Family Caregiving
Linda L. Pierce
Barbara J. Lutz
INTRODUCTION
Few adults receive paid homecare services. Outside support is not always welcome. Caregivers often refuse help and resources, as they may feel that professionals are prying into their private lives (Pierce, 2001).
Many adults who are in need of help receive unpaid care (Johnson & Wiener, 2006). The value of this care in the United States is estimated at $375 billion annually (National Alliance for Caregiving [NAC] & American Association of Retired Persons [AARP], 2009). The term unpaid caregiver refers to a range of kin and nonkin individuals who provide both functional (task-oriented) and affective (emotional) unpaid assistance to a dependent person with whom a long-term or lifelong commitment usually exists (Shirey & Summer, 2000). Family members, friends, and neighbors who provide unpaid care may also be referred to as informal caregivers (Pierce, Steiner, Govoni, Thompson, & Friedemann, 2007). These individuals care for spouses, other relatives, friends, and disabled children (Scott, 2006). The most common informal caregiving relationship is between an adult child and an aging parent (Scott, 2006). However, a study financed by the U.S. Administration on Aging found that more than 900,000 households include a child caregiver between the ages of 8 and 18 years who care for ill or disabled family members (Hunt, Levine, & Naiditch, 2005).
The decisions about caring for a person with chronic illness are complex and multifaceted for caregivers. Each choice an individual makes has advantages and disadvantages for the person with chronic illness, the caregiver, and the family. Healthcare professionals generally find that no two situations are alike. Each and every situation needs to be individualized to best meet the needs of everyone involved. This chapter focuses on the multiple aspects of coping and decision making that caregivers face, often on a daily basis.
Current Family Caregiving
The incidence of chronic disease in the United States is increasing. More than 133 million Americans live with chronic conditions such as diabetes, heart disease, and cancer (Bodenheimer, Chen, & Bennett, 2009). Nearly one-third of adults aged 18 to 44 years suffer from a chronic condition (Shapiro, 2002). Most important, the number of adults older than 65 years (39.6 million in 2009) will continue to rise by more than 19 million by 2020; by 2030 there will be about 72.1 million of these individuals (Administration on Aging, 2010; Moore, 2006). Medicare data document that 83% of all beneficiaries have at least one chronic condition. However, 23% of
Medicare beneficiaries with five or more conditions account for 68% of the program’s funding (Anderson, 2005, p. 305). With advances in health care, the number of older adults living with debilitating and/or chronic conditions will grow (Williams, Dilworth-Anderson, & Goodwin, 2003).
Medicare beneficiaries with five or more conditions account for 68% of the program’s funding (Anderson, 2005, p. 305). With advances in health care, the number of older adults living with debilitating and/or chronic conditions will grow (Williams, Dilworth-Anderson, & Goodwin, 2003).
At the other end of the age spectrum is the growing number of children with chronic illness, disabilities, or both. Advances in neonatal care can now save increasing numbers of preterm and low birth weight infants. According to a 2003 report from the National Center for Health Statistics, the percentage of low birth weight infants (born weighing less than 2500 grams) increased to the highest level in more than 30 years. In addition, the percentage of preterm births (infants born at less than 37 weeks of gestation) increased to 12% of live births. Low birth weight and prematurity both lead to an increased incidence of chronic health problems in the pediatric population. About 15-18% of children have a chronic disease (University of Michigan Health System, 2006) that continues into adulthood.
A 2009 study by the National Alliance for Caregiving and the American Association of Retired Persons estimated that 28.5% of the American population serves as unpaid family caregivers to an adult or child with special needs. This translates into 65.7 million caregivers in the United States (NAC & AARP, 2009). The duration of caregiving can last from a few months to decades. Caregivers report an average of 20 hours per week in caring for a person with a chronic condition (NAC & AARP, 2009).
Preferences for Family Care
It is important to clarify that some dependent individuals will always need the level of care provided in institutional settings and that not all families are willing or able to provide care over the long term. However, for all but the most severely impaired individuals, most chronically ill, dependent persons have their long-term care needs met in the home or with communitybased care arrangements. Approximately twothirds of dependent persons in the community rely solely on informal caregivers (Mittelman, 2003). For these arrangements to work, family members, friends, or neighbors must play central roles in long-term plans of care.
The decision about where and how to provide care for family members with chronic conditions is emotionally charged and multifaceted. Home-based care is financially cost effective for the healthcare system. However, the reliance on family members as care providers creates multiple stressors for the family (Hunt, 2003). When formal assistance is required, married persons prefer help in the home regardless of the level of disability of the care recipient; however, financial difficulty and the strain of extended caregiving, especially on the caregiver’s health, often lead family caregivers to decisions that favor institutionalized care (Family Caregiver Alliance, 2006).
