Stress Reduction for Caregivers

Jody Olshevski, Anne Katz

• Publisher: Routledge
• Year: 2013
• eBook ISBN: 9781317771852
• Topic: Psychology
• Subtopic: History & Theory in Psychology
• Index: Psychology

As the older populations grow, an increasing number of people are faced with the challenges of caring for frail, older family members. Since the causes of frailty, and especially the causes of cognitive impairment, in late life can last for several years, caregiving can often be experienced as a chronic stressor. Caregiving is often associated with higher rates of depression and anxiety, and with lowered subjective health in the care provider. With this in mind, Stress Reduction for Caregivers addresses the issue of how to help caregivers manage and reduce their stress level. The book is unique in that it bridges the gap between research and practice. It includes a discussion of the stress and coping theories of caregiving developed by researchers in recent years. It also lays out a simple, practical training approach that utilizes four stress reduction techniques to assist professionals in adapting the theories to their practice: Stress Level Monitoring; Relaxation Training; Scheduling Relaxing Events and Cognitive Restructuring. Each technique is accompanied by case studies that demonstrate both the effectiveness and the challenges of applying the overall approach. With its strong base in research and its practical concern for the management and reduction of caregiver stress, this book is a must for professionals who desire to stay abreast of the latest techniques. It will also be of great benefit to advanced students examining the issues of caregiving.

1

CHAPTER

Stress and Coping Models of Caregiving Distress

Demographic trends in the United States, as in other industrialized countries, show an increase in the relative percentage and absolute numbers of the older population (65+ years old). In 1900, 4% of the population was age 65 or older, whereas by 1990, the percentage had grown to 12.5% (U.S. Bureau of the Census, 1995). In addition, the oldest old segment of the population (85+ years old) will increase dramatically before the year 2000 (National Institute on Aging, 1987). This projection will have several consequences on society, not only in economic terms, but also in the composition of society and in the roles expectation related to the care of older people.

According to Melcher (1988), the increase in life expectancy, the aging of the population, and the advances in medical technology and medicine will lead to an increase in the number of frail older people who will require care from their family or from society. Does the increase in life expectancy imply a higher percentage of disease among the oldest segment of the population? According to Peterson (1994), as a person ages, his or her biological and physiological systems deteriorate. Peterson postulated possible interactions between the aging process and disease; disease is more likely to occur with older age. On the other hand, he also supported the premise that aging is not equivalent to disease. Crimmins, Saito, and Ingegneri (1989) has argued that the average period of frailty has remained constant, at about 3 years before death, as life expectancy has increased. Taking as an example the probability of dementia, George, Blazer, Winfield-Laird, Leaf, and Fischbach (1988) estimated the prevalence of mild cognitive impairment at 13% for persons age 65 to 74, increasing to 24% for those age 85 or older.

As the percentage of frail and dependent older people increases, the number of families involved in the care of this segment of the population also increases. Research has found that almost half of older people live with their spouse, while about 15% live with a nonspousal relative (Chappel, 1991). Most help is thought to be provided by unpaid caregivers who are family members and friends. Twenty-nine percent are adult daughters, 23% wives, 12.5% husbands, 8.5% sons, and 27% other relatives (such as siblings or grandchildren) and nonrelatives including sons-in-law or daughters-in-law (Finucane & Burton, 1994).

Family caregivers perform the first line of care for frail older people by providing needed services at home, usually for several years before seeking institutional care (Horowitz, 1985). In the United States, a large number of families take on the responsibility of a family member with a chronic or deteriorating disability or disease. But, what is a family caregiver? Family caregivers can be defined in several ways. Based on the American Association of Retired Persons (AARP) and the Travelers Companies Foundations survey (1988), caregivers are defined as individuals who provide unpaid assistance, for at least two instrumental activities of daily living or one activity of daily living within 12 months to a person age 50 or older. This definition is somewhat restrictive, however. Caring for someone includes all types of care—from giving companionship to the patient to providing 24 hours of nursing care. A person may be considered the primary family caregiver because he or she has the responsibility to provide or obtain proper care or services for the patient. Such objective definitions do not capture the process by which individuals come to think of themselves as caregivers. We have found that some family members provide a lot of care without having identified themselves as caregivers, whereas others have come to see themselves as highly burdened caregivers while doing little besides worrying about a parent. The system of professional services, self-help groups, and advocacy groups for caregivers undoubtedly plays a role in this labeling process.

