CHAPTER 3 SOCIAL SUPPORT
Practice of Geriatrics
CHAPTER 3 SOCIAL SUPPORT
Jurgis Karuza, Ph.D.
Demography of Social Relationships
Family and the Caregiving Role
Family Caregivers and Medical Care
The purpose of this chapter is to discuss the importance of social support in the lives of older adults and its relevance to the delivery of geriatric care. First, a brief literature review documents the nature of social relationships in later life. Second, the link between social support and the well-being of older adults is explored. Third, the informal caregiving network is examined, highlighting the impact of caregiving on the caregiver. Finally, the significance of social support and family issues in the assessment and delivery of clinical care is considered.
DEMOGRAPHY OF SOCIAL RELATIONSHIPS
Several reviews document the current and projected future demographic landscape.1,2,3,4 and 5 Salient changes in marital and childrearing patterns, longevity, and women’s labor force participation are expected to contribute to a more diverse pattern of family and social relationships among older adults. Currently, 77% of older adult men and 41% of older adult women are married. Older women are more likely to be widowed than men, and the prevalence of widowhood increases with age. Thirty-four percent of women and 7% of men aged 65 to 69 are widowed, whereas 82% of women and 43% of men aged 85 and above are widowed. Slightly over 3% of older adults are divorced; however, in view of the current divorce rate, the number of divorced older adults is expected to increase in the future. Remarriage rates have been pegged at 2% for older adult women and 20% for older adult men.2 About 5% of older adults have never married. Over 80% of older adults have living siblings, but the number of surviving siblings decreases with age.4
Because of the sharp increases in fertility following World War II, the number of childless older adults will drop during the next few years. However, because of reduced fertility, high rates of divorce, and low rates of remarriage, the availability of spouses or children to provide care for the aging “baby boomers” will decline precipitously later in the twenty-first century.5 Several demographers comment that the future family structure will resemble a “bean pole” as the number of living generations increases and the number of individuals within each family generation decreases owing to lower fertility rates.1 This pattern has implications for the structure of future family relationships, with family members having more vertical relationships across generations and fewer horizontal relationships with same-aged siblings and extended kin. Given the trends in life expectancy, a significant overlap in the life spans of great grandparents, grandparents, parents, and children will result. Four- and five-generational families will be more common. Already, the number of adult years a woman spends with one or both of her parents over age 65 has increased to 18 years. Increasingly, older adults will be more likely to have a surviving older parent.
The prevailing trend is toward intergenerational solidarity and contact among older adults and their children. Intergenerational relationships can best be described as “intimacy at a distance.” Older adults typically live apart from their children, either with a spouse or alone. But over 80% of older adults report regular weekly face-to-face or telephone contact with their children.1 Daughters, compared to sons, tend to have more frequent contact with their parents. Widowed parents have higher rates of contact with their children than married parents. Social class and ethnic differences in the extent of contact have been found, lower classes and families from Hispanic backgrounds having the highest levels of interaction.1,3
The norm of filial responsibility remains strong, and 80% of frail older adults’ care needs are provided by the family.6 It is not correct to assume that all older adults are dependent recipients of assistance within their families. Among well elderly, a pattern of reciprocity describes the patterns of intergenerational social exchange, in which older adults give as well as receive help. An important psychosocial byproduct of this pattern is the improved self-concept, sense of autonomy, and sense of well-being that is found among older adults who engage in altruistic behavior.7
Another major trend has been the changing role of grandparents. Currently, 3.3 million children live with grandparents, a figure that reflects a 44% increase since 1980. In 1991, 12.3% of African-American children, 5.6% of children of Hispanic ancestry, and 3.7% of white children lived in their grandparents’ home, a prevalence that reflects increases of 24%, 40%, and 54%, respectively.8 This increase has been a response to the instabilities of contemporary family life that are created by divorce, unemployment, and drug and alcohol abuse.9 Initial studies indicate that parenting grandparents may face a series of problems including stress-related illnesses, social isolation, and economic problems.10 But the grandchildren may be at no greater risk for health and school adjustment problems.11 Often, because they lack legal custody or guardianship, parenting grandparents experience difficulty in obtaining financial, medical, or educational services for their grandchildren.12 Custodial grandparents may struggle with ambivalent feelings. On the one hand, they may desire to keep the nuclear family together, but they fear that the child may not be cared for by the parent and dread the loss of the newly formed attachment to the grandchild.9
As older adults’ social networks become smaller owing to the death or relocation of friends and relatives, their families increasingly become important elements in their social support system.13 A major social policy question looming for the twenty-first century is the effect of a smaller family size and an increased number of single heads of household on the social support network, quality of life, and health care utilization of older adults. Family relations involving older adults should be seen as dynamic and interactive, reflecting changes in the individual, the family life cycle, and larger demographic and societal trends. Monitoring these trends becomes even more important in light of the powerful relationship between well-being and the adequacy of the social support network.
