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Long-Term Care Populations: Persons With Mental Illness

FAIKA ZANJANI

AMY F. HOSIER

INTRODUCTION

Mental illness is a process described as decline in mental health status, traits, and ability, which leads to impairment in everyday functioning that can be characterized as diagnosable medical conditions (mental health disorders); entailed as a disruption in a person’s thinking, feeling, mood, ability to relate to others, and daily functioning; and often results in a diminished capacity for coping with ordinary demands of life (National Alliance on Mental Health [NAMI], 2010). Approximately 26% of the U.S. population suffers from some form of mental illness at some point along the life course (Kessler, Chiu, Demler, Merikangas, & Walters, 2005). Mental illness can be particularly detrimental to older adults because it often goes under recognized and is misrepresented as a normal part of aging (A. J. Mitchell, Rao, & Vaze, 2010; Substance Abuse and Mental Health Services Administration [SAMHSA], 2003). Regardless of age, recovery from many mental illnesses is generally possible through pharmacological and behavioral treatment, and recovery creates longer life spans for individuals who are suffering from mental illness (NAMI, 2010).

Variations in mental health disorders are based on a characteristic mental/cognitive breakdown and the presence and outcomes of the disorder. For example, depression is characterized by a low mood and inability to carry out everyday activities that had normally once been conducted. On the other hand, anxiety is characterized by excessive worry above and beyond functional levels that can impair productivity and ability to relate to others. In general, according to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5; American Psychiatric Association, 2013) mental health disorders are categorized as Neurodevelopmental, Schizophrenia Spectrum, Bipolar, Depressive, Anxiety, Obsessive-Compulsive, Trauma- and Stressor-, Dissociative, Somatic, Feeding and Eating, Elimination, Sleep–Wake, Sexual Dysfunction, Gender Dysphoria, Disruptive/Impulse-Control/Conduct, Substance-Related/Addictive, Neurocognitive, Personality, Paraphilic, and Medication-Induced/Adverse Effects of Medication Disorders. Many of these disorders are extremely rare in older adults. Common mental health disorders among older adults include anxiety, dementia, depression, posttraumatic stress, schizophrenia, and substance abuse/dependence (Exhibit 13.1; Blazer & Steffens, 2009).

EXHIBIT 13.1 Prevalent Late-Life Mental Health Conditions

This chapter focuses on the interrelationship between one type of mental illness, depression, and long-term care, as this interrelationship has been extensively examined. Depression (a mental health disorder that includes a prolonged state of feeling hopeless and unhappy) is one of the most common mental health illnesses. The DSM-5 (American Psychiatric Association, 2013) characterizes depression as involving presence of sad, empty, or irritable mood, accompanied by somatic and cognitive changes that significantly affect the individual’s capacity to function. Depressive symptoms affect approximately 27% of community residing adults over the age of 60 (Blazer, Hughes, & George, 1987) and approximately 30% of adults living in long-term care (Seitz, Purandare, & Conn, 2010). In skilled nursing facilities (SNFs; facilities that provide long-term care services to assist with limitations that significantly impair self-care and activities of independent living), where memory impairment rates often soar, more residents are admitted with depression than dementia (a mental health disorder indicating significant cognitive impairment in memory, reasoning, and thinking abilities), comprising approximately 18% versus 12% of admissions (Fullerton, McGuire, Reng, Mor, & Grabowski, 2009).

The World Health Organization (2010) recognizes depression as one of the leading causes of disability and contributors to the burden of disease. Serious mental illness (a diagnosable mental, behavioral, or emotional disorder that meets criteria in the DSM 5 (APA, 2013) and that results in functional impairment that substantially interferes with or limits one or more major life activities), including major depression, can reduce life expectancy by nearly 25 years and is attributable to poor health behaviors and the presence of preventable diseases (National Association of State Mental Health Program Directors [NASMHPD], 2006). Known risk factors for depression in older adults include functional impairment, loneliness, and a family history of depression and neuroticism (Eisses et al., 2004). Depression can lead to poor health trajectories in morbidity, physical and mental functioning, and reduced time to death (Benton, Staab, & Evans, 2007; Evans et al., 1999), particularly among older adults (Roberts, Kaplan, Shema, & Strawbridge, 1997).

