15.4 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, very ill, seriously disabled, and/or cognitively impaired. They are not the majority, but they are also not rare: eventually about one-third of older people will be frail for at least a year before they die.

Activities of Daily Life

The crucial indicator of frailty, according to insurance standards and medical professionals, is the inability to perform 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. It is more difficult to list IADLs because they 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 15.1). In rural areas of other nations, feeding the chickens, cultivating the garden, mending clothes, getting water from the well, and making dinner might be considered IADLs.

Everywhere, the inability to perform IADLs makes people frail, even if they can perform all five ADLs. In 2003, the Canadian Community Health Survey reported that only 6 percent of senior men and 7 percent of senior women who were living in private households needed some level of assistance with their daily living (ADLs) (Gilmour & Park, 2006). As both a cause and a consequence, more of the elderly are living in the community rather than in assisted-care facilities.

Whose Responsibility?There are marked cultural differences in care for the frail elderly, as already mentioned. As is true in many non-Western cultures, there is a strong cultural ideology in many African and Asian nations that values filial responsibility. As an example, India passed a law in 2007 making it a crime to neglect one’s elderly parents, and in 2012 the Chinese government revised the Law of Protection of Rights and Interests of the Aged to make it mandatory for adult children to visit and support their aged parents. The law specifically states that family members must visit their parents who are 60 and older “often,” although “often” has not been defined.

Chinese courts have not hesitated to enforce the new law. For example, the People’s Court in Beitang district ordered a woman and her husband to visit the woman’s 77-year-old mother at least twice a month and on at least two of China’s national holidays. If they fail to do so, the couple may be fined (Agence France Presse, 2013).

This new law has come into force as China faces the implications of a growing and significant older population; almost 14 percent of the country’s population is older than 60. At 194 million, China’s senior population is more than 5.5 times greater than Canada’s total population.

Demographics have changed in developed nations. Gerontologists note that one middle-aged couple, neither with siblings, might be responsible for four elderly parents and eight grandparents—fewer if some died, but more if some divorced and remarried. At least one of those 12, and maybe several, are likely to need intense caregiving.

Preventing FrailtyGovernments, families, and aging individuals all have a role to play in preventing frailty. To take a simple example, leg muscles weaken in everyone in old age, but the individual, the social network, and the larger community all influence whether weakened leg muscles lead to frailty. Fear of falling might make a person walk rarely, preferring to stay in bed. Other people might encourage frailty: Perhaps an overly solicitous caregiver brings meals and an adult child buys a large-screen TV with remote control for the bedroom. The macrosystem and exosystem play a role too: The physical environment might make walking outside hazardous or the home might have been constructed with many stairs.

Getting Around This man’s weakened leg muscles don’t mean a loss of independence. With his mobile wheelchair and his chihuahua by his side, he heads out every day for exercise, fresh air, and social interaction.

JEFF GREENBERG/PHOTO EDIT

To prevent frailty, the person could exercise daily, first in bed, then lying on the floor, then with machines to increase strength and daily excursions. Family members, friends, and volunteers could walk with that leg-weakened person on pathways that the local government has built to be safe and pleasant. Someone could make sure the person has a sturdy walker, and public funds could underwrite the purchase. Personal trainers and/or physical therapists could help, paid by the individual, the family, or public health care. Thus, all three—the elder, the family, and the community—could prevent or at least postpone frailty.

Consider another example, this one not theoretical:

In this example, you can see that both the community (those five years without treatment for hypertension and diabetes, both known to impair cognition) and the family (making excuses, protecting him) contributed to his reaching a stage of neuro-cognitive disorder that could have been delayed, if not prevented altogether.

The man himself was not blameless. If he had recognized his condition, he would have realized that travelling to Colombia was the worst thing he could do: Disorientation of place is an early symptom of neurocognitive disorder, and changing one’s physical (or geographic) location can make the problem worse. With many neurocognitive disorders, which cause severe IADL disability, as well as with all other kinds of physical and mental impairment, delay, moderation, and sometimes prevention are possible.

