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The Role of Family in Community-Based Long-Term Care

CAROL J. WHITLATCH

LINDA S.NOELKER

INTRODUCTION

Older adults with chronic health conditions who need assistance with daily activities typically turn first to family members and friends. These family or informal care providers are the preferred source of care for older adults and provide ongoing assistance with a broad range of tasks such as personal care, household help, and activities of daily living. Family caregivers help with tasks ranging from housework, gardening, home maintenance, finances, cooking, and shopping to more personal tasks such as eating, bathing, toileting, and dressing. Regardless of the type and duration of care provision, family members and friends are the preferred source of care for the millions of older adults with chronic conditions living in the community.

DEFINITION OF INFORMAL CARE

For the purposes of this chapter, informal care is the assistance provided by a broadly defined and inclusive network of family and friends. This network is typically unpaid and includes care by spouses and unmarried partners; biological and nonbiological children, grandchildren, nieces, nephews, and other family kin; neighbors; church members; and close friends. Most persons with chronic disabilities could not remain living outside of institutional settings without help from these “informal” caregivers. Persons providing informal care, often termed family caregivers, are a broad group of individuals who vary greatly in their backgrounds, the care tasks with which they help, and their relationship and commitment to the person they are assisting.

PREVALENCE

It is challenging to determine the exact prevalence of family caregivers at any one point in time because of the wide variation in how the terms family caregiver, caregiving, and care recipient are defined. Many family members who are providing assistance do not self-identify as a “caregiver.” Rather, these family members see themselves as fulfilling a duty or giving back to the older relative who needs the extra assistance. According to the National Alliance for Caregiving (NAC, 2009), approximately 28 million households in the United States in 2008 had one or more family members who had provided care to an older relative. Approximately 43.5 million adults in the United States served as unpaid caregivers to persons aged 50 and older (NAC, 2009). Other estimates put this number closer to over 50 million unpaid caregivers (National Family Caregivers Association, 2000). The federal Administration on Aging estimated that at any one time, 22.4 million persons are providing family care (Administration on Aging, 2003).

Additional challenges to estimating the prevalence of family care will result from recent changes to diagnostic procedures that identify memory-impairing conditions such as Alzheimer’s disease. Continued improvements in diagnostic accuracy and specificity will lead families to receive diagnoses earlier in the disease progression. In turn, the prevalence of dementia will increase as will the number of family members involved in providing care in the home and who self-identify as a “caregiver.” For example, research findings on the trajectory of mild cognitive impairment (MCI) as a prodromal or preclinical phase of Alzheimer’s disease suggest that persons who previously would not be defined as caregivers would now be categorized as providing assistance to an older relative with Alzheimer’s disease (Wilson, Leurgans, Boyle, & Bennett, 2011). Of the households reporting that a family member is involved in providing care, 22% (about 5 million) indicate they are helping someone with dementia symptoms (National Alliance for Caregiving, 1997). It is estimated that 60% to 70% of persons with Alzheimer’s disease live at home, and 80% receive assistance from a family member (Alzheimer’s Association, 2010a, 2013).

Demographic changes will also influence the prevalence rates of informal caregiving. These changes include: (a) an increasing proportion and number of older adults who require assistance because of increased longevity; (b) a shrinking pool of potential family members available to provide care as a result of lower fertility rates, reflecting the growing number of employed women and postponed child bearing; and (c) geographically dispersed family members (Noelker & Whitlatch, 2005; for more information on demographic changes, see Chapter 1). It is important to note that estimating the number of family caregivers based on the number of older adults who receive help from family will yield inaccurate estimates of caregiving’s prevalence. The reason is that many older adults rely on more than one family caregiver. Thus, even though we know that 83% of chronically disabled adults under age 65 and 73% of those over age 65 received help exclusively from family members (Noelker & Whitlatch, 2005; Stone, 1995), we cannot use these figures to estimate the number of family caregivers.

