Introduction to Long-Term Care - LTC

Introduction to Long-Term Care

 As a major component of the health care delivery system, long-term care (LTC) is receiving increasing attention in both developed and developing countries. LTC is closely associated with disabilities from chronic conditions mostly re­ related to human aging. Developed countries have seen a steep rise in chronic conditions, which will continue. A rise in chron­ ic conditions and functional limitations will create a growing demand for LTC services in the developing world as well. Thanks to better sanitation, nutrition, and medical care, longevity is increasing in developing countries. The social environment in these countries is also changing. Both men and women are increasingly drawn into the workforce to improve their living standards. Their lifestyles are becoming hectic but sedentary.

A broad understanding of long-term care as a distinct segment of the health care de­ livery system, LTC clients and services, pol­ icy perspectives, and industry perspectives lay the foundation for managing any LTC organization. The three chapters in this section address these areas:

•        Chapter l explains what long-term care is, why it is needed, what type of health care and social services constitute LTC, the clients served by long-term care, and how LTC should interface with the broader health care system.

•        Chapter 2 focuses on policy as the driving force behind the evolution of LTC services. Financing, quality, and access to community-based services have shaped recent developments. The future remains challenging and requires several policy initiatives to meet the challenges.

•        Chapter 3 furnishes details of the long­ term industry, which is necessary for the efficient delivery of services. The chapter covers community-based and institution­ al providers, insurers, LTC professionals, case management agencies, long-term care pharmacies, and seven categories of LTC technology.

Chapter l

Overview of Long-Term Care

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What You Will Learn

•  Long-term care, as a distinct part of the health care delivery system, is best understood through 10 main dimensions that characterize long-term care as a set of varied services. The diverse services fulfill a variety of needs.

•  The clients of long-term care are diverse in terms of age and clinical needs. The elderly, however, are the major users of long-term care services.

•  Enabling technology reduces the need for long-term care services for many people. However, those who need assistance obtain long-term care services through three systems of care: informal, community-based, and institutional.

•  Informal care is the largest of the three systems of long-term care. Community-based services have four main objectives and can be classified into two groups: intramural and extramural. The institutional system forms its continuum of care to accommodate clients whose clinical needs vary from simple to complex.

•  Long-term care patients often need non-long-term care services. The long-term care system cannot function without these services. Hence, the long-term care and non-long-term care systems of health care delivery must be rationally linked.

  The Nature of Long-term Care

Long-term care (LTC) is often associated with care provided in nursing homes, but that is a narrow view of LTC. Several types of non-institutional LTC services are provided in various community-based settings.  Family members and surrogates pro­vide most long-term care un­seen to outsiders and often unpaid.  Another common misconception is that LTC services are meant only for the elderly.  Many younger people, and even some children, require LTC services. The elderly, however, are the predominant users of these services, and most LTC services have been designed with the elderly client in mind.

There is no simple definition that can fully capture the nature of long-term care. This is because a broad range of clients and services are involved. Yet, certain characteristics are common to all LTC services, regardless of whether they are delivered in an institution or a community-based setting. Long-term care can be defined as a variety of individualized and well-coordinated total care services that promote the maximum possible independence for people with functional limitations and that are provided over an extended period, using appropriate current technology and available evidence-based practices following a holistic approach while maximizing both the quality of clinical care and the individual’s quality of life. This comprehensive definition emphasizes 10 essential dimensions, which apply to both institutional and non-institutional long-term care. An ideal LTC system will incorporate these 10 characteristics.

1.    Variety of services.

2.    Individualized services.

3.    Well-coordinated total care.

4.    Promotion of functional independence.

5.    Extended period of care.

6.    Use of current technology.

7.    Use of evidence-based practices.

8.    Holistic approach.

9.    Maximizing quality of care.

10.   Maximizing quality of life.

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Variety of Services

The delivery of most medical services is based on a medical model in which health is viewed as the absence of disease. When a patient suffers from some disorder, clinical interventions widely accepted by the medical profession relieve the patient's symptoms. Prevention of disease and pro­motion of optimum health are relegated to a secondary status. By contrast, in long-term care, medical interventions are only a part of an individual's overall care. Emphasis is also placed on nonmedical factors such as social support and residential services.

