25.4 The Frail Elderly

Now that we have dispelled stereotypes by describing aging adults who are active and enjoy supportive friends and family, we can turn to the frail elderly— those who are infirm, inactive, seriously disabled, or cognitively impaired.

Frailty is not defined by any single disease, no matter how serious, but by an overall loss of energy and strength. It is systemic, often accompanied by weight loss and exhaustion.

The frail are not the majority. Typically, older people are happy and active for decades, but eventually about one-third will be frail for at least a year before they die.

Activities of Daily Life

One way to measure frailty, according to insurance standards and medical professionals, is by assessing a person’s level of difficulty in performing the tasks of self-care to maintain independence. Gerontologists often assess five physical activities of daily life (ADLs): eating, bathing, toileting, dressing, and moving (transferring) from a bed to a chair. Equally important may be the instrumental activities of daily life (IADLs), which require intellectual competence and forethought. Indeed, problems with IADLs often precede problems with ADLs since planning and problem solving help frail elders maintain self-care.

IADLs vary from culture to culture. In developed nations, IADLs may include evaluating nutrition, preparing income tax forms, using modern appliances, and keeping appointments (see Table 25.1), although even within developed nations, professionals vary in their lists of IADLs (Chan et al., 2012). In rural areas of developing nations, feeding the chickens, cultivating the garden, mending clothes, getting water from the well, and making dinner might be IADLs.

There are marked cultural differences in care for the frail elderly. Many African and Asian cultures hold sons responsible for the care of their parents, and men and their wives take elders into their home, providing meals, medical care, and conversation. Indeed, many couples wanted at least one son in order to have a caregiver when they became old. [Lifespan Link: Sex selection is discussed in Chapter 3.]

Demographics have changed, and that change has an impact on filial responsibility. Some people still romanticize elder care, believing that frail older adults should live with their children, who should care for them. That assumption worked when the demographic pyramid meant that each surviving elder had many descendants, but it does not work for beanpole families.

Now some middle-aged couples, neither with siblings, may have a dozen living ancestors (four elderly parents and eight grandparents). They would be responsible for fewer elders if some died before age 85, but even more if some of the older generation remarried, or if a childless aunt or uncle was still alive. At least one of the oldest generation is likely to be frail, and several others may need daily help. If that middle-aged couple followed traditional practices, they would have several elders living with them.

Caring for the Frail Elderly

Prevention is best, but not always sufficient. Caregivers themselves are usually elderly, and they are particularly likely to have health problems and inadequate physical strength and immune systems (Lovell & Wetherell, 2011). Thus an aging spouse who cares for the other spouse is likely to need help.

Helping may be harder for a person with failing IADLs than with failing ADLs. After listing the problems and frustrations of caring for someone who is mentally incapacitated but physically strong, the authors of one overview note:

Remember variability, however. Some caregivers feel they are repaying past caregiving, and sometimes everyone else, including the care receiver, expresses appreciation. That relieves resentment, and makes caregiving easier. In fact, a longitudinal study found that when caregivers feel supported by their family, with practical help as well as emotional encouragement, stress diminishes as time goes on—even as the frail person’s needs increase (Roth et al., 2005).

The designated caregiver of a frail elderly person is chosen less for practical reasons (e.g., the relative with the most patience, time, and skill) than for cultural ones. Currently in the United States, the usual caregiver is the spouse (the wife twice as often as the husband), who often has no prior experience caring for a frail elder.

In northern European nations, most elder care is provided through a social safety net of senior day-care centers, senior homes, and skilled nurses. In some cultures an older person who is dying is taken to a hospital; in other cultures such intervention is seen as interference with the natural order.

A tradition of caregiving may explain why at least one study found that caregiving African Americans are less depressed than caregivers of other ethnicities (Roth et al., 2008). As always, ethnic generalities may obscure many individual variations: Some caregivers of every group are abusive and depressed; others are uplifted by the role.

Even in ideal circumstances, family members disagree about appropriate nutrition, medical help, and dependence. Public agencies rarely provide services unless a crisis arises. This troubles developmentalists, who study “change over time.” From a life-span perspective, caregiver exhaustion and elder abuse are predictable and preventable.