In most of the families studied, a primary caregiver has been identified (Lebowitz & Light, 1993). In the White U.S. caregivers who have been the primary focus of research so far, the primary caregiver has been selected according to a hierarchy. If available, the first line of defense is a spouse, then a daughter, and then a daughter-in-law (Gatz, Bengtson, & Blum, 1990; Horowitz, 1985). This selection hierarchy clearly is culturally determined. In Japan and Korea, the oldest son is responsible for his parents, with the personal care being performed by his wife (Choi, 1993; Sung, 1992). In African American families, spousal caregivers are less common, with care more frequently being provided by children and by extended family or fictive kin (see chapter 2 for more on this point). Aranda and Knight (1997) speculated that, in some other cultures (e.g., U.S. Latinos), it may be more appropriate to think of the family system as the caregiving unit. In other words, the whole notion of primary caregiver rather than shared caregiving responsibility may be culture dependent.

Stress and Coping Models

The simplest model of caregiving distress is to think that caregiving always is stressful, that it is stressful because caregiving is hard work, and that caregiving distress follows a “wear and tear” model. That is, the longer caregiving goes on, the more stressful it becomes. Research has suggested that none of these statements are true. These discoveries have then led to thinking of caregiving in a more complex and more accurate way.

Emotional Distress

In this section, we examine emotional distress outcomes for caregivers and then discuss the less frequently studied links of caregiving stress to perceived physical health and to more objective health measures.

There are estimates that symptoms of emotional distress appear in 85% of caregivers (Rabins, Mace, & Lucas, 1982) and that depressive symptoms appear in over 40% (Cohen et al., 1990; Haley, Levine, Brown, Berry, & Hughes, 1987). Gallagher, Rose, Rivera, and Lovett (1989) used the Schedule for Affective Disorders and Schizophrenia (SADS) interview schedule to diagnose affective disorders in caregivers. Dura, Stukenberg, and Kiecolt-Glaser (1991) used the Diagnostic Interview Schedule (DIS) to diagnose affective and anxiety disorders in caregivers. Caregivers reported higher levels of depression and anxiety than noncaregiver comparison samples. The evidence for higher than normal levels of emotional distress outcomes, including syndromal depression and anxiety seems quite clear, at least for White U.S. caregivers.

However, it is important to note that not all caregivers become emotionally distressed. Most research has been done on caregivers who have been seeking help. Even among help seekers, most caregivers have not reported feeling severely emotionally distressed. When non-help-seeking caregivers have been interviewed, they have shown considerably lower rates of depression and other types of distress. For example, Gallagher et al. (1989) found that about half of help seekers, but only about one in five non-help seekers, were depressed. This selection bias is a common problem in clinical research of all kinds (medical and psychosocial) and simply reflects the reality that people seek help when they are feeling bad. The studies of help-seeking caregivers are valuable in understanding other help-seeking caregivers, but they are not representative of all caregivers, many of whom seem to be doing reasonably well.

Researchers also have found evidence that caregiving can lead to higher levels of life satisfaction (Motenko, 1989). From national estimates in 1987, almost three fourths of all caregivers interviewed reported that the caregiving role made them feel useful, and that it contributed to their self-worth (Schulz, Visintainer, & Williamson, 1990; U.S. House of Representatives, Select Committee on Aging, 1987). To complicate the matter further, some researchers, such as Lawton and his colleagues (Lawton, Moss, Kleban, Glicksman, & Rovine, 1991) reported that caregiving satisfaction and caregiving burden sometimes go hand in hand. That is, caregiving can be both positive and negative at the same time.

Summary

Caregiving appears to operate as a form of chronic stress that makes caregivers more susceptible to emotional distress and to clinical disorders such as depression and anxiety. Caregiving also has a positive dimension, which sometimes is mixed with the emotional distress. One issue, as yet not resolved by research, is whether caregivers develop specific emotional reactions (depression, anxiety, anger) or whether all of these emotions are a part of a more general emotional distress response as occurs with other life stress reactions (Stephens & Hobfoll, 1990). Hooker and her colleagues (Hooker, Monahan, Bowman, Frazier, & Shifren, 1998; Hooker, Monahan, Shifren, & Hutchinson, 1992) have modeled the emotional outcomes of caregiving as a single factor, a result which favors the general distress model and which we have replicated in our research (Fox, Knight, & Chou, 1997). This result would provide theoretical support for psychological interventions that are aimed at stress reactions in general over those aimed at specific emotions.

