Community Integration for Older Adults with Mental Illnesses: Overcoming Barriers and Seizing Opportunities

America is aging. By 2030, adults age 65 and older will account for 20 percent of the population, up from 13 percent in 2000. People 85 years and older comprise the most rapidly growing segment of the U.S. population (U.S. Administration on Aging, 2001).

An aging population brings with it a host of medical and social concerns, not the least of which is the care of older adults with serious mental illnesses. Some older adults have had serious mental illnesses most of their adult lives; others have had periodic episodes of mental illness throughout their lives; others develop a serious mental illness in late life, often exacerbated by bereavement and loss, poverty, and lack of social support.

The major focus of this report is on those adults who have had recurring or periodic episodes of serious mental illnesses. These illnesses, including schizophrenia, major depression, bipolar disorder, and schizoaffective disorders, may result in functional impairment that substantially interferes with or limits one or more major life activities. (For a complete description of the term “serious mental illness,” see the Federal Register, May 20, 1993.) Many of these individuals are at risk for institutionalization, or currently reside in nursing homes or psychiatric hospitals, though their illnesses do not warrant custodial care.

Alzheimer’s disease and other forms of dementia meet the criteria for “functional impairment” and may complicate treatment for a concurrent serious mental illness. However, it is beyond the scope of this report to discuss the full range of service needs and innovative programs for Alzheimer’s patients and their families. Many State Agencies on Aging and Area Agencies on Aging have information and advocacy efforts on behalf of people with Alzheimer’s disease and their families.

To classify older adults, one taxonomy divides aging adults into young-old (age 65-75), old (age 75-85), and old-old (age 85 plus) (U.S. Administration on Aging, 2001). Most of the old and old-old individuals in this country are women. Older women are more likely to be institutionalized, to suffer disproportionately from chronic disabilities and disorders, to be widowed, to live alone, and to be poor (U.S. Administration on Aging, 2001; Estes, 1995). In this report, older adults refer to men and women age 65 and older, unless otherwise stated.

Demographic and Mental Health Profile of Older Adults

The picture that emerges of older adults in this country is one of individuals who—by virtue of medical illness, poverty, minority status, and isolation—are susceptible to worsening psychiatric symptoms and institutionalization and to the development of serious mental illnesses in later life. However, with appropriate services and supports, as discussed elsewhere in this report, most older adults with serious mental illnesses can live successfully in the community.

Mental Health Problems

Mental disorders are not a normal part of aging, yet a significant number of older adults have these serious but treatable diseases. Currently, 35 million people age 65 and older reside in the United States, of which 7 million (20 percent) have a psychiatric illness (Jeste et al., 1999; U.S. Census Bureau, 2000). This number is expected to double to 15 million over the coming three decades (Jeste et al., 1999).

Projections of a rapid growth in the number of older adults with psychiatric disorders over the coming decades are largely due to the maturation of the “baby boomer” cohort, which has 76 million members.The first group of this cohort will reach age 65 in 2011. Greater longevity associated with improved health care and other social factors also will add to the anticipated population of older adults with mental disorders.

Estimates of the number of adults age 55 and older with serious and persistent mental illnesses range from 0.8 percent (Kessler et al., 1996) to 2 percent (Colenda et al., 2002). Older adults with serious mental illnesses receive lower quality of care and have higher mortality rates than older adults without a mental disorder (Druss et al., 2001). They are also at significant risk of being institutionalized.

Older adults with serious mental illnesses are three times more likely to be admitted to a nursing home than older individuals without serious mental illnesses (Bartels et al., 2000). Though most older adults with serious mental illnesses live in the community, 89 percent of those individuals with serious mental illnesses who are institutionalized live in nursing homes (U.S. Department of Health and Human Services, 1999).

For many individuals with serious mental illness, nursing home placement reflects a lack of community-based alternatives. In addition, a combination of behavioral, medical, and social needs presents significant challenges. Individuals placed in nursing homes generally have more severe overall and negative psychotic symptom ratings, worse general health, less social support, and more aggressive and problem behaviors (Bartels et al., 1997; Meeks et al., 1990). In particular, severe deficits in activities of daily living, as well as a lack of available family members, have been identified as the most uniquely predictive of nursing home residence (Bartels et al., 1997).

