Unmet Mental Health Care Needs: Layered Marginalities in Older Adult Populations

Abstract:

This article addresses the mental health care needs of three groups of older adults with layered marginalities: undocumented immigrants, those with serious mental illness, and those with intellectual disabilities. The needs and barriers related to mental health care provision for these groups are complex. Providing adequate support will require substantial changes at all care levels, including a need for legal access to care, adequate numbers of healthcare providers, additional training on aging for providers, and addressing stigma about including these groups and about mental health care needs. Addressing these needs will require resources and social and political will.

Key Words:

undocumented immigrants, intellectual disabilities, serious mental illness

Determining the current mental health needs of older adults in the United States is challenging. Estimates from the Substance Abuse and Mental Health Services organization (SAMHSA)’s National Survey on Drug Use and Health (SAMHSA, 2021) indicate that approximately 12% (6,500,000) of adults ages 65 and older experienced mental illness in the past year. However, February 2023 estimates of anxiety and depression alone are approximately 20% (1,156,000) in adults ages 65 and older (Panchal et al., 2023; United States Census Bureau, 2022a). Because these numbers do not include older adults with substance use issues or other mental health concerns, the magnitude of potential care needs is likely much greater.

Adding to these concerns is the lack of U.S. mental health care providers. Currently, only 27.19% of the U.S. population lives in an area with enough mental health providers to meet care needs (Health Resources and Services Administration, 2023). For those unable to access mental health care providers, affording the care is a barrier for approximately 40% (7,821,000) of the population (SAMHSA, 2021), including the approximately 6 million adults older than age 65 who live below the poverty level (U.S. Census Bureau, 2022b).

In addition to the lack of care providers and care affordability, there is pervasive stigma related to mental health concerns. The impact of this stigma reduces the likelihood that someone will seek mental health care (Golberstein et al., 2008; Moran, 2019; Thornicroft, 2008). Additionally, older adults may have a general lack of perceived need for mental health treatment and may internalize more stigma and negative attitudes toward mental health treatment than do younger cohorts (Lavingia et al., 2020).

Treatment for mental health concerns is even more challenging for older adults belonging to groups that are routinely marginalized in the healthcare system and society at large, including undocumented immigrants, individuals experiencing serious mental illness, and people with intellectual and developmental disabilities. As discussed below, these groups often experience layered marginalities that result in significant barriers to care, which are further complicated by current and historical mistreatment in our healthcare systems. Below, we explore overarching challenges and barriers for these populations and suggest potential improvements in care systems.

Undocumented Older Adults

The population of undocumented adults in the United States is aging. Due to increased border security and regulations, undocumented individuals who immigrated to the United States between the 1980s and mid-2000s to work were unable to engage in the decades-long practice of cyclical migration. Thus, many people ended up settling roots in the United States—eventually building families, becoming valuable parts of communities and economies, and aging. According to a study by Ro et al. (2022), the U.S. undocumented Latinx population of older adults will grow nearly sevenfold by 2038. Meanwhile, statewide projections from Illinois predict the undocumented older adult population will increase more than eleven-fold (Stanley & Lange-Maia, 2020).

Lack of Access, Resources, and Preparedness of Helping Professionals

Many undocumented older adults have lived for decades without access to health or mental health care, income security, benefits, or workers’ rights, and have been subjected to racism, discrimination, stress, harsh living situations, and fear of deportation (Garcini et al., 2021; Stanley & Lange-Maia, 2020). Undocumented older adults in most states do not have access to public options for healthcare and rarely are able to obtain jobs that provide healthcare benefits, leaving more than 40% without insurance (Ro et al., 2022). Accessing the limited health and mental health care services available to this population is too often extremely challenging or impossible. Additionally, because many undocumented older adults also cannot draw from Social Security and most do not have retirement plans, people are forced to work until they physically cannot anymore.

In 2014 and 2017, Roots to Wellness Collaborative conducted studies that underscore these points. Roots to Wellness is a collaborative of health and mental health care providers, community organizations, and faith organizations on the Southwest Side of Chicago. This collaborative was convened by Enlace Chicago, a nonprofit organization working to confront systemic inequities and access barriers faced by residents in Little Village, the principal entry point for Mexican immigrants to the Midwest.

In these studies, immigrants reported wanting mental health care and, further, did not have personal feelings of stigma about obtaining mental health care. However, they reported encountering structural and social determinants of health that were barriers, specifically affordability, access to childcare, transportation, language, availability, and long (or closed) wait-lists (Roots to Wellness, 2014, 2017). In short, the immigrant population wants mental health treatment; however, access and workforce barriers keep them from the services they need.

Neither the systems serving older adults (healthcare, public health, and social services) nor those serving the undocumented population (federally qualified health centers, multipurpose social service organizations) are prepared to work with undocumented older adults. A study conducted by Stanley and Lange-Maia (2020) found that services used for mutual aid, support, socialization, and access to services did not include older adult offerings because the services older adults depend upon to live well, manage their health, and age in place are largely unavailable to those who are undocumented.

