Early in my career, I took my oldest daughter to her first dentist appointment. Making small talk, the dentist asked me what I do. I told her about my research on barriers to care, the stigma surrounding mental illness and interventions to improve treatment participation for older adults. As she listened, I saw her eyes well up with tears. She told me about her father, who had been depressed in the final years of his life and had refused mental health care. Looking back, she remembered his fears about talking to a mental health provider. She told me that the family had difficulty untangling her father’s medical illness from his aging-related functional losses and from the symptoms of major depression. They recognized later that their own biases were subtle and insidious. I have heard similar stories from family members, friends, providers and my own patients. As older adults are identified as needing mental health care or seek it out themselves, they often come face to face with barriers to care.
Much can be learned about the psychological perspectives of older adults who may need mental health care by conducting research out in community settings. When you speak with older adults in senior centers or apartment buildings, they openly talk about their reluctance to seek care. They do not perceive the need for treatment, either because they attribute their difficulties to normal aging or medical illness; or perceive the financial and social costs of treatment to be too high. In addition to the financial costs of care, it is the anticipated social costs of stigma and rejection by others that are often equally intimidating. For many of these older adults, mental illness is not like pneumonia where symptoms such as shortness of breath that cause distress are readily identifiable as abnormal and precipitate seeking care. Instead, many depressed older persons struggle to get moving, take care of themselves and their families, and manage their day to day affairs. They do not perceive themselves as suffering from a mental illness. As a natural consequence, these older persons do not see that their difficulties could be ameliorated by seeking and participating in treatment. Many older adults perceive their distress as an intractable part of the aging process. If depression, medical illness and loss are a normal part of aging, why would one think to seek help?
Seeking care is a health behavior that emerges out of an often “non-conscious cost benefit analysis”. It is only when we ask older adults the rationales for their choices and about their experience that these attitudes and beliefs become clear. To accept a referral and participate in mental health treatment reflects a balancing of barriers to care and the perceived need for care. Many providers are aware of the barriers older adults face due to transportation, expenses living on a fixed income, and the impact of medical illnesses. But often these factors obscure the attitudes and barriers that may be equal determinants. For older adults with depression, their low energy and resignation resulting from symptoms, cognitive deficits and associated difficulties in functioning each compound one another. In our work with community-dwelling clients of Westchester County aging services, we have found that half of elders who report symptoms of depression that would warrant attention do not perceive themselves as suffering from an emotional illness. Many express concern about the social costs of being stigmatized for seeking depression treatment. Even among those older adults who do initiate mental health care, perceived stigma is a barrier to both participation in treatment and antidepressant adherence. When teased apart, beliefs about depression, preferring self-reliance and lack of knowledge about services can contribute to the lack of mental health service usage.
Additionally, barriers may reflect cultural assumptions about need and mental health care. Concerns about stigma, fear of involuntary hospitalization and reluctance to divulge personal information are common among older persons from culturally diverse and less economically advantaged communities. Based on resilience theory, at the individual level reluctance to seek care among minority older persons may reflect effective coping mechanisms and adaptations to having survived racism and discrimination. Over time, these coping mechanisms and adaptations can evolve into obstacles to health care in later years. Preferences for self-reliance, use of home remedies, faith-based interventions and care avoidance due to mistrust of care providers may be powerful remnants from earlier healthcare abuses. In these cases, the predisposing factors that once served to protect the individual have now become barriers to care.
In our recent work we found that older adults are aware of concerns about both public perceptions of stigma and personal social costs. When asked if “most people would willingly accept a person who has had depression as a close friend”, 39% of older adults interviewed who endorse symptoms of depression did not agree. Similarly, 47% felt that most people did not believe that a person who has been hospitalized for depression is just as trustworthy as the average citizen. When reflecting on the reactions of their own family and friends, more than a third were concerned that others would treat them differently (40%), judge them (40%) or distrust them (40%). These reports confirm the continued concerns of older adults about societal stigma as well as personal stigma.
To combat stigma and other barriers to care we are working to develop interventions that promote engagement in mental health services among older adults identified in the community. Inquiries about what they expect when seeking mental health care, who in their lives has had similar difficulties or treatment, and who in their community knows about their illness can elicit information about stigma and other barriers. Prior experiences and concerns about what will happen in treatment can provide a way of openly discussing barriers to care. By understanding the concerns about accessing care, defining goals that could be achieved if care is effective and collaborating to address the barriers, our interventions hope to help older persons seek the care they can use, engagement in a collaborative treatment relationship with a provide and adhere to treatment agreed upon. Taking these steps may help address depressive symptoms that compromise the quality of life.
Jo Anne Sirey, PhD, is Associate Professor of Clinical Psychology in Psychiatry at the Weill Medical College of Cornell University and is associated with the Weill Cornell Institute for Geriatric Psychiatry, both in New York City. The Weill Cornell Institute located on the campus of New York Presbyterian Hospital in White Plains provides screening for depression to older adults. For more information, please call (914) 997-4331. Her research is supported by research funding from the National Institute of Mental Health (R01 MH079265, R01 MH087562).