In a general sense, social support is defined as resources provided by others. Several reviewers have noted a strong association between social relationships and health.14,15 Attenuated social support has been found to be consistently related to a variety of negative outcomes including higher mortality rates, depression, physical illness, poorer recovery from surgery, stress, and impaired immunologic functioning.5,16,17 and 18 The importance of the older adult’s social support network is further underscored by the evidence that family supports are related to reduced health resource use by and delayed institutionalization of frail older adults.19
Social support, along with retention of a sense of personal autonomy and control, is mentioned specifically as one of the key ingredients in successful aging.20 Preliminary results from the MacArthur Studies on Successful Aging showed, for example, that maintenance of better physical performance in older adults was influenced by the amount of emotional support available.21
Current conceptualizations of social support underscore the importance of distinguishing among its functional content (i.e., focusing on emotional concerns or provision of instrumental aid),14,15 its structure (e.g., who provides social support), the density of the social support network, and its quantity.
Several researchers have outlined the manifold active ingredients in social support relationships including emotional support, such as expressing feelings of liking, trust, esteem, or concern or providing opportunities for venting or openly expressing feelings; appraisal support, such as affirming the values and beliefs of others and providing opportunities for social comparison; informational support, such as providing relevant advice or information; and instrumental support, such as offering aid in kind, labor, money, and so on.15
The person who provides the social support appears to moderate its impact in complex ways. Emotional support from spouses seems to be especially important in recovery from surgery17 and depression in chronically ill women. In fact, Mutran and colleagues17 found that depression in older adult women following hip replacement surgery was associated with a child (not a husband) assuming the role of confidant. Among widows, higher morale was associated with support received from friends, neighbors, and siblings rather than from children. Presumably this is true because of the difficulties associated with being in a position of growing dependency on one’s children.1
Research indicates that the association between the size of a person’s social support network and health outcomes is not a simple linear one. Those who are isolated and have relatively few or no social relationships are especially at risk for mortality. But above a threshold level, increases in the number of social relationships seem to produce diminishing returns in regard to improved health.14
Subjective perceptions of the adequacy and satisfaction with social support influence the effectiveness of the social support.13,17,22 Social support relationships can have a negative side if significant others become critical and demanding. These negative interactions may be more likely among more intimate family members than among friends.22
Significant others must be careful in how and when they provide support. Help given to an older adult may send an undercutting message of dependency rather than conveying the sense that the older adult is valued and respected.23 This message of dependency is amplified when the older adult does not have a choice in what help to get, when to get it, or when to stop getting it.
To maximize the positive impact of social support strategically, it may be as important to minimize any negative interactions among family and friends of older adults as it is to encourage the amount and frequency of supportive behaviors. Encouraging reciprocity of help within families, respecting the older adult’s sense of personal control and autonomy, and promoting a sense of volunteerism among older adults may be effective strategies to minimize the risks associated with poor social support.7,13
A considerable variety of social support measures are used in research.15 Given that a lack of social support is a risk factor for the well-being of older adults, clinicians may find it valuable to include questions about the extent and quality of older adults’ social support relationships in the clinical assessment of their patients.
FAMILY AND THE CAREGIVING ROLE
Eighty percent of the caregiving assistance given to the 1.3 million frail older adults in the United States comes from families. Of the 2.2 million family members who provide care, most (two thirds) are women.24 One third of the women caregivers are employed. The typical caregiving workload is 4 to 8 hours per day. The length of time spent in the caregiving role usually is 1 to 4 years, but a substantial number of families (20%) provide care for more than 4 years.25 The annual cost of caregiving provided by families with demented relatives has been estimated at $18,256, with 29% of costs paid in cash and 71% in unpaid labor.26
Trends toward minimizing hospital stays have resulted in discharge of older adults with more complex medical problems and more complicated care needs.27 This result only intensifies and complicates the caregiving demands in families.
In general, families are not quick to institutionalize their older adult relative. Lack of a social support network remains a major risk factor for institutionalization. Within families, behavioral problems and incontinence are salient factors that predict the decision to institutionalize an older adult relative (see Chapter 29).