Characteristics of Family Caregivers
Today, the term family caregiver extends beyond the traditional family boundaries. Caregiver is defined as anyone who provides assistance to another in need. The informal caregiver is anyone who provides care without pay and who usually has personal ties to the care recipient. Family caregiver is a term used interchangeably with informal caregiver and can include family, friends, or neighbors. Caregiver coalition is a term used to describe the addition of a support person or persons in traditional relationships when the caregiver-recipient arrangement is no longer sufficient (Haigler, Bauer, & Travis, 2004).
Motivations for caregiving, such as love, duty, or obligation (often based on ethnicity and culture), strongly influence a caregiver’s willingness to accept primary caregiving status (Geister, 2005). Additional reasons given by family caregivers for accepting their role are their expectations of themselves and others, religious training and spiritual experiences, and role modeling (Piercy & Chapman, 2001).
Caregiver Dyads and Caregiver Systems
Early caregiving research identified a care recipient and a caregiver as separate entities; the caregiver had primary responsibility for the care and well-being of the care recipient. These studies often did not recognize that caregiving usually occurs within the context of larger, more complex family systems (Palmer & Glass, 2003) or other social networks (Weitzner, Haley, & Chen, 2000). Furthermore, the helping networks used by widowed and never married individuals may be larger than those of married people (Barrett & Lynch, 1999).
In recent years, caregiving research has placed more emphasis on the dynamics of the family relationships (Palmer & Glass, 2003) and the dyadic relationship (Badr & Actielli, 2005; Sebern & Whitlatch, 2007). As would be expected, these studies indicate that the dynamics of the family or other close personal relationships that existed before the illness experience can influence caregiving relationships post-illness. The increasing number of stepfamilies also adds to the complexity of caregiving. Today, people of both genders and of all ages, ethnicities, and economic classes occupy positions as caregivers with varying levels and types of responsibilities, especially in long-term care arrangements. Because caregivers have varying degrees of responsibility for providing or arranging for care, the terms care provider and care manager may be used to differentiate two types of caregivers (Stoller & Cutler, 1993). This designation helps clarify the previously invisible contributions of all family caregivers. If a son is close to his dependent parents, especially if he is not married, he is likely to be accountable for seeing that things get done, even if he does not provide all of the direct care that is required (Allen, Goldscheider, & Ciambrone, 1999; Keith, 1995; Thompson, Tudiver, & Manson, 2000). Similarly, an adult grandchild may help a grandparent in the absence of a nearby adult child, or children-inlaw may find their relationships to relatives with chronic illness make them better suited to caregiving roles than the biological children (Peters-Davis, Moss, & Pruchno, 1999; Pruchno, Burant, & Peters, 1997; Travis & Bethea, 2001).
Changes in the modern family social structure have resulted in more families where both parents work outside the home. This so-called sandwich generation is often not available to provide care for aging family members, which creates a new level of caregivers—children and adolescents. These young caregivers assist with or even assume care of adults with chronic illness in their homes (Hunt et al., 2005; Lackey & Gates, 2001).
Racial and Ethnic Diversity
The family caregiving experience is also shaped by race and ethnicity. These two factors influence one’s life experiences in terms of socioeconomic status, education, marital status, health, living arrangements, and general lifestyle (Binstock, 1999). In chronic illness, access to programs and services and preferences for certain types of assistance are often sharply divided along racial and ethnic lines. The number of
minority older adults is increasing at a faster rate than that of non-Hispanic whites, with the largest proportionate increases projected in the over-75-years group. While the number of African American older adults will increase slightly in the next 50 years, proportionately larger and more rapid increases will occur among Hispanic and Asian elders (He, Sengupta, Velkoff, & DeBarros, 2005).
minority older adults is increasing at a faster rate than that of non-Hispanic whites, with the largest proportionate increases projected in the over-75-years group. While the number of African American older adults will increase slightly in the next 50 years, proportionately larger and more rapid increases will occur among Hispanic and Asian elders (He, Sengupta, Velkoff, & DeBarros, 2005).
Comparative research indicates that patterns of family response to a family member with a chronic illness may be significantly different across ethnic groups (Chesla & Rungreangkulkij, 2001). Gerontologic researchers are building a substantial body of literature on African American, Asian American, Native American, and Hispanic older adults and their family caregiving experiences and preferences for support. Because this literature is extensive, only one example of diversity is provided to illustrate ethnic influences.
Cultural precedence, historical events, and the needs of extended kin and family structure shape African American caregiving. Documented barriers to formal programs and services include poverty and economic disparity, lower educational levels, ageism, and racial discrimination (Jones, 1999). As a result, persistent underutilization of formal assistance programs and a reliance on family and friends are typical patterns of longterm care for dependent African American older adults (Cox, 1999).