TYPES OF CARE PROVIDED

The type of care provided to older adults depends greatly on the nature and severity of the chronic illness and related functional impairments for which the older adult requires assistance. Approximately 80% of older adults report at least one chronic condition, whereas about 50% report having two or more chronic conditions (Centers for Disease Control and Prevention, 2011). The types of disabilities associated with limitations in activity for older adults living in the community include arthritis and other musculoskeletal conditions (31%), heart and circulatory problems (28%), vision and hearing loss (11%), fractures and joint injuries (8%), diabetes (8%), and emotional and mental disorders (2%). The percentage of community-dwelling older adults who require help with activities of daily living increases with age. Specifically, 10.9% of persons aged 65 to 74, 21.8% of persons aged 75 to 84, and 48.8% of adults 85 years of age and older require assistance with personal activities of daily living (PADLs; bathing, dressing, toileting, feeding, grooming) and instrumental activities of daily living (IADLs; grocery shopping, meal preparation, transportation, finances, legal assistance, mobility, arranging appointments; Stone, 2000).

Additional factors that have an impact on the type, duration, and intensity of assistance provided by family caregivers include characteristics of both the caregiver and the older adult who requires care (Noelker & Whitlatch, 2005). Adults with memory loss (e.g., MCI, Alzheimer’s disease, degenerative dementia) have different care needs compared to physically impaired but cognitively intact adults. Caregivers of adults with physical impairments (e.g., stroke, traumatic brain injury, multiple sclerosis) provide a great deal of hands-on assistance with self-care activities such as bathing, eating, dressing, and walking. In addition to assisting with self-care activities, caregivers of adults with memory loss spend a great deal of time and energy assisting with their relative’s problem behaviors (e.g., agitation, memory deficits, wandering, and other behaviors such as inappropriate sexual or physically disruptive behaviors; Noelker & Whitlatch, 2005).

Care tasks can also vary depending on the older adult’s symptoms and disease progression. Persons in the early stages of dementia or memory loss exhibit more deficits in memory and personality than in self-care tasks. As the disease progresses, cognitive functioning further deteriorates, leading to deficits in self-care activities. With most dementing illnesses, physical difficulties occur later in the disease. Conversely, with conditions such as traumatic brain injury or stroke, adults can be bedfast from the start, with only minor deficits in cognitive functioning. For persons with nondementing illnesses, the progression and outcome of their condition is less certain, and they can experience periods of remission or stability punctuated by acute episodes (Noelker & Whitlatch, 2005). Finally, as hospitals and home-health care agencies increasingly discharge patients who require more complex and technical medical interventions, family caregivers will be expected to provide more medically based care (Levine, 2008). Examples of more medically based care include wound care, feeding tubes, and intravenous therapy.

Family members who do not live near their older relatives provide assistance as well, although this assistance is typically less “hands on.” Tasks more common to long-distance caregivers include instrumental assistance such as arranging and/or paying for services (e.g., house cleaning and lawn care), providing financial assistance, in-person visits that provide relief to the local caregivers, and telephone support. Anecdotal evidence from our own work with family caregivers suggests that support is also increasingly provided through electronic resources such as e-mail, text, instant messaging, and social network exchanges that are supportive and encouraging.

COST ESTIMATES AND THE VALUE OF FAMILY CARE

The economic value of providing family care to older adults in the community has been estimated to total $450 billion in 2009, an increase from $375 billion in 2007 (Feinberg, Reinhard, Houser, & Choula, 2011). The assistance provided by family caregivers who are women has an annual estimated value ranging from $148 to $188 billion (Arno, 2002). For persons with Alzheimer’s disease, family caregivers provided 17 billion hours of unpaid care, a contribution to the nation valued at over $202 billion (Alzheimer’s Association, 2011). In addition to the health care cost savings to society associated with the provision of family care, there are also financial costs to caregivers due to lost wages. It has been estimated that direct health care costs and costs associated with lost wages totaled between $80 and $100 billion for older adults with Alzheimer’s disease and the family members who assist them (Hoyert & Rosenberg, 1999; National Institute on Aging, 1998). It is likely that the economic value of family care will continue to increase as will the financial costs incurred by family caregivers.

