Theris A. Touhy
Relationships, roles, and transitions
THE LIVED EXPERIENCE
It is so irritating when Madge tries to help me do things. After all, I have lived 85 years and have done very well. I think she wants to put me away somewhere. I wish she would just leave me alone. I’m sure I could manage if she just wouldn’t interfere.
John, the father
I just can’t stand watching as my father becomes weaker and is unable to do the things he always did so naturally and well. Yesterday he got lost on his way to the market. He was always my guide and protector. I knew I could count on him no matter what. It makes me feel sort of alone in the world.
Madge, the daughter
Learning objectives
Upon completion of this chapter, the reader will be able to:
• Identify the variations of relationships that people identify as constituting “family.”
• Examine family relationships in later life.
• Describe the various roles of grandparents.
• Explain the issues involved in adapting to a major transition such as retirement or widowhood.
• Identify the range of caregiving situations and the potential challenges and opportunities of each.
• Discuss intimacy and sexuality in late life and appropriate nursing responses.
Glossary
Respite A relief in caregiving, providing benefit to both the caregiver and the care recipient.
evolve.elsevier.com/Ebersole/gerontological
Relationships, roles, and transitions
This chapter examines the various relationships, roles, and transitions that characteristically play a part in later life. Concepts of family structure and function, the transitions of retirement, widowhood, widowerhood, and caregiving, as well as intimacy and sexuality are examined. Nursing responses to support older adults in maintaining fulfilling roles and relationships and adapting to transitions are discussed.
Families
The idea of family evokes strong impressions of whatever an individual believes the typical family should be. Because everyone comes from a family, these impressions have powerful symbolic meanings. However, in today’s world, the definition of family is in a state of flux. As recently as 100 years ago, the norm was the extended family made up of parents, their grown children, and the children’s children, often living together and sharing resources, strengths, and challenges. As cities grew and adult children moved in pursuit of work, parents did not always come along, and the nuclear family evolved. The norm in the United States became two parents and their two children (nuclear family), or at least that was the norm in what has been considered mainstream America. This pattern was not as common among ethnically diverse families where the extended family is still the norm. However, families are changing and today, only about 23.5% of U.S. households are composed of nuclear families.
A decrease in fertility rates has reduced family size, and American families are smaller today than ever before (2.6 people in the nuclear family). A delay in the age of childbearing is more common, with the average age of first births now 25 years of age, and first births to women over 35 years of age increasing nearly eight times since 1970. The high divorce and remarriage rate results in households of blended families of children from previous marriages and the new marriage. Single-parent families, blended families, gay and lesbian families, childless families, and fewer families altogether are common.
Multigenerational families have grown by approximately 60% since 1990 (Hooyman & Kiyak, 2011). Growth of multigenerational households has accelerated during the economic downturn. Older people without families, either by choice or circumstance, have created their own “families” through communal living with siblings, friends, or others. Indeed, it is not unusual for childless persons residing in long-term care facilities to refer to the staff as their new “family.”
Family members, however they are defined, form the nucleus of relationships for the majority of older adults and their support system if they become dependent. A long-standing myth in society is that families are alienated from their older family members and abandon their care to institutions. Nothing could be farther from the truth. Family relationships remain strong in old age, and most older people have frequent contact with their families. Most older adults possess a large intergenerational web of significant people, including sons, daughters, stepchildren, in-laws, nieces, nephews, grandchildren, and great-grandchildren, as well as partners and former partners of their offspring. Families provide the majority of care for older adults. Changes in family structure will have a significant impact on the availability of family members to provide care for older people in the future.
As families change, the roles of the members or expectations of one another may change as well. Grandparents may assume parental roles for their grandchildren if their children are unable to care for them; or grandparents and older aunts and uncles may assume temporary caregiving roles while the children, nieces, and nephews work. Adult children of any age may provide limited or extensive caregiving to their own parents or aging relatives who may become ill or impaired. A spouse, sibling, or grandchild may become a caregiver as well. This caregiving may be temporary or long term.