Caring for the Frail Elderly

The caregiver of a married frail elderly person is usually the spouse, who is also elderly (Pinquart & Sörensen, 2011). If an impaired person has no partner, usually siblings or adult daughters become caregivers. Less often, sons and daughters-in-law or adult grandchildren provide care.

Using a representative sample of 300 Quebec elders living at home, Réjean Hébert and colleagues at the University of Sherbrooke found that 70 to 80 percent of care for home-based, elders with disabilities was provided by informal caregivers such as family members (Hébert et al., 2001). This finding was extended to the country as a whole by a more recent report from Statistics Canada, which noted that in 2007 almost 70 percent of eldercare in Canada was provided by close family members (Cranswick & Dosman, 2008). Since women tend to live longer than men, caregivers most commonly reported caring for their mothers (37 percent—a rate three times more often than for their fathers) (see Figure 15.10).

FIGURE 15.10 Lending a Hand Caregivers over the age of 45 usually take care of frail parents, spouses, and in-laws, but they may also care for friends, neighbours, other relatives, and others.

Sometimes—usually when the elderly person needs extensive daily care—home health aides or nursing homes (which will be discussed later) are used. Families are still needed to coordinate, supplement, and sometimes fund the care. Professional caregivers are not a substitute for family care; instead they are part of a team that is necessary when family members are overwhelmed.

Caregiving Family support is evident here, as (left) the older sister (Lillian, age 75) escorts the younger sister (Julia, age 71) to the doctor and as (right) Susan’s father feeds her mother at a surprise family reunion that Susan organized. This event lifted Susan’s mother’s spirits, improved her appetite, and created wonderful memories for the whole family.

NICOLE BENGIVENO/THE NEW YORK TIMES/REDUX
JEN WEN CHUN

Remember diversity, however, especially in attitudes, beliefs, and cultural practices. In northern European nations, most elder care is provided through a social safety net of senior daycare centres, 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. As mentioned earlier in the chapter, traditionally in Asian nations, a son’s wife provides elder care. In a 1990s study in South Korea, for instance, 80 percent of those with neurocognitive disorder were cared for by daughters-in-law and only 7 percent by spouses. In contrast, among Americans of Korean descent with neurocognitive disorder, 19 percent were cared for by daughters-in-law and 40 percent by spouses, with some of the rest in nursing homes (which almost never happened in Korea) (Youn et al., 1999). That is changing, in Korea and in other Asian nations.

Even with professional help, family caregivers experience substantial stress, although according to a longitudinal study, the stress is less when they receive practical help as well as emotional encouragement from other family members, even as the frail person’s needs increase (Roth et al., 2005). Conversely, without help, family caregivers experience less health and more depression. The stress is manifest in various illnesses, in part because the immune system weakens. This is particularly true when caregivers themselves are old (Lovell & Wetherell, 2011). After listing the problems and frustrations of caring for someone who is mentally incapacitated but physically strong, the authors of one overview note:

Even in ideal circumstances with cultural and community support, family caregiving can result in problems. For instance, if one adult child is the primary caregiver, other siblings may feel relief, and if the caregiver requests their help, they may resent being told what to do. On the other hand, if the parent develops a closer relationship with the primary caregiver, the other siblings may experience jealousy. In addition, care receivers and caregivers may disagree about schedules, menus, doctor visits, and so on. Resentments on both sides can disrupt mutual affection and appreciation.

In every culture, emotional and physical needs, as well as expectations, vary because of past experiences and current personalities. Some older people would rather accept help from a paid stranger than from a son or a daughter; others insist on the opposite. Some families admire caregivers and help them often; others isolate and resent them. 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 feel burdened by the role; others are uplifted.

Developmentalists are trained to see “change over time,” as Chapter 1 explains. From a life-span perspective, frailty should be anticipated and postponed, and potential challenges, such as caregiver exhaustion, should be addressed early on. However, in many nations, public policy and cultural values create situations that place undue burdens of elder care on the family (Seki, 2001).

