Family Caregiving in Aging Populations

T. Hill

• Publisher: Palgrave Pivot
• Year: 2015
• Print ISBN:
  9781349506569
  9781137520678
• eBook ISBN:
  9781137511560
• Topic: Psychologie
• Subtopic: Politique publique

Family members are increasingly likely to provide caregiving for older adults as the US population ages. This book summarizes what we know about caregiving by spouses and other intimate partners, adult children, siblings, grandchildren, friends, and other relatives, as well as by members of racial, ethnic, and sexual minority groups.

1

Social Context of Family Caregiving

Abstract: The historical and current contexts of caregiving in later life in the United States are briefly discussed. A short description of the types of health problems typical in the elderly and affecting their need for care is included. This section also describes the occurrence of needing or giving care currently and future predictions of its prevalence. The factors that affect provision of care and the consequences of furnishing that assistance are also briefly reviewed.

Keywords: aging; caregiving; disabilities; elderly; family

Hill, Twyla J. Family Caregiving in Aging Populations. New York: Palgrave Macmillan, 2015. DOI: 10.1057/9781137511560.0005.

Although family members have always had the primary responsibility for providing assistance to older family members, caregiving in later life did not become a widespread phenomenon in the United States until a few generations ago.¹ Until the middle of the twentieth century, a very small percentage of Americans lived 60 years or longer, and those that did tended to be healthy and vigorous until shortly before they died (Dwyer and Coward 1992). For example, in 1900, life expectancy at birth was 48 years for Whites and 33 years for Blacks; by 1950, it was 69 years for Whites and 61 years for Blacks. In 1950, however, those individuals who were already 65 years old could expect to live another 14 years (National Center for Health Statistics 2007). Therefore, few people needed care in later life before the latter part of the twentieth century.

In the past, if older people lived with adult children, they usually did so as household heads with control over other family members, not as dependents (Dwyer and Coward 1992; Hareven 1996). Parents moved in with children only in circumstances of dire need (Hareven 1996). People who did need care generally received it for short periods of time; individuals did not live past events like heart attacks or through lengthy periods of chronic illnesses (Dwyer 1996). Care was typically provided by spouses or children (Hareven 2001), just as it is now, but caring for the ill elderly was not a common or ongoing experience (Dwyer and Coward 1992). Higher fertility rates meant a pool of possible child caregivers was available, but generally only one child (usually a daughter) provided care (Hareven 2001), which meant that each sibling had a smaller chance of being responsible for care.

Also, life expectancy did not differ between men and women in the United States until a few generations ago. Only in the middle of the twentieth century did women’s life expectancy begin to exceed men’s (National Center for Health Statistics 2007). Prior to the 1950s, therefore, the proportions of older men and women were about equal. Adult daughters generally provided care (Hareven 2001) but it was provided to fathers as often as to mothers (Dwyer and Coward 1992). Now women can expect to live quite a bit longer than men. For White women, life expectancy at birth is 81 years, for White men 76 years, for Black men 71 years, and for Black women 78 years (National Center for Health Statistics 2014). Since women usually outlive men and have higher rates of health problems than men, both care recipients and care providers are often female. The gendered nature of caregiving means that older married women can expect to provide care for their spouses, and then receive care from their middle-aged or older daughters. It also means that these daughters can expect to care for their parents, perhaps their parents-in-law, and then their husbands.

Current context of family caregiving

Although Americans tend to think that we as a society are deserting our elderly in institutions, evidence does not support this stereotype (Brewer 2002). Rates of nursing home utilization have been decreasing since the 1970s for Whites but slightly rising for Blacks (National Center for Health Statistics 2007). The increase in nursing home residence for Blacks probably has more to do with the increasing ability to afford paid care rather than with being abandoned by family members. Also, relatives may still help with care after institutionalization (Gaugler, Anderson, and Holmes 2005), showing that using paid care and abandonment are not synonymous. Being in a nursing home is less common for members of minority groups overall than for Whites, however (Dilworth-Anderson, Williams, and Gibson 2002). Only 4% of Americans 65 and older are in long-term care facilities; these percentages are age-related, with only 1% of those 65–74 years old and 15% of those 85 years and older in a nursing home (Federal Interagency Forum on Aging-Related Statistics 2010:58). Therefore, most elders are still living in the community, even those seniors who need assistance.

TABLE 1.1 Persons 65 years and older—living arrangements, 2008

Most older adults are living with someone else. Almost two-thirds of people 65 years old and older are living with spouses or other family members, while a little over a quarter are living alone (U.S. Census Bureau 2011:Table 35). Over 5% of people 65 years old and older are living with a parent (U.S. Census Bureau 2011:Table 35). Given the age that parent must be, it seems likely that the elderly child is providing care for his or her parent. People who live in the same house are convenient potential sources of assistance.