While it is known that African American families have a strong sense of respect, duty, and obligation to elderly members of their communities, it may also be the case that generations have learned to be self- and family-reliant in the face of both overt and covert forms of racial discrimination (Binstock, 1999; Edmonds, 1999). As a result of this self-reliance, African American family caregivers, especially women, may be perceived to have a lower level of role strain than their white counterparts. Research demonstrates a large variation in the female African American caregiver’s perception of role strain (Williams et al., 2003).
Gender Differences
The choice of who becomes the primary caregiver and what the family caregiving system looks like depends on many factors. In a spousal relationship, the unaffected spouse usually assumes the caregiving role. Often, both spouses are forced to cope with role renegotiation in addition to their new roles as the giver and receiver of care (Gordon & Perrone, 2004).
Among married adult children, daughters or daughters-in-law are most often the primary caregivers for aging parents (Shirey & Summer, 2000). Daughters are more likely to offer assistance to their father who is serving in a caregiving role than their mother. This may be because they are more comfortable with their mother in that role and feel that their father needs additional assistance performing the tasks required of a caregiver (Mittelman, 2003). Sarkisian and Gerstel (2004) found that much of the relationship between gender and helping parents is explained by gender differences in employment patterns. They suggest that gender differences in adult care may be fading as women’s and men’s work lives become more similar (Sarkisian & Gerstel, 2004). National studies in the 1980s suggested that though women predominate as caregivers, somewhere between one in five and one in three caregivers are men (Chang & White-Means, 1991; Stone, Cafferata, & Sangl, 1987). Other studies in the 1990s estimated that men constituted nearly half of in-home caregivers and of caregivers to the elderly, chronically
ill, and disabled (Kramer & Thompson, 2001). Although men are just as likely as women to be involved in caring for and helping seniors, women, wives, mothers, and adult daughters spend more time as the designated primary caregiver (Stobert & Cranswick, 2004). In 2009, approximately two-thirds of family caregivers were female (NAC & AARP, 2009).
ill, and disabled (Kramer & Thompson, 2001). Although men are just as likely as women to be involved in caring for and helping seniors, women, wives, mothers, and adult daughters spend more time as the designated primary caregiver (Stobert & Cranswick, 2004). In 2009, approximately two-thirds of family caregivers were female (NAC & AARP, 2009).
The gendered nature of caregiving is certainly one important characteristic of long-term caregiving that is likely to continue in the future. All things being equal, the person who is closest to and the most involved in the daily life of the dependent person is usually the person most accountable for either doing or seeing that care is done.
Types of Care Provided by Family Caregivers
Over the long term, a dependent person requires two types of care: social care and health-related care. Social care includes both functional and affective assistance in daily living while healthrelated care refers to specialized care by professionals and daily treatments performed by family caregivers, such as the administration of medication.
Functional assistance is determined by the care recipient’s ability to perform various tasks of daily existence, which are categorized as either instrumental or basic activities of daily living. Instrumental activities of daily living (IADLs) are the functions an adult would be expected to perform in the process of everyday life, including cooking, cleaning, buying groceries, doing yard work, and paying bills. For a child, these tasks might include getting to school, playing, or cleaning his or her room. Basic activities of daily living (ADLs) are the tasks required for personal care and basic survival. These tasks include eating, bathing, dressing, going to the bathroom, maintaining personal hygiene, and getting around (mobility).
Affective assistance, also called emotional support, includes behaviors that convey caring and concern to the care recipient. Affective assistance is most often linked with enhanced feelings of self-esteem, contentment, life satisfaction, hope of recovery, dignity, and general well-being (Brody & Schoonover, 1986; Horowitz, 1985).
In the past, there was a somewhat clearer division between the formal and informal care network. The informal network—family caregivers or significant others—provided both emotional and functional aspects of care and monitored the care provided by formal providers. The formal network provided specialized care that was highly task-oriented and goal-directed. Today the roles of the formal and informal network reveal a more blended approach to caregiving. Family caregivers perform highly skilled tasks formerly reserved for the professional. Professional caregivers function as a team with the family in care decisions for the client (Haigler et al., 2004).
Caregiving Histories and Maturation over Time
Longitudinal studies of family caregiving have documented the many changes that occur in the role of family caregiver and note that family caregiving is not a static event. Pearlin (1992) equated caregiving to career development. There are two factors that contribute to this notion of a caregiving career or caregiving history: maturation of the caregiver over time, and ongoing role development associated with the inevitable transitions in care over the long term.