Long-term care encompasses a variety of services for three main reasons:

(1) to fit the needs of different individuals,

(2) to address changing needs over time and

(3) to suit people's personal preferences. Needs vary greatly from one individual to another. Even the elderly, the predominant users of LTC services, are not a homogeneous group. For example, some people require supportive housing, whereas others require intensive treatment. The type of services an individual requires is determined by the nature and degree of his or her functional dis­ability and the presence of any other medical conditions and emotional needs that the individual may have.

Even for the same individual, the need for the various types of services generally changes over time. The change is not necessarily progressive, from lighter to more in­tensile levels of care. Depending on the change in condition and functioning, the individual may shift back and forth among the various levels and types of LTC services. For example, after hip surgery, a patient may require extensive rehabilitation therapy in a nursing facility for two or three weeks before returning home, where he or she receives continuing care from a home healthcare agency. After that, the individual may continue to live independently but require a daily Meal from Meals on Wheels, a home delivery meals service. Later, this person may suffer a stroke and, after hospitalization, have to stay indefinitely in an LTC facility. Hospice care may become necessary at the end of a person's life.

People's personal preferences also play a role in determining where services are received. Experts generally agree that, to the extent possible, people should be able to live and receive services where they want. Al­most always, people prefer to live in the community, the first choice being their own home. Home- and community-based services have increasingly become available so that people can age in the community. Severe declines in health, however, may necessitate institutional services, particularly for people who need care around the clock. Again, a variety of long-term care facilities are now available.

LTC services are an amalgam of five distinct types of services:

 •      Medical care.

•      Mental health services.

•      Social support.

•      Residential amenities.

•      Hospice services.

Understanding the distinct features of these services is important. In actual practice, however, they should be appropriately integrated into the total care package in ac­rdance with individual needs.

Medical Care

Medical interventions in long-term care are primarily governed by the presence of two main health conditions that are closely relat­ed: chronic illness and comorbidity. First, as opposed to the care for acute conditions, LTC focuses on chronic ailments, particularly when they have already caused some physical or mental dysfunction.

Acute conditions are episodic, require short-term but intensive medical interventions, generally respond to medical treatment, and are treated in hospitals, emergency departments, or outpatient clinical settings.

Chronic conditions, on the other hand, persist over time and are generally irreversible but must be kept under control. If not controlled, serious complications can develop. In order of their prevalence among the aged population, the most common chronic conditions are hypertension, arthritis, heart disease, cancers, and diabetes (Federal Inter­ agency Forum, 2004). The mere presence of chronic conditions, however, does not indicate a need for long-term care. When chronic conditions are compounded by the presence of comorbidity-coexisting multiple health problems-they often become the leading cause of an individual's disability and erode that individual's ability to live without assistance. This is when LTC is needed. The prevalence of comorbidity and disability rises dramatically in aging populations.

Medical care in the LTC environment generally focuses on three main areas: 

1.    Continuity of care after treatment of acute episodes in hospitals.

2.    Clinical management of chronic conditions and prevention of potential complications.

3.    Hospitalization when necessary.Continuity of Care after Hospitalization

Long-term care generally involves continuity of care after discharge from a hospital.  Patients­ are hospitalized for acute episodes.  Post-acute LTC often consists of skilled nursing care and physician-directed care.  provided by licensed nurses and therapists. Post-acute care may be provided in a patient's own home through home health care or in a LTC facility. Home health care brings ser­ vices such as nursing care and rehabilitation therapies to patients in their homes because they do not need to be in an institution and are generally unable to leave their homes safely to get the care they need. A long-term care facility is an institution, commonly referred to as a nursing home, that is duly licensed to provide long-term care services.