Yet aging with a serious mental illness does not necessarily mean a decline in functioning. Indeed, research on people with schizophrenia contradicts the notion of serious mental illness as a lifelong, debilitating condition (Harding et al., 1987). Notes Cohen (2000), “Increasingly, aging for persons with schizophrenia, like aging for persons in general, is no longer viewed as a decremental process but one of adaptation, compensation, and plasticity” (p. 300).

Risk of Suicide

Suicide rates increase with age and are highest among Americans age 65 and older. While this group accounts for only about 13 percent of the U.S. population, Americans age 65 and older account for 20 percent of all suicide deaths (The Surgeon General’s Call to Action to Prevent Suicide, 1999).

Depression is a significant risk factor for suicide in older adults and may be linked to bereavement and loss (U.S. Department of Health and Human Services, 1999). Depression also may co-occur with other serious mental illnesses. For example, more than two-fifths of older adults with schizophrenia show signs of clinical depression (Cohen, 2000). Prevention of suicide is a serious concern for older adults, who are more likely to be successful in their suicide attempts than any other age group (Smyer, 1995).

Comorbid Medical Conditions

Most older adults have one chronic medical condition, and many have multiple disorders, such as arthritis, hypertension, heart disease, cataracts, or diabetes (U.S. Administration on Aging, 2001). It is not surprising, therefore, that comorbid medical conditions are common in older adults with serious mental illnesses. In fact, the hallmark of late-life depression is its coexistence with medical illness and its association with poorer outcomes (Weintraub et al., 2002).

Medical illnesses may arise independently of mental illnesses, but may also be associated with them. For example, a new epidemiological study finds that chronic depression (lasting an average of about 4 years) raises the risk of cancer by 88 percent in older people (U.S. Department of Health and Human Services, 1999). Conversely, poor physical health is a key risk factor for mental disorders (U.S. Administration on Aging, 2001).

Coexisting medical conditions complicate an individual’s assessment and treatment. Because most older adults are treated in primary care settings, the medical illness may overshadow the mental illness and result in inadequate recognition and treatment for the mental disorder. Researchers estimate that nearly half of comorbid medical conditions in people with schizophrenia are missed (Cohen, 2000). Also, a mental disorder may make it more difficult for an individual to care for his or her physical health needs. Left untreated, mental disorders can turn a minor medical problem into a life-threatening condition (U.S. Department of Health and Human Services, 1999). Medical comorbidity is present in the majority of older adults with a serious mental illness (Gierz & Jeste, 1993) and is associated with worse medical outcomes and higher mortality compared to individuals without mental illness (Druss et al., 2001). In general, older adults with serious mental illnesses are at risk for receiving lower quality of health care, inappropriate prescriptions, and reduced access to needed services (Bartels, 2002).

Substance Abuse Problems

Older adults are at increased risk for alcohol-related problems and accidental or intentional misuse of prescription drugs. Up to 15 percent of community-residing older adults report problem drinking (Oslin, 2000), and misuse of prescription medications is common (Gallo & Legowitz, 1999). Researchers have found that older adults are more susceptible to the effects of alcohol on the brain and that physiological changes in the body keep alcohol in an older adult’s system longer (CSAT, 1998).

Likewise, age brings with it changes in the absorption, distribution, metabolism, and excretion of psychotropic drugs (U.S. Department of Health and Human Services, 1999). These factors may result in altered blood levels of medications, prolonged effects, and increased risks for side effects, especially for individuals who take multiple medications.

Interactions among prescription drugs and between medications and alcohol are also a risk factor for older adults. Individuals over the age of 65 take more prescription and over-the-counter medications than any other age group in the United States, and any use of drugs in combination with alcohol carries risk. The abuse of these substances raises that risk (CSAT, 1998).

