Tracy Montigny '05
Grappling With Demons
- Surviving a Family Suicide, by Jeffrey L. Sternlieb ’69
- Music, Stigma and Carrying a Voice, by Robert Simpson ’69
- Nipping Madness in the Bud, by James Maier ’69
- Striving for Hope, by Richard Aronson '69
Nipping Madness in the Bud
By James Maier ’69, research psychiatrist, Maine Medical Center, PIER program for early intervention in psychosis
One of the most tragic and unsettling aspects of major mental illnesses like schizophrenia and bipolar disorder (also known as manic-depressive illness) is their propensity to strike down young people just at the threshold of adulthood. At a time when one’s identity apart from the family is being forged or consolidated, when emerging sexuality and intimate relationships are becoming a major life focus, when thoughts about a future career are accelerating, these illnesses can totally disrupt an individual’s development and devastate the family. In the long term, schizophrenia can result in multiple hospitalizations, an inability to support oneself, a higher risk of suicide and other mental illness, and a shortened lifespan. A single case can cost millions of dollars in direct care, lost productivity and countless other less-tangible losses over a lifetime. The human cost in suffering, particularly for illness that goes untreated, is incalculable.
In decades past, the diagnosis of schizophrenia implied an inevitable decline in functioning, as the earlier label “dementia preacox” signified. Hollywood’s images of the chronic patient (One Flew Over the Cuckoo’s Nest; I Never Promised You a Rose Garden; Me, Myself and I) are often depressingly pessimistic, grotesquely comical, inaccurate or frighteningly violent.
In actuality, the prognosis today for recovery from schizophrenia and for many other psychiatric illnesses has never been better. Successive generations of newer antipsychotic medications are able to control dramatic symptoms like hallucinated voices, irrational fears, and bizarre beliefs and behavior, without the deadening of emotions and over-sedation that were hallmarks of an earlier generation of drugs such as Thorazine and Mellaril. And a host of innovative programs—supported employment and education, subsidized group and individual housing, and assertive community treatment schemes that bring multidisciplinary mental health teams out to individuals who might never set foot in a clinic—are making a crucial difference in an individual’s chances of returning to normal functioning.
However, a series of reports about the nation’s mental health (the first to address this enormous public health problem after decades of reports about smoking and health) from former Surgeon General David Satcher reveal that because of stigma, misunderstanding and lack of services, only a fraction of mentally ill individuals receive the care they need. Tragically, the average patient suffers psychotic-level symptoms like hallucinations and irrational fears for two years before getting treatment.
A bright spot on the horizon is the dramatic possibility that serious mental illness leading up to psychosis may be stopped in its tracks by early recognition and treatment. Around the world—initially in England, then in Australia, Norway, Germany and here in the U.S.—researchers have moved from aggressively treating first episodes of psychosis after they occur to initiating treatment before early-warning symptoms can progress to clearly diagnosable illness and hospitalization. Such early intervention is effectively putting a guardrail at the top of the cliff instead of parking ambulances underneath it.
By developing ever-greater ability to recognize the earliest warnings of an impending break with reality, while symptoms may be still fleeting and intermittent, early intervention provides a ton of cure for an ounce of treatment. These cutting-edge programs around the world have uniformly shown that it may be possible to attenuate or even eliminate early symptoms that are already causing distress and impaired functioning. In the best-case scenario, early treatment may indefinitely prevent the onset of schizophrenia or bipolar disorder, or at least greatly attenuate its potential impact. There is even early research evidence that some of the newer antipsychotic medications, together with psychosocial treatments, may be reversing the progressive anatomic changes that underlie clinically active illness.
In Portland, Maine, where I work, an effort is underway to identify all of the young people at risk of psychosis and bring them into treatment as soon as possible. Epidemiological studies suggest that in any given year about 50 individuals in the Portland area may experience the onset of schizophrenia, bipolar disorder or severe depression accompanied by psychotic symptoms. The goal is to find, screen and treat these individuals, for whom a “wait and see” strategy could lead to a first psychotic episode requiring hospitalization. A screening questionnaire helps separate the truly high-risk population from the false positives. This effort has entailed an ambitious education program to teach school and college guidance personnel, physicians, mental-health professionals and eventually as many people in the community as possible about the warning signals of severe mental illness, and about the importance of early treatment.
The Portland Identification and Early Referral, or PIER, occupies a nondescript, inconspicuously labeled brick building that was formerly an aluminum-siding warehouse, several blocks from the more readily recognized Outpatient Mental Health Clinic of the Maine Medical Center.
In its first two years as a pilot program, PIER has identified and treated without cost some 44 young people and their families. These are young people experiencing warning symptoms that include social withdrawal; a marked drop in functioning at school, home or work; peculiar behavior; increasing difficulty with concentration; heightened sensory levels; loss of motivation or energy; dramatic sleep and appetite changes; suspicion of others; and irrational beliefs about personal powers or influences.
Fortunately, the number of individuals in the pilot group who have “converted” from early symptoms to overt psychosis is only 13 percent, rather than the 50 percent that would be expected in the absence of treatment. Of these, only two or three individuals have developed early-diagnosable schizophrenia or bipolar disorder; most have improved with medication and support without needing hospitalization. Rarely, a hospital stay of just a few days has been necessary for the young person to get back on track with school, social life and other activities. In fact, psychiatry residents at our local inpatient units have complained that they seldom see or treat “first-break” young patients.
One powerful stabilizing force for most of these families has been participation in biweekly multifamily psycho-educational groups. These groups of four to six families meet over a two-year period, providing a reliable support network for folks who might otherwise be feeling isolated, frightened, or too guilty and ashamed to seek advice or support.
As a researcher fortunate enough to be a part of a worldwide movement to stop major mental illness at its outset, I find all of the above exciting and challenging. But it is truly compelling for me because I am the parent of a son who has experienced a severe psychotic illness.
Symptoms of what was subsequently diagnosed as bipolar disorder began after Sam’s return to the U.S. following a year of school in northern Norway. At that time, no program like PIER existed, and our family searched the area unsuccessfully for a support group during the ordeal of extreme mood shifts, several suicide attempts and three hospitalizations.
Fortunately, Sam has done well since this stormy and frightening onset. He now leads a stable, symptom-free life as a graduate student in Norway, preparing to become an English teacher in that country. He is very fortunate to have married a woman he met at his folk high school in Alta, above the Arctic Circle, and he has found excellent psychiatrists who help him monitor the medications that stabilize his mood. Moreover, medical care is free in this more advanced society. He is also the proud new father of twins born in September. By poignant coincidence, Sam and Maud live in Stavanger, a town on Norway’s coast quite similar to Portland, Maine, that is home to the TIPS project, one of the most sophisticated programs of early intervention in psychosis in the world.