early‐stage AD is an emerging research topic. Behavioural and emotional factors of coping with AD, from the subjective experience, have been the focus of several studies. Interviews with people who have early‐stage dementia disclosed that people use their behaviour to try to cover up their difficulties and maintain a sense of normalcy (Keady & Nolan 1995a, Keady 1996). Downplaying the losses and preserving their self‐worth are also reported findings in Clare’s (2002) qualitative study.

Research findings support that older persons use spirituality in coping with many stresses in their life, such as disease, illness and mortality (Pargament 1997, Koenig et al. 2001). Furthermore, studies generally reveal a statistically significant association of spirituality and coping and spirituality and improved emotional well‐being and self‐esteem (Van Ness & Larson 2002, Bickerstaff et al. 2003, Bosworth et al. 2003, Laubmeier et al. 2004). A person’s own spirituality may provide a valuable coping resource. However, scant information exists about persons with AD using spirituality to cope (Beck 2001).

Enhancing persons’ abilities to cope effectively with this life‐changing disease is an important nursing care goal. Improved self‐esteem and well‐being are positive outcomes that nurses’ care provides when respecting, valuing and supporting the belief practices of their patients (Koenig 2002, O’Brien 2003), including those belief practices that are not based on the existence of a deity, such as atheism or agnosticism.

Aims of Literature Review

This review aims to (i) analyse research‐based literature directed towards spirituality in coping with early‐stage AD from the afflicted persons’ perspectives and (ii) apply a spiritual framework of coping in organizing the research literature to identify themes and gaps in knowledge. Discussion of findings examines application of the theoretical framework and limitations of the review. The paper concludes with suggestions for future research and implications for clinical nursing practice.

Definition of Terms

The nursing profession has explored the definition of spirituality through several concept analyses (Burkhardt 1989, Emblen 1992, Haase et al. 1992, Goddard 1995, Dyson et al. 1997, Merviglia 1999, Newlin et al. 2002, Tanyi 2002, Henery 2003, Delgado 2005, Miner‐Williams 2006). A review of this literature reveals several definitions of spirituality, such as integrative energy, transcendence, connectedness, belief system and meaning of life. Lack of consensus of a definition may be due to its abstractness, its multi‐dimensionality and frequent confusion with religion. Baldacchino and Draper (2001) also noted the lack of consensus in their nursing literature review of spiritual coping strategies.

The following definitions are provided to guide the synthesis of this literature review:

• Spirituality is an individual’s foundational belief developed through the lifespan that influences the personal interpretation of morals, faith, love, trust, suffering, and God or a higher power. It guides a person’s view of the world and self, providing structure, purpose, and meaning to everyday activities (Hicks 1999, Bickerstaff et al. 2003, McSherry 2006).
• Religion is an organized system of beliefs, practices, and rituals that facilitates expressions of a person’s spirituality and is defined within the context of a culture (Koenig et al. 2001).
• Coping is the use of behavioral or cognitive efforts to preserve or transform values of importance in the face of stressful life events (Lazarus & Folkman 1984).

Spiritual Framework of Coping

Gall et al. (2005) introduced the spiritual framework of coping as an adaptation of the transactional model of stress and coping (Lazarus & Folkman 1984, Folkman & Greer 2000).

This framework explains how spirituality can have a major influence on a person’s interpretation and reaction to life events (Gall et al. 2005). The structural components are stressors, spiritual appraisal, person factors, spiritual coping behavior, spiritual connections and meaning-making (Fig. 1).

Gall et al. (2005) introduced the spiritual framework of coping as an adaptation of the transactional model of stress and coping (Lazarus & Folkman 1984, Folkman & Greer 2000).

Figure 1. This framework explains how spirituality can have a major influence on a person’s interpretation and reaction to life events (Gall et al. 2005). The structural components are stressors, spiritual appraisal, person factors, spiritual coping behavior, spiritual connections and meaning-making (Fig. 1).