The expectations of the family caregiver are many. They often begin their roles with
little or no training or support. In addition to the psychological aspects of caregiving, they are expected to provide competent, skilled health care for their loved ones (Elliot & Shewchuk, 2003). Most caregivers begin their experiences as novices with little or no experience or knowledge of how to navigate the healthcare system (McAuley, Travis, & Safewright, 1997; Skaff, Pearlin & Mullan, 1996). Over time, mature caregivers master a new language system of entitlements (Medicare, Medicaid) and treatments (medication administration, illness symptomatology), and learn how to incorporate the needs of a dependent person into their daily lives (Leavitt et al., 1999). Some caregivers mature more quickly and with greater ease than others, and some caregivers are never able to achieve adequate skill and/or confidence in the caregiver role. Thus, tremendous variability can be found in the levels, lengths, and forms of care provided by family caregivers, which are at least partially attributed to successful mastery of their roles (Seltzer & Wailing, 2000).
little or no training or support. In addition to the psychological aspects of caregiving, they are expected to provide competent, skilled health care for their loved ones (Elliot & Shewchuk, 2003). Most caregivers begin their experiences as novices with little or no experience or knowledge of how to navigate the healthcare system (McAuley, Travis, & Safewright, 1997; Skaff, Pearlin & Mullan, 1996). Over time, mature caregivers master a new language system of entitlements (Medicare, Medicaid) and treatments (medication administration, illness symptomatology), and learn how to incorporate the needs of a dependent person into their daily lives (Leavitt et al., 1999). Some caregivers mature more quickly and with greater ease than others, and some caregivers are never able to achieve adequate skill and/or confidence in the caregiver role. Thus, tremendous variability can be found in the levels, lengths, and forms of care provided by family caregivers, which are at least partially attributed to successful mastery of their roles (Seltzer & Wailing, 2000).
Transitions in care occur at three points: entry into a caregiving relationship, institutionalization (or transitions into other formal care arrangements), and bereavement (Seltzer & Wailing, 2000). Unlike acute or episodic care that has an end point, the only natural end to long-term caregiving is the death of the care recipient. Even families that ultimately opt for institutional placement of their dependent family members do not abandon their relatives over the long term. Most caregivers stay engaged as care managers following the institutional placement decision (Seltzer & Wailing, 2000).
Montgomery and Kosloski (2000) have identified a similar concept called a caregiving trajectory. Their seven markers of caregiving are 1) performance of initial caregiving task; 2) self-definition as a caregiver; 3) provision of personal care; 4) seeking out or using assistive services; 5) consideration of institutionalization; 6) actual nursing home placement; and 7) termination of the caregiver role. In this trajectory, Montgomery and Kosloski believe that the order and timing of the markers are indicative of the individual, their culture, and the relationship of the caregiver to the care recipient.
One of the reasons that family caregiving precipitated by acute hospitalization is so stressful for new caregivers is that they have not had a period of maturation and development before the intense caregiving demands and the decision-making requirements that follow (Kane, Reinardy, & Penrod, 1999). In addition, the transitions in care occur rapidly and over a highly compressed period. In a matter of days the caregiver may transition from having no care responsibilities to being fully engaged in rehabilitation after hospitalization, or home or institutional long-term care (Kane et al., 1999).
Positive Aspects of Caregiving
In the past, research on stress, strain, burden, and burnout overshadowed the positive aspects of providing care to a dependent family member. As a result, less is understood about how and why caregivers provide care even under difficult circumstances. While not much has been published on satisfaction with caregiving, Kramer’s (1997) review of research on positive aspects of caregiving noted that some caregivers gain experience when assisting others. Gain was conceptualized as “the extent to which the caregiving role is appraised to enhance an individual’s life space and be enriching” (p. 219). Caregivers do report
satisfaction with their role. Adults who functioned as caregivers during their childhood have reported that their participation taught them responsibility, allowed them to be “part of the family,” and provided opportunities to be “appreciated” and to be “useful.” They also reported pride at learning skills at an early age (Lackey & Gates, 2001). Many couples feel that caring for their partner strengthened their relationship (Gordon & Perrone, 2004). Coherence, a sense of togetherness in caring for others, was discovered by Pierce (2001) to be important for maintaining stability within the family. Through coherence, family caregivers felt connected and this helped them survive in stressful times related to caring situations (Pierce, 2001).
satisfaction with their role. Adults who functioned as caregivers during their childhood have reported that their participation taught them responsibility, allowed them to be “part of the family,” and provided opportunities to be “appreciated” and to be “useful.” They also reported pride at learning skills at an early age (Lackey & Gates, 2001). Many couples feel that caring for their partner strengthened their relationship (Gordon & Perrone, 2004). Coherence, a sense of togetherness in caring for others, was discovered by Pierce (2001) to be important for maintaining stability within the family. Through coherence, family caregivers felt connected and this helped them survive in stressful times related to caring situations (Pierce, 2001).