Close-knit families are more aware of the needs of their members and work to resolve problems and find ways to meet the needs of members, even if they are not always successful. Emotionally distant families are less available in times of need and have greater potential for conflict. If the family has never been close and supportive, it will not magically become so when members grow older. Resentments long buried may crop up and produce friction or psychological pain. Long-submerged conflicts and feelings may return if the needs of one family member exceed those of the others.
In coming to know the older adult, the gerontological nurse comes to know the family as well, learning of their special gifts and their life challenges. The nurse works with the elder within the unique culture of his or her family of origin, present family, and support networks, including friends.
Types of families
Traditional couples
The marital or partnered relationship in the United States is a critical source of support for older people, and nearly 55% of the population age 65 and older is married and lives with a spouse. Although this relationship is often the most binding if it extends into late life, the chance of a couple going through old age together is exceedingly slim. Women over 65 years of age are three times as likely as men of the same age to be widowed. Men who survive their spouse into old age ordinarily have multiple opportunities to remarry if they wish. Even among the oldest-old, the majority of men are married (Federal Interagency Forum on Aging, 2010). A woman is less likely to have an opportunity for remarriage in late life. Often, older couples live together but do not marry because of economic and inheritance reasons.
The needs, tasks, and expectations of couples in late life differ from those in earlier years. Some couples have been married more than 60 or 70 years. These years together may have been filled with love and companionship or abuse and resentment, or anything in between. However, in general, marital status (or the presence of a long-time partner) is positively related to health, life satisfaction, and well-being. For all couples, the normal physical and sociological circumstances in late life present challenges. Some of the issues that strain many of these relationships include (1) the deteriorating health of one or both partners, (2) limitations in income, (3) conflicts with children or other relatives, (4) incompatible sexual needs, and (5) mismatched needs for activity and socialization.
Divorce.
In the past, divorce was considered a stigmatizing event. Today, however, it is so common that a person is inclined to forget the ostracizing effects of divorce from 60 years ago. The divorce rate among people 50 years of age and older has doubled in the past 20 years. Older couples are becoming less likely to stay in an unsatisfactory marriage and with the aging of the baby boomers, divorce rates will continue to rise. Health care professionals must avoid making assumptions and be alert to the possibility of marital dissatisfaction in old age. Nurses should ask, “How would you describe your marriage?”
Long-term relationships are varied and complex, with many factors forming the glue that holds them together. Marital breakdown may be more devastating in old age because it is often unanticipated and may occur concurrently with other significant losses. Health care workers must be concerned with supporting a client’s decision to seek a divorce and with assisting him or her in seeking counseling in the transition. A nurse should alert the client that a divorce will bring on a grieving process similar to the death of a spouse and that a severe disruption in coping capacity may occur until the client adjusts to a new life. The grief may be more difficult to cope with because no socially sanctioned patterns have been established, as is the case with widowhood. In addition, tax and fiscal policies favor married couples, and many divorced elderly women are at a serious economic disadvantage in retirement.
Nontraditional couples
As the variations in families grow, so do the types of coupled relationships. Among the types of couples we see today are lesbian, gay, bisexual, and transgender (LGBT) couples. Although the number of LGBT people of any age has remained elusive, an estimated 3 million Americans over 65 years of age are LGBT with projections that this figure is likely to double by 2030 (Gelo, 2008).
Many LGBT individuals are raising children, either alone or as part of a couple. Although these couples are less often seen in the aging population, they are still there but may not be obvious because of long-standing discrimination and fear. It is important to recognize that there are considerable differences in the experiences of younger LGBT individuals when compared to those who are older. Older LGBT individuals did not have the benefit of antidiscrimination laws and support for same-sex partners. They were also more likely to keep their sexual orientation and relationships “hidden.”
Many older LGBT individuals have been part of a live-in couple at some time during their life, but as they age, they are more likely to live alone. Some may have developed social networks of friends, members of their family of origin, and the larger community but many lack support. The continued legal and policy barriers faced by LGBT elders contribute to the challenges for those in domestic partnerships as they age. Organizations that serve LGBT elders in the community need to enhance outreach and support mechanisms to enable them to maintain independence and age safely and in good health. LGBT elders living in metropolitan areas may find organizations particularly designed for them, such as Senior Action in a Gay Environment (SAGE); New Leaf Outreach to Elders (formerly GLOE, San Francisco), and the Lesbian and Gay Aging Issues Network (LGAIN).