DEPRESSION AND HEALTHY AGING

Depression can be detrimental to aging individuals in various ways. For instance, depression can increase disease/disability (Barry, Allore, Bruce, & Gill, 2009), which can directly and indirectly have a negative effect on all aspects of individual life quality. Depression can also increase the risk for ischemic events: fatal or nonfatal myocardial infarction or angina pectoris (Bremmer et al., 2006), cardiovascular conditions (Frasure-Smith & Lesperance, 2006), stroke (House, Knapp, Bamford, & Vail, 2001), cancer (Lemogne & Consoli, 2010), pain (Landi et al., 2005), and mortality (Frasure-Smith & Lesperance, 2006; House et al., 2001).

Health outcomes of depressed individuals are relatively poor when compared to individuals without depression (Leas & McCabe, 2007). Allgower, Wardle, and Steptoe (2001) found that depressive symptoms are associated with unhealthy behavioral patterns, including obesity, smoking, not exercising, not using a seat belt, not having regular sleep hours, and poor breakfast habits. The literature also confirms a correlation between depression and alcohol consumption, indicating a greater prevalence of depression when unhealthy alcohol patterns are present (Choi & Dinitto, 2010). Over time, depression can lead to increased smoking and decreased physical activity among middle-aged and older adults ages 55 to 85 (van Gool et al., 2003).

Poor health outcomes often create comorbidities among adults with depression and a need for high levels of medical service use, including the use of nonmental health services (Braune & Berger, 2005). Individuals with depression tend to have increased incidence of impaired psychosocial functioning, such as poor well-being (Smalbrugge et al., 2006). Social interaction and activity, important aspects of well-being and the caregiving relationship, can be impaired when depression is present (Achterberg et al., 2003).

Although depression affects both men and women, in some instances, depressed women are at higher risk for disease/disability and poor quality of life. One explanation for negative health outcomes are reports of women with depression experiencing more difficulty in comparison to men recovering from illness, specifically stroke (Lai, Duncan, Dew, & Keighley, 2005). Also, in the area of recovery, Onder et al. (2003) found that older hospitalized women with depression have a higher probability of adverse drug interactions as compared to male counterparts. In women, there is evidence that depression also leads to poor physical functioning (Hollenberg, Haight, & Tager, 2003) and cognitive deficits (Pálsson et al., 2001), with depression having higher predictive value than physical functioning with respect to long-term cognitive functioning (van Hooren et al., 2005). In sum, depression, especially in women, decreases older adults’ total and active life expectancy, even when accounting for chronic conditions (e.g., heart disease, cancer, diabetes, and stroke; Reynolds, Haley, & Kozlenko, 2008).

The combination of depressive symptoms, poor health behaviors, gender, and age jeopardizes an older individual’s ability to safely age in place (i.e., sustain residence in a specific location at home or within the community while experiencing changes associated with aging) and consequently creates an increased need for long-term care. Older adults who live in the community with untreated depression are at increased risk of nursing home admission (Fullerton et al., 2009). Identifying and addressing individual mental health impairment may be one of the most important factors in delaying long-term care placement of older adults and maintaining independence in later life (Cohen-Mansfield & Wirtz, 2007).

SPECIAL CONSIDERATIONS IN LONG-TERM CARE

In 1999, the United States Supreme Court passed a landmark case that has come to be known as the Olmstead decision (Olmstead v. L.C.), a ruling that made it discriminatory to institutionalize a person with a disability, including those with mental illness, who wish to live in the community as long as the person is capable of benefitting from the setting. The Olmstead decision impelled states to address the residential preferences of those with disabilities, including older adults with mental illness (Bartels, Miles, Dums, & Levine, 2003). Findings from Bartels et al. (2003) revealed that community living (living in one’s own home or in a community-based home-like setting) versus institutionalized care settings (e.g., psychiatric unit, hospital, or SNF) is the optimal setting for older adults living with mental illness. The same study recognized that those with severe behavior problems, physical impairment, greater medical illness burden, and those with a diagnosis of dementia were better suited for and safer in institutional care settings. Interestingly, age and need for assistance with self-care or community living skills were not significant determinants of nursing home placement, reflecting the view that community-based options and services should be provided regardless of age or ability.