In sum, the majority of help and health care for the elderly is provided by family members. Roughly two-thirds of those older people still living in the community receive only unpaid assistance from family members or friends, also known as informal care. Paid care, often called formal care or formal services, is almost always a supplement to informal care (He, Sengupta, Velkoff, and DeBarros 2005). The use of paid care is associated with income; those with more resources are more likely to use formal services (He et al. 2005).

Whites also are more likely to use formal care than people of color (He et al. 2005). Older people of color are more likely than Whites to experience disability, but are not more likely to receive help from children and are less likely to live in nursing homes (Dilworth-Anderson et al. 2002; Dwyer 1996). Some research finds that Native Americans and Blacks are particularly unlikely to use paid help (Dilworth-Anderson et al. 2002). Other research finds that Latino/as and Asian Americans may be more likely than Whites and Blacks to have informal rather than paid care (see Uhlenberg and Cheuk 2008:20), so it is unclear which members of minority groups are most likely to rely on family members. Older gays, lesbians, and bisexuals also tend to be in worse physical and mental health than older heterosexuals (Fredriksen-Goldsen, Kim, Elmlet, Muraco, Erosheva, Hoy-Ellis, Goldsen, and Petry 2011). They are less likely to be partnered, and may have less access to other types of familial support as well (Fredriksen-Goldsen et al. 2011), leading to concerns about how much or if informal caregiving will be available to people who are members of sexual minority groups. However, many bisexuals, gays, and lesbians have supportive chosen family and friend networks to which they can look for care (Muraco and Fredriksen-Goldsen 2011). In general, as numbers of older people increase, we can expect that family members will continue to provide most assistance. If health care costs continue to rise, we should see even more of the healthcare and caregiving burden falling on family members.

Family care is usually provided by one person, called the primary caregiver, who helps with ADLs and/or IADLs, and may manage services provided by paid help (Dwyer 1996). Sometimes other family members also provide aid to the care recipient, and these people usually are called secondary caregivers. The primary caregiver usually coordinates all assistance provided, either formal or informal (Dwyer 1996). He or she has overall responsibility for the care, even though other people may provide as much assistance (Dilworth-Anderson, Williams, and Cooper, 1999). Other models of caregiving are possible, such as a partnership style where two people contribute equally (Brewer 2002). Research has been focused on primary caregivers, however; less is known about additional people who help and other models of providing care (Brewer 2002; Dilworth-Anderson et al. 1999).

Perhaps few studies have looked at secondary and other caregivers because primary caregivers often do not have help. Less than half (47%) of primary caregivers for older adults say that they receive assistance in caregiving (Wolff and Kasper 2006:352; also see Johnson and Wiener 2006). Spouses particularly provide care alone; over two-thirds of spousal caregivers do not receive any assistance (Wolff and Kasper 2006). The percentage of sole caregivers increased from 1989 to 1999 (Wolff and Kasper 2006), which suggests that each individual caregiver will have more responsibility in the future.

Caregiving takes time, and often it is a long-term commitment. The average amount of care an individual provides is 21 hours per week, but there is wide variation. Almost half (48%) of caregivers report providing 8 hours or less of help per week, while 17% report over 40 hours (National Alliance for Caregiving 2004:6). The majority (75%) give help every day on average (Wolff and Kasper 2006:351). Many people provide care for a long time; 46% of caregivers report having done so for over four years, while only 18% say they have provided care for less than a year (Wolff and Kasper 2006:351).

The amount of care provided probably increases over the period of time for which a care recipient needs help, and cross-sectional reports do not capture that information. In the early stages of providing assistance, a caregiver may help occasionally with transportation to the doctor’s office, for example, while in the later stages he or she may be spending hours with the care recipient, doing tasks like helping with feeding or bathing. It seems likely that most caregivers transition from lighter amounts of help to heavier amounts, less responsibility to more, and shorter periods of time to longer periods (see Hogan and Hogan 2009). The average length of caregiving is over four years (National Alliance for Caregiving 2004:7), so most caregivers probably experience fairly challenging situations. Therefore, providing care is an important stage in the later years of the life course for many people. It is time-consuming, like having another job, and has consequences which are described later in this chapter.

What affects the need for care?

Usually, we think about the care that older people need rather than the care they provide. Estimates vary regarding what percentage of older adults needs assistance. Approximately 10% of older persons still living at home have disabilities that require help at levels comparable to care in institutions (Dwyer and Coward 1992), which gives us a fairly low estimate. For example, in 2002, about two million older people were severely disabled and not living in institutions (Johnson and Wiener 2006). If we define needing care as an inability to perform at least one ADL or IADL, however, a higher proportion of older persons needing care is generated. “In 2004–2005, the percentage of older adults with limitation of activity ranged from 25% of 65–74 year olds to 60% of adults 85 years old and over” (National Center for Health Statistics 2007:46). A realistic estimate of the percentage that needs care is approximately one-fifth to one-third of those 65 years and older (Dwyer and Coward 1992). In other words, between 7,560,000 and 12,474,000 older Americans needed assistance in 2008 (U.S. Census Bureau 2011). These numbers will increase in the near future. The segment that is 85 years and above is the fastest growing part of the elderly population (Himes 2001), and they “have the highest rates of disability” and need the most help (Jacobsen, Kent, Lee, and Mather 2011:3).

