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Who Is Caring for the Caregiver?: Promoting Spousal Caregiver's Health

Ostwald, Sharon K. PhD, RN

doi: 10.1097/01.FCH.0000342835.13230.a0
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Older adults are at high risk for developing chronic illnesses; those older than 85 are also the most rapidly growing segment of the US population. The majority of care for older adults with disabilities is provided in the community by family caregivers, as well as spouses if they are available. Although there has been significant research on the effect of caregiving on spousal health, few studies have addressed the health promotion needs of spousal caregivers. More research is needed to study health-promoting behaviors in the context of the social and physical environments in which spousal caregivers live and work.

From the Gerontological Nursing Center on Aging, School of Nursing, University of Texas Health Science Center, Houston.

Corresponding author: Sharon K. Ostwald, PhD, RN, Gerontological Nursing Center on Aging, School of Nursing, University of Texas Health Science Center, 6901 Bertner Ave, Houston, TX 77030 (e-mail: Sharon.K.Ostwald@uth.tmc.edu).

FAMILY MEMBERS who provide care for older persons who are ill or disabled have been the subject of research for more than 25 years. Although population groups, disease entities, conceptual frameworks, methods, and findings have varied, some commonalities have emerged from this large body of literature. Many family caregivers suffer physical and psychologic distress related to their caregiving experiences.1 Many caregivers, especially spouses, are also older and have preexisting health problems that may be exacerbated by the frequency and intensity of their caregiving situations.2 In addition, caregivers may neglect their own health to provide care for their ill relatives and believe that they are not entitled to time for themselves.3 In spite of these realities, caregivers persist for many years in their caregiving roles and report many positive caregiving experiences.4

The purpose of this article is to explore health-promoting behaviors in spousal caregivers of older adults with chronic disabling conditions and suggest future directions for research. In this article, health promotion is defined according to the Ottawa Charter for Health Promotion as “the process of enabling people to increase control over, and to improve, their health.”5(p1) This definition encompasses the concept of changing, or coping, or both, with the environment and using social and personal resources, which goes beyond mere personal responsibility for health and is critical to promoting the well-being of older adults.

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PREVALENCE OF CAREGIVING FOR OLDER ADULTS

According to the Administration on Aging,6 more than 90% of older persons with chronic disabilities (approximately 3.7 million in the United States) received informal care from family or friends or formal care from service provider agencies; about two-thirds received only informal care. The vast majority of care for elderly persons with disabilities is provided by informal caregivers who number more than 22.4 million.7 Caregivers who are older than 65 are more likely caring for a spouse.7 Approximately 80% of persons who live with spouses with disabilities provide care to them.8 Spousal caregivers are also most likely providing intensive, time-consuming care, as much as 56.5 hours of care per week on average.7 Although, in general, 75% of family caregivers are women, elderly husbands are often caregivers for their spouses as well.7 Although family caregivers represent all socioeconomic groups and both sexes, analysts at The Commonwealth Fund9 concluded that the caregiving time burden fell more heavily on women with incomes at or below the national median of $35,000.

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RESEARCH ON CAREGIVERS' HEALTH

Research on caregivers initially focused on describing the negative effects on their physical and mental health and identifying factors that were associated with greater stress. More recently, research has focused on testing a variety of interventions to reduce the negative effects of stress. Stress and coping models have dominated the research on caregiving.10–13 Research has demonstrated that caregiving may negatively affect the health, health behaviors, and health outcomes of family caregivers, particularly older spousal caregivers providing high levels of care.14 Schulz and Beach15 found that older spousal caregivers living with a spouse and experiencing mental and emotional strain had a 63% greater risk of mortality within 4 years than noncaregiving controls. Stress process models postulate that knowledge and skills, caregivers' appraisal of the situation, and social support and coping may moderate the effect of caregiving stress on outcomes. This model has been used most often in research with caregivers of persons with dementia, but it has also been used to study the caregivers of older adults with other disabling conditions. Characteristics of caregivers and the context of the caregiving situation have also been shown to affect caregivers' health outcomes.

Schulz and colleagues8,16,17 found that poor health outcomes were associated with the closeness of the relationship before the disability, the reported mental or physical strains of caregiving, the dependency level of the care recipient, and the availability of social support. Williamson and Schulz17 found that women were more likely than men to report severe caregiving strain, as well as experience greater depression when the prior relationship was close whereas male caregivers reported greater depression when their prior relationship was poor. Although it has generally been reported that female caregivers experience greater depression than male caregivers, Tiegs et al18 found that the impact of caregivers' sex on depression was mediated by caregivers' burden. Although men and women did not differ in many of the aspects of providing care (eg, hours of care, caregiving tasks), men experienced less burden and used more problem-focused coping strategies than female caregivers. Furthermore, women felt that their health was more affected by caregiving responsibilities than men.19 However, Monahan and Hooker19 found no gender differences in health after controlling for personality and social support, which might be a protective factor.

