Elder Care: Family Decisions, Abuse, and Legal Protections

Introduction: The Growing Elder Care Challenge

The baby boom generation has begun its march into the silver years — the retirement years. These years in a person's life also represent the period when the body's betrayal of the mind, or vice versa, often results in an individual's inability to care for him- or herself. These years have come to be referred to as the elder care years, because caring for the elderly frequently becomes the responsibility of younger family members or involves the institutionalization of loved ones. In either situation, the problems families face and the choices they must consider can be difficult and emotionally overwhelming. In some cases, caring for an aging parent could mean giving up a career, moving to a different part of the country, or returning home after years away. Those are perhaps some of the less emotional choices made early in the elder care process. Later, depending on the nature of the elderly person's condition, families may face decisions about bringing help into the home or placing the loved one in a care facility.

When faced with these kinds of decisions, families must consider a great deal of information before acting. This essay explores the conditions and information a family needs when confronted with the choices surrounding the care of elderly loved ones. Some of this information is emotionally difficult and may be new and troubling to many readers. However, the aging population in America is growing daily, and its members are entering the final stage of life. Rashmi Gupta and Vijayan K. Pillai (2002) cite census bureau reports that put the concern of an aging American population into perspective (p. 565):

"One of the most notable demographic trends in American society today is the fast pace of population aging. According to the 2000 census, there were nearly 37 million Americans older than 65 years of age. This population is expected to more than double and reach 82 million by the mid-21st century. As baby boomers begin attaining elderly status by reaching ages 65 or older, the number of elderly will nearly double from 40.4 million to 70.1 million between 2011 and 2030" (p. 565).

The goal should be one that affords the loved one as much love, comfort, peace, and care as possible through the years during which they transition from life to death.

Disease and Debilitation Warranting Elder Care

The range of diseases and debilitating conditions that cause an elderly relative to need care is broad, spanning from severe arthritis and dementia to Alzheimer's disease and other conditions that leave aging adults unable to adequately care for themselves. The activities of daily living (ADLs) are those day-to-day functions — bathing, dressing, preparing meals — which, when an individual can no longer perform them due to physical limitation or illness, require the assistance of others. When unable to perform these functions, elderly people find themselves relying on relatives or outside social agencies for help.

Paula B. Doress-Worters (1994) discusses the role of women and how their roles in a changing society have been evaluated in terms of employment, marriage, and child rearing (p. 597). She explains that the concept of elder care as a facet of the traditional role of women evolved from the post-World War II nuclear family model — centered on marriage, home, and children — to the 1960s model that added employment. Today, elder care has become yet another element layered onto women's responsibilities (p. 597). While women likely performed elder care in earlier eras, the emergence of the baby boom generation — representing millions of Americans who will move from employment to Social Security retirement benefits in the next several years — intensifies that burden enormously. Doress-Worters explains that the roles of women prior to the 1960s were classified by a specific division of labor, and adding elder care to that defined routine was, in a sense, mixing apples and oranges by the social definitions of that era (p. 597).

Since the 1960s, the division of labor by which women were defined has broadened considerably. Today, however, families face a wide array of choices and decisions. Making those choices means confronting the hard fact that a loved one is suffering from an irreversible disease and that the person family members once knew is slowly slipping away. These are difficult times, as families are forced to consider altering their own lives in addition to managing the cost and intrusion of outside help (Thorslund & Parker, 1994, p. 29). For many families, resources are limited, and they must turn to private and public welfare sectors to meet the needs of their ill family members.

In the United States, managed care has dramatically altered healthcare. Elderly people are no longer permitted to cycle in and out of acute hospital care for conditions that cannot be medically improved (Birenbaum, 1999, p. 59). If an elderly person suffers from Alzheimer's disease, dementia, or terminal cancer, the patient must seek alternative levels of care other than inpatient hospitalization, which is reserved for conditions that can be positively resolved. This drastically reduces the choices available to families.

The remaining options include long-term nursing facilities, which are generally not covered by the elderly person's Medicare (Birenbaum, 1999, p. 14). Another choice is home care, in which an individual comes into the home to help with laundry, cleaning, and meal preparation (Birenbaum, 1999, p. 23). However, the number of hours the in-home assistant may provide and the activities they are permitted to perform are strictly governed by Medicare and Medicaid. The in-home health care assistant — who is not a nurse or a certified nursing assistant (CNA) — is permitted a certain number of hours performing these household responsibilities. Those hours do not count toward the hours that can be provided to an individual with a debilitating condition who requires a visiting nurse or CNA.

Each alternative to nursing home care that allows an elderly person to receive in-home care with financial assistance carries financial and health milestone requirements that establish both the medical and financial need for that assistance. In some states, a Medicare-supported program called PACE allows family members to act as paid caretakers of their relatives. This is no easy decision: family members are effectively giving up much of their own lives to become the primary caregiver to an ailing parent whose condition will only continue to deteriorate, with any improvements being temporary and ultimately ceasing altogether.