Clinical Management and Prevention

Because chronic conditions cannot be cured, they must be managed. Left unmanaged, chronic conditions often lead to severe medical complications over time. For example, untreated diabetes can lead to heart problems, nerve damage, blindness, and kidney failure. The onset of complications arising from chronic conditions can be prevented or postponed through preventive medicine that includes adequate nutrition, therapeutic diets, hydration (fluid intake), ambulation (moving about), vaccination against pneumonia and influenza, and well-coordinated primary care services. Ongoing monitoring and timely interventions are generally necessary.

Hospitalization when Necessary

The onset of an acute episode requires medical evaluation and treatment in a hospital.  Patients in LTC settings may encounter acute episodes, such as pneumonia, bone fracture, or stroke, and require admission to a general hospital. For the same medical conditions, the elderly are more prone to be hospitalized than people in younger age groups who may be treated as outpatients.

Mental Health Services

Long-term care patients frequently suffer from mental conditions, most notably depres­ sion, anxiety disorders, delirium, and demen­ tia. Approximately two-thirds of nursing home residents suffer from mental disorders (Bums et al., 1993). Mental disorders range in severity from problematic to disabling to fatal. Research shows that depression, although common in nursing homes and as­sisted living facilities, often goes undetected (Smalbrugge et al., 2006; Watson et al., 2006). Underdiagnosis and under-treatment of depression is also a serious problem among community-dwelling older adults. The risk of depression in the elderly increases with other illnesses and when the ability to function becomes limited (NIMH, 2007). Dementia is another common mental disorder. Character­ized by memory loss, patients with demen­tia find it difficult to do things that they used to do with ease. Patients with dementia are also likely to become aggressive and undergo mood changes.

It is erroneous to believe that mental dis­ orders are normal in older people or that older people cannot change or improve their mental health. However, major barriers must be overcome in the delivery of mental health care.

Efforts to prevent mental disorders among older adults have been inadequate because present knowledge about effective pre­ntion techniques is not as extensive as our understanding of the diagnosis and treatment of physical disorders. On the other hand, treating many elderly people may be inadequate because assessing and diagnosing mental disorders in older people can be particularly difficult: the elderly often focus on physical ailments rather than psychological problems (DHHS, 1999). Another drawback is that many elder care providers, including primary care physicians, are often not ade­quately trained in the diagnosis and treatment of mental health problems.

Mental health services are generally delivered by specialized providers in both out­ patient and inpatient facilities.  Because LTC facilities are responsible for a patient's total care, nursing home employees must be trained to recognize the need for mental health care, and the facility must arrange to obtain need­ ed services from qualified providers in the community.

Social Support

Social support refers to various assistive and counseling services to help people cope with situations that may cause stress, conflict, grief, or other emotional imbalances. The goal is to help people make adjustments to changing life events.

Various stressors commonly accompa­ny the aging process itself and create such adverse effects as frailty, pain, increased medical needs, and the inability to do com­ mon things for oneself, such as obtaining needed information or running errands. Other stressors are event-driven. Events that force an unexpected change in a person's lifestyle or emotional balance-such as moving to an institution, losing a loved one, or experiencing social conflict-require coping with stress or grief. Even the thought of change brings on anxiety. Many people go through a period of "grieving" when coming to terms with change, which is a normal part of the transition process. Griev­ ing may manifest in reactions such as anger, denial, confusion, fear, despondency, and depression (McLeod, 2002). Social support is needed to help buffer these adverse effects (Feld & George, 1994; Krause & Bo­ rawski-Clark, 1994).4

Social support includes concrete and emotional assistance provided by families, friends, neighbors, volunteers, and staff members within an institution, organizations such as religious establishments, senior centers, or other private or public professional agencies. Such assistance may also include coordinating simple logisti­cal problems that may otherwise become "hassles" of daily life, providing information, giving reminders, counseling, and offering spiritual guidance. Simply remaining connected with the outside world is an important aspect of social support for many people.

