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The most difficult issues we face as we age deal with loss or partial loss of independence. For most of us, the fear of becoming a burden on family members is stronger than the fear of death. Long-term care is the range of services that addresses the health, personal care, and social needs of individuals who need assistance in caring for themselves. The specific site and nature of this long-term care vary according to individual circumstances. While nursing home care comprises the most easily recognized form of long-term care, home care and community services accommodate a much larger percentage of the population.
No matter where the services are provided, the goals of longterm care remain the same and involve the restoration and maintenance of health and function. This includes preventive services as well as the management of sudden illnesses. The scope of services an individual requires depends upon the extent of disability and underlying illnesses, the availability of support, and the person's potential for recovery.
About one-third of people who receive long-term care live in an institutional setting, while the remaining two-thirds remain in the community. This means that for every older person living in a nursing home there are two similar people living in the community who may require equal levels of assistance. Of the elderly people who live in institutions, over 90 percent live in nursing homes, while the remainder live in mental institutions or chronic disease hospitals. Most older adults live in the community in a family setting, although the proportion decreases with age. Thirty percent of community-living older people live alone, the great majority of them women. In fact, 40 percent of older women compared with only 15 percent of older men live alone. About 80 percent of older people have living children and, of these, two-thirds live within 30 minutes of a child and share weekly or more frequent visits with their children. About three-quarters have weekly or more frequent telephone conversations with children.
The use of long-term care services increases steadily with increasing age. In 1990, approximately seven million people used some form of long-term care, which includes institutional services such as nursing homes, and community-based services such as home care services, chore services, Meals on Wheels, and adult daycare, as well as informal care by family and friends. By some projections, by the year 2040 the number of people who will require long-term care services will increase to about 18 million.
The best long-term care system for you must not only respond to your physical needs for assistance but must also consider a wide variety of possible changes in your mental function and behavior. For example, as you might expect, nursing home residents have more cognitive and psychological impairments than the rest of the elderly population. Although mental health needs are obviously great, the number and diversity of long-term services to handle behavioral problems are limited.
In addition to your physical, psychological, and emotional situations, the extent of your social supports has a significant impact on your long-term care situation. As we grow older, we are more likely to live alone or with a relative other than a spouse. As our need for personal care assistance increases, so does our dependence on others. This creates tensions in the complex web of interpersonal relationships that shapes our lives and gives them meaning.
An effective match between your needs and available services is often the critical factor in determining the site of long-term care. Transportation, legal and psychological counseling, special housing, and in-home specialized medical care are a few of the unmet needs that are frequently identified by older people who need long-term care. Accessibility may be related to personal and public financing (or a lack thereof); this may also be affected by a lack of knowledge among ourselves or our families and even among professionals and discharge planners about the scope of health care services that are available.
Comprehensive geriatric assessment by an interdisciplinary health care team is increasingly being recognized as a way to coordinate care more effectively and to overcome some of the problems of availability and accessibility of long-term care. The team includes doctors, nurses, social workers, and other professionals such as dentists, physical and occupational therapists, psychiatrists, pharmacists, and nutritionists. Most medical schools support comprehensive geriatric assessment, and some community hospitals are making these services available.
Of all the factors that determine if and when a person will require institutionalization, the availability of a caregiver is among the most critical. Contrary to commonly held perceptions, care given by family members or friends accounts for most of the care provided in the community. Formal sources of care such as paid home health care, homemaker or chore services, and adult daycare account for only 15 percent of community care for the disabled elderly age group. Generally, caregivers are women (about 75 percent)--usually wives, daughters, or daughters-in-law who often forgo employment (about a third are employed) and other familial obligations to provide primary care to a relative. About a third of these caring women live in poverty. The average age of informal caregivers is 57 years. Three-quarters of the caregivers share house-holds with the care recipient (whose average age is 78 years), and have been providing assistance for several years, usually seven days a week. Caregivers help with household tasks such as shopping and transportation and assist with personal hygiene. The importance of these figures is that the responsibility of care weighs heavily on many families and women in particular. Without relief or counseling, many families are stressed to the point of disintegration. Assistance from an interdisciplinary team can be crucial in helping to deal with these stresses.
Despite the availability of home care services, the benefits of home-based care compared with institutional care are not obvious. In fact, the use of home care has not yet been shown to improve mortality, physical or mental function, or to increase life satisfaction. In addition, the assumption that home care significantly shortens nursing home stays or postpones institutionalization altogether has not been borne out. It appears that people who are most likely to be institutionalized are those who are extremely difficult to sustain in the community.
Although the nursing home is but one option for long-term care, it deserves special mention because of its unique place in society. The diversified highly regulated nursing home of today is a far cry from the nursing home of 30 years ago or the unsupervised, limited service, privately financed home for the poor that was common at the turn of the century. Much of the structural and functional changes in nursing homes are due to the Social Security Act of 1935 and the Medicare and Medicaid programs that were enacted in the mid-1960s. Additional changes include the growth of the older age group and the age-dependent increases in disability. The overall percentage of older adults who live in nursing homes is approximately 5 percent, but this number increases dramatically with age, ranging from about 1 percent for people 65 to 74, 6 percent for persons 75 to 84, and 22 percent for people over the age of 85.
The nursing home has traditionally been removed from the medical mainstream. There is almost no instruction in nursing home care during medical school and residency training, so that the physician has little practical experience in which to discern fact from fiction. Less than one-half of all practicing physicians ever visit nursing homes, and a much smaller percentage are in attendance on a regular basis. Fortunately, interest in long-term care, and in nursing homes specifically, has blossomed recently due to powerful economic and social forces that have created a need to accommodate large numbers of ill, functionally disabled elderly persons outside the hospital.