If elders require extensive care, ideally skilled people provide it, helping family members to do their part. But many elders themselves are terrified of nursing homes and suspicious of strangers. Since people tend to focus on the worst, most memorable examples of every kind of problem, from complications of pregnancy to the contexts of dying, it is not surprising that people and their families sometimes regard nursing homes as worse than death, and feel shame when a frail person enters one. However, home care can be destructive for everyone.

When caregiving results in resentment and social isolation, the risk of depression, poor health, and abuse (of either the frail person or the caregiver) escalates (Smith et al., 2011). Abuse is likely if:

• the caregiver suffers from emotional problems or substance abuse
• the care receiver is frail, confused, and demanding
• the care location is isolated, where visitors are few

Ironically, although relatives are less prepared to cope with difficult patients than professionals are, they often provide round-the-clock care with little outside help or supervision. Ideally other family members provide respite, but they may avoid visiting. Some caregivers overmedicate, lock doors, and use physical restraints, all of which are considered elder abuse. The next step may be inadequate feeding, neglect, or rough treatment.

Extensive public and personal safety nets are needed. Most social workers and medical professionals are suspicious if an elder is unexpectedly quiet, or losing weight, or injured. They are currently “mandated reporters,” which means they must alert the authorities if they believe abuse is occurring. Elder abuse may be financial, yet bankers, lawyers, and investment advisors are not trained to recognize it or obligated to respond (S. L. Jackson & Hafemeister, 2011).

A major problem is awareness: Professionals and relatives alike hesitate to criticize a family caregiver who spends the Social Security check, disrespects the elder, or does not comply with the elder’s demands. At what point is this abuse? Typically, abuse begins gradually and continues for years, unnoticed. Political and legal definitions and remedies are not clear-cut (Dong & Simon, 2011).

About 5 percent of dependent elders say they are abused, and many more are probably abused but ashamed to admit it (Cooper et al., 2008). Accurate incidence data are complicated by definitions: If an elder feels abused, but a caregiver disagrees, who is right? Abused elders are often depressed, ill, and suffering from cognitive disorders, but that neither proves abuse nor absolves abusers (Dong et al., 2011).

Sometimes caregivers become victims, attacked by a confused elderly person. As with other forms of abuse, the dependency of the victim makes prosecution difficult (Mellor & Brownell, 2006). Sometimes secrecy, suspicion, and family pride keep outsiders away. Social isolation makes abuse possible; fear of professionals may makes problems worse.

Fortunately, outright abuse is now rare in nursing homes. Laws forbid the use of physical restraints except temporarily in specific, extraordinary circumstances. Some nursing homes provide individualized, humane care, allowing residents to decide what to eat, where to walk, whether to have a pet. In the United States, nursing homes are frequently visited by government inspectors to “stop dreadful things from happening” (Baker, 2007).

In North America good nursing-home care is available for those who can afford it and know what to look for. Some nonprofit homes are subsidized by religious organizations, and these may be excellent. In some European nations, the federal government subsidizes care for anyone (rich or poor) who needs it. Good care allows independence, individual choice, and privacy. As with day care for young children, continuity of care is crucial: An institution with a high rate of staff turnover is to be avoided.

The training and the workload of the staff, especially of the aides who provide frequent personal care, are crucial: Such simple tasks as helping a frail person out of bed can be done clumsily, painfully, or skillfully. The difference depends on proficiency, experience, and patience—all possible with a sufficient number of well-trained and well-paid staff. Currently, however, most front-line workers have little training, low pay, and many patients—and almost half leave each year (Golant, 2011).

Quality care is much more labor-intensive and expensive than most people realize. The average annual nursing home cost in the United States in 2011 was $85,775 for a private room. Variations are dramatic, primarily because of the cost of personnel. In Alaska, it costs $177,755 a year for a room shared with one other person; in Louisiana, it’s only $50,370 (John Hancock Life & Health Insurance Company, 2011). Most people think that Medicare, Medicaid, or long-term insurance covers the entire cost—another misconception.

In the United States, the trend over the past 20 years has been toward a lower proportion of those over age 60 residing in nursing homes (in 2011 about 1.3 million people nationwide), and those few are usually over 80 years old, frail and confused, with several medical problems (Moore et al., 2012).