Given the vast amount of care provided by families and the significant cost savings for publicly funded long-term care programs, it is not surprising that increased attention is being paid to developing policies and programs to support family caregivers in their role. If family members and other informal helpers were to discontinue their care activities, either because they were unwilling or unable to fill this role, the burden would shift to the formal long-term care sector. This increased demand would have a significant impact on the existing long-term care system, which, in its current form, would be unable to support the increased care needs of older and other impaired adults (Noelker & Whitlatch, 2005). In recognition of the changing demographic profile and the central role played by informal caregivers throughout the continuum of long-term care, more public attention and resources are being directed to services and interventions that support family caregiving efforts.

THE EXPERIENCE OF GIVING AND RECEIVING CARE

A variety of characteristics of both the family caregiver and the person who requires care have an impact on the care experience. These characteristics range from an array of sociodemographic factors to family relationship dynamics and cultural values.

SOCIODEMOGRAPHIC CHARACTERISTICS

Gender

It is estimated that 59% to 75% of family caregivers in the United States are women (Arno, 2002), including caregivers who are wives or unmarried partners, daughters and daughters-in-law, nieces, and granddaughters. Female caregivers, regardless of employment status, spend as much as 50% more time providing care than male caregivers (Family Caregiver Alliance, 2001). Women and men differ in the types of tasks with which they help. Women are more likely to provide personal care assistance, whereas men are more likely to help with instrumental tasks such as decision making and financial management. Moreover, women often have multiple roles separate from but in addition to their family caregiving responsibilities such as hands-on health care provider, care/case manager, companion, surrogate decision maker, and advocate (Navaie-Waliser et al., 2002). Research also suggests that caregiving women report greater distress than men. This finding is consistent, regardless of caregiver employment status and whether the older adult has a diagnosis of cancer, dementia, stroke, head injury, physical impairment, or mental illness.

One explanation for these gender differences draws on studies of health and well-being in the general population, indicating that women commonly score higher than men on indicators of stress. As well, women may be more comfortable than men in expressing feelings of stress. It has also been suggested that the nurturant role developed by men in later life may be rewarding or act as a form of repayment for the care they received in the past, which in turn helps to counteract the otherwise negative effects of caregiving (Russell, 2007).

Age

The effects of age on a caregiver’s ability to provide care or on how he or she responds to the stress of caregiving vary greatly depending on the caregiver’s physical and mental health, coping skills, and socioeconomic resources. Indeed, the effects of age are nearly impossible to disentangle from the effects of other caregiver and older adult characteristics. A caregiver’s age and kinship relationship are often identified as being confounded among spouse caregivers, who are typically older than adult children and other groups of caregivers. For older spouse caregivers, it is difficult to determine the origin of stress and whether the consequences of caregiving are related to age and chronic health conditions or to the specific experiences of caregiving. There is also inconsistent evidence about the effect of a caregiver’s age on his or her levels and types of distress, with some evidence that older caregivers are more distressed, whereas other studies find younger caregivers to be the more distressed (Whitlatch & Noelker, 1996).

Ethnic, Cultural, and Class Diversity

A growing body of research documents the experience of family caregivers with diverse cultural and ethnic identities. Advances in cross-cultural research have demonstrated diversity among caregivers throughout the world, including differences between developing and developed countries, urban and rural settings, and social class structures. Research in the United States indicates both similarities and differences among caregivers of diverse cultural backgrounds and ethnicities (Aranda & Knight, 1997; Pinquart & Sorensen, 2005). Familial support networks for caregiving are common among Mexican Americans, African Americans, Asian Americans, and European Americans (Greek, Italian, Polish, Irish, etc.). Common across all cultures and ethnic groups is that family care is the most preferred and relied upon source of assistance.

An increasing number of research studies focus on culture and caregiving, yet research in the United States tends to focus on differences between European and non–European American caregivers, paying little attention to the great heterogeneity within different ethnic groups. For example, European American caregivers are frequently compared to Asian, Hispanic, or African American caregivers living in the United States. Growing evidence indicates that differences among these groups are less pronounced than differences within the groups. In addition, it has been suggested that group differences may be more related to the length of time since immigration rather than to a specific ethnic background. As a result, there has been a call to shift research efforts from intergroup study to intragroup differences.