This disconnect was mainly due to a lack of understanding of need when populations experience overlapping marginalities. For example, the free clinic serving the undocumented population did not have any providers prepared to work with older adults—and a donation bank that provided free durable medical equipment to older adults and others in need had no Spanish-speaking employees and required a Social Security number for their intake forms.

Additional examples of overlapping marginalities causing significant disparities included a mental health agency that provides specialized therapy for older adults but only accepts Medicare, for which undocumented populations do not qualify; legal services for advance directives that only serve U.S. citizens; a lack of gerontology specialists in free health or mental health clinics; and social service care coordinators in free clinics that are unprepared to aid people with multiple chronic conditions, including connecting them to senior or home-based services.

Advocates and professionals in the aging network are gaining awareness of the aging of the undocumented population, but there is a substantial need to advocate for structural solutions. These solutions must include immigration reform, expanding public healthcare systems to cover those who are undocumented, and cross-training workforces. We also must advocate for individuals, regardless of immigration status, to be able to access quality mental health care delivered by competent providers. Healthcare professionals, including mental health professionals, who are prepared to work with this population also should be prepared to face the grim realities of the disparities this population has endured.

Older Adults with Serious Mental Illness

The National Institute of Mental Health (2023) defines serious mental illness (SMI) as, “A mental, behavioral, or emotional disorder resulting in serious functional impairment, which substantially interferes with or limits one or more major life activities.” SMI typically includes diagnoses of schizophrenia, schizoaffective disorder, bipolar illness, or major depressive disorder—diagnoses that often include symptoms that can cause significant functional impairment (SMI Advisor, n.d.). Note that other diagnoses may also be included in this definition depending upon the level of functional impairment. SMI can impact many areas of life and functioning, particularly for older adults.

Although people in general are living longer due to advances in healthcare, older adults with SMI have shorter lifespans (10–20 years) when compared to those without these disorders. Generally, they also have more chronic health conditions for their age and can be considered as “older adults” well before age 65 (Laursen, 2011; Lee et al., 2018). In the United States, the number of older adults with SMI is estimated to be around 2.5% of adults older than age 50, with diagnoses that range from approximately .2% (115,600) for the lower estimates of schizophrenia to 5% (2,891,100) in the estimates of major depression and/or bipolar illness (Mueser & Jeste, 2011; National Institute of Mental Health, 2023; SAMHSA, 2022).

Needs and Related Barriers to Adequate Care

Older adults with SMI have care needs ranging from basic (food and shelter) to physical concerns (mental health symptoms, and social and physical functioning). Care and service provision for people with SMI, including older adults, is often provided by public institutions including Community Mental Health Centers, nursing homes, Veterans Health Administration Medical Centers, and Certified Community Behavioral Health Clinics (CCBHCs).

Although these agencies are expected to address the physical, mental, and social needs of this population, many are inadequately supported given their broad scope. Studies related to funding and care quality indicate lower quality of care for those with fewer individual-level resources (McGinty et al., 2015). People with SMI often struggle with individual-level resources including money, basic needs, and capabilities. This can also include limited personal capacities as well as the constraints and limited opportunities afforded them (Sylvestre et al., 2018).

Older adults with SMI have higher documented rates of comorbid diseases including lung and cardiovascular diseases and diabetes. Many people also experience side effects, including obesity and tardive dyskinesia, from medications used to treat mental health symptoms (Lee et al., 2018; Newcomer, 2007). And people with SMI are at greater risk of developing dementia and of developing the condition at an earlier age (Richmond-Rakerd et al., 2022) than peers without SMI. Adequate mental and physical care for older adults with SMI requires care by an interdisciplinary team of highly skilled practitioners able to address the intersectionality of symptoms, social determinants of health, and the peculiarities of the fragmented U.S. healthcare system.

Improvements in Mental Health Care

The often-layered marginalities described above exist on a backdrop of historical maltreatment and ongoing self- and societal stigma surrounding the diagnosis and treatment of SMI. To improve care for older adults with SMI, a broad systems-change approach is needed to: 1) address the historic mistreatment of people with SMI; 2) fundamentally change the way care is delivered across settings; 3) ensure that an adequate number of trained care providers are available to address stigma and poverty and their impact on mental and physical symptoms; and 4) support and empower families, informal caregivers, and the older adults with SMI.

Significant, coordinated efforts also are needed at the system and individual levels. In many restricted settings (e.g., inpatient units) seclusion and physical and chemical restraints are used even though more person-centered, evidence-based options have been shown to be effective alternatives. Additionally, care provision must be a coordinated team effort given the complex needs of many older adults with SMI.

Also, more specialized training for providers at all levels of care is needed because those providing care and assistance to older adults with SMI (e.g., mental health case managers, nursing assistants, home health aides, community health workers) generally are not adequately prepared to work with complex populations.

Finally, enacting recovery-oriented care must include families, caregivers, and older adults with SMI in all levels of care provision, including policy decisions and formal processes. Inclusion must go beyond token representation and encompass a true partnership in structures and decisions. This approach empowers people with lived experiences and addresses the stigma undergirding barriers to care.

