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

Contrary to popular stereotypes of old age as a time of increasing cognitive decline and functional impairment, studies have shown that older adults are psychologically robust, resilient, and capable of change, even in the face of physical, emotional, and economic losses (Waters, 1995; U.S. Administration on Aging, 2001). For people with serious mental illnesses, old age may be a time of increasing acceptance and ability to cope with lifelong mental health disorders (Cohen, 2000).

Increasing the protective factors that mitigate against the development or recurrence of mental health disorders and decreasing the risk factors that lead to mental health decline and possible institutionalization are both possible and appropriate. The Surgeon General’s report on mental health urges a broad view of prevention as the development of interventions for “reducing the risk of developing, exacerbating, or experiencing the consequences of a mental disorder” (U.S. Department of Health and Human Services, 1999, p. 341).

Risk and Protective Factors

Prevention research focuses on the interrelated concepts of risk and prevention. Risk factors are “those characteristics, variables, or hazards that, if present for a given individual, make it more likely that this individual, rather than someone selected from the general population, will develop a disorder” (Mrazek & Haggerty, 1994, p. 6). Protective factors are those characteristics and variables that guard against a negative outcome. Taken together, “the combination of risk and protective factors affects the individual’s susceptibility to the development of mental disorders” (Smyer, 1995).

Risk factors for older adults include relationship loss and bereavement, chronic illness and caregiver burden, social isolation, and loss of meaningful social roles (Mrazek & Haggerty, 1994). Older adults may experience chronic pain, physical disabilities, and handicapping conditions; impaired self-care; and reduced coping skills (CSAT, 1998). Protective factors at this time of life include social support in the form of family, peers, and informal relationships; more formal support groups; health and social services such as respite care; and opportunities for new, productive social roles (Mrazek & Haggerty, 1994).

The Surgeon General’s report outlines a comprehensive strategy for prevention focused on older adults. The report calls for prevention of depression and suicide, prevention of relapse/recurrence (treatment-related prevention), prevention of excess disability, and prevention of premature institutionalization (U.S. Department of Health and Human Services, 1999). The balance of this section is based on this taxonomy.

Prevention Activities

Prevention of Depression and Suicide

Depression in older adults is a serious public health concern. Prevalence rates range from 8 percent to 20 percent in community settings and up to 37 percent in primary care (U.S. Department of Health and Human Services, 1999). In addition, one half of older adults new to nursing homes are at increased risk for depression, and major depression in nursing home patients increases the risk of death by 59 percent, independent of other physical health problems (U.S. Department of Health and Human Services, 1999).

Furthermore, more than two-fifths of older adults with schizophrenia show signs of clinical depression (Cohen, 2000). A recent study in the American Journal of Geriatric Psychiatry (Lyness et al., 2002) revealed that depressive states that fall below the clinical threshold are frequent and persistent in older adults and are associated with distress and disability. Investigators also found that individuals who initially had less severe forms of depression were more likely to develop major depression than individuals who had not been depressed.

Risk factors for late-life depression in older adults include female gender, widowhood, physical illness or impaired function, heavy use of alcohol, and absence of a support network (U.S. Department of Health and Human Services, 1999; Smyer, 1995). Depression in older adults is associated with increased health care use, poor quality of life, and risk for suicide.

Both support groups and peer counseling have been shown to be effective for older adults at risk for depression. Bereavement support groups, in particular, can help improve mental health status for widows and widowers (Mrazek & Haggerty, 1994; U.S. Administration on Aging, 2001; U.S. Department of Health and Human Services, 1999). Evaluation of a program run by the American Association of Retired People (AARP) called the Widowed Persons Service, which pairs new widows with a widow who can provide emotional support and practical assistance, found that women receiving the intervention recovered more quickly and experienced fewer depressive symptoms than those who did not participate (U.S. Administration on Aging, 2001; Waters, 1995).

Peer counselor prevention focuses on early detection, or self-detection, and referral to care before the illness becomes acute. The Skagit Community Mental Health Center in Washington State has published a training manual for older adult peer counselors. The use of older adult consumer counselors provides a unique opportunity for older consumers to share with their peers, who will talk to them from firsthand experience about the symptoms of mental illnesses and substance abuse disorders and the fact that treatment works.