 Residential Amenities

Supportive housing is a key component of LTC because certain functional and safety features must be carefully planned to com­pensate for people's disabilities to the maximum extent possible to promote independence. Some simple examples include access ramps that enable people to go outdoors, wide doorways and corridors that allow adequate room to navigate wheel­ chairs, railings in hallways to promote inde­ pendent mobility, extra-large bathrooms that facilitate wheelchair negotiation, grab bars in bathrooms to prevent falls and promote unassisted toileting, raised toilets to make it easier to sit down and get up, and pull-cords in the living quarters to summon help in case of an emergency.

Congregate housing-multi-unit housing with support services is an option for se­niors and disabled adults.

Support services are basic assistive services. These include meals, transportation, housekeeping, building security, social activities, and outings. However, not all housing arrangements provide all of these services.

In LTC institutions, adequate space, pri­ acy, safety, comfort, and cleanliness are basic residential amenities. In addition, the institutional environment must feel home-like, it must encourage social activities, it must promote recreational pursuits, and the decor must be both pleasing and therapeutic.

Hospice Services

Hospice services, called end-of-life care, are regarded as a long-term care component. The focus of hospice, however, differs considerably from other LTC services. Hos­pice incorporates a cluster of special services for the terminally ill with a life expectancy of six months or less. It blends medical, spiritu­ al, legal, financial, and family support services. However, the emphasis is on comfort, palliative care, and social support over med­ical treatment.

Palliation is medical care that relieves unpleasant symptoms such as pain, discomfort, and nausea.

The hospice philosophy also regards the patient and family together as one unit of care. The option to use hospice means temporary measures to prolong life will be suspended. The emphasis is on maintaining the quality of life and letting the patient die with dignity. Psychological services focus on relieving mental anguish. Social and le­ gal services help with arranging final af­ fairs. Counseling and spiritual support are provided to help the patient deal with his or her death. After the patient's death, bereave­ ment counseling is offered to the family or surrogates.

The services are generally brought to the patient, although a patient may choose to go to a freestanding hospice center if one is available. Hospice care can be directed from a hospital, home health agency, nursing home, or freestanding hospice.

Individualized Services

Long-term care services are tailored to the needs of the individual patient. Those needs are determined by assessing the individual's physical, mental, and emotional condition. Other factors used for this purpose include the history of the patient's medical and psychosocial conditions; a so­cial history of family relationships, former occupation, community involvement, and leisure activities; and cultural factors such as racial or ethnic background, language, and religion. An individualized care plan is developed so that each type of need can be ap­propriately addressed through customized interventions.

Well-Coordinated Total Care

Long-term care providers are responsible for managing the total healthcare needs of an individual client. Total care means that any healthcare need is recognized, evaluated, and addressed by appropriate clinical professionals. Care coordination with various medical providers, such as the attending physi­cians, dentists, optometrists, podiatrists, dermatologists, or audiologists, is often necessary to prevent complications or to deal with the onset of impairments early. Changes in basic needs or oc­currence of episodes can also trigger the need for total care coordination. Transfer to an acute care hospital or treatment for mental or behavioral disorders may become necessary. Hence, long-term care must interface with non-LTC services.

Promotion of Functional Independence

LTC becomes necessary when there is a re­ markable decline in an individual's ability to perform certain common tasks of daily living independently. Among children, disabilities can result from birth defects, brain damage, or mental retardation. Younger adults may lose functional capacity due to an ac­cident or a crippling disease such as multiple sclerosis.

The goal of LTC is to enable the individual to maintain functional independence to the maximum level practicable. Restoration of function may be possible to some extent through appropriate rehabilitation therapy, but, in most cases, a full restoration of nor­ malfunction is an unrealistic expectation. The individual must be taught to use adap­tive equipment such as wheelchairs, walkers, special eating utensils, or portable oxygen devices. Staff members must render care and assistance whenever the patient is either unable to do things for him- or herself or ab­solutely refuses to do so.