A number of factors have been reported since the 1980s as contributors to caregivers’ satisfaction. These factors include the care recipient’s levels of physical, cognitive, and social impairment (Blake & Lincoln, 2000; Deimling, & Bass, 1986; Williams, 1993); the types of care provided by the caregiver (Draper, Poulos, Cole, Poulos, & Ehrlich, 1992; Montgomery, Stull, & Borgatta, 1985); the caregiver’s gender and marital status (Zarit, Todd, & Zarit, 1986); the extent to which the caregiver’s personal and social life are disrupted by the demands of caregiving (George & Gwyther, 1986; Poulshock, & Deimling, 1984); the quality of the relationship between caregiver and care recipient as perceived by the caregiver (Bowdoin, 1994; Caron & Bowers, 2003); and the satisfactory assistance with caregiving perceived by the caregiver (Bowdoin, 1994; George & Gwyther, 1986). For instance, caregivers and their families may experience less satisfaction if the care recipient is severely disabled and if they perceive that needed assistance in caring is unavailable. Other caregivers may report more satisfaction if the care recipient is only mildly disabled and if relatives, or friends, or both are able to help provide the needed assistance (Pierce, 2001). Family style, including receptivity, has been suggested as an area for future study (Gilliss, 2002). Longitudinal research and research with caregivers in diverse arrangements are needed to provide a more comprehensive view of what contributes to a positive caregiving experience.
The Future of Caregiving
Looking to the future, it is likely that the next cohort of older adults (the baby boomers) will be very different from their parents and grandparents and will further confound the current reliance on family caregivers. Declining family sizes, increasing childlessness, and rising divorce rates will limit the number of family caregivers (Johnson, Toohey, & Wiener, 2007) during the lifetimes of adult baby boomers. Parents of the baby boomer generation have several children from whom to seek assistance, while older baby boomers with smaller families will not be so fortunate. Additionally, the mobility of families often separates individuals by thousands of miles, making family assistance impossible. It remains to be seen what this societal trend will mean to this cohort.
In the future, racial caregiving trends are likely to change as well. In particular, African American and Hispanic caregivers will be more available for long-term caregiving than will Caucasian caregivers. Furthermore, Caucasian caregivers are expected to purchase more services for dependent family members (Shirey & Summer, 2000).
Most researchers agree, however, that any predictions about family caregiving in the future
are tenuous because public policy is difficult to predict from one generation to the next. That policy will need to change to accommodate the caregiving needs of the aging baby boomer cohort is the only certainty.
are tenuous because public policy is difficult to predict from one generation to the next. That policy will need to change to accommodate the caregiving needs of the aging baby boomer cohort is the only certainty.
PROBLEMS AND ISSUES
Family caregivers face multiple problems, issues, and concerns throughout their caregiving experiences. The section includes a case study on “the H. family” that is typical of the effort most family caregivers put into fulfilling their responsibilities, attending to the wants and needs of the care recipient, and continuously adjusting their lives to the physical and emotional requirements of the caregiving situation.
Family caregiving experiences incorporate societal values and are shaped by governmental policy. Policies that affect family caregiving in the United States were created with the presumption that families are responsible for caring for their disabled members and will provide the majority of the care that is needed (Montgomery, 1999). For many years, these expectations were consistent with caregivers’ resources and abilities.
Since 1990, however, there has been a blurring of the lines of responsibility for long-term caregiving. Increased technology, greater acuity of those in need of assistance, and competing demands on available caregivers have created an imbalance between the demand for family care and the ability of family caregivers to provide care. Family caregivers are being asked to provide highly technical treatments; administer complex medication regimens; provide laborintensive, hands-on care; and monitor the medical conditions of very ill family members.
The one responsibility that has remained constant over time, whether the family caregiver is a direct care provider or arranges care as a care manager, is the extensive decisionmaking demands placed on family caregivers. When the dependent family member cannot make decisions or has difficulty communicating choices, the responsibility for countless decisions associated with managing daily life falls to the caregiver. These decisions include the initiation, timing, and provision of assistance from informal and formal sources; integration of caregiving demands into work and family life; and planning for future long-term care needs (McAuley et al., 1997; Travis & Bethea, 2001).
The Influence of Public Policy on Family Caregiving
Containing the rising costs of healthcare services has become a national policy imperative. This goal is demonstrated through policies that promote prevention of premature or unwanted institutionalization of disabled elders in nursing homes, limit publicly funded homecare services to individuals with the lowest incomes, and curtail the Medicare home health benefit. Such policies limit the amount and scope of services that are provided to persons who need ongoing assistance by formal caregivers as well as their family caregivers. Cost-containment measures occurred precisely when the demand for help in providing long-term care at home was increasing (Riggs, 2004). These changes in government-sponsored services meant that many families, particularly low- and middle-income families, were faced with difficult choices about providing assistance while receiving minimal help from professional healthcare providers.
CASE STUDY
The H. Family
Mrs. H. had coronary artery disease and congestive heart failure that caused increasing fatigue, dyspnea, and angina over a 5-year period. Frequent upper respiratory infections exacerbated her dyspnea.
Home setting. Mrs. H. lived with her husband in a small rural town in a home they had owned since their children were small. Mr. H. was 4 years younger than his wife.
Role issues. Mr. H. assumed cooking tasks in the home and was the primary caregiver for his wife, assisting her to ambulate to the bathroom for toileting and bathing, making sure her clothes were clean and accessible, and making sure she took her medicine as prescribed.