The intersection of ethnicity and social class creates an interesting yet rarely studied phenomenon in caregiving. Research studies that report differences by cultural background or ethnicity often note that these differences could be compounded by or attributed to differences in class. For example, comparisons among different ethnic groups rarely include samples with diverse income, education, and employment categories (for exceptions, see the review by Dilworth-Anderson, Williams, & Gibson, 2002). Merrill (1997a) notes that, compared to caregivers from middle-class backgrounds, working-class family caregivers report lower usage of adult day programs, are less likely to place their relative in a nursing home, and are more likely to report being motivated by feelings of reciprocity (the desire to “pay parents back”). Additional research is needed to untangle the unique effects of race, ethnicity, and social class because existing research findings are limited and inconsistent.

Family Dynamics, Communication, and Decision Making in Family Care

The onset of providing care to an impaired family member takes many forms. A sudden illness or accident can quickly force a family member into the caregiving role. More slowly progressing illnesses may manifest with very few significant symptoms so that the onset of care goes almost unnoticed. Regardless of the nature and intensity of the onset of care provision, family caregiving is seen as “an evolving set of circumstances” that are dynamic and often unpredictable (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995). A period of reorganization is common for families as they work to restructure their lives to care for a family member. It is common for one individual, whether by choice or convenience, to take on the role of “primary caregiver” (i.e., the person responsible for the majority of hands on care for the older family member). This “primary” caregiver frequently seeks assistance from other family members, friends, or service providers. Within the family, there is often an unspoken understanding that the primary caregiver is the main person in charge of the care and service coordination for the impaired family member. In many families there is a naturally occurring hierarchy that determines who will become the primary caregiver. If a spouse is available and able to assist, then the spouse is the most likely person to assume the caregiving responsibilities. If a spouse is unavailable or unable to provide care, then a daughter or daughter-in-law often assumes care responsibilities. Among men, husbands are most likely to be caregivers; sons and sons-in-law are much less likely to take on the role. In fact, it is more common for an older woman to be cared for by her daughter-in-law than by her own son.

The quality of the caregiver’s relationship with the care receiver is also associated with who will provide care. Family members with contentious or antagonistic relationships with the older adult, or relatives who are viewed as “irresponsible” or “unreliable,” are less likely to provide care than those relatives who are more compatible. Unfortunately, when the caregiver and older relative are not compatible, it is common for both to experience heightened distress.

Yet, family caregivers differ in their levels of distress depending on the type of kinship tie they have to the older adult. Typically, caregiving wives report higher levels of emotional distress than do husbands. Differences between adult daughter and wife caregivers are also common, although some studies find daughters to be more distressed, whereas other studies report the reverse (Depp et al., 2005). Interestingly, there is evidence that daughters-in-law are less distressed than daughter caregivers (Merrill, 1997b). In addition, there are exceptions to these findings where no differences are found by kinship tie (Zarit, Todd, & Zarit, 1986). Clearly, further research is needed to determine the nature of kin group differences and how different kin groups might be helped by interventions targeted to their various needs.

Additional factors that influence whether or not a family member will become the primary caregiver include the health of family members, their proximity to the older adult, and the demands of their everyday life. Family members in poor health or at risk for worsening health are less likely to become caregivers. About one third of primary caregivers assume the role because they live closer to the care recipient than other family members. Employed relatives or those with multiple and/or competing family demands are also less likely to be caregivers. However, even under demanding and stressful conditions, family members are still more likely than service providers to care for impaired older persons.

TRANSITIONS IN THE CAREGIVER ROLE: FROM IN-HOME TO INSTITUTIONAL CARE

There is growing evidence that the tasks and responsibilities of caregivers continue, although in a manner that is somewhat altered, once an older relative moves to a residential setting. Current research indicates that caregivers continue to remain very active in the lives of their impaired family members once placement or entry into a residential setting becomes necessary. Family caregivers visit often and frequently travel great distances in order to spend time with their relatives. Caregivers of nursing home residents often perform many of the same tasks they did while caring at home, including assistance with eating, personal care, and walking. In fact, a large majority of caregivers remain very active in the lives of their placed relatives for many years after the initial change in residence has occurred (Zarit & Whitlatch, 1992).