Another trend is toward smaller nursing homes with more individualized care and nurses and aides who work more closely together, especially in homes designated as Eden Alternative or Green, named after exemplars that stress individual autonomy (Sharkey et al., 2011).

Although 90 percent of elders are independent and live in the community at any given moment, half of them will need some nursing-home care, usually for less than a month after a few days in a hospital. Some need such care for more than a year, and a very few stay for 10 years or more (Stone, 2006).

An ageist stereotype is that older people are either completely capable of self-care or completely dependent on others. In actuality, everyone of every age is on a continuum, with some self-care and yet needing some help.

Once that is understood a range of options can be envisioned. Remember the study cited in Chapter 24 that found that dementia is less common in England than it used to be? That study also found that the percentage of people with neurocognitive disorders in nursing homes has risen, from 56 percent in 1991 to 65 percent in 2011, primarily because of a rise in the number of oldest-old women in such places (Matthews et al., 2013).

That means that more British elderly who need some care are now in the community. This is good news for the elderly, for developmentalists, and for the community, because aging in place, assisted living, and other options are less costly and more individualized than institutions.

The number of assisted-living facilities has increased as nursing homes have decreased. Typically, assisted-living residences provide private apartments for each person and allow pets and furnishings as in a traditional home. The assisted aspects vary, often consisting of one daily communal meal, special transportation and activities, household cleaning, and medical assistance such as supervision of pill-taking, monitoring of blood pressure or diabetes, with a nurse, doctor, and ambulance at the ready if needed.

Assisted-living facilities range from group homes for three or four elderly people to large apartment or townhouse developments for hundreds (Golant, 2011). Almost every state, province, or nation has its own standards for assisted-living facilities, but many such places are unlicensed. Some regions of the world (e.g., northern Europe) have many assisted living options, while others (e.g., sub-Saharan Africa) have almost none.

Another form of elder care is sometimes called village care. Although not really a village, it is so named because of the African proverb, “It takes a whole village to raise a child.” In village care, elderly people who live near each other pool their resources, staying in their homes but also getting special assistance when they need it. Such communities require that the elderly contribute financially and that they be relatively competent, so village care is not suited for everyone. However, for some it is ideal (Scharlach et al., 2012).

Another option is for elders to remain at home or at a home of a family member. While these arrangements can be rewarding for the caregiver, they can also be stressful. Caregivers, and the elders they care for, often benefit from respite care. For example, the caregivers may get a temporary break when the care receiver has a short stay in an assisted-living community or receives intensive short-term in-home care provided by a professional. Either form of respite care can help restore the caregiver and help them better weather the stress of managing the welfare of their family member.

Overall, as with many other aspects of aging, the emphasis in living arrangements is on selective optimization with compensation. Elders need settings that allow them to be safe, social, and respected, and as independent as possible. Housing solutions vary depending not only on ADLs and IADLs, but also the elder’s personality and social network of family and friends. One expert explains: “There is no one-size-fits-all set of optimum residential activities, experiences, and situations” (Golant, 2011).

We close with an example of family care and nursing-home care at their best. A young adult named Rob related that his 98-year-old great-grandmother “began to fail. We…thought, well, maybe she is growing old” (quoted in L. P. Adler, 1995, p. 242). All three younger generations decided that she should move to a nearby nursing home, leaving the place she had lived in for decades. She reluctantly agreed.

Fortunately, this nursing home did not assume that decline is always a sign of “final failing.” (Rob’s phrase). The doctors discovered that her pacemaker was not working properly. Rob tells what happened next:

This story contains a lesson repeated throughout this book. Whenever a toddler does not talk, a preschooler grabs a toy, a teenager gets drunk, an emerging adult takes risks, an adult seeks divorce, or an older person becomes frail, it is easy to conclude that this is normal. Indeed, each of these possible problems is common at the ages mentioned and may be appropriate and acceptable for some individuals.

But none should simply be accepted without question. Any one of these should alert people to encourage talking, sharing, moderation, caution, communication, or self-care. The life-span perspective holds that, at every age, people can be “strong, spirited, and energetic.”