Increasing numbers of same-sex couples are choosing to have families, and this will call for greater understanding of these “new” types of families, young and old. The majority of research has involved gay and lesbian couples, and much less is known about bisexual and transgender relationships. Much more knowledge of cohort, cultural, and generational differences among age groups is needed to understand the dramatic changes in the lives of gay and lesbian individuals in family lifestyles. The National Resource Center on LGBT Aging is the country’s first and only technical assistance resource center aimed at improving the quality of services and supports offered to lesbian, gay, bisexual and transgender (LGBT) older adults (http://www.lgbtagingcenter.org/).
Elders and their adult children
In adulthood, relationships between the generations become increasingly important for most people. Older parents enjoy being told about the various activities and successes of their offspring, and these adult children begin to see aspects of themselves that have developed from their parents. At times, the relationships may become strained because the younger adults are more concerned with their own spouses, partners, and children. The parents are no longer central to their lives, though offspring may be central to the lives of their parents. The most difficult situations occur when the elder parents are openly critical or judgmental about the lives of their offspring. In the best of situations, adult children shift to the role of friend, companion, and confidant to the elder, a concept known as filial maturity.
Most older people see their children on a regular basis, and even children who do not live close to their older parents maintain close connections, and “intimacy at a distance” can occur (Hooyman & Kiyak, 2011; Silverstein & Angelli, 1998). Approximately 50% of older people have daily contact with their adult children; nearly 80% see an adult child at least once a week; and more than 75% talk on the phone at least weekly with an adult child (Hooyman & Kiyak, 2011).
Never-married older adults
Approximately 4% of older adults today have never married. Older people who have lived alone most of their lives often develop supportive networks with siblings, friends, and neighbors. Never-married older adults may demonstrate resilience to the challenges of aging as a result of their independence and may not feel lonely or isolated. Furthermore, they may have had longer lifetime employment and may enjoy greater financial security as they age. Single older adults will increase in the future because being single is increasingly more common in younger years (Hooyman & Kiyak, 2011).
Grandparents
The role of grandparenting, and increasingly great-grandparenthood, is experienced by most older adults. Eighty percent of those over 65 years of age, and 51% of those 50 to 64, have grandchildren. There are approximately 80 million grandparents in the United States today, spanning ages 30 to 110, with grandchildren that range from newborns to retirees. Fifty percent of grandparents are under 60 years of age, and some will experience grandparenthood for more than 40 years (Livingston & Parker, 2010; Legacy Project, n.d.). Sixty-eight percent of individuals born in 2000 will have four grandparents alive when they reach 18; and 76% will have at least one grandparent at 30 years of age (Hooyman & Kiyak, 2011). Great-grandparenthood will become more common in the future in light of projections of a healthier aging.
As the term implies, the “grands” are a step beyond parents in their concerns, exposure, and responsibility. The majority of grandparents derive great emotional satisfaction from their grandchildren. Historically, the emphasis has been on the progressive aging of the grandparent as it affects the relationship with the grandchild, but little has been said about the effects of the growth and maturation of the grandchild on the relationship. Many young adults who have had close contact with their grandparents report that this relationship was very meaningful in their lives. Growing numbers of adult grandchildren are assisting in caregiving for frail grandparents.
The age, vitality, and proximity of both grandchild and grandparent produce a kaleidoscope of possible activities and interactions as both progress through their aging processes. Approximately 80% of grandparents see a grandchild at least monthly, and nearly 50% do so weekly. Geographic distance does not significantly affect the quality of the relationship between grandparents and their grandchildren. The Internet is increasingly being used by distant grandparents as a way of staying involved in their grandchildren’s lives and forging close bonds (Hooyman & Kiyak, 2011).