Prevention of Relapse/Recurrence

What the Surgeon General’s report terms “treatment-related prevention” involves prevention of relapse or recurrence of an underlying mental disorder. Adults with late-onset depression (over the age of 60) have a relatively high rate of recurrence (U.S. Department of Health and Human Services, 1999). Individuals who have experienced serious and persistent mental illnesses throughout adulthood may have a substantial residual disability.

Older adults with serious mental illnesses are at risk for medication side effects and adverse reactions. As discussed previously in this report, older adults metabolize medications differently, and they frequently take multiple prescription and over-the-counter medications, often for comorbid medical illnesses. Efforts to monitor medication use and compliance on the part of older adults can help prevent medication side effects from being construed as psychiatric symptoms that require nursing home or hospital care.

Discharge Planning

Older adults with mental disorders are at risk of relapse during the transition from hospitals to the community if their symptoms have not been sufficiently stabilized, or if they leave without an adequate discharge plan. An effective discharge plan will include an appointment for community mental health provider follow-up, medications to last until the follow-up appointment, other social and transportation needs, and access to these services and supports. Ideally, community providers will have been involved throughout the treatment process and will be prepared to offer continued aftercare and support services.

For some individuals, especially those who have been institutionalized for lengthy periods of time, skills training will be a necessary component of preparation for independent living. The activities of an independent daily life are taken for granted by most adults. However, for individuals with serious mental illnesses who have depended on an institution to meet all their needs, skills for daily living such as shopping or paying bills may need to be relearned or learned for the first time.

In addition, older adults leaving institutions may need to make the transition slowly, perhaps moving to a group setting before being able to live on their own. Careful assessments can determine which individuals need to be moved into independent living gradually so they can practice daily living skills.

Prevention of Excess Disability

Many older adults with severe and persistent mental disorders are more functionally impaired than would be expected according to the stage or severity of their disorder (U.S. Department of Health and Human Services, 1999). Medical, psychosocial, and environmental factors interact to cause excess disability. For example, depression leads to a greater degree of impairment in individuals with Alzheimer’s disease (U.S. Department of Health and Human Services, 1999).

Helping older adults with mental disorders negotiate a range of needed services and supports may help reduce or forestall functional impairments that are a risk factor for unnecessary or premature institutionalization. Research shows that along with a lack of available family members, deficits in activities of daily living and instrumental activities of daily living are the most uniquely predictive of nursing home placement (Bartels et al., 1997).

Prevention of Premature or Unnecessary Institutionalization

Some older adults with serious mental illnesses may need nursing home care or psychiatric hospitalization during the course of their illness. However, most older adults and their caregivers prefer to delay institutional care or prevent it altogether. Because caregiver distress is a significant risk factor for institutionalization, programs and services aimed at relieving caregiver burden can delay or prevent out-of-home placement for older adults with mental disorders.

Caregiver Interventions

Often, the presence of a supportive family member is the only thing standing between an older adult and an institution. As noted previously, some 13 million individuals in this country provide unpaid care to their older relatives, and many of these caregivers are older themselves (U.S. Department of Health and Human Services, 1999). Support for caregivers is a critical activity that can prevent inappropriate institutionalization and help older adults make the transition to community living.

To receive and benefit from this support, caregivers need to know when they need help, what kind of help to ask for, how to ask, and whom to ask (Mittleman, 2002). Research has shown that psychoeducational interventions and problem-focused counseling can decrease caregiver burden and depression and can delay admission of their elderly family member to a nursing home (Doody et al., 2001).

For example, results of the NYU Spouse Caregiver Intervention Study revealed that enhancing caregiver skills and access to support delayed nursing home placement by an average of 329 days, particularly in the early to middle stages of dementia when nursing home placement is the least appropriate (Mittleman et al., 1996). Similar results were found in a 2-year nurse case management intervention, which found lower rates of institutionalization compared to those in the control group, but the benefits diminished over time (Eloniemi-Sulkava et al., 2001). In general, interventions for caregivers that are individualized and intensive have proven more effective than less potent and focused interventions (Bourgeois et al., 1996).

States receive support for caregiver initiatives under the National Family Caregiver Support Program, established as part of the Older Americans Act Amendments of 2000 (Public Law 106-501). The program calls for States, working in partnership with Area Agencies on Aging and community service providers, to offer five basic services for family caregivers, including

● Information to caregivers about available services;

● Assistance to caregivers in gaining access to supportive services;

● Individual counseling, organization of support groups, and caregiver training to help caregivers make decisions and solve problems related to their caregiving roles;

● Respite care to enable caregivers to be temporarily relieved of their caregiving responsibilities; and

● Supplemental services, on a limited basis, to complement the care provided by caregivers.