Life expectancy and disability rates

Two important factors affecting the number of older people who need care are life expectancy and disability rates. Increasing life expectancy leads to the growth of all age groups of older adults in the population (Himes 2001), raising the numbers of people likely to need assistance. The proportion of elderly who are members of a minority group is growing as well (Alecxih 2001; Angel and Hogan 1992). Older people who are members of racial and ethnic minority groups rose from 16% of the elder population in 2000 to 21% by 2001 and are predicted to be 28% in 2030 (Administration on Aging 2012). Since older people of color are more likely to need help than Whites, this trend also increases the number needing care. For example, Latino/as have higher life expectancies at birth than Whites (Green 2005). Blacks have lower life expectancies at birth than Whites (Green 2005) but if Blacks live to 85, they have higher life expectancies (Hummer, Benjamins, and Rogers 2004; Mouton 1997). However, the disability rates of both these minority groups are higher than for Whites (Hummer et al. 2004; Santiago and Muschkin 1996), so at older ages, both Blacks and Latino/as probably are more likely to need help. Native Americans also have higher rates of disability (Fuller-Thomson and Minkler 2005). Unfortunately, reliable information for Asian Americans is not available (National Center for Health Statistics 2007). Some studies indicate that disability rates for Asian Americans are similar to those for Whites (Hummer et al. 2004). Other studies suggest their disability rates are higher than Whites, but the evidence is not conclusive (Dilworth-Anderson et al. 2002). In addition, members of most minority groups tend to have lower socioeconomic status than Whites. Disability rates are higher for those in poverty compared to people who are above the poverty line (National Center for Health Statistics 2007), so that people with lower socioeconomic status are more likely to need assistance.

Increasing longevity is also related to a rising incidence of chronic diseases affecting the need for help with ADLs and IADLs (Coward, Horne, and Dwyer 1992). Chronic illness is often accompanied by disabilities, and 80% of older adults have at least one chronic health problem; 50% have two or more (He et al. 2005:54). The occurrence of health conditions rises steeply with advancing age. The risk of having a heart or circulatory condition, for example, is 54% higher for persons 75 or older than for those 65–74 years old (He et al. 2005:54). Arthritis, hypertension, heart disease, strokes, diabetes, cancer, osteoporosis, and sensory impairments (such as vision or hearing loss) all are common health problems for older people. Rates of particular conditions vary by sex, race/ethnicity, age, income, and education (He et al. 2005:54–57). Almost 25% of Blacks 65 years and older report needing assistance with everyday activities, compared to 21% of Latino/as and 15% of non-Hispanic Whites (He et al. 2005:61). About 40% of people 80 years and over need assistance, and women are more likely than men at older ages to need help because they have higher rates of disability (He et al. 2005:60, 61). The highest rates of disability and impairment are found in the oldest-old (85 years and older) (Brault 2012). As impairment levels increase, people are more likely to receive care from family members (Coward, Cutler, and Mullens 1990). Increasing longevity therefore leads to the prediction that higher numbers of older adults will need assistance in the future.

FIGURE 1.1 Percentage of people 65 years and older with certain chronic conditions by sex, 1999–2000

Source: He et al. 2005:56.

FIGURE 1.2 Percentage of people 65 years and older reporting good to excellent health, 2006–2008

Source: Federal Interagency Forum on Aging-Related Statistics 2010:29.

Cognitive limitations are associated also with increasing longevity. Although most older Americans will not experience cognitive impairment, the prevalence of dementia increases with age. Up to 7% of the elderly will have dementia, with the two most common types being Alzheimer’s disease and vascular dementia (Watari and Gatz 2002). Rates of Alzheimer’s disease differ by sex, although women’s greater longevity may be a factor in their higher rate (He et al. 2005). Men and Blacks are more likely to have vascular dementia (Watari and Gatz 2002). Some studies indicate that Japanese Americans also are more likely to have vascular dementia (Dilworth-Anderson and Gibson 1999). In addition, some evidence suggests that Native Americans are the least likely and Blacks the most likely to suffer from dementia, but in general reliable information is lacking for members of minority groups (Dilworth-Anderson and Gibson 1999; also see Manly and Mayeux 2004). Currently, over 70% of those with Alzheimer’s disease are cared for at home by family and friends (He et al. ...

Table of contents

• Cover
• Title
• 1  Social Context of Family Caregiving
• 2  Spousal and Intimate Partner Caregiving
• 3  Adult Child Caregiving
• 4  Caregiving by Other Relatives, Secondary Caregivers, and Members of Minority Groups
• 5  Current Policy Regarding Caregiving and Policy Implications
• References
• Index