Support. The couple’s married daughter and married son lived within a 10-minute drive of their parents’ house. Both had children of their own but assisted their parents at least once a week. The daughter did the major housecleaning for her parents and drove them regularly to the grocery store, to frequent doctor’s visits, and to the pharmacy. The son assisted his father with lawn work and household repairs; he was also called on in cases of medical emergency to be the decision maker.
Transitions. Over several years, Mrs. H.’s health declined. Her upstairs bedroom became inaccessible because stair climbing became exhausting. The living room was converted to a bedroom. She was hospitalized for a series of short-term stays for complaints of chest pain and/or difficulty breathing over this time span. Whenever she was hospitalized, the daughter and son took turns driving their father to the hospital because he visited their mother daily. During the next 5 years, these hospitalizations increased in frequency to several times yearly. She used portable oxygen at home.
Initially oxygen was only used for brief intervals during the night, and she was able to accompany her daughter for brief shopping trips or drives “to get out of the house.” As her health declined, Mrs. H. used the oxygen continuously, remaining in her room. The family got a Medi-Alert call button that Mrs. H. always wore in case she needed emergency help.
With each hospitalization, Mrs. H. returned home weaker. Mr. H. began to worry that he could no longer care for his wife at home because of her increasing weakness. He moved her commode adjacent to her wheelchair; even so, Mrs. H. had difficulty transferring from her chair to the commode. Mrs. H. was heavier than her husband; he worried about her safety, fearing that she might fall and injure herself and he would be unable to assist her. The daughter had a part-time job but visited her parents more frequently, twice weekly. She began to express concerns about both parents’ health to her brother, her friends, and her husband.
Decisions. When Mrs. H. was hospitalized at the age of 78 for chest pain and difficulty breathing, the physician approached Mr. H. and his son and daughter with a request that they
sign a Do Not Resuscitate (DNR) agreement. Mrs. H. had vehemently expressed, “I don’t want them damn machines,” so the family readily agreed to the DNR order. They were concerned for Mrs. H. because the DNR had never been brought up by the doctor before.
sign a Do Not Resuscitate (DNR) agreement. Mrs. H. had vehemently expressed, “I don’t want them damn machines,” so the family readily agreed to the DNR order. They were concerned for Mrs. H. because the DNR had never been brought up by the doctor before.
Mr. H. told his children that Mrs. H. would have to go to a nursing home when she was discharged from the hospital, as he could no longer care for her with her severely diminished abilities. Although the family discussed this problem, they did not resolve it. After visiting Mrs. H. one evening at the hospital, during which time she was alert and talkative, the family returned to their homes. That evening Mrs. H. died. The family expressed relief that her suffering was over, that she died the way she wanted to, without machines. They were also relieved that the whole family did not have to struggle with the nursing home decision.
Discussion Questions
1. What are the advantages and disadvantages of the client being cared for at home? For the family? For the caregiver?
2. What factors influence the cost effectiveness of home care versus institutionalization?
3. Who are the primary providers of home care? What are some of the providers’ competing demands?
4. What are some of the emotional responses to family caregiving?
5. What is the financial impact of caregiving on the caregiver?
6. How does public policy affect caregiving?
7. How can health professionals assist family caregivers?
8. Where can family caregivers go for assistance and information?
Several government initiatives have attempted to address the needs of family caregivers. In 1993, the Family and Medical Leave Act (FMLA) became law. This act gives qualified caregivers the option of taking up to 12 weeks of unpaid leave from their jobs to care for a family member (U.S. Department of Labor, 1993). In 2000, approximately 24 million or 16.5% of eligible employees used family and medical leave. Of these, approximately 30% used the leave to care for an ill child, spouse, or parent. Approximately 3% of the surveyed qualified employees who needed family and medical leave did not take it. The top barriers were not being able to afford unpaid leave (54%), being worried about losing their job (32%), or feeling that job advancement would be hurt (43%) (Workplace Flexibility 2010, 2004).