Developmentalists, concerned about the well-being of people of all ages, advocate more help for families caring for frail elders at home (see Fortinsky et al., 2007; Stone, 2006). Spouses, in particular, need some relief from full responsibility, including more free time (via professional providers or family members who take over on a regular basis) and better medical attention (usually with visiting nurses who provide medical and psychological care for both caregiver and care receiver). Such measures can make home care tolerable, even fulfilling, for caregivers. Fortunately, these developmental concerns are now shared by many members of the public: Elderly people are far more likely to age in place than was true 20 years ago, and help is more available (Lovell & Wetherell, 2010).

Elder AbuseWhen 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). The World Health Organization (WHO) defines elder abuse as: “A single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust that causes harm or distress to an older person” (WHO, 2002). Abuse is likely if the caregiver suffers from emotional problems or substance abuse, if the care receiver is frail and demanding, and if care location is an isolated place where visitors are few and far between.

Elder abuse can take several forms. Caregivers may resort to overmedication, locked bedroom doors, and physical restraints to cope with difficult patients. The next step may be improper feeding or rough treatment. In other cases, abuse may be financial more than physical—the spending of the elder’s pension cheque, for example.

Typically, abuse begins gradually and can continue for years without anyone realizing it. Abuse is generally not the result of one factor but of a combination of factors that can be heightened and complicated by various life events. Employment and Social Development Canada (2013) has noted some risk factors:

• a change in lifestyle (like retirement)
• employment or financial difficulties
• disputes over property/money
• physical illness
• mental/psychiatric illness
• addictions
• lack of adequate supports
• isolation
• changing relationships with family and/or friends
• declining independence.

Extensive public and personal safety nets for the frail elderly are needed. Most social workers and medical professionals are alert to the possibility of elder abuse and are suspicious if an elder is unexpectedly quiet, losing weight, or injured. However, when elder abuse is financial, bankers, lawyers, and investment advisors may not be able to recognize it nor are they obligated to respond (S. L. Jackson & Hafemeister, 2011).

A major problem is awareness: Professionals and relatives alike hesitate to criticize a family caregiver who is spending the pension cheque, disrespecting the elder, or simply not responding as quickly and carefully as the elder wishes. At what point does this become abuse? This is an issue for all cultures, incomes, and families.

Sometimes the caregiver becomes the victim, cursed at or even attacked by the confused elderly person. As with other forms of abuse, the dependency of the victim makes prosecution difficult (Mellor & Brownell, 2006).

Researchers find that about 5 percent of elders say they are abused and that up to 25 percent of all elders are vulnerable but do not report abuse (Cooper et al., 2008). Elders who are mistreated by family members are often ashamed to admit it, so the actual rate of abuse is probably close to 25 percent. Accurate incidence data are complicated by lack of consensus regarding standards of care: Some elders feel abused, but caregivers disagree. It is known that elders who are mistreated are more likely to be depressed and ill, but neither of these conditions proves abuse (Dong et al., 2011).

Long-Term CareAt some point, elders may require a level of care that is too great for their caregivers at home. Long-term care, for example in nursing homes, is one option—though it is feared by many. Some families feel shame if they place an elderly relative in an institution. Others are concerned that institutions are dehumanizing. Some institutions are dehumanizing. One 61-year-old woman with cerebral palsy, who spent time in a nursing home, said:

Among the signs of a humane setting are provisions for independence; individual choice—for example, in terms of what to eat, where to walk, and whether to have a pet; and privacy. Activities should be engaging, not demeaning. For example, at one time, playing Bingo was a common activity in many nursing homes, but many of today’s elderly find the idea of playing the game ageist (Baker, 2007).

Helping Out A volunteer at a nursing home in Haiti cuts and styles this woman’s hair. She is one of a network of caregivers who help the elderly live their lives with pride and dignity.