Yet, this continued involvement in care has the potential to add stress to the lives of family caregivers. Once their family member is institutionalized, caregivers must restructure and redefine their lives and adjust to their new role. Thus, the stress of caregiving is not completely alleviated by placement. In fact, a major source of stress for caregivers of relatives in residential settings is guilt: guilt about needing to move their relative into residential care, guilt about visiting often enough or not visiting for longer periods of time. Although these caregivers are relieved of the day-to-day demands of in-home care, many continue to feel distress. Although some caregivers are less distressed, many exhibit symptoms well above their preplacement levels of distress. It appears that placement alters rather than eliminates the stresses of caregiving (Zarit & Whitlatch, 1992).

ETHICS, EXPLOITATION, AND ABUSE IN FAMILY CARE

Ethics are moral principles that influence the behavior of a person or group. Family members share a variety of principles or beliefs about their responsibilities toward each other that are shaped, in part, by the family’s history and values. Some of these principles or beliefs are culturally based, whereas others are shaped by ascribed characteristics such as gender and birth order. Taken together, these beliefs and characteristics determine which family member will have primary responsibility for elder care. For example, although first-born males in some Asian cultures are expected to provide for older parents, it is typically the son’s wife who ultimately provides the bulk of care for her in-laws. Expectations and perceived responsibilities also evolve over time and are influenced by a family’s communication and negotiation styles, values, and history of support and caring. These responsibilities are referred to as “filial obligations” and reflect the family caregiver’s perceptions of moral duties or demands regarding elder care. The underpinnings for filial obligations stem from traditions that command parental and elder reverence, the belief that one’s parent or elder relative is owed a debt of gratitude, and as a means to express love for the older adult (McCarty et al., 2008).

Within some families, the members’ expectations and preferences for care provision are not aligned. This can result in family conflict and an added sense of caregiving burden manifested in emotional disturbance, power struggles, stress, and burnout, as well as the potential for elder neglect and abuse. Elder abuse is defined as the infliction of physical, emotional, or psychological harm, financial exploitation, sexual abuse, or intentional or unintentional neglect.

Each year, an estimated 4 million older adults are victims of various forms of abuse and neglect (American Psychological Association, 2012); experts estimate that for every case of abuse or neglect reported to authorities 23 go unreported.

Elder abuse and neglect result from a complex interplay of factors related to familial, caregiver, and cultural issues. According to the American Psychological Association (2012), families more prone to abusive behaviors often have a history of violent interaction, social isolation, extreme stress on one or more members, and poor coping skills. Caregivers who are more likely to abuse or exploit the care receiver frequently report problems with substance abuse, mental or emotional illness such as depression, financial dependency on the care receiver, or feelings of helplessness and entrapment. Moreover, the caregiver of a person with a dementing or mental illness who is abusive is often abusive in return. Cultures with higher incidence rates of elder abuse often define family interactions as completely private, disrespect or devalue older persons, or allow for mistreatment of family members, especially women (American Psychological Association, 2012).

Elder abuse and neglect can be prevented, and the cornerstone is public awareness and education about this social problem. Information about elder abuse and domestic violence is available nationally through a variety of local and national organizations. There are resources available for families to help them reduce or manage care-related stress and burden that may lead to abuse, some of which includes actual and virtual support groups, education and training materials and classes, respite services (i.e., a break from providing care), and care management services. Additionally, the website of the National Adult Protective Services Association (NAPSA) provides information about elder abuse and contact information for local adult protective services (APS) organizations. NAPSA was formed in 1989 to provide state APS program administrators and staff with a forum for sharing information, solving problems, and improving the quality of services for victims of elder and vulnerable adult abuse. NAPSA maintains a working relationship with the National Center on Elder Abuse, is funded by the U.S. Administration on Aging, and is a founding member of the Elder Justice Coalition. (See Additional Resources listed at the end of this chapter for more information about elder abuse.)