Younger grandparents typically live closer to their grandchildren and are more involved in child care and recreational activities (Box 24-1). Older grandparents with sufficient incomes may provide more financial assistance and other types of instrumental help. The need for support for adult children and grandchildren has the potential to increase during current economic conditions and may pose significant financial concerns for older people (American Association of Retired Persons, 2011). More than 60% of grandparents report taking care of their grandchildren on a regular basis, and 13% are primary caregivers. This phenomenon is discussed later in the chapter.
Siblings
Late-life sibling relationships are poorly understood and have been neglected by researchers. As individuals age, they often have more contact with siblings than they did in the years when family and work demands were more pressing. About 80% of older people have at least one sibling, and they are often strong sources of support in the lives of never-married older persons, widowed persons, and those without children. For many elders, these relationships become increasingly important because they have a long history of memories and are of the same generation and similar backgrounds. Sibling relationships become particularly important when they are part of the support system, especially among single or widowed elders living alone. The strongest of sibling bonds is thought to be the relationship between sisters. When blessed with survival, these relationships remain important into late old age. Service providers should inquire about sibling relationships of past and present significance.
The loss of siblings has a profound effect in terms of awareness of one’s own mortality, particularly when those of the same gender die. When an elder reaches the age of the sibling who died, the reaction can be quite disruptive. Not only is grieving activated, but also rehearsal for one’s own death may occur. In some cases in which an elder sibling survives younger ones, there may be not only a deep grief but also pangs of guilt: “Why them and not me?” (See Chapter 25.)
Other kin
Interaction with collateral kin (i.e., cousins, aunts, uncles, nieces, nephews) generally depends on proximity, preference, and the general availability of primary kin. The quality of relationships varies but is still a potential source of joy, support, assistance, or conflict. Maternal kin (related through female bloodlines) may be emotionally closer than those in one’s paternal line (Jett, 2002). These relatives may provide a reservoir of kin from which to find replacements for missing or lost intimate relationships for single or childless people as they grow older.
Fictive kin
Fictive kin are nonblood kin who serve as “genuine fake families,” as expressed by Virginia Satir. These non-relatives become surrogate family and take on some of the instrumental and affectional attributes of family. Fictive kin are important in the lives of many elders, especially those with no close or satisfying family relationships and those living alone or in institutions. Fictive kin includes both friends and, often, paid caregivers. Primary care providers, such as nursing assistants, nurses, or case managers, often become fictive kin. Professionals who work with older people need to recognize the instrumental and emotional support, as well as the mutually satisfying relationships, that occur between friends, neighbors, and other fictive kin who assist older adults who are dependent.
Later life transitions
Role transitions that occur in late life include retirement, grandparenthood, widowhood, and becoming a caregiver or recipient of care. These transitions may occur predictably or may be imposed by unanticipated events. Retirement is an example of a predictable event that can and should be planned long in advance, although for some, it can occur unexpectedly as a result of illness, disability, or being terminated from a job. To the degree that an event is perceived as expected and occurring at the right time, a role transition may be comfortable and even welcomed. Those persons who must retire “too early” or are widowed “too soon” will have more difficulty adapting than those who are at an age when these events are expected.
The speed and intensity of a major change may make the difference between a transitional crisis and a gradual and comfortable adaptation. Most difficult are the transitions that incorporate losses rather than gains in status, influence, and opportunity. The move from independence to dependence and becoming a care recipient is particularly difficult. Conditions that influence the outcome of transitions include personal meanings, expectations, level of knowledge, preplanning, and emotional and physical reserves. Cohort, cultural, and gender differences are inherent in all of life’s major transitions. Those transitions that make use of past skills and adaptations may be less stressful. The ideal outcome is when gains in satisfaction and new roles offset losses.
Retirement
Retirement, as we formerly knew it, has changed. Retirement is no longer just a few years of rest from the rigors of work before death. It is a developmental stage that may occupy 30 or more years of one’s life and involve many stages. The transitions are blurring, and the numerous patterns and styles of retiring have produced more varied experiences in retirement. With recent events that have seriously threatened pension security and portability, as well as a declining economy, more older people are remaining in the workforce. Forty-four percent of retirees work for pay at some point after retirement. Some do so because of economic need, whereas others have a desire to remain involved and productive. Obviously, health and financial status affect decisions and abilities to work or engage in new work opportunities. The baby boomers increasingly face the prospect of working longer, and 33% of this generation do not own assets and have little in savings or projected retirement income beyond Social Security. Eighty-three percent of baby boomers intend to keep working after retirement (Hooyman & Kiyak, 2011).
