Mounting evidence shows that patients with bipolar disorder benefit significantly when their families are involved in treatment. Despite the challenges entailed, clinicians can successfully implement a family-focused approach if they’re willing, flexible and patient.
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One afternoon last spring, Igor Galynker, MD-associate chairman of psychiatry at Beth Israel Medical Center in New York and director of the Zirinsky Mood Disorders Center there-had a meeting with a bipolar man's wife that brought home to him the enormous stresses on family members of patients with bipolar disorder, and the need for mental-health clinicians to involve the family more actively in their treatment. The encounter, in fact, led Galynker-whose work had focused on medication adherence and other aspects of mood disorders-to change the focus of his career.
His meeting was with Susan (not her real name), a well-educated, middle-aged mother of four, who had recently gone through a divorce from her husband of more than 20 years-a smart, successful financier who suffered from severe bipolar disorder. Susan had seen her marriage and her family fall apart due to the increasing severity of her husband's illness: his irritability and depression, his inability to function normally, and his abrupt swings into mania. Susan's husband (whom Galynker did not know) had received ECT and been hospitalized several times in the previous 5 years, and throughout these episodes she had tried to talk with his psychiatrists and become involved in his treatment. But the doctors had declined to discuss his case with her, because he had told them he didn't want his family involved. Susan felt shut out and desperate. She didn't even know what medications her husband was taking. When Susan began talking with other family members of bipolar patients, she learned that her experience wasn't unusual: Many told her they, too, felt left out of-even pushed away from-the treatment of their bipolar spouse, parent, sibling or child.
Hoping to spur change
So Susan came to Galynker's office-not for therapy, but to share her concerns in hopes that it might spur action to help other family members. Galynker recalls being "stunned" by Susan's story, and he resolved to pursue the issue. In his many years of treating bipolar patients-including 15 years working on an inpatient psychiatric unit at Beth Israel-he had quietly and informally developed an approach of working with patients' families. Under this approach, Galynker had family members attend therapy sessions with the patient on a regular basis, at least quarterly. At these sessions, he would educate the patient and family about bipolar disorder; discuss the patient's symptoms and the family's reactions to them; reach a consensus on the patient's medication regimen; and work with the family on coping skills, problem-solving and a "relapse response plan." Working with patients' families made intuitive sense to Galynker: "When someone in the family is bipolar, the whole family is ill, so the whole family needs to be in treatment." Until his meeting with Susan, however, he hadn’t realized that a family-focused approach to the illness was relatively uncommon, and sorely needed. Studies show benefits of family involvement Eager to learn more, Galynker searched the literature and found a small number of studies on the stresses experienced by family members of bipolar patients; how the family's reactions affect the patient's recovery; and the pioneering work of University of Colorado psychology professor David Miklowitz, PhD, who since the early 1980s has developed and studied a structured program of family-focused therapy for bipolar disorder. Among the findings:
Key elements, goals of family-focused therapy
In family-focused therapy, the patient and family members attend all sessions together, in addition to the patient's (individual) medication-monitoring visits with a psychiatrist. The program has 3 key components:
The main goals of family-focused therapy, and other family interventions for bipolar disorder, are to:
Working toward a standard of care
At Beth Israel, Galynker decided to formalize his family-involved approach and adopt a less-structured approach with some of the elements of family-focused therapy, which he calls "family-inclusive therapy," or FIT. Galynker created a FIT program at Beth Israel in summer 2006, and he is now doing research to evaluate its effectiveness. During a conference this summer, Galynker met with the University of Colorado's Miklowitz and sought his guidance on how best to use the elements of family-focused therapy in a community hospital setting. Psychiatry residents at Beth Israel are also being trained in this approach.
Anecdotally at least, Galynker considers his efforts a success. He speaks of a "surprising level of acceptance" and the "dramatic improvements" he's seen in some in some of his participating patients and their families. He has discussed his approach with the National Alliance on Mental Illness (NAMI) and presented at the the American Psychiatric Association's 2007 annual meeting. His goal, like that of Miklowitz and others working in this area, is to see a family-oriented approach to bipolar disorder become broadly adopted. “We don't want this to be an experimental program in a lab-we want it to become the standard of care," Galynker explains.
He adds that "it's absolutely puzzling to me that more clinicians don't get the families involved," especially given the strong genetic component which makes children of bipolar patients vulnerable to developing the disorder. While there's no hard data on how often family members participate in the treatment of their bipolar relatives, those who specialize in this area say it is the exception, not the rule. By all accounts, the most common approach is periodic medication-monitoring visits with a psychiatrist, sometimes supplemented by individual CBT or supportive counseling. When the family does participate in therapy, it is typically for one or two sessions, but not for ongoing treatment.
Closing the gap between research and practice
"There's clearly a gap between the research and the practice," says Miklowitz, whose work on family therapy for bipolar disorder built upon similar work with families of schizophrenia patients. "[Bipolar patients’] families frequently complain that they want to be involved in treatment but the clinician won't talk to them. Based on our findings, we feel strongly that families ought to be actively involved in treatment."
Though Miklowitz once encountered considerable skepticism and resistance to the concept among clinicians, he's now seeing increased interest from them. That's evident in the number of requests he's received from hospitals and clinics to do training in family-focused therapy; the enthusiastic response to panels on the topic at professional meetings; and the various projects underway to refine and expand the treatment approach. John S. McIntyre, MD-past president of the American Psychiatric Association and chair of its steering committee for practice guidelines-confirms that “over the last two decades, we've seen an increasing movement to involve the family in treatment for bipolar disorder and other serious mental illnesses. The APA has been very strong in encouraging that. The evidence shows that family interventions make a real difference."