Eventually, as the elderly person's health worsens, it becomes necessary to consider a nursing home, long-term care facility, or hospice care. Any of these options may mean the family has less direct involvement in their loved one's care and cannot be present around the clock. They must then rely on the institutional system of elder care to provide for a person who is by this time completely dependent on others for most or all ADLs. In these circumstances, families must be keenly aware of the risk of elder abuse, which appears to be prevalent throughout long-term and skilled nursing facility settings and even in home care settings involving family members.

Elder Care and Abuse

Elder abuse occurs across every facet of elder care and often goes unreported. Elderly individuals whose condition has reduced their contact with the outside world are particularly vulnerable: their world revolves around the interior of their home, which is precisely where the abuse occurs. Even an elderly person living in a major metropolitan city is just as likely to experience ongoing abuse at the hands of family members or assigned caregivers as are their suburban or rural counterparts. Ruth E. Mathias and A.E. Benjamin (2003) report that social workers are becoming increasingly concerned about elder abuse in long-term care settings (p. 174). Their study reveals that Medicaid-related agency care shows no marked increase in abuse compared with private agencies, but that limited social worker oversight makes it difficult to draw firm conclusions from available data (p. 174). Mathias and Benjamin also found that direct care provided by family members was demonstrably less abusive to the elderly than services rendered by state and private providers (p. 174).

The most frequently reported consumer complaints concerned difficulty scheduling services, language barriers, and high caregiver turnover (p. 174). These issues matter greatly because elderly people suffering from dementia need consistency and familiarity in their daily lives. Disruption in care routines can have an adverse impact on a patient's behavior and response to caregiving. The elderly often respond to conditions they cannot control with combative behavior, resisting the services of the caregiver. Howard Litwin and Sameer Zoabi (2004) report that one of the biggest contributors to elder abuse is fatigue or stress experienced by the caregiver, which reduces the caregiver's ability to cope with the extreme physical and mental demands of caring for an elderly person (p. 133).

This finding adds a logical dimension to Mathias and Benjamin's observation that family caregivers showed fewer instances of abuse (p. 174). A family member is likely to draw on a deeper level of patience and caring when the elderly person's dementia leads to resistance or combative behavior. Family members have an emotional connection to the patient and a long history of familiarity with the person, making them more attuned to the patient's physical ailments and behavioral changes. A family member's response to difficult incidents will naturally reflect those familial ties.

For these reasons, family caregivers represent the best primary solution to elder care, and research in this area supports expanding programs that compensate family caregivers and allow families to choose relatives as first-line care providers. Just as family leave policies support new parents, there is a strong case for employer-provided benefits that compensate family members who take time away from work to provide an aging relative with full-time care.

Another area of the Litwin and Zoabi study that showed a marked increase in abuse was the intensity of ADL dependency (p. 133). That is, when the caregiver's workload was intensified by the patient's inability to perform many or all ADLs independently, instances of elder abuse were higher. Litwin and Zoabi cite Pritchard (1993), who argued that elder abuse represents a personal failure — reflecting an individual's inability to manage their own stress when challenged by the elderly person's level of neediness (p. 133). The needs of an elderly person can interrupt the sleep and daily routines of the caregiver in ways that impair judgment and decision-making.

Modernization also plays a role in elder abuse, Litwin and Zoabi report (p. 133):

"Based on a comparative review, Kosberg and Garcia (1995) concluded that socioeconomic problems stemming from modernization are a decisive factor behind the increasing rates of elder abuse in developing societies. Given the geographic mobility and individualism characteristic of modern society, younger generations no longer feel obligated to venerate the older generation. On the contrary, the instrumental bases of exchange that dominate modern society act to weaken the traditional family safety net and increase the risk of vulnerability, neglect, and abuse of elderly people" (p. 133).

When caregivers cannot relate to the sociocultural traditions of the patient, the risk of abuse is heightened (Litwin & Zoabi, 2004, p. 133). Litwin and Zoabi cite the example of elderly abuse among Arab Israelis, whose break with tradition as a result of their social status creates an instrumentalized kinship — a relationship in which the exchange between the elderly and the caregiver holds pragmatic rather than traditional value (p. 133). This shift detracts from emotional bonding and reduces the caregiver to something closer to a paid stranger. The farther removed the caregiver is from genuine familial ties with the patient, the greater the potential for abuse.

Gupta and Pillai highlight the problem of institutional settings by noting that long-term care facilities have a 93% national average staff turnover rate (p. 133). This extraordinary figure reflects the stress employees associate with the work. There is perhaps no greater challenge in institutional healthcare than meeting the daily physical needs of patients in long-term settings. Many patients have suffered strokes, leaving them unable to assist with the simplest tasks, such as washing themselves. In a society that places enormous emphasis on youth and healthy bodies, younger caregivers may have a particularly adverse reaction to caring for the elderly person's frail and failing body.