In addition to these barriers, many caregiving situations require that the caregiver be available for a longer period of time than the 12 weeks afforded by the FMLA. These barriers present difficult choices for family members of individuals in need of caregiving assistance—many are faced with leaving or reducing gainful employment to provide the necessary care because they
have no other options. The Older Americans Act Amendments of 2000 established the National Family Caregiver Support Program (NFCSP) (DHHS Administration on Aging, 2011a). Federal funds are given to states based upon their proportionate share of the population age 70 years old or older. States, working in partnership with local agencies on aging and faith and community-service providers and tribes, offer five direct services to best meet the range of caregiver needs. The services include provision of the following:
have no other options. The Older Americans Act Amendments of 2000 established the National Family Caregiver Support Program (NFCSP) (DHHS Administration on Aging, 2011a). Federal funds are given to states based upon their proportionate share of the population age 70 years old or older. States, working in partnership with local agencies on aging and faith and community-service providers and tribes, offer five direct services to best meet the range of caregiver needs. The services include provision of the following:
Information to caregivers about available services
Assistance to caregivers in gaining access to supportive services
Individual counseling, organization of support groups, and caregiver training to assist caregivers in making decisions and solving problems relating to their roles
Respite care to enable caregivers to be temporarily relieved from their caregiving responsibilities
Supplemental services, on a limited basis, to complement the care provided by caregivers
Family caregivers eligible for the NFCSP are those who care for adults aged 60 years or older and grandparents and relatives of children not more than 18 years of age, including grandparents who are sole caregivers of grandchildren and those individuals who are affected by mental retardation or have developmental disabilities. Priority is given to caregivers with social and economic need, particularly low-income and minority individuals, or older individuals providing care and support to persons with mental retardation and related developmental disabilities. While the NFCSP has been lauded as an important step in recognizing the needs of family caregivers, it lacks the appropriate funding to support the needs of caregivers at any meaningful level. Furthermore, each state decides how the funds are used, resulting in inconsistencies of services across states. In addition, with the aging of the baby boomers over the next several decades, the reliance on family members and friends for the long-term care needs of those with chronic conditions is expected to increase significantly (Montgomery & Feinberg, 2003; Riggs, 2004).
The lack of adequate monetary assistance for the family unit is a complex problem. Currently, public financing of long-term care in the home setting is minimal. Medicare offers a hospice benefit with a time-limited period at the end of life and some states have limited home and community-based waiver programs that provide some home-based services for lowincome residents. Often the waiting lists for these services are long, with residents never receiving the services for which they are qualified. Many private insurers offer long-term care policies through employers, fraternal organizations, retirement communities, and health management organizations. Unfortunately, in the past, most of these policies did not cover many aspects of the personal care provided by family caregivers, leaving this in-home care as out-ofpocket expenses. Long-term care policies now on the market are more comprehensive, but are expensive to purchase.
More recently, individual states were authorized to craft their own programs to provide paid leave to workers who need to care for family members. In 2001, the Clinton administration proposed relief to families in the form of a $1,000 annual tax credit for those receiving or providing long-term care in the home, but the
proposal generated controversy among legislators. Many believed that government intervention would discourage people from purchasing long-term care insurance to cover nursing home care and healthcare services in the home (DuPont, 1999). The 2010 U.S. healthcare reform legislation may provide some additional assistance for caregivers of persons with chronic illness in the United States. The legislation provides new options in two areas: home and community-based care and care coordination. The law establishes new options in Medicaid-funded home and community-based care that includes programs to provide attendant care services for individuals with disabilities and protection against spousal impoverishment. The law also provides incentives to physicians and healthcare organizations to improve post-discharge patient outcomes and establish care coordination services for Medi-care beneficiaries. However, this legislation is currently being contested, so the extent to which these reforms will be instituted and the involvement of the government’s role in assisting caregivers remains a highly debated issue (Family Caregiver Alliance, 2010).
proposal generated controversy among legislators. Many believed that government intervention would discourage people from purchasing long-term care insurance to cover nursing home care and healthcare services in the home (DuPont, 1999). The 2010 U.S. healthcare reform legislation may provide some additional assistance for caregivers of persons with chronic illness in the United States. The legislation provides new options in two areas: home and community-based care and care coordination. The law establishes new options in Medicaid-funded home and community-based care that includes programs to provide attendant care services for individuals with disabilities and protection against spousal impoverishment. The law also provides incentives to physicians and healthcare organizations to improve post-discharge patient outcomes and establish care coordination services for Medi-care beneficiaries. However, this legislation is currently being contested, so the extent to which these reforms will be instituted and the involvement of the government’s role in assisting caregivers remains a highly debated issue (Family Caregiver Alliance, 2010).
Emotional Effects of Being a Caregiver
Although not all persons experience stress when providing care, many do. There are a number of factors that influence caregiving and the stress it may cause. Factors include the intensity of the care provided, types of care tasks performed, gender, personal characteristics of the caregiver, the relationship between the caregiver and the person receiving care, support from other family members, and competing obligations of the caregiver. Research on caregiver stress spans more than 2 decades, and researchers have labeled caregiver stress as either strain or burden.
Strain or Burden
Caregiver strain and burden are multidimensional, closely related concepts that include both subjective perceptions of caregivers, such as role overload, and objective factors, such as physical care needs of the care recipient. Caregiver strain is usually related to the stress, hardship, or conflicting feelings one has when performing the caregiving role (Hunt, 2003). For example, a caregiver may feel a high level of role strain when trying to decide between caring for an ailing parent and maintaining gainful employment.