The program is funded based on a congressionally mandated formula and is administered by the U.S. Administration on Aging in the U.S. Department of Health and Human Services. Approximately $113 million was allocated to States in fiscal year 2001. More information is available from State Agencies on Aging or from the U.S. Administration on Aging Web site at www.aoa.gov.

Respite Care

Respite care, recognized as a key service by the National Family Caregiver Support Program, gives family caregivers a much needed break from the day-to-day responsibilities of caring for an older adult with serious mental illness. The most frequently requested and used form of respite care is in-home care, which can be provided by a volunteer, home healthcare worker, or nurse (U.S. Administration on Aging, 2001).

Respite care can also be provided in a group or institutional setting such as a foster home, adult day care center (see below), or nursing home. Some models offer comprehensive services designed to provide the level of care that best meets the family’s needs at the time (U.S. Administration on Aging, 2001). The most conclusive research results indicate that families find respite care valuable. Findings with regard to caregiver well-being and impact on institutionalization are mixed (U.S. Administration on Aging, 2001).

Adult Day Care

Adult day care centers provide respite care for family caregivers, and social interaction, skill building, recreation, and health maintenance for the older adults they serve. Most operate during normal business hours, and individuals may attend for several days or all week, especially if their caregivers are employed (U.S. Department of Health and Human Services, 1999; U.S. Administration on Aging, 2001). The U.S. Administration on Aging (2001) estimates that the average cost of a day at an adult day care center is less than the cost of home health nursing services and about half the cost of skilled nursing facility care.

Furthermore, there is evidence that adult day care centers are cost-effective in terms of delaying institutionalization, and that participants show improvement in some measures of mood and functioning (U.S. Department of Health and Human Services, 1999). The Surgeon General’s report on mental health cites the Little Havana Activities and Nutrition Center of Dade County in Miami as an example of a social model adult day care center (U.S. Department of Health and Human Services, 1999).

Little Havana Activities and Nutrition Center. Little Havana is one of the largest multipurpose nonprofit agencies in the Nation, providing 70 different health, mental health, and social services to hundreds of older people annually through 21 community centers. Health services are delivered at nutrition centers, senior centers, congregate meal sites, and four adult day health care centers, among other programs. Specific services for older adults with mental illnesses include mental health, health, social, nutritional, transportation, and recreational services. Little Havana serves the largely Cuban population of South Florida. Through consultation with families, consumers, and identified service providers, Little Havana programs and services are able to reduce admission and readmission rates to nursing homes and psychiatric facilities (U.S. Department of Health and Human Services, 2002).

Hawthorn Services. In Chicopee, MA, Hawthorn Services serves primarily older adults with mental illnesses through residential and day programs and a variety of outreach and support groups. Thirty-three people live in its four staffed residences and about 100 attend day programs at three locations. At the day centers, people participate in activities, hobbies, health checks, rehabilitation, and field trips.

Hawthorn was established in 1979 to serve older adults being moved out of a State psychiatric hospital. Today, Hawthorn still serves many of those discharged but also other older adults with mental disorders living in the community, many of whom are at risk of institutionalization. The majority of clients, 75 percent to 80 percent, have schizophrenia; 15 percent to 20 percent have affective disorders, such as manic depression, and a smaller portion suffer from borderline personality disorders, according to James M. Callahan, Executive Director of Hawthorn.

Hawthorn has lowered the threshold for services, thereby avoiding or delaying placement in an institution. One day program serves many adults with dementia, providing the stimulation that can slow mental deterioration while giving caregivers time off. There is a support group for caregivers, often run in tandem with the early-stage dementia group to make attendance easier. Respite care and other supports help caregivers avoid the exhaustion that can speed placement of their relatives with mental disorders in a nursing home.

Health Promotion Activities

Some observers exclude the notion of health promotion from the definition of preventive interventions (Mrazek & Haggerty, 1994). However, a broader public health approach includes a focus on both health promotion and disease prevention (U.S. Department of Health and Human Services, 1999). Health promotion activities may be especially appropriate for older adults, including those with serious mental illnesses, as they strive to maintain a level of health that will promote full community functioning and prevent unnecessary institutionalization.