Caregivers and the caregiving context are marked by diversity, and no single generic caregiver role can be defined. The process of dividing caregiving responsibilities within a family is best understood as a product of mutual negotiation among family members. However, the literature points to several demographic and geographic factors that may make a family member more likely to assume the caregiving role.
Typically, in the United States, the primary caregiving responsibility falls on women: wives, daughters, and daughters-in-law.28 Depending on availability, a caregiving “line of succession” is often followed in families; spouses are most likely to assume the caregiver role, followed by children and then other relatives and friends or neighbors.28 Among children, the oldest child or only daughter is most likely to assume the principal caregiving role.29 Interestingly, Matthews29 found that although in families with only one daughter the siblings made every effort to divide caregiving responsibilities, the lone daughter was perceived to be “in charge” and the caregiving contributions of the brothers tended to be discounted by all the siblings. Those who live closer to the older adult care recipient are also more likely to assume the caregiving role.
Gender differences in the quality of caregiving have been noted. Men are less likely to help with household tasks and personal care tasks such as bathing or dressing and are more likely to enlist the assistance of other helpers while women are more likely to be solo caregivers.30 Consequently, there is a potential risk that older women may have more unmet care needs when their primary caregiver is their husband. Men tend to be more comfortable in offering assistance related to administrative and financial issues or providing transportation and running errands.30 In general, sons are more likely to perform less intense help while daughters are more likely to provide personal care assistance, although the size and gender composition of the sibling network has been found to moderate the caregiving patterns.29
With demographic changes, the likelihood that a woman will assume a caregiving role at some point in her life is increasing compared to that in previous generations.31 Also increasing is the probability that multiple caregiving roles will be adopted, with 10% of women’s caregiving time involving care for two or more individuals.32 There is evidence that women from more traditional lifestyles (e.g., those who married earlier or had more children) are more likely to become caregivers, but employment does not decrease the likelihood of a woman adopting the caregiver role.32 Women who are employed seem to provide the same number of hours of care as those who are not in the workforce, but the types of care may shift (i.e., the caregiving burden for food preparation and personal care is more likely to be shared). The increased presence of women in the workforce, coupled with the finding that women do not “trade off” employment roles for caregiving roles, is resulting in more women juggling work and caregiving roles. Recent legislative initiatives such as the Family Leave Act can provide some short-term relief for caregivers who face acute problems but do little to address the long-term burden of caregiving.
Given the central role of the family in providing long-term care in the United States, caregiver burden and its impact on families should be a major concern for clinicians. There is strong evidence that caregiving may be associated with a variety of negative psychological effects for caregivers, including increased depression and anxiety.33 Major risk factors for negative psychological effects include family income level, caregiver’s perceived quality of life, including things such as self-rated health, perceived stress, and satisfaction with life, and a pattern of behavioral problems in the care recipient.33
Far less clear is the unique impact of caregiving on the physical health of the caregiver; studies have shown a weak, mixed, or absent relationship between caregiving and measures of physical morbidity such as symptomatology, health care utilization, and self-reports of health.33 Although many characteristics of the care recipient, such as age and gender, do not seem to be related consistently to health outcomes, demented care recipients’ behavior problems do appear to be a source of distress to caregivers. This is especially noteworthy because disruptive care recipient behavior has been linked to an increased likelihood of institutionalization.
In response to the burdens of caregiving, a variety of interventions such as family respite, caregiver support groups, and individual counseling have been developed.34 Despite a disappointing mixed pattern of success, limits in the research methods make it difficult to draw definitive conclusions about the efficacy of these interventions.35 Educational interventions that teach problem-solving or stress management skills appear to show promise.36
Considerable attention has been paid to the interplay between informal family-based caregiving and help received from formal community-based organizations. A major concern is whether formal community-based care “substitutes” for or “supplements” the family care given to older adults. Evidence is mixed, with some research suggesting that racial differences exist. Among African-Americans, families receiving formal services did not decrease the amount of informal supports they provided.37 Some research has found that use of formal health care services offsets the negative effects of caregiving for caregivers of impaired older adults.38
FAMILY CAREGIVERS AND MEDICAL CARE
In recognition of the major role played by families in the health care of older adults and the burdens of caregiving, there have been calls for the development of more effective physician-caregiver relationships that consider the caregiver and patient as a single unit.39,40 Building on a biopsychosocial model, this approach enlists the family as a partner with the physician in the care of the patient. Families are recognized as important resources that can help the physician with health promotion, assessment, and care management. By specifically focusing on the patient-caregiver unit, the physician is better able to make care decisions, taking into account the unique pattern of interdependencies within the family, the available caregiver resources, and the level of caregiving stress and burden. At the same time, the physician is able to address the needs of the “hidden patient,” the caregiver. The physician is in a unique position to support the caregiver and provide help for the psychosocial and health problems created by the caregiving burden.