Reducing depression and strain in caregivers and increasing their coping strategies have been the focus of many research studies. Researchers have utilized stress and coping conceptual frameworks to investigate the impact of different interventions on family caregivers' well-being, psychologic morbidity (strain, depression, perceived burden), beliefs (self-efficacy, control), cognitive behaviors, and positive psychological outcomes (rewards, gains) and care recipients' function, behavior, and ability to avoid institutionalization. Although a discussion of this large body of literature is beyond the scope of this article, active, multicomponent interventions have been shown to be most effective for women, those with low incomes, and minorities.20 With few exceptions, research has focused on understanding and managing the behaviors of the “other person” and not on the caregiver's health.21

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CAREGIVERS' HEALTH-PROMOTING BEHAVIORS

Only a few studies have investigated health-promoting behaviors in caregivers of older persons with disabilities in comparison with the large number of studies that focused on reducing caregivers' depression and stress, as well as reducing care recipients' disruptive behaviors. Some researchers have examined the differences between men and women and investigated differences among racial groups. I found no studies on health-promoting behaviors of older spousal caregivers within a broader social and environmental context, as suggested by the World Health Organization's Ottawa Charter for Health Promotion.

The most commonly reported positive health behavior among caregivers was exercise.22,23 Exercise has been shown to be related to social support, especially for men. Janevic and Connell24 developed a typology reflecting the variations that they observed in the degree of social support provided for exercise in spousal caregivers. They found that some caregivers were “self-reliant” and needed no additional encouragement; for some, the support was “superfluous.” No spousal caregivers received negative or discouraging feedback about their intention to exercise. Some caregivers were classified as “well supported,” whereas others were “undersupported.” Elderly caregiving husbands experienced fewer restrictions in personal and recreational activities and obtained more informal assistance from others than elderly caregiving wives.25

Although Black caregivers have reported poorer health and more sickness, distress, and depression than White caregivers,26,27 McDonald et al28 found that Black and White caregivers reported similar strategies for promoting their own health with regard to nutrition, exercise, cognitive coping strategies, rest and relaxation, recreation, and socializing. Black caregivers were more likely to mention following professionals' health advice and report religious faith, whereas White caregivers were more likely to report keeping busy or staying active and seeking help. Janevic and Connell29 found mixed results in the 21 studies that they reviewed about coping strategies and social support and concluded that these 2 variables might not be different between Whites and minority groups.

A meta-analysis of 78 caregiver intervention studies provided 6 categories: (1) psychoeducational; (2) supportive; (3) respite/adult day care; (4) psychotherapy; (5) improvement in care receiver competence; and (6) multicomponent.30 Sorensen et al30 found that spousal caregivers benefited less from these interventions than adult children. None of these 78 caregiver intervention studies specifically addressed health-promoting behaviors in family caregivers.

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BARRIERS TO CAREGIVERS' HEALTH PROMOTION

Health promotion does not occur in a vacuum and is not always under the direct control of the individual caregiver. Spousal caregivers of older adults with chronic illness and disabilities may experience a number of personal, social, and environmental barriers to pursuing health-promoting behaviors. Figure 1 presents a force field analysis of the restraining and driving factors that may influence the adoption of health-promoting behaviors. The restraining forces or barriers are those that inhibit older caregiving spouses from pursuing health-promoting behaviors. The driving or facilitating forces are those that should be considered and strengthened to encourage health-promoting behaviors in this population and are discussed under the “Implications for research” section.

Figure 1

Figure 1

Caregivers personally may have poor health that prevents them from pursuing health-promoting and disease-preventing behaviors. Wolinsky et al31 found that older adults who did not engage in regular exercise had lower-body limitations, poorer perceived health, and fewer nonkin social supports. They worried more about their own health and did not have a sense of control over their own health. Thus, they experienced significant barriers to pursuing health-promoting and disease-preventing activities.

The additional physical responsibilities of providing complex and time-consuming care may further deplete caregivers' energy, leaving them feeling exhausted and isolated. The intensity of caregiving demands was related to health-promoting behaviors. A significant inverse relationship existed between the care recipient's level of dependency and the caregiver's health-promoting behavior.23 Caregivers providing heavy care reported not getting enough rest, not having enough time to exercise, not having time to recuperate from illness, forgetting to take medications, and not finding time for physician appointments.16 Male caregivers reported greater difficulty sleeping, greater use of over-the-counter medications, and less exercise than female caregivers.32 Caregivers who had a high sense of control had better health-promoting behaviors. Three health-promoting behaviors (not getting enough rest, not finding time to rest when sick, and not having enough time to exercise) and forgetting to take medications were associated with the level of caregiving and sense of control.16