Successful aging has been defined as the ability to avoid disease and disability, sustain mental and physical functioning, and engage with life (Rowe & Kahn, 1997). Extreme disability, including that which accompanies mental disorders, is not an inevitable part of aging (U.S. Department of Health and Human Services, 1999).

In her article “Let’s Not Wait Till It’s Broke: Interventions to Maintain and Enhance Mental Health in Late Life,” Elinor Waters (1995), defines her belief that “the goal of preventive mental health interventions is to help older adults find pleasure and meaning in their lives, use appropriate services, and retain or assume as much control over their lives as possible” (p. 183). She notes that the best place to offer such services is “anywhere we can,” including those places where older adults feel comfortable, such as health care clinics, neighborhood centers, senior centers, community organizations, doctors’ offices, and religious and educational institutions.

Educational Programs

Many mental health promotion activities are educational in nature, including the well-known program Alert and Alive, which was piloted in senior centers in different ethnic neighborhoods of New York City. The program includes a course in mental health education, followed by leadership training for older volunteers. Educational sessions are presented by guest speakers, who explain the services their agencies offer and help older adults become more comfortable with the idea of using these services (Waters, 1995).

STAYWELL, a precursor of the Alert and Alive program, was studied using a control group. Findings indicate that at 9-month follow-up, older adults who participated in the program were more likely to believe that behavior changes could impact their health, and significantly more likely to report positive changes in their health behaviors, such as engaging in regular exercise and relaxation, taking fewer medications, or abstaining from smoking or drinking (U.S. Administration on Aging, 2001).

Screening Programs

The Blues: Not a Normal Part of Aging is a community education and screening program for clinical depression developed by the American Society on Aging (ASA) through grant funding from Eli Lilly Company. Information on organizing a program is available from ASA for use by churches, housing programs, nutrition sites, senior centers, and other community organizations. The information kit includes a video on depression, depression screening instruments, information on how to involve the media, and a manual on organizing community presentations. At least one program is active in each of the 50 States.

The ASA Web site, www.asaging.org, provides information on the program and three models:

● The Baylor Center for Restorative Care

in Dallas, TX, has used the program

since 1998 to screen older adults

attending the Texas State Fair. The

center has partnered with the Dallas

Mental Health Association to promote

the need for geriatric depression

screening.

● North County Aging Services and the Minnesota Adult Day Services Association used the materials to encourage 10 adult day service organizations to develop screening

programs throughout the State.

● In Somerset County, NJ, 12 agencies serving older adults have formed a coalition to address untreated

depression in older adults.

Outreach Programs

A recent review of the research literature supports the effectiveness of mental health outreach services to older persons with mental health needs (Van Citters & Bartels, 2004b). In particular, outreach services are likely to be effective both in reaching out to isolated older adults with mental health problems, as well as in providing effective home and community-based treatment of mental illness. In addition, senior centers and aging networks can join the efforts of other providers through collaborative outreach and recognition efforts. The Center for Older Adults and Their Families in New York City was started when a citywide geriatrics committee “identified the need to make mental health services available in natural settings, such as senior centers” (U.S. Department of Health and Human Services, 2002, p.63).

The program, which is operated by Gouverneur Hospital, has had great success placing a staff member at a senior center. The staff member, who has a master’s degree in psychosocial rehabilitation and specialty training in geriatrics, provides assessments, counseling, and community education. The mental health professional is bilingual and bicultural to help serve the Center’s multiethnic population. The Center also provides comprehensive services at Gouverneur Hospital, including day treatment, case management, and clinic services. Staff are available to assist people in six different languages at the Center and in consumers’ homes.

Prevention Recommendations

In her review of mental health promotion and prevention activities, Waters (1995) offers a comprehensive list of recommendations that can be summarized as follows (pp. 202-205):

● Offer mental health education programs in a variety of settings that older adults are likely to frequent.

● Encourage preventive visits to mental health professionals.

● Offer educational workshops on topics such as retirement, widowhood, and change in health status.

● Increase opportunities for meaningful paid and unpaid work.

● Strengthen ties between mental health and aging services providers.

● Encourage joint efforts of physical and mental health providers.

● Train service providers in non-mental health settings.

● Strengthen public mental health education campaigns.

● Provide opportunities for older adults to develop their own programs.

● Support the work of self-help groups.

● Tailor interventions to the individuals and groups being served.