Because of the numbers of older adults living with depression and other mental illnesses/disorders, the Olmstead decision, and the current demographics indicating a growing older population (Hyman, 2001), an increased need exists for mental health services, mental health care provider training, and overall mental health awareness along the entire long-term care continuum. Therefore, it is important to consider how different levels of long-term care can interact with the presence of depression. The remainder of this chapter examines the relationship of depression with three different levels of long-term care (community-based services, assisted living facilities, and SNFs), within the overriding rubric of recognition that depression decreases a person’s ability to age in place and escalates his or her need for increased levels of care in facility-based long-term care settings (Aud & Rantz, 2005). Because depression is one of the strongest life quality predictors among both community dwellers and institutionalized older adults (Borowiak & Kostka, 2004), special consideration across the long-term care spectrum for older adults living with depression is imperative.

MENTAL ILLNESS CONSIDERATIONS FOR INFORMAL CARE AND BASIC COMMUNITY-BASED LONG-TERM CARE: LIVING AT HOME

With age, older adults face increasing challenges and losses (Gill & Morgan, 2011), including retirement, health worries, death of family members and friends, increased risk for disease/disability, mobility limitations, loss of independence, and possible need for downsizing or relocating to long-term care facilities. Throughout the challenges of aging, many older adults strive to remain in their home for as long as possible, where they feel autonomous and secure and in control of their life. Individual losses and the accumulation of losses can be stressful and precipitate risk factors that lead to depression. Risk factors include loneliness and isolation, reduced sense of purpose, physical illness and disability, polypharmacy, fear, enforced dependency, abuse, instability, and recent bereavement (Bell & Goss, 2001; Glass, De Leon, & Bassuk, 2006; McAllister & Matarasso, 2007). Risk factors for depression can also contribute to eventual nursing home placement. Harris and Cooper (2006) evaluated depressive systems in older adults to predict nursing home admissions. They found three interwoven means by which depressive symptoms could be associated with risk for nursing home admission: (a) an increase in disease manifestations, including diseases of the heart and brain; (b) less motivation to maintain a healthy lifestyle; and (c) the presence of another condition, such as dementia.

When left untreated, depression can take its toll on health, independence, and the ability to safely function within one’s home (Bell & Goss, 2001). Depression can also impair individual decision making (van Randenborgh, de Jong-Meyer, & Hüffmeier, 2010), which can undermine an adult’s ability to make decisions necessary to remain independent, including decisions relating to health and finances. Impaired decision making, combined with the other risk factors associated with depression, can place older adults with mental illness at greater risk for long-term care placement, as informal caregivers and various community-based services eventually can no longer fulfill their care needs, especially if a strong informal and/or formal support system does not exist (McAllister & Matarasso, 2007).

In order to successfully age in place at home, especially with major depression, an older adult needs social contact and, generally, support from informal caregivers who provide unpaid care out of love, respect, obligation, or friendship (e.g., family, friends, neighbors, or church members), and from formal care (e.g., volunteers or paid care providers associated with a service system) or a combination of both (Maulik, Eaton, & Bradshaw, 2011). Unfortunately, only a small percentage of older adults reach out for the help they need and few caregivers are sufficiently prepared to identify or help someone with depression. Some individuals believe that feeling blue is a “normal” part of aging, whereas others are unwilling to talk about their feelings or ask for help (Bartels, 2003; SAMHSA, 2003). Concentrating on misperceptions and age-related decline and physical complaints, caregivers, including physicians, can overlook signs of depression. Untreated depression challenges the ability to age in place because it places older adults at greater risk for polypharmacy (Harris, 2007), environmental challenges (Bell & Gross, 2001), alcohol and drug use (Lemke & Schaefer, 2010), suicide (Conwell & Brent, 1995; National Institute of Mental Health [NIMH], 2007), and nursing home placement (Fullerton et al., 2009).