The nursing home must fulfill two seemingly conflicting roles, those of a health care facility and those of a home. Not only does each role carry with it different goals and expectations, but each also raises a variety of different social, administrative, legal, and environmental issues.
Although most nursing homes model themselves after hospitals, their staffing patterns are very different. Nursing homes typically have significantly fewer nurses than hospitals. Half of the work force is made up by nurses' aides who provide most of the care, and who are not required to have any special professional credentials. However, nursing home care does involve highly trained professionals and includes physicians, social workers, dietitians, pharmacists, rehabilitation specialists, and administrators. In nursing homes, a team approach to care is critical, and the nurse oversees the coordination and implementation of clinical services.
Choosing a Nursing Home. If a nursing home care becomes necessary, you or your family will face the difficult issue of choosing the appropriate facility. No nursing homes are perfect, and even the better ones will be very different from your current living situation.
Your doctor may recommend a few nursing homes; other professionals such as home health nurses and social workers can provide additional referrals. In general you should be concerned with quality, the range of service, convenience, and costs. Checklists have been developed to help with this process (see Table 6).
Try to visit as many places as you can to get a sense of the environmental characteristic, overall atmosphere, and quality of care. Your visit may last an hour or two to provide time for discussions with the admissions officer, nursing home administrator, head nurse, and social worker.
Your family's involvement is important to your health and wellbeing. Nursing homes may often be scary and depressing, and moving into one can fill us with a sense of betrayal and failure. Contrary to the stereotype, families do not abandon their loved ones following institutionalization. In fact, only a minority of nursing home residents are truly without a family. You should encourage your family to visit you regularly. Through such visits, your family becomes an important participant in your total care. Your family may offer companionship and assistance with the basic activities of daily living, and may be an advocating voice for your rights.
Table 6. Nursing Home Checklist
Medical Care Issues in the Nursing Home. Many of the problems that residents of a nursing home suffer from require specific diagnosis and treatment. These problems commonly include infections, urinary incontinence, falls, fainting, depression, confusion, malnutrition, and pressure ulcers. The approach to these problems often differs from that found in the hospital or the clinical office setting. The goals of medical intervention may vary enormously from one person to another, ranging from pure comfort measures to aggressive diagnostic and treatment efforts.
In the nursing home, infection is the most common sudden medical problem leading to hospitalization. Ironically, the rate of infection in nursing homes is equal to that found in most hospitals. Unfortunately, many hospital admissions of nursing home residents occur as a consequence of clinical and social factors that are not directly linked to the underlying illness. Such factors include a lack of adequately trained staff, an inability of the nursing staff to administer intravenous therapy, a lack of diagnostic services such as X rays, physician convenience, and pressure from both staff and family to transfer older persons with "difficult" complications. In the best of worlds it should be possible to have these services available in the nursing home, which would make it possible for the nursing home resident to stay in the facility while receiving treatment.
The transfer of older people back to the nursing home is also frequently a problem, due to the often delayed or incomplete transfer of information from the hospital, a situation that jeopardizes continuity of care. This is an especially important issue in nursing homes where the attending physician is different from the physician who is providing the care in the hospital. The failure of hospital physicians to fully appreciate the limits and benefits of nursing home care has resulted in the often hasty discharge of patients to nursing homes, only to result in readmission to the hospital within a short time. Physician involvement in nursing homes, and in all of long-term care, will almost certainly increase in response to the needs of one rapidly aging population.
Although most of us would prefer to stay in our own homes, a practical concern is that home care services have not yet evolved in all communities as a viable option to nursing homes. Fortunately, home care is one of the fastest-growing segments of the health care system.
Home care services predominantly involve help with household tasks and providing home health services. Household chores include meal preparation, house cleaning, and laundry; help with personal care such as feeding, toileting, or bathing is sometimes included. Home health services are provided by nurses, physical therapists, or speech therapists. To be eligible under Medicare for these services you must be home-bound, need this intense level of care, and be expected to benefit from it over a reasonable period of time. In other words, these are generally time-limited services. Your doctor can help you arrange for home services or can direct you to the appropriate professionals in your community.
Assisted living means living in a facility offering a combination of home care and nursing home facilities. It gives you a greater sense of control, independence, and privacy by providing more choice within an institutional setting. Many people live in the facility, but each person's bedroom and bathroom can be locked by the resident. Dining and recreational facilities are usually shared. This approach to long-term care is especially appealing for people with good mental function.
A relatively new living arrangement for healthy, moderately affluent elderly people is the continuing care retirement community. The appeal of these communities is that future health care needs are covered in a setting that is an attractive residential campus where numerous cultural and recreational activities are available. Entrance fees can be substantial (over $250,000 at the upper end) and monthly maintenance fees average around $1,000. While these communities appeal to individuals who do not want to burden their children with their care, for some people it signals the beginning of an empty future. Memorial services are a regular occurrence and social networks may not be as emotionally supportive as they appear. Nonetheless, some individuals feel a sense of added security and peace of mind.
Long-term care is an area that most of us would rather not address because of its myths and stereotypes and the accompanying range of complex emotions it may evoke in us. Nursing homes are generally neither as bad as we fear nor as good as we would like. The care issues center around maximizing autonomy and minimizing complications and dependency. Other care options such as home care and assisted living are rapidly growing and provide an increasing array of alternatives.