To maximize functional independence for the patient, nursing home staff members should concentrate on maintaining whatever ability to function the patient still has and on preventing further decline of that ability. For example, a patient may be unable to walk independently but can take a few steps with the help of trained staff members. Assistance with mo­bility helps maintain residual functioning. The progressive functional decline may be slowed by appropriate assistance and ongoing main­ tenancy therapy, such as assisted walking, range of motion exercises, bowel and bladder training, and cognitive reality orientation. However, despite these efforts, it is reasonable to expect a gradual decline in an individual's functional ability over time. As this happens, services must be modified in ac­cordance with the changing conditions. In other words, LTC must "fill in" for all functions that can no longer be carried out indepen­dently. For instance, a comatose patient confined to bed presents an extreme case in which full assistance from employees is required. In most other instances, staff members motivate and help the patient do as much as possible for him- or herself.

Extended Period of Care

For most LTC patients, the delivery of vari­ ous services extends over a relatively long period because most recipients of care will at least require ongoing monitoring to note any deterioration in their health and to address any emerging needs. Certain services such as professional rehabilita­tion therapies, post-acute convalescence, or stabilization may be needed for a relative­ly short duration, generally less than 90 days. In other instances, LTC may be needed for years, perhaps indefinitely. In either situation, the period during which care is given is much longer than for acute care services, which generally last only a few days. Because patients stay in nursing care facilities over an extended time, holistic care and quality of life (discussed later) must be integrat­ ed into every aspect of LTC delivery.

Use of Current Technology

The use of technology varies according to the type of LTC setting.  Certain safety technologies, such as nonslip footwear and hip protectors that protect the hip from injury during a fall can be used in almost all settings.  Other technologies, such as call systems to summon assistance, bathing systems, and wander management systems, are de­ signed for specific applications.

Chapter 3 covers LTC technology in greater detail.

Use of Evidence-Based Practices

Evidence-based care relies on the use of best practices that have been established through clinical research. Increasingly, clin­ical processes proven to provide improved therapies are being stan­dardized into clinical practice guidelines. These guidelines become evidence-based standardized protocols that are indicated for treating specific health conditions. They have been developed to assist practitioners in delivering appropriate health care for specific clinical circumstances. An in­ creasing number of standard guidelines have been developed for use in nursing homes. Some guidelines can also be used in other LTC settings, such as home health and assisted living.

Holistic Approach

In sharp contrast to the medical model, the holistic model of health proposes that healthcare delivery should focus not merely on a person's physical and mental needs but also emphasize well-being in every aspect of what makes a person whole and complete. In this integrated model, a patient's mental, social, and spiritual needs and preferences should be incorporated into medical care delivery and all aspects of daily living. By its very nature, effective LTC is holis­tic. Once the need for LTC has been established, a holistic approach must be used to deliver care.

The following are brief descriptions of the four aspects of holistic caregiving:

1.  Physical. This refers to the technical aspects of care, such as medical ex­ amination, nursing care, medications, diet, rehabilitation treatments, etc. It also includes comfort factors such as appropriate temperature and cozy fur­nishings, cleanliness, and safety in home and institutional environments.

2.    Mental. The emphasis is on the total mental and emotional well-being of each individual. It may include treatment of mental and behavioral problems when necessary.

3.    Social. Almost everyone enjoys warm friendships and social relationships. Visits from family, friends, or volun­teers provide numerous opportunities for socializing. The social aspects of health care include housing, trans­ portation services, information, counseling, and recreation.

4.    Spiritual. The spiritual dimension operates at an individual level. It includes personal beliefs, values, and commitments in a religious and faith context. Spirituality and spiritual pur­ suits are very personal matters, but for most people, they also require continuing interaction with other members of the faith community.

Maximizing Quality of Care

Quality of care is maximized when desirable clinical- and satisfaction-related outcomes have been achieved. Maximization of quali­ty is an ongoing pursuit and is never fully achieved. Hence, maximizing quality requires a culture of continuous improvement. It requires focusing on the other nine dimensions encompassing the nature of LTC discussed in this section. It requires emphasis on both clinical and interpersonal aspects of care­ giving. To improve quality, standards such as regulatory standards and evidence-based clinical practice guidelines must be implemented. Quality must be evaluated or measured to discover improvement areas, and processes should be changed as necessary. This becomes an ongoing effort.