Seventy-eight percent of older adults living in the community who ultimately need long-term care services depend on family and friends as their only source of help (Thompson, 2004). Informal caregivers are crucial to helping older adults safely age in place in their homes. Informal caregiving may come with a price, especially as the emotional, physical, and financial demands of caregiving increase (Schulz, Belle, Czaja, McGinnis, Stevens, & Zhang, 2004). Twenty-three percent of family members caring for vulnerable family members for 5 years or more report fair or poor health (National Alliance for Caregiving and AARP, 2009). Twenty percent of employed female caregivers over 50 years old report symptoms of depression compared to 8% of their non-caregiving peers (National Alliance for Caregiving and MetLife Mature Market Institute, 2010) and 40% to 70% of family caregivers have clinically significant symptoms of depression with approximately a quarter to half of these caregivers meeting the diagnostic criteria for major depression (Zarit, 2006). As constraints on the ability of an informal caregiver increase, a caregiver’s physical and mental health can deteriorate (Center on Aging Society, 2005), and the stress can cause premature aging (Epel, 2004).

If a caregiver has a good understanding of mental illness and the classic symptoms of major depression, but knows how best to deal with them, then appropriate mental health management can be implemented, and consequently, many barriers that depression creates can be overcome. Unfortunately, in many cases, informal caregivers try to provide care beyond their ability or expertise. This is usually done “out of love” or from a sense of obligation, even though a better or safer solution for everyone involved might be the use of formal services (Gonyea, Paris, & de Saxe Zerden, 2008).

MENTAL ILLNESS CONSIDERATIONS FOR TRANSITIONAL LONG-TERM CARE: ASSISTED LIVING FACILITIES

Assisted living facilities (ALFs) are often promoted as an intermediate level or transitional type of care between independent living and skilled nursing care; such facilities encourage autonomy and promote privacy and dignity beyond what is available in a nursing facility (see Chapter 10; Golant, 2005). They also support the need for residents to remain part of their social network (Golant, 2008; Kane, 2004). In the United States, approximately 38,000 ALFs (Mollica, Houser, & Ujvari, 2012) provide care and housing to an estimated 1 million Americans who can no longer manage to live on their own (Chen, Zimmerman, Sloane, & Barrick, 2007; Hyde, Perez, & Reed, 2008). Of these older adults, approximately 24% live with mental illness, primarily depression, and about half have some form of dementia (Hyde et al., 2008; National Center for Assisted Living [NCAL], 2001).

According to Chen, Zimmerman, et al., (2007), studies vary in the reported prevalence of depression among ALF residents. Two studies reported that ALF residents experienced significant depressive symptoms (Ball et al., 2000) or were severely depressed (Watson, Garrett, Sloane, Gruber-Baldini, & Zimmerman, 2003). Chen, Zimmerman, et al., (2007) associated depression with a person’s inability to control his or her environment. In a study based on residents’ views of life quality, Ball et al. (2000) found that 54% of their sample (n = 55) noted depression as a common health problem that required care, followed by pain (48%), high blood pressure (38%), and anxiety (34%). Participants in the study associated their depression with the loss of physical and cognitive functioning, in addition to the loss of their home, independence, loved ones, and former routines. Residents also reported feeling lonely (44%) and bored (36%). Social isolation and boredom are strongly connected with depression. Watson et al. (2003) associated depression in ALFs with hospitalization, dependence in more than three areas of activities of daily living, medical comorbidity, cognitive impairment, psychosis, agitation, and social withdrawal.

ALFs are attractive to people with mental illness for a variety of reasons. People living with depression may no longer be able to function safely at home, but they are not so dependent that they need to rely on the intensive medical services of nursing home care. People with mental illness remain aware of their environment and continue to benefit from their surroundings. ALFs promote privacy and autonomy in their “home-like” settings, providing residents with a sense of control over their lives (Polivka & Salmon, 2008). People with mental illness can thrive as a result of being able to harness an ALF’s range of medical, psychosocial, and rehabilitation services and opportunities that encourage social autonomy, dignity, social activity, decision making, privacy, and well-being (Chen, Zimmerman, et al., 2007; Pruchno & Rose, 2000).

Because ALFs are less regulated than SNFs, service provision and clientele served can vary from facility to facility. Some ALFs offer high-acuity care and staff that can manage cognitive and physical impairments similar to those found in nursing homes. Other ALFs provide low-acuity or light care to individuals who need minimal assistance (Golant, 2008). With ALF social models of care, family members and informal caregivers have greater opportunities for involvement in a person’s care. Such involvement can positively influence a person’s mental health and ability to age in place in the ALF (Ball et al., 2004; J. M. Mitchell & Kemp, 2000).