Appraisal and coping are the two continuous, dynamic processes of this framework. Appraisal is the awareness of a stressor or change and the determination if it is a challenge, threat, harm, or loss. The appraisal components in this framework are the spiritual appraisal and meaning‐making. Spiritual appraisal is a determination of a stressor as a challenge, threat, harm, or loss; and its causal attributes. It is the means for understanding the significance of a life event. It offers an explanation to the frequently asked question, ‘Why did this happen to me?’ Meaning‐making is the reappraisal of the significance of the stressor or event after trying to cope with that stressor.

Coping is the use of behavioural or cognitive efforts to preserve or transform values of importance in the face of stressful life events (Lazarus & Folkman 1984). The three components of the coping process in this framework are person factors, spiritual coping and spiritual connections. Person factors are the beliefs and problem‐solving styles that direct a person’s interpretation and reaction to life events (Lazarus & Folkman 1984). Beliefs often enmesh with religious doctrine, orientation and religious communities that provide the social norms or social support. Spiritual coping is the specific behaviour used to respond to the stressor. These behaviours are categorised as organizational, such as church attendance; private, such as prayer or sacred scripture study; or non‐traditional, such as meditation, contemplation and imagery. Spiritual connections to nature can be a source for coping with stress, providing a sense of inner strength, peace and tranquility. Other resources for coping are connections to other support individuals and a personal relationship to a transcendent God or a higher power (Gall et al. 2005).

Incorporating the multidimensional concept of spirituality, this framework offers a broader insight into psychosocial adjustment than models of religious coping, which embrace the Judeo‐Christian perspective of religion (Stolley et al. 1999). It has potential for application to various stressors faced by persons of different faiths and cultures.

Methods

Search Strategy

This review of published research‐based literature searched the following databases: Cumulative Index to Nursing and Allied Health Literature, MEDLINE, PsychInfo, Dissertation Abstracts online and Cochrane Library Database. Additionally, internet references included Google scholar search engine and Alzheimer’s Association webpage. Consultation with experts in dementia research provided the suggestion of broadening the search for references in books by experts on aging, spirituality and religion. Reference lists in articles were also reviewed. Keywords included spirituality, religion, coping, early‐stage AD, elderly and dementia.

Inclusion and Exclusion Criteria

The inclusion criteria and rationale are described in Table 1. Although spiritual coping appeared in research literature in the 1970s, the subject of spirituality and coping with AD first appeared in the literature in 1990. The time span from 1990–2006 was selected to allow observation of any trend that may have influenced Alzheimer’s research. An important trend is a subtle shift of researchers’ attention from caregivers to persons with AD (Keady 1996, Downs 1997). This may indicate researchers acknowledging the value of the perspectives of persons with AD in dementia research (Downs 1997).

Table 1. Inclusion criteria

AD, Alzheimer’s disease.

Synthesis process

The synthesis process began with reading eight books and 79 citation abstracts. Only six research studies met the inclusion criteria. Data from these studies were determined as either qualitative or quantitative (Jensen & Allen 1994). A coding sheet was developed with the following categories: discipline of authors, method, sampling, measured variables and results. After extracting this information from each article, the findings of each study were compared for any discrepancies or similarities of content. Finally, those findings were examined for a possible fit to the spirituality framework of coping concepts (Gall et al. 2005) and gaps in the literature were noted.

Sample

This literature search yielded six research studies. Four used qualitative methods and two used mixed methods, triangulating qualitative and quantitative data (Creswell 1998). Authors included social workers, nurses, psychiatrists and a multidisciplinary team (Table 2). The total sample of 90 participants across the six studies consisted of 60% females and 40% males (Table 3). Participants were predominately Caucasian (67%) with 12% African American, 3% Asian and 4% Hispanic. Religious representation included 32% Catholic, 31% Protestant, 15% Jewish, 1% Buddhist, 3% non‐denominational Christians and 3% with no religion affiliation. Demographic figures are based on information provided from the studies and do not include missing data of race and religion (Fink 1998). Most of these studies had similar representation of Catholic, Protestant and Jewish faith. The non‐traditional religions and non‐religions represented in Snyder’s (2003) study may reflect the general population in San Diego where Snyder conducted her study.