In our psychoeducational intervention strategies, we attempt to directly reduce the emotional distress reaction by the use of progressive relaxation training (also a key element in Meichenbaum’s Stress Inoculation Training, 1985) and by increasing relaxing events in the caregiver’s life, a strategy adapted from the use of pleasant events in Lewinsohn, Munoz, Youngren, and Zeiss’s (1986) intervention for depression. Both of these interventions help to increase positive affect and to decrease negative affect.

Perceived Physical Health

Although less clearly established than emotional distress outcomes, caregivers generally have reported that their perception of their own health is lower than that reported by appropriate matched controls or by population norms for age- and gender-matched groups. Stone, Cafferata, and Sangl (1987) found that caregivers in the Informal Caregivers Survey perceived their health as being worse than did age peers in the U.S. population. Lower perceived health ratings also have been reported by other researchers, including Baumgarten, Battista, Infante-Rivard, Hanley, Becker, and Gauthier (Canada; 1992) and Grafstrom, Fratiglioni, Sandman, and Winblad (Sweden; 1992). Snyder and Keefe (1985) reported that 70% of caregivers in their sample attributed declines in physical health to caregiving. Chenoweth and Spencer (1986) found that 21% of caregivers in their sample reported ill health as a primary reason for institutionalizing a relative with dementia. As discussed by Schulz, O’Brien, Bookwala, and Fleissner (1995), perceived physical health in caregivers seems to be determined by risk factors that are similar to those of the larger population (e.g., lower income, high psychological distress, low social support). The factors specific to caregiving seem to be different than those for emotional distress: cognitive impairment in the recipient rather than behavior problems and a much less clear role for the appraisal of caregiving as burdensome (Schulz et al., 1995).

The connection between perceived physical health and objective health outcomes (such as diseases) is not entirely clear. On the one hand, perceived physical health is clearly related to health status, functional ability, and mortality in longitudinal studies (George, 1996). On the other hand, perceived physical health also is related to depression, the personality factor neuroticism, and to other psychological variables (e.g., Hooker et al., 1992, 1998). The perception of physical health is almost certainly influenced both by actual physical health and by psychological distress.

Objective Health Measures

As noted in two extensive reviews by Schulz and his colleagues (Schulz et al., 1990, 1995), objective reports of caregiver health have been far less clear in showing a health difference. Symptom checklists for physical health, number of diseases, medication use, and medical utilization all have shown tremendous variability across samples, with at least as many nonsignificant differences reported as significant ones. Schulz et al. (1990) noted that the extensive use of convenience samples and the likelihood of selection pressures favoring inclusion of healthy caregivers (both because many caregivers are married and married persons are healthier and because health is a factor in becoming and remaining a caregiver as well as in willingness to participate in research) make the interpretation of this null result inconclusive. At present, the clearest result with regard to objective physical health effects is that aspects of immunological functioning are impaired in caregivers and that this leads to higher levels of respiratory infections (Kiecolt-Glaser, Dura, Speicher, & Trask, 1991; Kiecolt-Glaser et al., 1987).

Summary

In short, caregivers are at higher risk of emotional distress, perceive their health as being impaired, and experience changes in immune functioning and a higher prevalence of infectious diseases. As noted above, not all caregivers experience these problems and some people seem to find caregiving a positive experience. If not all caregivers become distressed, and if some feel good about caregiving, then the obvious question for researchers, professionals, and caregivers is, What makes the difference? In what follows, we explore common ideas about why caregiving would be stressful for at least some caregivers, including that caregiving is hard work and therefore stressful and that certain phases of the course of caregiving are stressful, and return to the stress and coping model with its focus on how caregivers’ appraise the experience of caregiving.

Is Caregiving Stressful Because It Is Hard Work?

The simplest way of thinking about the connection between stressors and distress reactions is to expect that distress is worse when the stressors are worse. This does not seem to be the case for caregiving. Total caregiving workload, the care receiver’s level of illness or disability, and other objective measures of caregiving stressors are not clearly or strongly related to the caregiver’s perception of caregiving as burdensome or to health and mental health outcomes. There are a few exceptions. For White U.S. careg...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Preface
• 1 Stress and Coping Models of Caregiving Distress
• 2 Dementia Caregiver Burden and Ethnicity, T. J. McCallum
• 3 Stress Level Monitoring
• 4 Progressive Relaxation and Visualization
• 5 The Relaxing Events Schedule
• 6 Stress-Neutral Thoughts
• 7 The Effectiveness of the Stress Reduction Technique
• 8 The Context of Stress Reduction: Community Services and Resources for Caregivers
• Index