The average length of stay in an ALF ranges from approximately 2.5 to 3 years (Hawes, Phillips, & Rose, 2000; NCAL, 2001). Residents may be discharged if they need assistance with transfers, have a high level of medical comorbidity, display increased cognitive impairment, or exhibit negative behavioral symptoms (Hawes, Phillips, Rose, Holan, & Sherman, 2003). Unfortunately, many symptoms of major depression mirror ALF discharge criteria, reflecting the need for the improved identification and management of depression in ALFs to help individuals avoid an unnecessary relocation. AFLs are not required to screen residents for depression. Therefore, many residents go untreated, and their conditions are wrongly associated with dementia or other age-related conditions. Some might expect that depression among ALF residents is likely to be detected. To the contrary, research demonstrates that staff member’s ability to recognize depression is limited. In some instances, less than one third to one half of those with depression received treatment (Davison et al., 2007).

Untreated depression can lead to discharge from an ALF. Watson et al. (2003) reported that depressed residents were discharged to nursing homes at 1.5 times the rate of nondepressed residents and that mortality rates were also higher for depressed residents. Depression in ALFs has been associated with transfer into a nursing home or hospital for higher levels of care (Davison et al., 2007; Watson et al., 2003). Depression rates in residential care/ALF are nearly equivalent to those in formal nursing home long-term care, at approximately 30% (Gruber-Baldini et al., 2005). Although residents of nursing homes have a greater number of disabilities than those in ALFs, due to higher percentages of heart disease and stroke, the populations look similar when comparing physical and cognitive/mental health diagnoses. Data from the 2004 National Nursing Home Survey and from an industry-sponsored survey of assisted living indicate considerable overlap with those living in ALFs and those receiving long-term care in nursing homes in terms of age, cognitive status, chronic medical illnesses, disability, mental illness, depression, and care needs (Table 13.1; Ruckdeschel & Katz, 2004; Zimmerman et al., 2003). With regard to mental illness besides depression, more nursing home residents live with affective disorders, schizophrenia, bipolar disorders, and other mental disorders that affect behavior, also reflected in Table 13.1, than do those in ALFs (Redfoot, 2007).

ALFs strive to support life quality and prevent mental illness, including depression (Ball et al., 2000; Chen, Zimmerman, et al., 2007), but ALF workers need more training in order to be fully confident and comfortable in providing such care. “A key element in enabling more cognitively and physically impaired residents to remain in assisted living is the availability of appropriate personal care and health-related services, along with social and recreational activities” (Hyde et al., 2008, p. 68). Inability to properly identify and treat mental illness in ALFs remains a problem. Depending on a state’s regulations, care-related services can be contracted with outside agencies, including mental health services. Typically, visiting nurses and home health agencies can be called to take care of services beyond the capabilities of ALFs (Hyde et al., 2008). The number of people moving in and out of ALFs supports the interaction and interdependence of the types of settings along the long-term care continuum required to meet the dynamic needs, including mental health needs, of residents (Golant & Hyde, 2008; NCAL, 2001).

TABLE 13.1 Rates for Cognitive and Mental Health Conditions in Long-Term Care

^*Includes affective disorders, schizophrenia, bipolar disorders, and other mental disorders.

Source: National Nursing Home Survey (2004).

MENTAL ILLNESS CONSIDERATIONS FOR FORMAL SKILLED NURSING CARE

SNFs, known to most people as nursing homes, provide a broad range of long-term care services, including personal, social, and medical services designed to assist people who have functional or cognitive limitations in their ability to perform self-care and other activities necessary to live independently (see Chapter 11). Although nursing facilities are often the “last stop” in the long-term care continuum, length of stay varies widely from brief stays for short-term rehabilitation and postacute care following hospitalization to medical care that will last for many years (Houser, 2007). Nursing home residents are at greater risk of becoming long-stay residents if they demonstrate cognitive impairment, limitations in activities of daily living, and social isolation (Fullerton et al., 2009). Longer nursing home stays are also associated with depression (Webber et al., 2005). Many residents spend their first few weeks in a facility feeling abandoned, vulnerable, and displaced (Bagley et al., 2000; Kao, Travis, & Acton, 2004). During this “disorganization phase” (Brooke, 1989), in particular, it is important for caregivers to differentiate between grief and depression and to recognize symptoms of mental illness in order to make appropriate referrals and provide proper support.