Retirement planning
Current research suggests that retirement has positive effects on life satisfaction and health, although this may vary depending on the individual’s circumstances. Predictors of retirement satisfaction are presented in Box 24-2. Decisions to retire are often based on financial resources, attitude toward work, family roles and responsibilities, the nature of the job, access to health insurance, chronological age, health, and self-perceptions of ability to adjust to retirement. Retirement planning is advisable during early adulthood and essential in middle age. However, people differ in their focus on the past, present, and future and their realistic ability to “put away something” for future needs.
Retirement preparation programs are usually aimed at employees with high levels of education and occupational status, those with private pension coverage, and government employees. Thus the people most in need of planning assistance may be those least likely to have any available, let alone the resources for an adequate retirement. Individuals who are retiring in poor health, culturally and racially diverse persons, and those in lower socioeconomic levels may experience greater concerns in retirement and may need specialized counseling. These groups are often neglected in retirement planning programs.
Working couples must plan together for retirement. Decisions will depend on their career goals, shared future interests, and the quality of their interpersonal relationship. The following are some questions one must weigh when deciding to retire or continue working:
• Who needs me, and what are my best opportunities?
• What is the meaning of my life?
• What should my life accomplish or contribute?
• Am I financially secure for the rest of my life if I live 30 or more years?
Retirement education plans are supplied through employers, group lectures, individual counseling, books, DVDs, and Internet resources. However, at this juncture and in light of the many hazards experienced by pre-retirees, planning is often insufficient. Many individuals have very high expectations for the final third of their lives. Although federal laws encourage increased participation in company-sponsored 401(k) plans, many of these plans are unreliable and rates of return have diminished considerably. The continued availability of Social Security is of great concern to current and future retirees (see Chapter 23).
The adequacy of retirement income depends not only on work history but also on marital history. The poverty rates of older women are excessively high. Couples who had previous marriages and divorces may have significantly lower economic resources available than those in first marriages. Child support, divorce settlements, and pension apportionment to ex-spouses may have diminished retirement income. This problem is an ever-increasing impediment to retirement because, among couples presently approaching retirement age, fewer than half are in a first marriage. Policies have been based on the traditional lifelong marriage, and this is no longer appropriate.
Special considerations in retirement
Retirement security depends on the “three-legged stool” of Social Security pensions, savings, and investments (Stanford & Usita, 2002). Older people with disabilities, those who have lacked access to education or held low-paying jobs with no benefits, and those not eligible for Social Security are at economic risk during retirement years. Culturally and racially diverse older persons, women—especially widows and those divorced or never married—immigrants, and gay and lesbian men and women often face greater challenges related to adequate income and benefits in retirement. Unmarried women, particularly African Americans, face the most negative prospects for retirement now and for at least the next 20 years (Hooyman & Kiyak, 2011).
Inadequate coverage for women in retirement is common because their work histories have been sporadic and diverse. Women are often called on to retire earlier than anticipated because of family needs. Whereas most men have always worked outside the home, it is only within the past 30 years that this has been the expectation of women. Therefore large cohort differences exist. Traditionally, the variability of women’s work histories, interrupted careers, the residuals of sexist pension policies, Social Security inequities, and low-paying jobs created hazards for adequacy of income in retirement. The scene is gradually changing in many respects, but the gender bias remains.
Barriers to equal treatment for LGBT couples include job discrimination, unequal treatment under Social Security, pension plans, and 401(k) plans. LGBT couples are not eligible for Social Security survivor benefits, and unmarried partners cannot claim pension plan rights after the death of the pension plan participant. These policies definitely place LGBT elders at a disadvantage in retirement planning.