Maximizing Quality of Life

Quality of life refers to the total living experience experience, which results in overall satisfaction with one's life. Technology that enables people to live independently generally enhances the quality of life. Quality of life is a multi­ faceted concept that recognizes at least five factors: lifestyle pursuits, living environment, clinical palliation, human factors, and personal choices. Quality of life can be enhanced by integrating these five factors into care delivery.

1.  Lifestyle factors are associated with personal enrichment and making one's life meaningful through activities one enjoys. For example, almost everyone enjoys warm friendships and social relationships. Elderly people's faces often light up when they see children. Many residents in institutional settings may still enjoy pursuing their former leisure activities, such as woodworking, crocheting, knitting, gardening, and fishing. Many resi­dents want to engage in spiritu­ al pursuits or spend time alone. Even patients whose functioning has decreased to a vegetative or comatose state can creatively engage in something that promotes sensory awakening through visual, auditory, and tactile stimulation.

2.    The living environment must be comfortable, safe, and appealing to the senses. Cleanliness, decor, furnishings, and other aesthetic features are critical.

3.    Palliation should be available for relief from unpleasant symptoms such as pam or nausea.

4.    Human factors refer to caregiver atti­tudes and practices emphasizing caring, compassion, and preserving human dignity in care delivery. Institutionalized patients generally find it disconcerting to have lost their autonomy and independence. Quality of life is enhanced when residents have some latitude to govern their lives. Residents also desire an environment that promotes privacy. For example, one field study of nursing home residents found that digni­ ty and privacy issues were foremost in residents' minds, overshadowing concerns for clinical quality (Health Care Financing Administration, 1996).

5.       As pointed out, people over­ whelmingly choose to be independent. However, even institutions should try to accommodate patients' personal choices. For example, food is often the primary area of discontentment, which can be addressed by offering a selective menu. Many elderly resent being awakened early in the morning when nursing home staff begin their responsibilities to care for patients' hygiene, bathing, and grooming. Patient privacy is com­ promised when a facility can offer only semi-private accommodations. But, in that case, the facility can at least give the patients some choice in decid­ ing who their roommates would be.

Clients of Long-term Care

More than 10 million Americans are estimat­ ed to need LTC services. Most (58%) are elderly, but a significant proportion (42%) are under 65. Of those needing LTC, 14% are in nursing homes, and 86% reside in the community (Kaiser, 2007).

LTC clients can be classified into five main categories:

1.    Older adults.

2.    Children and adolescents.

3.    Young adults.

4.    People with HIV/AIDS.

5.    People needing subacute or high-tech care. 

Older Adults

The elderly, people 65 years of age or older, are the primary clients of long-term care. Most of the elderly, however, are in good health. According to household interviews of the elderly civilian noninstitutionalized population, only 25% described their health as fair or poor (DHHS, 2008a). It is reason­able to assume that the segment of the elderly population in fair-to-poor overall health will likely require LTC at some point. Even for those in good or excellent health, short-term LTC (needed for 90 days or less) may become necessary after an accident, surgery, or acute illness. Also, important differences in health exist according to population characteristics. Those in fair or poor health are likelier to be black, Hispanic, or American Indian rather than white or Asian; financially poor or near poor; and rural rather than urban residents.

A person's age, or the presence of chron­ic conditions, by itself, does not predict the need for long-term care. However, as a person ages, chronic ailments, comorbidity, dis­ability, and dependency tend to follow each other. This progression is associated with an increased probability that a person would need long-term care (Figure 1-1 ). In 2007, approximately 7% of civilian, noninstitution­alized elderly in the United States needed help with personal care from other individu­als (DHHS, 2008b).

Disability is commonly assessed regarding a person's ability to perform key everyday activities. Although chronic mental impairments are often assumed to manifest in physical dysfunction eventually, that is not always the case. Individuals with certain chronic mental illnesses may be able to perform most everyday activities but may require supervision and monitoring. Severe dementias, on the other hand, which are mostly confined to older people, are com­monly accompanied by physical functional limitations.