Although the model holds much potential, the few studies that have been done in this area indicate that a minority of caregivers receive help from physicians on psychosocial problems or are involved in the clinical decision-making process.39 Major barriers to development of a caregiver-physician partnership include the resistance of caregivers, patients, and physicians to acceptance of a more egalitarian approach to the physician-patient interaction, and inadequate communication between physicians and family members.39 It is important to realize that many family members, although “quick studies,” do not have the specific skills or information necessary to be maximally effective as caregivers. Physicians should recognize their own potential as role models who can teach family members skills through the behavior they model, such as participating in a “team approach” to care.
To promote the caregiver-patient-physician partnership model the following components of practice are encouraged:40
Formation of a patient-caregiver unit.
Comprehensive home-based approach, including home visits.
Caregiver and patient reassessment (e.g., charting changes in physical function, functional health, and quality of life).
Provision of training to caregivers either directly or through referrals to help families cope with the caregiving situation. This training includes diagnostic monitoring, behavior management, case management, and self-care behaviors.
Offers of specific help for controlling or managing patient behavior problems.
Validation of the caregiving role.
Acting as a case manager.
Finally, three important areas of concern are highlighted that may be relevant to the caregiver-physician partnership model.
The prevalence of alcoholism or problem drinking in persons aged 60 and older has been estimated as 2% to 10% (see Chapter 30). The Council of Scientific Affairs of the American Medical Association (AMA) states that “attitudes toward alcoholism and the elderly on the part of the patient, the physician and the family can be formidable obstacles to the identification, diagnosis and treatment.”41 Given the structure and focus of the bulk of the programs aimed at alcohol prevention and treatment, it is not surprising that older adults frequently “fall through the cracks.” The physician is one of the few people who can recognize the early warning signs in older patients and can intervene early in those with late-onset alcoholism. Treatment recommendations stress the importance of involving the older adult’s family and friends. The prognosis is by no means hopeless, and evidence suggests that both late-onset and lifelong older adult alcoholics respond well to treatment.
In a large-scale random sample survey the prevalence of physical violence, verbal aggression, and neglect was estimated as 32 older adults per 1000.42 Underreporting of this form of abuse is a problem in that only 1 in 14 cases is estimated to reach public attention. Abuse victims are equally likely to be male or female, and spouses are the most likely abusers. Barriers to identification of elder abuse in the physician’s office include lack of awareness by physician of regulations, lack of training in identifying signs of abuse, and inadequate information from the older adult and the family. Mandatory abuse reporting requirements for professionals differ from state to state. To assist with identification of elder abuse, the AMA has issued a set of guidelines, which are summarized in Table 3-1.43
TABLE 3-1 GUIDELINES FOR ELDER ABUSE
As with other cases of domestic abuse, both the abused older adult and the abusive family member need treatment. It is often the case that neglect of older adults may be unintentional; the caregiver may not know how to give proper care or may be ill or depressed.
Advance Medical Directives
Although living wills and medical proxies are becoming more familiar to the lay public, a major problem is the failure of the physician to engage caregivers and their older adult relatives in a discussion of end-of-life treatment options and wishes (see Chapter 4 for a discussion of legal-ethical issues). One complication is the frequently found incongruence between a surrogate’s judgments and the older adult’s expressed preferences.44 One solution is to ask surrogates specifically to make a substituted judgment rather than to “make their best recommendation.” Additional evidence suggests that surrogates are not very accurate in interpreting or expressing the patient’s satisfaction with care or the quality of life.45,46 Finally, there may be important ethnic differences in the acceptance of advance directives and the choice of health care wishes.47 These concerns make it even more important for the physician to facilitate a dialogue among family members on end-of-life issues early, before loss of function and medical crises complicate the discussions.
In summary, social relationships and social supports of older adults are pivotal in the maintenance of older adults’ well-being and health. At the very least, physicians must be sensitive to social support issues in geriatric assessment and in developing care plans. Further, the physician should not lose sight of the fact that she or he is in a unique position to strengthen the older adults’ social support network and thereby enhance the function, health, and quality of life of older adults and their families.
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