The time devoted to caregiving activities may leave little extra time to pursue health-promoting or disease-preventing behaviors, or both.16 Although most caregivers report that they share caregiving tasks with another family member, 34% of those who provided the most intensive, time-consuming care reported that no one else helped them.7 Health-promoting activities that require caregivers to leave their spouses may be particularly difficult. Caregivers have expressed fear and guilt about leaving their spouse alone.33 Asking for support from others may also be a barrier to health promotion. Some studies have reported that female caregivers are reluctant to ask for help and wait for others to volunteer support.24

Support from family and friends may influence the extent to which spousal caregivers pursue health-promoting behaviors. Higher levels of perceived social support were associated with better health outcomes, but women received less social support than men.19,25 Caregivers of older persons have smaller social networks and less social support than caregivers of children.34 They may not have partners to share health-promoting activities such as exercise.24 Very few ill spouses provided support for health-promoting behaviors of their caregiving spouses.24 Lack of spousal support may present a barrier to the caregivers' pursuit of health promotion, although the care recipients may be emotionally, cognitively, or psychologically unable to provide that support. Tucker35 found that married couples identified their spouse as having the greatest social influence on their pursuit of a healthy lifestyle. This social influence was related to feelings of obligations and responsibility to others. A strong sense of obligation to care for a spouse with little support from others may be a major barrier to spousal caregivers' participation in health-promoting self-care, unless they can be helped to reframe health-promoting behaviors, as necessary to fulfill their obligations and responsibilities to the care recipients.

Many barriers to health-promoting behaviors in spousal caregivers are unique to the context in which they live and work. Even caregiving spouses who are motivated to participate in health-promoting behaviors may experience competing demands for time and energy, a lack of disposable income, difficulties with transportation, unacceptable or unreliable substitute care, fear of leaving their spouses, and lack of social support and encouragement. In addition, health promotion programs may not provide access to a safe and convenient site, age-specific or gender-specific activities, or both, or be ethnically and culturally appropriate for the vulnerable population. In addition, the oldest and most vulnerable of the spousal caregivers may have significant health problems, environmental challenges, and live on fixed incomes.

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CONCLUSIONS

In several reviews of the literature, I concluded that the research on family caregivers has primarily focused on negative outcomes and that there is no systematic body of literature related to the health promotion of older spousal caregivers.30,36,37 A few studies have documented that caregivers, especially caregiving spouses, practice fewer health-promoting behaviors and report poorer overall health16,22,23,38 than noncaregiving populations. No consensus exists regarding the best research paradigm to study health promotion in older caregivers, although the stress coping framework has been used most often. Several researchers have suggested that new models are needed to study positive health outcomes (eg, health promotion, disease prevention, meaning, hope, satisfaction, rewards).38–41 However, most of these frameworks have focused on self-care, self-efficacy, and personal lifestyle behaviors. What is needed is health promotion within a broader public health framework that considers social and environmental factors, as well as personal factors. Health-promoting behaviors are most likely achieved by older spousal caregivers when the driving factors, as given in Figure 1, are strengthened and the restraining factors (barriers) are weakened.

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IMPLICATIONS FOR RESEARCH

Socioeconomic and demographic trends are placing increasing stress on our informal care system. Declining mortality has led to increases in the number of older adults, particularly those older than 85 years, who are most likely to need assistance. Although the rates of disability are decreasing,42 the actual number of individuals with disabilities continues to rise. By 2040, there will be almost 4 times as many people older than 85 as there were in 1999.43 Older individuals with disabilities are most likely to receive care from their spouses, who might also be experiencing health problems and neglecting their own health. In addition, the number of available caregivers is decreasing, so older spousal caregivers are less likely to have assistance from other family members. In 1990, the ratio of informal caregivers to every older person receiving care was 11:1, but by 2030, the ratio will be 6:1.44

In their review of 71 caregiver intervention studies, Sorensen et al30 concluded that because caregiving spouses are older, have poorer health, report more caregiving strain, have lower incomes, and have smaller social networks, they may need different interventions. They recommended a focus on health, building supportive social networks, and accessing low-cost community resources.30 This multicomponent approach is consistent with the public health approach that states that health promotion interventions for older Americans should be multidimensional, focusing on the individual, the physical environment, and the social environment.44 This is particularly true for older spousal caregivers who experience a myriad of barriers to health promotion. Interventions that have focused on alleviating only the negative effects of caregiving should be expanded beyond the outcomes that are generally measured. The National Institute of Nursing Research45 convened a workgroup to review the research on informal family caregiving and suggest future research directions, including a focus on hard-to-reach overwhelmed caregivers (an apt description of many older spousal caregivers) and improving caregivers' ability to maintain their own health and a healthy lifestyle.

One of the criticisms of health promotion in the United States is that it is almost exclusively focused on behavior changes in the individual, without considering the social and environmental context within which behaviors occur.44 Potential barriers that older spousal caregivers encounter in personal, social, and environmental areas are summarized in Table 1, with suggestions for ways to address these barriers.