Two standard measures are available to determine a person's level of dependency. The first, the activities of daily living (ADL) scale, is used to determine whether an individual needs assistance in performing six basic ac­tivities: eating, bathing, dressing, using the toilet, maintaining continence, and trans­ferring into or out of a bed or chair.Groom­ ing and walking a distance of eight feet are sometimes added to evaluate self-care and mobility. The ADL scale is the most relevant measure for determining the need for assistance in a long-term care facility. Therefore, ADLs are key in putin determining a facility's aggregate patient acuity level. Acuity is a term used to denote the severity of a patient's condition and, consequently, the amount of care the patient would require.

The second commonly used measure is called instrumental activities of daily living (IADL). This measure focuses on a variety of activities that are necessary for independent living. Examples of IADLs include doing housework, cooking, doing laundry, grocery shopping, taking medication, using the telephone, managing money, and moving around outside the home (Lawton & Brody, 1969). The measure is most helpful when a nursing home patient is discharged for community-based LTC or independent living. It helps assess how well the individual is likely to adapt to living indepen­dently and what type of support services may be most appropriate to ensure that the per­ son can live independently.

Children and Adolescents

In children, functional impairments are of­ ten birth related, such as brain damage that can occur before or during childbirth (Figure 1-2). Birth-related disorders include cerebral palsy, autism, spina bifida, and epilepsy. These children grow up with physical disabilities and need help with ADLs. Developmental disability describes the general physical incapacity such children may face at a very early age. Those who acquire such dysfunctions are called de­velopmentally disabled, or DD for short. Mental retardation, that is, below-average intellectual functioning, also leads to devel­opmental disability in most cases. The close association between the two is reflected in the term MR/DD, which is short for mental­ ly retarded/developmentally disabled. Thus, some children and adolescents can need LTC services generally available in special pediatric long-term care and MR/DD facilities.

Young Adults

Permanent disability among young adults commonly stems from neurological malfunc­tions, degenerative conditions, traumatic in­ jury, or surgical complications. For example, multiple sclerosis is potentially the most common cause of neurological disability in young adults (Compston & Coles, 2002). Severe injury to the head, spinal cord, or limbs can occur in victims of vehicle crashes, sports mishaps, or industrial accidents. Other serious diseases, injuries, and respiratory or heart problems following surgery can make it difficult, or even impossible, for a patient to breathe naturally. Such individuals, who can­ not breathe (or ventilate) independently, require a ventilator. A ventilator is a small machine that takes over the breathing function by au­tomatically moving air into and out of the patient's lungs. Ventilator-dependent patients also require total assistance with their ADLs. Many MR/DD victims are entering adult­ hood. The aging process begins earlier in people with mental retardation, and the age of 50 has been suggested to demarcate the elderly segment in this population (Altman, 1995). More people with MR/DD are now living beyond 50. Hence, this population will manifest not only severe mental and physical impairments but also the effects of chronic conditions and comorbidity.

Evidence suggests that MR/DD patients may function better in community-based res­idential settings than traditional nursing homes. Studies of patients who had moved out of nursing homes to community settings demonstrated that these patients had higher levels of adaptive behavior, lifestyle satisfac­tion, and community integration than resi­dents who remained in nursing homes (Heller et al., 1998; Spreat et al., 1998). Opportunity to make choices, small facility size, attractive physical environment, and family involve­ ment were associated with higher levels of adaptive behavior and community integration (Heller et al., 1999; Heller et al., 2002).

People with HIV/AIDS

When it first gained national attention in the early 1980s, AIDS was a fatal disease that resulted in a relatively painful death shortly after HIV infection. Since then, the introduction of protease inhibitors, antiretroviral therapy, and antibiotics for treating AIDS-related infections has vastly improved the health condition of HIV/AIDS patients. Consequently, AIDS has evolved from an end-stage terminal illness into a chronic condition. With reduced mortality, the prevalence of HIV in the population has increased, including among the elderly.

