Making Treatment for Bipolar Disorder a Family Affair

July 16, 2007

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:

  • Family members’ emotional responses to a patient's bipolar episodes have a significant impact on how well (or not) the patient recovers from the episodes, according to 4 independent studies in 3 countries. Specifically, if the family is highly critical, hostile and overprotective, the patient will have more severe symptoms and more frequent relapses, compared with patients whose families are supportive and understanding.
  • A 2-year randomized controlled trial of 101 bipolar patients, published by Miklowitz and colleagues in 2003, found that those who completed up to 21 sessions of family-focused therapy, in addition to medication, had fewer relapses, less severe symptoms and better medication adherence than a control group who received medication, two sessions of family education, and crisis intervention as needed.
  • An April 2007 study by Miklowitz and colleagues from the Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD) found that patients who received intensive psychotherapy (weekly sessions) in addition to medication recovered faster from bipolar depression, and stayed clinically well longer, than a group that received a brief psychoeducational intervention (3 sessions). The 3 types of psychotherapy studied-family-focused therapy, cognitive behavioral therapy and social rhythm therapy-were all found to be beneficial, although the rates of recovery from depression were highest among those in the family-focused therapy group.

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:

  • Family psychoeducation helps the family understand bipolar disorder and how it affects the patient.
  • Skills building teaches families to improve their communication skills, deal with stresses, and solve problems collaboratively.
  • Relapse planning entails working with the family to identify warning signs of a relapse and create an action plan that includes when to call the doctor, when to increase the patient's medications, and how to help the patient stabilize such as by regulating his sleep-wake cycle.

The main goals of family-focused therapy, and other family interventions for bipolar disorder, are to:

  • help the patient to stabilize and recover from episodes
  • increase the time between relapses
  • prevent hospitalization
  • improve the patient's functioning, such as staying in school, getting a job, or taking care of household duties
  • improve medication adherence by enlisting the family's help
  • ease family members' stress, and prevent them from developing-or lessen the severity of-their own mental-health problems
  • improve family relationships and keep families together

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:

  • The patient has no family locally. In that case, try to enlist the cooperation of a friend, neighbor or someone else in regular contact with the patient.
  • The family doesn't want to be involved in treatment. This is often due to stigma and shame surrounding mental illness-or a feeling that seeking help with caregiving is a sign of weakness. The clinician should try to dispel these notions and encourage family members to talk about their experiences with the illness. Ask if the family member will try attending one session with the patient.

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.

  • The patient doesn't want his family to participate in treatment. Often this is because the patient perceives his family as a threat, or fears that they and the therapist will "gang up" on him. In this case, try reassuring the patient and explain that the goal is to help the family understand him better. Ask the patient if it's OK to speak with a family member by phone-then see if the patient will agree to bring that person to a session.
  • Concerns around confidentiality. Clinicians may fear that working with patients' families could violate standards of confidentiality or open them up to lawsuits. In reality, the legal risks are minimal, provided that the patient and family agree-ideally in writing-to participate in treatment and to discuss the patient's symptoms openly. The clinician should also make clear when and how the patient should disclose to the clinician confidential information that he doesn’t want shared with family members.
  • The clinician lacks experience in family-focused therapy. Willing clinicians can develop the needed skills through CME courses, seminars and other resources. A helpful professional guide is Miklowitz’s 1997 book Bipolar Disorder: A Family-Focused Treatment Approach. He is also developing an educational DVD for clinicians in conjunction with the American Psychological Association. Miklowitz cautions that based on his experience, a book or video is not enough to master the approach, and some consultation with an experienced clinician-trainer, in person or by phone, may be needed.
  • Some clinicians view family intervention as counter to the psychoanalytic tradition of focusing on the patient’s personal insight and autonomy. Miklowitz asserts the opposite is true: "Say you have an adult male patient living at home with his mother. He wants to go out, get a job and live on his own. To help the patient achieve those things, you may need help from his mother."

Final pointers and pitfalls

To succeed with family-focused interventions for bipolar disorder, and to deal with the inevitable challenges, experts offer this guidance:

  • Win the family’s trust early. It's crucial to establish a rapport with all family members from the outset. "Let them know you're on their side and you want to help them. Assure them you're not going to take sides with one person over another," Miklowitz advises.
  • Help families and patients see each other's point of view. Through psychoeducation and open discussion, encourage the patient and family to see how the others view the illness and its symptoms.
  • Involve all family members. Make sure all of the family members in attendance contribute to discussions; make efforts to draw out those who may be hanging back. Getting the buy-in of all family members is especially important when doing problem-solving.
  • Make sure the family understands and supports the patient's medication regimen. Family members can play an important role in making sure the patient attends his appointments and takes his medication(s) as prescribed.
  • Strike a balance between the disorder's effects and patient responsibility. "Family members often think, ‘He's acting this way because he hates me and wants to hurt me,’" Miklowitz says. "You need to help them understand it's the illness that's causing him to act this way. Still, you don't want to give the patient a blank check to do whatever he wants and blame it on the illness. The patient needs to take responsibility for his actions."
  • Make sure the family doesn't feel blamed. Families are sensitive to any suggestion that their interactions might have caused the illness.
  • Be patient and persevere. Miklowitz's research has found that it takes 6-9 months of family-focused therapy to produce clinically measurable benefits. That can seem like a long time, he acknowledges. "You have to be patient, believe in what you're doing and view this as a long-term investment."

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.