Like their younger counterparts, older adults with mental disorders may be especially prone to the adverse effects of drugs or alcohol. Most commonly, “dual diagnosis” of substance abuse and mental illness in older persons consists of alcohol misuse and depression or anxiety disorders. However, it is likely that the next generation of retired older persons will have increasing rates of co-occurring illicit drug abuse. Finally, older adults with severe mental illnesses are especially vulnerable to the effects of alcohol or drugs of abuse, so that even small amounts of psychoactive substances may have adverse consequences for individuals with schizophrenia and other brain disorders (Bartels & Liberto, 1995; Drake et al., 1989). Individuals with co-occurring mental and substance use disorders are at heightened risk for a number of adverse outcomes, including institutionalization, homelessness, and death.

Poverty

One in six older adults was living below the poverty level or was near-poor in 1998 (U.S. Administration on Aging, 2001). Among older people, those at greater risk for poverty include women, African Americans, people living alone, very old people, those living in rural areas, or those with a combination of these characteristics. Poverty is a known risk factor associated with mental illness (U.S. Administration on Aging, 2001). In addition, most people with serious mental illnesses are poor by virtue of their inability to work consistently, if at all, and their reliance on public benefits.

Minority Status

Minority groups are expected to represent 25 percent of the older adult population in 2030, up from 16 percent in 1998 (U.S. Administration on Aging, 2001). Members of minority groups are more likely to be poor, to have greater health problems, and to receive inadequate health and mental health care (Estes, 1995; U.S. Department of Health and Human Services, 1999). Both older adults and minority group members are more likely to seek care from primary health care providers, where their mental health and substance abuse problems often go undetected and untreated.

Caregivers

Contrary to the view that an increasingly mobile society relegates older adults to impersonal or institutional care, the majority of older Americans live in the community in a family setting (U.S. Administration on Aging, 2001). Some 13 million individuals in this country provide unpaid care to their older relatives (U.S. Department of Health and Human Services, 1999). The average age of caregivers is 60, three-quarters are women, and one-third are employed (U.S. Administration on Aging, 2001).

Given appropriate support, family caregivers can delay or prevent institutionalization of their ill relatives, a fact that will be discussed in more detail in the prevention section of this report. However, family caregivers themselves are at risk for mental disorders. One source of data reveals that 46 percent of caregivers are clinically depressed, but only 10 percent to 20 percent use formal services (U.S. Administration on Aging, 2001). Also, lack of caregivers is a significant problem for people with no children or spouse and for the very old (85 plus). Thirty percent of older adults in the community live alone (U.S. Department of Health and Human Services, 1999).

The Changing Locus of Care

For most of the 20^th century, States cared for older adults with mental illnesses and dementia in State hospitals or asylums. However, the role of these institutions has diminished significantly since the mid-1950s, when more than a half million individuals were State hospital inpatients. By 1998, that number had dropped to 57,000, despite a huge increase in the general population (Lamb, 1998).

Much of this decrease in the State hospital census can be attributed to deinstitutionalization, an outgrowth of three significant changes in American society. First, in the mid-1950s the introduction of antipsychotic medications gave rise to hopes that, with their symptoms under control, people with serious mental illnesses would be able to live successfully in the community. Second, creation of the Medicaid and Supplemental Security Income (SSI) programs in the mid-1960s provided financial incentives for community care. Finally, consumer, family, and advocacy groups sought to address well-publicized abuses in State hospitals by seeking treatment in the least restrictive setting for people with serious mental illnesses. As a result of these changes, large numbers of people with serious mental illnesses made the transition to the community.

The initial phases of deinstitutionalization focused on younger adults. For example, in 1984, older adults still accounted for 22 percent of State psychiatric hospital residents (Semke et al., 1996). However, over the last several decades, State psychiatric care of older adults has declined.

Between 1972 and 1987, the number of hospitalized older adults with mental illnesses declined by 82 percent (American Psychiatric Association, 1993), followed by a subsequent decline of 33 percent between 1986 and 1990 (Atay et al., 1995). The rate of decline was greater for older adults than for adults ages 18 to 64 (Semke et al., 1996). As a result, State hospital patients today are predominantly younger adults who have shorter stays and increased discharge rates (Semke et al., 1996).