One area of caregiver research that has focused heavily on caregiver strain is dementia care. In particular, caregiving is more stressful and produces more emotional and physical strain when the caregiver is caring for a person with dementia or Alzheimer’s disease. Caregivers of persons with dementia are more likely than nondementia caregivers to say that they suffer mental or physical problems as a result of caregiving (Ory, Hoffman, Yee, Tennstedt, & Schulz, 1999). Caregivers also report higher levels of strain when they perceive the patient to be manipulative, unappreciative, or unreasonable (Nerenberg, 2002).
Caregiver burden is defined as “the oppressive or worrisome load borne by people providing direct care for the chronically ill” (Hunt, 2003, p. 28). Burden is relative to the level of the care recipient’s disability, including behavioral and cognitive issues; the extent of care required; and the caregiver’s level of worry or feelings of being overwhelmed (Nerenberg, 2002). Financial strain also contributes to the level of caregiver burden (Evercare & NAC, 2007).
Caregiver burden has been associated with increased depressive symptoms in caregivers of patients with stroke (Chumbler, Rittman, Van Puymbroeck, Vogel, & Qin, 2004), coronary artery bypass (Halm & Bakas, 2007), and Alzheimer’s disease (Mausbach et al., 2007), among others. The Family Caregiver Alliance (FCA) estimates that between 40% and 70% of caregivers have “clinically significant” depressive symptoms (FCA, 2006). Higher levels of depression have been found among dementia caregivers who cared for persons with moderate to severe functional impairment and greater amounts of behavioral disturbance (wandering and aggression) than among nondementia caregivers (Meshefedjian, McCusker, Bellavance, & Baumgarten, 1998).
Caregiver burden has been associated with increased depressive symptoms in caregivers of patients with stroke (Chumbler, Rittman, Van Puymbroeck, Vogel, & Qin, 2004), coronary artery bypass (Halm & Bakas, 2007), and Alzheimer’s disease (Mausbach et al., 2007), among others. The Family Caregiver Alliance (FCA) estimates that between 40% and 70% of caregivers have “clinically significant” depressive symptoms (FCA, 2006). Higher levels of depression have been found among dementia caregivers who cared for persons with moderate to severe functional impairment and greater amounts of behavioral disturbance (wandering and aggression) than among nondementia caregivers (Meshefedjian, McCusker, Bellavance, & Baumgarten, 1998).
In another study of caregivers and patients with dementia (n = 5627), 32% of the caregivers were classified as clinically depressed on the basis of elevated scores on the Geriatric Depression Scale (Covinsky et al., 2003). When caregivers’ appraisals of the burden of caregiving are high, there is greater likelihood of caregiver depression and depressive symptoms (Clyburn, Stones, Hadjistavropoulos, & Tuokko, 2000).
Caregiving is also a risk factor for poorer health and increased mortality in caregivers versus noncaregivers (FCA, 2006). One study reported that among spousal caregivers experiencing strain, there was a 63% higher mortality risk for family caregivers during a 4-year period than among noncaregivers (Schulz & Beach, 1999).
There also appears to be a gender component associated with caregiver strain. Female caregivers experience more psychiatric disorders than do male caregivers (Yee & Schulz, 2000) and are much more likely than men to report being depressed or anxious and to experience lower levels of life satisfaction. The irony is that, while they report more caregiver burden, role conflict, or strain, women are more likely than male caregivers to continue caregiving responsibilities over the long term. Women are less likely than men to obtain assistance from others with caregiving. Finally, women are less likely than men to engage in preventative health behaviors, such as rest, exercise, and taking medications as prescribed while caregiving (Burton, Newsom, Schulz, Hirsch, & German, 1997).
Caregivers for spouses have reported a higher incidence of depression and stress than those caring for a disabled parent. The caregiving roles and responsibilities may have a major impact on the relationship itself. Healthcare professionals must realize that the relationship between the caregiver and the spouse receiving the care needs to be supported and nurtured in terms of love, affection, and intimacy (Gordon & Perrone, 2004).
Children and adolescents who have functioned in the role of caregiver report difficulty watching their loved one progress with a chronic problem. They have memories of unpleasant smells and sights. They also report feeling helpless because of their lack of knowledge and fear that they will not be able to deal with a crisis (Lackey & Gates, 2001).
Recent research has found that caregivers who have a higher sense of self-efficacy and control over their life situations (i.e., personal mastery) have less burden and fewer depressive symptoms (Chumbler et al. 2004; Chumbler, Rittman, & Wu, 2007; Mausbach et al., 2007). These studies suggest that interventions that enhance self-efficacy or personal mastery will decrease health risks and improve health-related
outcomes for caregivers (Chumbler et al., 2007; Halm & Bakas, 2007; Rabinowitz, Mausbach, Thompson, Gallagher-Thompson, 2007)
outcomes for caregivers (Chumbler et al., 2007; Halm & Bakas, 2007; Rabinowitz, Mausbach, Thompson, Gallagher-Thompson, 2007)
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