Table 2. Summary of literature reviewed

Empty cell indicates missing information.

AD, Alzheimer’s disease; GDS, Global Deterioration Scale; HADS, Hospital Anxiety & Depression Scale; IADL, Instrumental Activities of Daily Living; MMSE, Mini Mental State Exam; PSMS, Physical Self Maintenance Scale; QLI, Quality of Life Index; QOL, Quality of Life; SBI, Systems Belief Inventory; and SQLS, Single Item Quality of Life Scale.

Table 3. Description of study samples

Empty cell indicates missing information.

F, female; M, male; C, Caucasian; AA, African‐American; H, Hispanic.

Purposive sampling was used in three studies to recruit community dwelling elders who attended daycare facilities (Matano 2000, Stuckey et al. 2002, Katsuno 2003). Bahro et al. (1995) and Phinney (1998) implemented convenience sampling from an inpatient mental health facility and university affiliated AD centre, respectively. Five out of the six studies used the Mini‐Mental State Exam to screen for cognitive status (Folstein et al. 1975). Phinney (1998) included the Global Deterioration Scale (Reisberg et al. 1988) to determine level of cognitive impairment. Bahro et al. (1995) utilized two psychological tests, consistent with the researchers’ discipline: Wechsler memory scale, general memory index (WGMI) (Wechsler 1987) and the Mattis Dementia Scale (Mattis 1973). All these measures have established reliability and validity and have been utilized in dementia research (Mattis 1973, Folstein et al. 1975, Wechsler 1987, Reisberg et al. 1988).

Summary of studies reviewed

Impact of Alzheimer’s disease

Two themes were identified as stressors of AD, disconnection from self and others. Because of cognitive impairment, persons lost their independence and their traditional role in the family, disrupting their self‐identity (Matano 2000). Doubt, loss of self‐confidence in being able to make one’s own decisions and feelings of uselessness were consistently reported in these studies. Furthermore, Katsuno (2003) noted feelings of vulnerability because AD was beyond a person’s control. Only Phinney’s (1998) study reported a fluctuating awareness of memory loss. Of equal importance is the disconnection from others and feelings of loneliness resulting from loss of ability to communicate (Bahro et al. 1995, Phinney 1998). These findings are consistent with current information about the effects of cognitive impairment from AD (Bourgeois 2002, Clare 2004).

Reactions to Alzheimer’s Disease

Persons with early‐stage AD utilized spiritual appraisals to determine a reason for their disease. One participant in Bahro’s et al. (1995) study and one in Stuckey’s et al. (2002) study blamed themselves for not living according to God’s teachings. Both described an attribute of God as being judgmental. Some participants in studies by Katsuno (2003) and Matano (2000) doubted God’s existence, attributing God as testing them. For those who saw God as loving and helpful, their responses were positive. They did not blame God for the disease, but saw the disease as an opportunity to rely on God (Snyder 2003). Phinney (1998) did not discuss causal appraisal in her study.

Application of the Spiritual Framework of Coping

The spiritual framework of coping (Gall et al. 2005) guided the analysis of the literature reviewed. Its components offered a comprehensive fit with the qualitative data. Additionally, it provided insight into spirituality in coping with AD from persons of various religious denominations, including an eastern religious belief and non‐religious belief.

As noted earlier in this paper, spirituality has numerous conceptual definitions. In these studies, participants interpreted spirituality to mean their religion, described as faith in God by those with traditional Judeo‐Christian beliefs. Others identified pragmatism and unity with nature as religions (Snyder 2003). These beliefs correspond to the religious denominations and orientations found in the spiritual framework. The studies did not provide any information that corresponded to religious doctrine.