When deinstitutionalization began, advocates hoped to move almost all hospital patients to the community. Many assumed that funding for an individual’s care would follow her or him into the community. However, this rarely occurred.

Dollars were tied to services, not to individuals, so there was no guarantee that a person would receive the treatment and supports required for successful adjustment and maintenance in the community. States had many pressing health, social service, and other nonrelated needs, and much of the money that became available with the closing and downsizing of State hospitals was redirected to those areas.

In 1963 Congress passed the Community Mental Health Centers Act, in large part to address this problem. The legislation provided Federal funding for a nationwide network of community mental health centers (CMHCs) to provide community-based services for people with mental illnesses, prevent unnecessary institutionalization, and provide continuing care in the community for those who had been discharged from State mental health facilities and who could not afford services in the private sector.

In the ensuing decades, CMHCs have become a key community resource for many people with serious mental illnesses. But the vast array of services and supports envisioned by the CMHC legislation never materialized. Fewer CMHCs than anticipated were created, and they offered primarily clinic-based services that were inaccessible or inappropriate for individuals with the most serious disorders. Older adults, in particular, are inadequately served by most CMHCs, a fact that will be highlighted in the next section of this report.

The Transinstitutionalization Trend: The Role of Nursing Homes

The experience of many older adults who moved out of State hospitals can best be described as “trans- institutionalization” rather than deinstitutionalization. Despite a public mandate that resources and services be shifted from State hospitals to community settings, shortfalls in services and unintended fiscal incentives under Medicaid resulted in growing numbers of patients with serious mental illnesses, particularly older people, being moved into nursing homes.

Hunter (1999) notes, “Economics drove much of the transinstitutionalization of the elderly as states attempted to shift costs to the federal government, using Medicaid and Medicare benefits, by placing elderly people in nursing homes and other residential centers of various types” (p. 27). While some States considered individual need for nursing home services in making placements, others gave little thought to the appropriateness of the placement, and even less to personal preference.

Almost all older adults with serious mental illnesses receiving care in institution-based settings reside in nursing homes. Among older adults with serious mental illnesses in institutions, 89 percent reside in nursing homes, 8 percent in State or county hospitals, and 3 percent in Veterans Administration or other general hospital settings (Burns, 1991).

Prevalence studies underscore recognition that nursing homes have become the new mental institutions for older adults affected by mental health problems. Among the 1.6 million older adults currently residing in nursing homes (Jones, 2002), nearly two-thirds have a mental illness or psychiatric symptoms (Smyer et al., 1994). The most common psychiatric conditions in nursing homes are dementia complicated by behavioral symptoms, mood disorders, anxiety disorders, and serious mental illnesses such as schizophrenia and other psychotic disorders.

Factors Associated with Nursing Home Placement

Nursing home care may have particular benefits for older adults with mental disorders who have intensive functional and medical care needs. In general, nursing homes may be able to provide more technically advanced services designed to meet individual needs in an immediate and timely fashion.

Current regulations and oversight of prescribing in nursing homes have substantially decreased inappropriate use of antipsychotic agents (Kidder & Kalachnik, 1999; Office of Inspector General, 2001a). In recent years, many nursing homes have responded to increased Federal and State monitoring and regulation, and have initiated contracts with specialty mental health providers. However, a shortage of mental health expertise onsite or provided by outside professionals remains a serious problem at a great number of nursing homes (Reichman et al., 1998).