Older Adults with Intellectual and Developmental Disabilities (IDD)

Intellectual disability is one type of developmental disability (American Association on Intellectual and Developmental Disability, 2023). People with IDD experience significant limitations in intellectual functioning and adaptive behavior that occurs before 22 years of age. Historically, people with IDD in the United States were locked away in large, poorly funded institutions which did not provide adequate mental or physical care (Moro & Brashler, 2019) and most people with IDD did not live into older adulthood. People with IDD now live long enough to acquire the same conditions related to aging as the general population (Hahn et al., 2015; Moro et al., 2017). Additionally, the population of older adults with IDD continues to grow—it is estimated that this population will double by 2030 (Hahn et al., 2015).

Barriers to Mental Health

Approximately 40% of people with IDD have co-occurring mental health conditions (The Arc, 2019). Thus, people with IDD may seek mental health treatment for the same reasons as members of the general population. However, the mental health needs of older adults with IDD and how to best work with them is not well understood (Hahn et al., 2015). People with IDD confront common barriers when trying to obtain care, including difficulty communicating with providers, limited access to care, untrained providers, and poor pain and symptom management (Hahn et al., 2015; Moro et al., 2017; Moro & McGinley, 2021). Additionally, many adults with IDD experience sudden residential and care transitions later in life, which can increase stress, depression, and anxiety. Despite the need, the systems serving adults with IDD and the mental health and aging services are all unprepared for the increasing number of older adults with IDD.

Mental health care for people with IDD tends to be inconsistent and fragmented. According to The Arc (2019), there are five primary barriers to providing mental health to people with IDD: 1) misperceptions about the capability of people with IDD; 2) uncertainty about how to best communicate with people with IDD; 3) a lack of understanding about the needs of people with IDD and co-occurring mental health conditions; 4) a lack of knowledge about available entitlement programs and how service providers interact; and 5) a lack of collaboration across the disability, education, and mental health systems. Virtually all mental health professionals lack training in working with older adults with IDD (Hahn et al., 2015; Moro et al., 2017; Moro & Brashler, 2019).

Suggestions for Improvements

Mental health providers need to educate themselves on how to best provide care to older adults with IDD, which may include training and resources from organizations including the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), The Alliance for Disability in Health Care Education (ADHCE), NADD, or local Arcs. The NTG advocates for services and supports for people with IDD impacted by Alzheimer’s disease and other dementias. ADHCE promotes the inclusion of disability-related theory, research, and clinical learning experiences in healthcare training. NADD is devoted to promoting knowledge, training, policy, and advocacy for people with a dual diagnosis of IDD and mental health conditions.

Finally, The Arc is the oldest national disability rights group for people with IDD. It is important for mental health providers to also become advocates by encouraging educational programs to include disability content in their courses (Moro & Brashler, 2021).

Another critical aspect to providing mental health care to older adults with IDD is to be aware of personal bias (Moro & Brashler, 2019). The United States is still deeply entrenched in the medical model of health in which health and illness reside in the individual, meaning that IDD is viewed as something wrong with the person. Too often, clinicians make erroneous assumptions about what people with IDD are capable of, which can lead to people not getting the mental health care they deserve.

It is key for mental health providers to facilitate open communication, at an appropriate level, with older adults with IDD and to ask them if they would like a trusted support person (family, friends, or agency staff caregivers) with them, instead of making assumptions (Moro & Brashler, 2019; Moro & McGinley, 2021). Additionally, providers may not notice the subtle changes an older adult with IDD and dementia exhibits, or they may misattribute behavior changes to IDD, when, they are manifestations of pain or underlying illness (Hahn et al., 2015; Moro et al., 2017; Moro & Brashler, 2021).

In Summary

Overcoming the challenges and barriers faced by various groups of older adults with layered marginalities requires advocating for change within systems of healthcare funding, regulation, training, policy, and provision. To generate the social and political will to make these changes, we must work to eliminate the stigma of belonging to marginalized groups, the stigma of needing mental health care, and the mistreatment that results.

Marcia G. Hunt, PhD, is a clinical psychologist and associate professor adjunct in the Department of Psychiatry at Yale University Medical School. She has worked in settings that provide care for adults with serious mental illness, including the Community Mental Health Center and the Veterans Health Administration. Dr. Hunt chairs the American Psychological Association task force on serious mental illness and severe emotional disturbance. Teresa Moro, PhD, AM, LSW, is a professor in the Department of Social Work in the College of Health Sciences and a health services researcher with the Center for Health and Social Care Integration at RUSH University Medical Center in Chicago. Dr. Moro serves on the board of the Alliance for Disability in Health Care Education and the National Task Group on Intellectual Disabilities and Dementia Practices. Padraic Stanley, MSW, LCSW, is the program manager of community integration for the RUSH University Medical Center Department of Social Work & Community Health. He also chairs RUSH’s Immigrant Health Working Group, and is an adjunct professor of social work at Loyola University Chicago and DePaul University, associate professor of Social Work for the RUSH University College of Health Sciences, on the associate board for Erie Neighborhood House, and the executive board for the International Association for Social Work with Groups.

Photo credit: Shutterstock/Kits Pix

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