Problem‐solving styles in this literature reflected the relationship with God as the provider and protector. Snyder (2003) and Katsuno (2003) describe a surrender style of coping as an active decision to hand control of a problem to God, trusting God will guide and protect (Pargament 1997, Gall et al. 2005). Stuckey et al. (2002) reported similar findings, exemplified by a participant’s singing an old hymn titled ‘Take your burdens to the Lord and leave them there’. Hope in the afterlife was the second most frequently reported sub theme explored by Snyder (2003). However Stuckey’s et al. (2002) report concluded that persons with AD did not focus on the future. Instead, they centred on the present hope, living day by day.

Consistent with the spiritual framework, findings from this review report spiritual connections including nature, others and the transcendent relationship with God. Three persons with AD reported that spiritual connections to nature, such as watching sunsets, gardening and being in the mountains brought them a feeling of peace (Phinney 1998, Stuckey et al. 2002). Some reported that an appreciation of nature helped them connect to their spiritual side (Phinney 1998, Stuckey et al. 2002, Snyder 2003). In all the studies, connection with family seemed to be extremely important. Additionally, Matano (2000) reported that a clergyman nurtured a spiritual connection to God. Consistently noted in this literature, was connection to the transcendent, described as faith in God. Faith in God provided strength, guidance and comfort to those trying to cope with AD.

Prayer and church attendance were the most frequently reported spiritual coping behaviours. However, Katsuno (2003) emphasized that people with AD were dependent on others to transport them to church. Phinney (1998) indicated that one participant used meditation while walking. Although not discussed in these studies, the practice of bible study and devotional reading would probably decline as AD progressed, because the neuropathological changes of the brain interfere with cognitive processing of reading material (Locascio et al. 1995, Phinney et al. 2002).

Finally, several studies have found that spirituality plays an important role in finding meaning in living with AD and quality of life. A common finding was that AD was God’s plan to slow a person down to enjoy life (Phinney 1998, Stuckey et al. 2002). Snyder (2003) reported that personal growth was gained through persons’ experiences with AD. Katsuno (2003) reported a significant positive correlation between the Quality of Life Index (QLI) and the Systems Belief Inventory (SBI), indicating that those persons who utilize their spirituality to cope with early‐stage AD, had a higher perceived quality of life (n = 21, r = 0·44, p < 0·05). Matano (2000) found that participants identified spirituality as an important contributing factor of their positive attitudes towards life, perceived ability to cope with life changes, high self‐esteem and satisfaction with their faith in God.

Limitations

Publication bias is a possible threat as only published articles were selected. Generalisability of this review is limited because of the small sample of studies that currently exist. Understanding spirituality and coping with AD is gaining interest in nursing and psychology. Thus, as this body of knowledge develops, a larger sample pool is predicted to improve generalisability. The sample size of each study is also small and drawn from purposive or convenience sampling. However, this is consistent with samples in qualitative methodology (Polit & Beck 2004).

Additionally, this sample is limited by a predominant representation of persons with religious affiliations (97%), often culturally defined and Caucasian ethnicity (74%). Further research needs to understand how spirituality in coping fits for those who claim no religious ties. Finally, sampling is limited in the representation of cultural diversity with only 12% African American and 4% Hispanic. Future studies should explore expanding populations of both African American and Hispanic cultures with AD (Alzheimer’s Disease Education and Referral Center 2004).

Discussion

An important contribution of this literature is that these findings shed light on the spiritual coping by persons with early‐stage AD and who are able to provide information about the psychosocial aspects of AD. Researchers should value the knowledge gained from the perspective voices of those with AD (Cotrell & Schulz 1993, Bahro et al. 1995, Phinney 1998).

Effects of AD create disconnections for persons with AD, from their self‐identity and from others. During this stressful process of disconnection, people often seek an existential cause and meaning for suffering (Folkman & Greer 2000). This critical step may be a determinant of success in coping with AD. Spirituality seems to offer a pathway to make sense of this disconnection and an avenue for the person with AD to provide meaning for their life (Pargament 1997). Most of these studies reported that church attendance and prayer were important coping behaviours that seem to facilitate this connection. This is consistent with research on spiritual coping with older persons dealing with other chronic or debilitating illnesses (Koenig et al. 1988, Lowry & Conco 2002). This also acknowledges connectedness as a component of spirituality (Burkhardt & Nagai‐Jacobson 2005, Miner‐Williams 2006).