Over some time, people with AIDS are subject to some debilitating conditions, which create the need for assistance. Hence, the demand for LTC services is increasing, particularly because at least 25% of all known people with HIV/AIDS are age 50 and older (New York City Department of Health and Mental Hygiene, 2004), and mor­tality rates from HIV/AIDS have decreased. Care of HIV/AIDS patients presents special challenges, especially because this population has characteristics quite dissimilar to the rest of the LTC population. HIV/AIDS patients have a significantly higher prevalence of depression, other psychi­atric disorders, and dementia associated with AIDS. HIV/AIDS patients also have a significantly higher prevalence of weight loss and incontinence of the bladder and bowel (Shinet et al., 2002).

People Requiring Subacute or High-Tech Care

A growing number of nursing facilities have developed subacute and technology-intensive services. Subacute care applies to post-acute services for people who require convalescence from acute illnesses or surgi­cal episodes. These patients may be recover­ ing but are still subject to complications while in recovery. They require more nursing intervention than required in skilled nursing care. The patients are trans­ferred from the hospital to a nursing home after the acute condition has been treated or after surgery. Some common orthopedic episodes include hip and knee replacement. Other subacute and high-tech services are needed for patients who require ventilator care, head trauma victims, comatose patients, and those with progressive Alzheimer's disease.  Devices that increase in acuity and complexity from one end to another informal and community-based services at one end of the continuum to the institution­ al system at the other end.

The long-term care delivery system has three major components:

•      The informal system.

•      The community-based system.

•      The institutional system.

The first component, informal care, is the largest, but it generally goes unrecognized. Mostly, it is not financed by in­surance and public programs, but it includes private-duty nursing arrangements between private individuals. The other two companies have formalized payment mechanisms for services, but payment is unavailable for every community-based and institutional service. In many situations, people receiving these services must pay for them out of their resources.

Although institutional management is the focus of this book, the other two compo­nents, informal care, and community-based service, also have important implications for administrators who manage LTC institutions. The community-based services and informal systems compete with the institutional system in some ways but are complementary.

The three subsystems that form the LTC continuum are illustrated in Figure 1-3. The patients' levels of acuity and the complexity of services they need increase from one end of the continuum to the other, for the most

The Long-Term Care Delivery System

The LTC system is sometimes called the continuum of long-term care, which means the full range of long-term care support. Informal care provided mainly by family members or friends involves basic assistance and is at one extreme of the continuum. Next on the continuum are the various community-based in-home services and vices that increase in acuity and complexity from one end to the other, informal and community-based services at one end of the continuum to the institution­ al system at the other end.

The long-term care delivery system has three major components:

•      The informal system.

•      The community-based system.

•      The institutional system.

The first component, informal care, is the largest, but it generally goes unrecognized. Mostly, it is not financed by in­surance and public programs, but it includes private-duty nursing arrangements between private individuals. The other two compo­nents have formalized payment mechanisms to pay for services, but payment is unavailable for every type-of community-based and institutional service. In many situations, people receiving these services must pay for them out of their resources.

Although institutional management is the focus of this book, the other two compo­nents, informal care, and community-based service, also have important implications for administrators who manage LTC institutions. The community-based services and informal systems compete with the institutional system in some ways but are complementary.

The three subsystems that form the LTC continuum. The patients' acuity levels and the complexity of services they need increase from one end of the continuum to the other, for the most part. Informal care provided mainly by family members or friends involves basic assistance and is at one extreme of the continuum. Next on the continuum are the various community-based in-home services and ambulatory services. Finally, there are different levels of institutional settings.

Given the complexity of the LTC system, case management (also called care management) fills a key role. Case management is a centralized coordinating function in which the special needs of older adults are identified, and a trained professional determines which services would be most appropriate, determines eligibility for those services, makes referrals, arranges for financing, and coordinates and monitors the delivery of care to ensure that clients are receiving the prescribed services. Case management helps link, manage, and coordinate services to meet the var­ied and changing healthcare needs of elderly clients. Case management provides a single entry point for obtaining information about and accessing services. The extent of disabil­ity and personal needs primarily determine which services on the continuum may be best suited for an individual. However, client pref­erences, availability of community-based services, and ability to pay for services also play a significant role.