Clinical guidelines discuss family intervention
The APA's clinical practice guidelines for bipolar disorder, published in April 2002, advise clinicians to “involve family members in treatment whenever possible”; “help the patient and family to recognize early signs of manic or depressive episodes”; educate family members about bipolar illness; and “recognize stress or dysfunction in the family,” as this “may exacerbate the patient’s illness.” The 2002 guidelines state that “group psychoeducational interventions”-including family-focused therapy-“appear useful” according to available evidence, but “despite promising results … improvements have not been consistently documented.”
The APA’s interim update to these guidelines, however-a “Guideline Watch” released in November 2005-notes that "knowledge of the utility of psychosocial interventions [including family interventions] has recently expanded." It cites a (previously mentioned)2-year randomized, controlled study which found that patients who participated in family-focused therapy plus medication had fewer relapses, better post-episode adjustment and better medication adherence than a group that received a crisis-management intervention. For his part, McIntyre asserts that "in many cases, the families [of bipolar patients] are, in fact, involved in treatment." While a structured, manual-based program such as family-focused therapy is beneficial for many patients and families, he says, that is just one of several viable ways to involve families. Miklowtiz agrees. "This is not a one-size fits all solution. You have to mold the therapy to fit the situation and the patient." He notes, for example, that unlike his family-focused therapy program-in which the patient and family attend all sessions together-a mix of individual and family sessions is more appropriate for some patients. Regardless of the treatment model used, though, Miklowitz contends that just a few family sessions aren't enough to provide real benefit. His research finds that it takes 6-9 months of family-focused therapy to see clinically meaningful benefits, such as fewer hospitalizations and relapses.
Family members reap benefits
Advocates of family-focused interventions for bipolar disorder also point to the benefits that family members gain. That's important because studies led by Deborah Perlick, PhD, associate professor of psychiatry at the Mount Sinai School of Medicine, have found that family members of bipolar patients who report strain from caregiving are at greater risk of mental and physical illness.
For example, a 2005 study that assessed the family caregivers of 264 bipolar patients found that 33% of the caregivers had clinically significant levels of depressive symptoms. And, a 2007 study that evaluated the primary caregivers of 500 patients enrolled in the STEP-BD trials, found that burdened family caregivers were at higher risk of insomnia and chronic conditions such as hypertension, but were less likely to see a doctor about their ailments. "This disease can be incredibly stressful for the family," observes Perlick. "They're hypervigilant, always on the alert for mood swings. They don’t sleep well. They don’t take good care of themselves.”
Perlick is leading an NIMH-funded project that combines psychoeducation and CBT techniques to develop a health-promoting intervention for family caregivers of patients with bipolar disorder. The hope is that such efforts will prevent, or reduce the severity of, family members' own mental and physical illnesses. That could reduce healthcare service utilization for entire families, making the interventions cost-effective in the long term. And, having less stress at home helps patients with bipolar disorder feel more secure, leading to longer periods of recovery. "We're not helping just the patient or just the family; we're helping both. It's all intertwined," explains Martha Tompson, PhD, associate professor of psychology at Boston University, who studies the impact of family interventions for bipolar and other mental disorders. Barriers to family involvement
Despite the compelling reasons for involving family members in the treatment of bipolar disorder, several barriers can get in the way:
If the family declines to participate in therapy, suggest a family support group or course, such as NAMI's Family-to-Family Program, a structured 12-week course for family caregivers of those with severe mental illness, available in communities nationally. A 2004 study found that participants who completed the program felt less burdened, more empowered and more knowledgeable about their family member's mental illness. The Depression and Bipolar Support Alliance also offers a national network of support groups for patients and their families. While these programs aren’t a substitute for therapy, they offer helpful psychoeducation and support.
Final pointers and pitfalls
To succeed with family-focused interventions for bipolar disorder, and to deal with the inevitable challenges, experts offer this guidance:
RELATED LINKSResearch studies
A Randomized Study of Family-Focused Psychoeducation and Pharmacotherapy in the Outpatient Management of Bipolar Disorder, Archives of General Psychiatry, September 2003
Psychosocial Treatments for Bipolar Depression: A 1-Year Randomized Trial From the Systematic Treatment Enhancement Program, Archives of General Psychiatry, April 2007
Prevalence and correlates of burden among caregivers of patients with bipolar disorder enrolled in the Systematic Treatment Enhancement Program for Bipolar Disorder
Bipolar Disorders, May 2007
Family factors and the course of bipolar affective disorder Archives of General Psychiatry, March 1988
Psycho-education in bipolar disorder: effect on expressed emotion, Psychiatry Research, August 1997
Patient support resources
NAMI Family-to-Family Program Depression and Bipolar Support Alliance
Clinical practice guidelines
(interim update) Guideline Watch: Practice Guideline for the Treatment of Patients with Bipolar Disorder, 2nd edition, American Psychiatric Association, November 2005
Practice Guideline for the Treatment of Patients with Bipolar Disorder, 2nd edition, American Psychiatric Association, April 2002
Treating Bipolar Disoder: A Quick Reference Guide, American Psychiatric Association, April 2002.