KINSHIP CARE: MULTIGENERATIONAL HOUSEHOLDS AND GRANDPARENTS RAISING GRANDCHILDREN

Multigenerational households are increasing in number due to the effects of economic recessions, high divorce rates, and adult children returning with their own children to the parent’s home. These family configurations are defined as households in which the “householder” lives with family members of different generations and not just with his or her own child (AARP, 2011). The number of multigenerational households is increasing at a dramatic rate. In 2008, there were 6.2 million multigenerational households in the United States (or 5.3% of all households). The economic downturn that began in 2008 is one explanation for the increase to 7.1 million in 2010 (or 6.1% of all U.S. households). This increase was greater than in the previous 8 years combined (AARP, 2011).

A related issue concerns older generations caring for younger generations. It is common for elderly parents to care for their disabled adult or chronically ill children or grandchildren. Within the African American community, increasing numbers of midlife and older women have primary responsibility for their grandchildren and great grandchildren. Typically, a family crisis precipitates grandparent caregiving. Often this occurs when the grandparent’s child (whether as a teenager, young adult, or at midlife) becomes unable to care for his or her own child or children. Moreover, the circumstances that lead to a parent’s inability to care for his or her own child are typically compounded for grandparents. Low or nonexistent rates of child support, issues with custody arrangements, low incomes, inadequate family leave policies, and a lack of social support as well as their own physical health problems often place grandparent caregivers at risk for developing further difficulties. Differences in this phenomenon are evident by cultural group, with 12% of African American children living with grandparents compared to 5.8% of Hispanics, and 3.6% of Whites.

Grandparents who provide care to a grandchild report a variety of stressors and benefits resulting from their caregiving role. Stressors often reported by kinship caregivers include worsening health, decreased financial resources, work conflict, negative changes to social interactions, and increased family conflict (Musil et al., 2000, 2008). Kinship caregivers also report many rewards, such as improved relationships with their grandchildren, the “second chance” to raise a child better than in the past, and increased social interactions resulting from engagement in their grandchild’s school and social activities (Servaty-Seib & Wilkins, 2008). Unfortunately, few programs are designed to meet the specific needs of this vulnerable group of family caregivers.

One exception to this lack of targeted services is the Kinship Care program supported by funding through the Administration on Aging’s National Family Caregiver Support Program (NFCSP; see the section “Public Policies Pertaining to Family Caregivers” for more information about the NFCSP). Local Area Agencies on Aging receive federal funding through State Units on Aging to provide supportive services to grandparent caregivers aged 60 and older. Services support the needs of grandparent caregivers and include health screenings, respite, socialization, permanency planning (i.e., developing a plan for the grandchild’s permanent living situation), family counseling, financial support, and legal support. Kinship Care programs vary by region but attempt to meet the various needs of urban, rural, and suburban caregivers and caregivers of varying socioeconomic backgrounds.

IMPACT OF CAREGIVING

PHYSICAL AND MENTAL HEALTH CONSEQUENCES

There is substantial empirical evidence indicating that the stress of providing in-home care over the long term affects a caregiver’s mental and physical health. Caregivers are more depressed than age-matched controls; exhibit deficits in physical health and depressed immunologic functioning as a result of caregiving; and use prescription drugs for depression, anxiety, and insomnia two to three times more often than the rest of the population (Adams, 2008; Dura, Stukenberg, & Kiecolt-Glaser, 1991; Haley, Levine, Brown, Berry, & Hughes, 1987; Ho, Chan, Woo, Chong, & Sham, 2009; Pinquart & Sorensen, 2003). Caregivers have been found to have impaired immune functioning (Kiecolt-Glaser, Gravenstein, Malarkey, & Sheridan, 1996) and to be in worse physical health compared to family members who are not caregivers (Stone, Cafferata, & Sangl, 1987). (For a review of the physical and mental health effects that result from providing care to a relative, see Schulz & Sherwood, 2010.)

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