FLORIAN KOPP IMAGE BROKER/NEWSCOM

The training and the workload of the staff, especially of the aides who provide the most frequent and most 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 with a low turnover rate. 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 labour-intensive and expensive than most people realize. In Canada, nursing home care is subsidized nationwide; however, residents must also contribute to some of the costs. Some provinces, for example Ontario, require a co-payment from residents, with the amount depending on the type of accommodation, such as a semi-private room, and length of stay (a long-term stay in a basic room is about $55 per day). In British Columbia, nursing home residents pay a fee of up to 80 percent of their after-tax income. In 2010, the minimum client rate was $894 per month. In Quebec, the rate for a room with three or more people was about $34 per day (Senioropolis.com, n.d).

In North America and particularly in western Europe, good private nursing-home care is available for those who can afford it. There are also non-profit homes subsidized by religious organizations. In North America, the trend over the past 20 years has been toward fewer nursing-home residents, 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, with nurses and aides working more closely together (Sharkey et al., 2011), as well as nursing homes with more homelike surroundings.

Although 90 percent of elders are independent and community dwelling at any given moment, half of them will need nursing-home care at some point, usually for less than a month as they recuperate from hospitalization. Some need such care for more than a year, and only a few will need it for 10 years or more (Stone, 2006).

Alternative CareMost elder-care arrangements that include special services, such as home care, aging in place, and NORCs, are less costly and more individualized than nursing homes. Another alternative is assisted living, an arrangement that combines some of the privacy and independence of home life with some of the medical supervision of a nursing home (Imamoglu, 2007).

An assisted-living residence typically provides a private room or apartment for each person, allowing pets and furnishings just as in a traditional home. Services might include one communal meal per day, special bus trips and activities, and optional arrangements for household cleaning and minor repairs. Usually, medical assistance is readily available—from daily supervision of pill taking to emergency help, with a doctor and ambulance provided when necessary.

Assisted-living facilities range from group homes for three or four elderly people to large apartment or townhouse developments for hundreds of residents (Golant, 2011). Almost every province and territory, and almost every 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 alternative 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.” The idea is that if elderly people who live near one another all pool their resources, they can stay in their homes but also have 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).

Overall, as with many other aspects of aging, the emphasis in living arrangements is on selective optimization with compensation. Elders need to live in settings that allow them to be at their best, safe and respected, in control of as much of their own lives as possible. Depending not only on the specifics of ADLs and IADLs, but also on the personality of the elder and the depth of the social network, many housing solutions are possible. One expert explains: “There is no one-size-fits-all set of optimum residential activities, experiences, and situations” (Golant, 2011).

Same Situation, Far Apart: Diversity Continues No matter where they live, elders thrive with individualized care and social interaction, as apparent here. Martina McGoey (left), Bernice Walker (middle), and Peggy McCruer (right) take part in an exercise class at the Riverside Senior Living Centre, in Toronto, and an elderly chess player in a senior residence in Kosovo (far right) contemplates protecting his king. Both photos show that these elders maintain their individuality.

CRAIG ROBERTSON/TORONTO SUN/QMI AGENCY
VALDRIN XHEMAJ/EPA/NEWSCOM

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 had no idea why and thought, well, maybe she is growing old” (quoted in L. P. Adler, 1995). All three younger generations of the family conferred and reluctantly decided that it was time to move the matriarch from her suburban home, where she had lived for decades, into a nearby nursing home. She reluctantly agreed.

Fortunately, this nursing home encouraged independence and did not assume that decline is always a sign of “final failing.” The doctors there discovered that the woman’s heart pacemaker was not working properly. Rob tells what happened next:

This story contains a lesson repeated throughout this book. When a toddler does not talk, or a preschooler grabs a toy, or a teenager gets drunk, or an emerging adult takes dangerous risks, or a newlywed contemplates divorce, or an older person seems to be failing, one might conclude that such problems are normal for that particular age. There is truth in that: Each of these is more common at those stages. But each of these behaviours should also alert caregivers to encourage talking, sharing, moderation, caution, or self-care. The life-span perspective holds that, at every age, people can be “strong, spirited, and energetic” if all of us do our part.