Implications for gerontological nursing and healthy aging
Successful retirement adjustment depends on socialization needs, energy levels, health, adequate income, variety of interests, amount of self-esteem derived from work, presence of intimate relationships, social support, and general adaptability. Nurses may have the opportunity to work with people in different phases of retirement or participate in retirement education and counseling programs (Box 24-3). Talking with clients older than age 50 about retirement plans, providing anticipatory guidance about the transition to retirement, identifying those who may be at risk for lowered income and health concerns, and referring to appropriate resources for retirement planning and support are important nursing interventions.
It is important to build on the strengths of the individuals’ life experiences and coping skills and to provide appropriate counseling and support to assist older people to continue to grow and develop in meaningful ways during the transition from the work role. In ideal situations, retirement offers the opportunity to pursue interests that may have been neglected while fulfilling other obligations. However, for too many older people, retirement presents challenges that affect both health and well-being, and nurses must be advocates for policies and conditions that allow all older people to maintain quality of life in retirement.
Death of a spouse
Losing a partner after a long, close, and satisfying relationship is the most difficult adjustment one can face, aside from the loss of a child. The loss of a spouse is a stage in the life course that can be anticipated but seldom is. Seventy-six percent of women over 85 years of age are widowed compared with 38% of men (Federal Interagency Forum on Aging, 2010). The death of a life partner is essentially a loss of self. The mourning is as much for oneself as for the individual who has died. A core part of oneself has died with the partner, and even with satisfactory grief resolution, that aspect of self will never return. Even those widows and widowers who reorganize their lives and invest in family, friends, and activities often find that many years later they still miss their “other half” profoundly.
With the loss of the intimate partner, several changes occur simultaneously that involve social status, economics, and self-image. Individuals who have been self-confident and resilient seem to fare best. The transitional phase of grief, if handled appropriately, leads to the confirmation of a new identity, the end of one stage of life and the beginning of another. Seldom in life is there such an abrupt and distinct breach that creates intense pain but offers the opportunity for the emergence of a new identity.
Gender differences are found in the literature on widowhood. Bereaved husbands may be more socially and emotionally vulnerable (see Chapter 22). Suicide risk is highest among men over 80 years of age who have experienced the death of a spouse. Widowers adapt more slowly than widows to the loss of a spouse and often remarry quickly. Loneliness and the need to be cared for is a factor influencing widowers to seek out new partners. Association with family and friends, being members of a church community, and continuing to work or engage in activities can all be helpful in the adjustment period following the death of a wife.
Implications for gerontological nursing and healthy aging
Assessment
Feelings of the bereaved one are not orderly or progressive; they are conflicted, ambivalent, suicidal, full of rage, and often suspicious. Widows and widowers may exhibit personality disorganization that would be considered mentally aberrant or frankly psychotic under other circumstances. Some people handle grief with less apparent decompensation. Grief reactions must be accepted as personally valid and useful evidences of healing. DeVries (2001) discusses the signs of ongoing bonds and connections with the deceased (e.g., dreaming of the deceased, ongoing daily communication, “checking in”) that persist long after death and counsels professionals to reexamine the idea that there is a timetable for “resolution” of grief. There are several tools that can be used to assess aspects of the bereavement process including coping, grief symptomatology, personal growth, continuing bonds, and health risk assessment (Minton & Barron, 2008).
Interventions
Nurses will interact with bereaved older people in many settings. Knowing the stages of transition to a new role as a widow or widower will be useful in determining interventions, although each individual is unique in this respect. Individuals respond to losses in ways that reflect the nature and meaning of the relationships as well as the unique characteristics of the bereaved. Patterns of adjustment are presented in Box 24-4. With adequate support, reintegration can be expected in 2 to 4 years. People with few familial or social supports may need professional help to get through the early months of grief in a way that will facilitate recovery. To support the grieving person, it is necessary to extend one’s own self to reconnect the severed person with a world of warmth and caring. No one nurse or family member can accomplish this task alone. Hundreds of small, caring gestures build strength and confidence in the grieving person’s ability and willingness to survive. Additional information about dying, death, and grief can be found in Chapter 25.