Review of this literature highlighted the multi‐dimensionality and individuality of spirituality. For example, many persons from various religious affiliations spoke about spirituality in terms of their religious beliefs of God. However, Snyder (2003) reported two people who did not cling to traditional religious beliefs. One man described his spiritual experiences of connecting with nature and watching the sunset in the mountains for his inspiration to find meaning and purpose in dealing with AD. The second person was a non‐religious woman who utilized pragmatism to cope with the daily challenges of AD. The overlapping concept of spirituality and religion is often confusing. Pargament (1997) argues that religion is so important; it becomes embedded into peoples’ lives. Indeed, these studies indicated older persons with early‐stage AD used their religion and religious practices to express their spirituality, although one cannot draw a strong conclusion from this small sample. Perhaps future research should include measures of religious coping as older people use their religious practice to express their spirituality and to cope with life changes (Pargament 1997, Koenig et al. 2001). In addition, researchers can operationally define and measure religion and religious practices, which is important as this body of knowledge develops towards interventions and outcome research. Mixed methods designed studies may enhance validity (Polit & Beck 2004).

Research is vital to understand how diverse cultures, such as African American and Hispanic, utilize spirituality as a coping resource. Additionally, conducting longitudinal studies will enhance understanding of changes in coping abilities across the progression of cognitive impairment. However, eliciting reliable and valid information from older persons whose cognitive impairment worsens will challenge researchers.

Implications for Clinical Care

Results from this literature review may facilitate development of nursing interventions for persons with early‐stage AD in using their spirituality to cope, thus promoting their sense of self‐worth and quality of life. Nurses have the opportunity to be catalysts, enhancing their patients’ spirituality to cope with AD through patient‐centred care, holistic assessments and education of formal and informal caregivers. Increased awareness and sensitivity to the significance of patients’ spirituality and abilities to cope with AD is a starting point for patient‐centred care (Cavendish et al. 2000). Knowing what is important to our patients acknowledges their personhood, the foundation of patient‐centred care (Kitwood & Bredin 1992, Sabat 1998, McCormack 2004). Person‐centred care may reduce the afflicted persons’ stress, fears and anxieties and thus may improve their sense of self‐worth and quality of life. Moreover, patient‐centred care for persons with AD will focus on those coping abilities, which are still intact (Bahro et al. 1995).

Enhancing patients’ spirituality to cope with AD begins with an holistic assessment, which should include an assessment of coping responses and a spiritual history. Several coping and spiritual coping assessment tools are available that may identify appropriate and inappropriate coping responses (Keady & Nolan 1995a,b, Pargament 1997). A spiritual history is equally imperative for understanding the importance of patients’ faith traditions. Koenig’s (2002) book, Spirituality in Patient Care, provides a comprehensive list of spiritual history assessment tools. Conducting an assessment when a person is still in the early‐stage of AD is critical to identifying support.

Finally, nurses have a responsibility to educate formal and informal caregivers about the significance of spirituality in coping with AD (Katsuno 2003, Narayanasamy 2004). This will arm caregivers with knowledge of how to work with persons afflicted with AD to maximize their coping potentials and maintain their dignity.

Conclusion

Although there is a plethora of literature on spiritual coping, few of empirical studies have investigated the use of spirituality in coping with early‐stage AD. These descriptive and exploratory studies provide vital information about spirituality in coping with AD and serve as preludes to explanatory studies. The limited empirical knowledge compels the need for future research to explore how spirituality is used by persons with AD, how spirituality differs because of AD and what nurtures their spirituality to help them cope. Understanding how people with early‐stage AD attempt to adapt is the critical first step to developing interventions that will assist in augmenting self‐worth and well‐being (Clare 2002).

Acknowledgement

This study was supported by the John A. Hartford Foundation Building Academic Geriatric Nursing Capacity Scholar Program.

Contributions

Study design: LB; data collection and analysis: LB and manuscript preparation: LB, CB, RK.