If depression is not already present, older adults who transition to skilled nursing are at increased risk for experiencing mental health problems (Bagley et al., 2000). Choi, Ransom, and Wyllie (2008) noted that prevalence rates of depressive symptoms among nursing home residents range from 9% to 75%, and prevalence rates for major depressive disorders range from 5% to 31%. Some estimate the numbers to be even higher when residents with dementia are included, for depression is often a secondary diagnosis to dementia (Choi et al., 2008; Snowden, Sato, & Roy-Byrne, 2003). Major themes related to the onset of depression in older nursing home residents include loss of physical independence, freedom, and continuity with their past lives; feelings of social isolation and loneliness; lack of privacy and frustration at the inconvenience of having a roommate and sharing a bathroom; loss of autonomy due to institutional regimens and regulations; ambivalence toward cognitively impaired residents; ever-present death and grief; staff turnover and shortage; and stale programming and lack of meaningful in-house activities (Choi et al., 2008; Dahle & Ploeg, 2009).

According to Houser (2007), nearly all nursing homes provide mental health services, either on or off site, especially as nursing homes have become the primary institutional setting for older adults with serious mental illness (Bartels, Miles et al., 2003). Approximately 80% of newly admitted residents undergo some form of depression treatment (Boyle et al., 2004). Similar to ALFs, very few nursing home staff members recognize depressive symptoms. In fact, less than 2% of nursing home staff receives any kind of in-service training on depression (Bagley et al., 2000). Cohen, Hyland, and Kimhy (2003) found that fewer than one fourth of depressed residents were identified and treated by nursing home physicians.

With nursing staff spending on average only 3.7 hours per day in direct nursing care (Harrington, Carrillo, & LaCava, 2006), it is crucial that nursing and frontline staff members are properly trained to recognize symptoms of mental illness in order to prevent underdiagnosis and inadequate mental health treatment. It is often difficult to identify signs of depression in the nursing home. Even though symptoms of depression among older adults have been classified as being no different than in younger populations, identifying depression can be challenging because depression conditions often coexist in other medical conditions, including dementia (Kales, Chen, Blow, Welsh, & Mellow, 2005). For example, for persons with major depression, significant risk indicators for older nursing home patients have been identified as pain, functional limitations, visual impairment, stroke, loneliness, lack of social support, negative life events, and perceived inadequacy of care (Jongenelis et al., 2004). Signs and symptoms of depression in nursing home residents can include excessive use of services, decreased socialization, apathy/flat affect behavior, combative/resistive behavior, delusions, paranoia, sleep problems, and weight loss/poor appetite (Quality Partner of Rhode Island [QPRI], 2004). Suicide risk can also increase with relocation into a nursing home (Davis, Kenarney, Murdell, & Zabak, 2001). The incidence of mortality increases among depressed nursing home residents, but this can be combated through appropriate psychiatric treatment (Sutcliffe et al., 2007).

HEALTH OUTCOME CONSIDERATIONS FOR FORMAL LONG-TERM CARE

COMORBIDITY

When two or more disorders or illnesses occur in the same person, simultaneously or sequentially, the occurrence is called comorbidity. A hallmark of depression in older people is its comorbidity with medical illness (Lyness, Niculescu, Xin, Reynolds, & Caine, 2006; Scott et al., 2007). With impaired decision making and health practices as a part of depression come increases in medical comorbidity, which can increase the need for greater care along the long-term care continuum (Alexopoulos et al., 2002; see Case Study 13.1). For instance, older adults hospitalized for heart failure who also present with depression have a 50% increased risk of a nursing home admission, compared to nondepressed older adults (Ahmed, Ali, Lefante, Mullick, & Kinney, 2006). Persons admitted with depression have higher rates of comorbid conditions than those admitted with dementia and individuals free of dementia and mental illness (Fullerton et al., 2009).

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