Table 1

Table 1

Personal factors related to knowledge, skills, perceptions, and self-efficacy necessary to practice health-promoting and disease-preventing behaviors are certainly needed. However, these factors alone will not address the needs of the vulnerable population of spousal caregivers. When designing health promotion interventions, the social environment is equally important to consider. Individual health-promoting behaviors occur within a larger context of socioeconomic, cultural, and social network issues. Many elderly live on fixed incomes. Households with families headed by persons 65 years and older reported a median income of $37,765 in 2005, with only 18.3% having an annual income above $75,000.6 Relationships between socioeconomic status and health persist into old age. The presence of a severe disability is associated with lower income levels and educational attainment.6 The costs of healthcare are a major concern for older adults. In 2004, older adults spent more than twice the amount of money on healthcare as all consumers (12.8% vs 5.7%). Because of the prevalence of chronic diseases and the resultant disability, they spent more on hospital admissions, physician and emergency department visits, and prescription drugs than younger age groups. However, their basic ability to understand and be good consumers of health information (health literacy) and healthcare services is lower than adults between the ages of 18 and 64.6 Unfortunately, most health promotion research has been conducted with White populations,44 limiting its generalizability to culturally diverse populations with different linguistic, cultural, and health literacy needs. Successful health promotion research programs have developed strategies to conduct outreach into communities through community organizations, churches, and schools, as well as community, political, and religious leaders. Seeking professional help and religious faith were both reported as important strategies for maintaining health by African Americans.28 Health promotion researchers must consider issues such as access to diverse communities, especially older spousal caregivers who may be socially isolated, how to build and maintain community trust, financial resources available to the participants, language preferences, customs and mores, kinship, and network systems.

Research has repeatedly shown a strong relationship between social support and health. Building a social support system, or helping elderly spousal caregivers maintain their social supports, may be a major part of a health promotion research program.30 Family and friends may be important in encouraging health-promoting behaviors, giving permission for caregivers to take time out for themselves, and applying social influence to help them realize that they have an obligation to care for themselves so that they can continue their caregiving role with their spouses with impairment.

Care should be taken that physical environments are safe for pursuing health-promoting activities. Because caregivers and spouses may have physical and sensory deficits, attention must be given to environmental hazards (broken sidewalks, uneven floors, rickety stairs), weather extremes (very low temperatures, excessively high humidity, lack of air conditioning or heat), safety (neighborhood crime, emergency call systems), and transportation (traffic congestion, safe and accessible parking, public and handicapped transportation). In addition, attention should be given to the availability of local resources that are necessary for a healthy lifestyle including grocery stores with a selection of healthy foods at reasonable prices, reputable financial institutions to help avoid financial exploitation, protection from exposure to unethical sales practices, and health insurance coverage for preventive services. Interventions, such as those identified in Table 1, are needed to address the environmental issues that may present major barriers to health that coexist with the specific barriers related to the demands of caregiving.

Social and environmental interventions that facilitate health-promoting behaviors may require political strategies at the community, state, or national level. Developing a safer neighborhood or better transportation for vulnerable elderly caregivers and their care recipients may require community action or perhaps changes in local zoning, policing, or agency policies. One of the major issues facing the country is the recognition of the importance of family caregivers within the long-term care system and the funding of more programs to assist them. Federal and state policy makers have expressed concerns that if programs are available to assist families, they will abandon their responsibilities and rely totally on the formal care system. This “out of the woodwork” phenomenon has not been supported by research; only 9% of elderly persons with disabilities living at home rely exclusively on formal care. If a spouse is present in the home, he or she is almost always the primary caregiver and uses formal services as a “last resort.”6,46 The lack of policies to support home-based services to assist caregivers has been widely acknowledged by the media as well as the state and federal policy makers to threaten the quality of life for older Americans.47–49

Researchers should develop intervention programs that are consistent with the action plan set forth by the Ottawa Charter for Health Promotion.5 A summary of the factors that should be considered (personal, social, environmental, and programmatic), potential barriers, and areas of focus for intervention programs being designed for older spousal caregivers are shown in Table 1. Designing research programs to enable caregivers to make healthy choices about their lives (and the lives of their care recipients) requires moving beyond providing information and skills, advocating for political, social, environmental, and cultural policies that foster health for everyone, creating supportive environments, and empowering communities so that individuals can receive the emotional, physical, and financial supports that they need to be healthy. These actions, consistent with the Ottawa Charter for Health Promotion, should be considered because health promotion research studies need to be developed for the most at-risk family caregivers and older spouses so that individual health promotion strategies are not tested in isolation from the context in which health behaviors occur.

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Keywords:

caregivers; elderly; health promotion; older adults; social support; spouses

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