Caregiving
Rosalyn Carter said: “There are four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers” (National Family Caregivers Association [NFCA], 2012).
Family caregiving has become a normative experience (similar to marriage, working, or retirement) for many of America’s families and cuts across racial, ethnic, and social class distinctions. Gerontological nurses are most likely to encounter elders with their family and friends in situations relating to caregiving of some kind. Family members and other unpaid caregivers provide 80% of care for older adults in the United States. More than 65 million people, nearly 29% of the U.S. population, provide care for a chronically ill, disabled, or older family member or friend during any given year. Caregivers are present in one of every five households, and seven out of ten caregivers are caring for loved ones over 50 years of age. Informal caregivers may also include friends, paid and unpaid workers, or volunteers in the home, but current trends suggest that the use of paid, formal care by older persons with disabilities in the community has been decreasing, while their sole reliance on family caregivers has been increasing (NFCA, 2012).
Approximately 66% of family caregivers are women, and the typical family caregiver is a 49-year-old woman caring for a widowed mother who does not live with her. Middle-aged caregivers, “the sandwich generation,” often struggle to balance the demands of work and parenting with caregiving for an older relative. Caregiving can also present financial burdens, and women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty. Even though generally considered a women’s issue, in more and more cases, male caregivers, including those other than spouses (e.g., brothers, nephews, sons), are assuming a full range of caregiving roles. Thirty-nine percent of caregivers are men, and this area needs further research to uncover their special needs and challenges. Additionally, 1.4 million children 8 to 18 years of age provide care for an adult relative, and 73% are caring for a parent or grandparent. This is another area that requires more investigation (NFCA, 2012).
Caregivers spend an average of 20 hours per week providing care for their loved ones, and the value of these services is estimated to be $375 billion annually—more than twice as much as is spent on home care and nursing home care combined, and exceeding Medicaid long-term care spending in all states. Without family caregivers, the present level of long-term care could not be sustained. Supporting family caregivers and their ability to provide care at home or in the community is crucial to our long-term care system.
Caregiving is considered a major public health issue, and attention to the physical and mental health of caregivers is receiving increased attention. The aging of the population, medical advances, shorter hospital stays, limited discharge planning by hospitals, and expansion of home care technology will increase the demand for family caregivers in the future. It is estimated that the number of family caregivers will increase by 85% from 2000 to 2050. However, the number of family members who are available to provide care will decrease substantially in that same time period (Centers for Disease Control and Prevention [CDC] and the Kimberly-Clark Corporation, 2008). Recruitment and retention of all levels of health care workers for long-term care services is also a significant problem. The Institute of Medicine report (2008) states that “unless action is taken immediately, the health care workforce will lack the capacity (in both size and ability) to meet the needs of older patients in the future” (p. 23).
Impact of caregiving
Although caregiving is a means to “give back” to a loved one and can be a source of joy in the giving, it is also stressful. Caregivers are considered to be “the hidden patient” (Schulz & Beach, 1999, p. 2216). Family caregiving has been associated with increased levels of depression and anxiety, poorer self-reported physical health, compromised immune function, and increased mortality (CDC and the Kimberly-Clark Corporation, 2008). “Caregiving is a very complex issue, and assuming a caregiving role is “a time of transition that requires a restructuring of one’s goals, behaviors, and responsibilities. It requires taking on something new but it is also about loss—of what was and what could have been” (Lund, 2005, p. 152).
Whereas not all caregivers experience consequential stress, the circumstances that are more likely to cause problems with caregiving include competing role responsibilities (e.g., work, home), advanced age of the caregiver, high-intensity caregiving needs, insufficient resources, poor self-reported health, living in the same household with the care recipient, dementia of the care recipient, and prior relational conflicts between the caregiver and care recipient. Suggestions to reduce caregiver stress are presented in Box 24-5. Lack of adequate long-term care services and financial difficulty have been reported to be the most consistent predictors of health and psychosocial outcomes (Robison et al., 2009). Caregivers of persons with dementia may experience even greater emotional and physical stress than other caregivers (see Chapter 21).
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