Despite the regulatory intent of Preadmission Screening and Resident Review (PASRR), inappropriate placement of individuals with mental illnesses in nursing homes remains an unfortunate reality. For example, a study of the living preferences of older adults with mental illnesses residing in nursing homes found that approximately 40 percent of nursing home residents with serious mental illnesses believed that a community-based residence would more appropriately meet their care needs and living preferences. Similarly, nursing staff determined that approximately 50 percent of these older nursing home residents with severe mental illnesses in this study group were clinically appropriate for living in supported residential settings in the community. Of significance for State Olmstead plans, residents and clinicians differed in their opinion of which residents were most appropriate for living in the community and also differed on their opinion of the most appropriate alternative living setting. Consumers overwhelmingly indicated that the most appropriate alternative living setting would be in their own home or apartment, whereas clinicians indicated that supported group homes or congregate assisted living settings were most appropriate (Bartels et al., 2003).

Several factors contribute to inappropriate institutional placement of older adults with psychiatric disabilities. First, service providers or settings to support older adults with mental illnesses in integrated, community situations are lacking. Second, while intermediate levels of care would be appropriate for many institutionalized older adults, Medicaid and other funding sources for these settings are highly variable and limited. Third, lack of family support, or lack of education and support for family caregivers, places individuals with serious mental illnesses at risk for nursing home placement if their symptoms worsen, their behaviors change, or they experience complications of comorbid medical illnesses.

The Preadmission Screening and Resident Review (PASRR)

To prevent inappropriate placement of people with mental disabilities in nursing homes, Congress enacted preadmission screening and resident review (PASRR) requirements, pursuant to Title 19 of the Omnibus Budget Reconciliation Act of 1987, also known as the Nursing Home Reform Act. PASRR requires States to develop and implement a preadmission screening process for individuals with mental illnesses who are applying for admission to Medicaid-certified nursing facilities.

Based on an independent assessment, States must determine if applicants are appropriate for placement in a nursing facility and whether they need active treatment for their mental health conditions. Those applicants who do not meet the full criteria for skilled nursing care and whose primary needs consist of psychiatric care are to be referred to appropriate, alternative settings.

The effectiveness of PASRR has been hotly debated. Critics say it results in few denials of admission to or discharges from nursing homes and that the money could be better spent on residential services. Supporters believe it can identify nursing home residents with serious mental illnesses, determine their needs, and establish responsibility for services.

The PASRR program was established for a variety of reasons. First, there was concern that States had systematically moved younger individuals from State mental health facilities into nursing homes to pass along the cost of care to the Federal government. In general, this has been found not to be true. A 1996 review of nursing home data by the Indiana State Department of Health found that 89 percent of residents were age 65 or over and 70 percent were age 85 and over. An Office of Inspector General (OIG) study (OIG, 2001b) was unable to determine the actual number of residents under the age of 65 with mental illnesses. Data reviewed by the OIG ranged between 1.6 percent and 20 percent.

A second concern was the poor conditions in some nursing homes. Advocates hoped that PASRR would provide additional pressure on States to develop alternative placement options to better meet the needs of older adults with mental illnesses inappropriately placed and inadequately served in nursing homes.

The reality is that PASRR only applies to a minority of nursing home applicants and residents, i.e., those individuals with serious mental illnesses. The PASRR process also excludes individuals who have a primary diagnosis of dementia, including Alzheimer’s disease. Residents with a nonprimary dementia diagnosis are also excluded if they do not have a primary diagnosis of a serious mental illness.

The success of the PASRR program in an individual State seems largely based on the State’s philosophy. Some States view it primarily as an additional burden placed on the State by the Federal government and implement it as minimally as possible to meet the Federal regulations. Other States take a broader, more proactive perspective and link the assessment to services.

A properly structured PASRR process, as part of a coordinated statewide long-term care policy, can significantly reduce the number of inappropriate placements. This can be achieved by referring applicants to more appropriate settings or identifying and arranging for wraparound services to allow the person to remain in his or her home.

A major barrier that limits the effectiveness of PASRR is the absence of alternative community placement and support options. The U.S. Supreme Court decision in Olmstead provides an opportunity to address this issue. As States develop their Olmstead plans, consumers, family members, and other stakeholders must ensure that the needs of older adults with mental illnesses are considered and included. PASRR data can document the need for community-based care with State legislators, planners, and policymakers. A more complete discussion of barriers to community-based services for older adults with serious mental illnesses follows in the next section.