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In late June of this year, Families for Depression Awareness (FFDA) launched an online tool to help patients and their relatives trace their mental health family tree. Certain illnesses, such as bipolar disorder, have strong familial connections.

"Bipolar disorder often runs in families like cancer or heart disease," says Julie Totten, president of FFDA, who founded the nonprofit organization in 2001 in the wake of her own family's mental health struggles. "I started it because I lost my brother to suicide about 15 years ago, and I didn't realize he had a depressive disorder."

Totten went on to help her father get a diagnosis of depression about a year later, adding that like many caregivers she felt ill equipped to recognize or handle her family's mental health needs. Totten quickly realized she wasn't alone in her confusion. "Most families don't have the guidance or knowledge to recognize depressive disorders or to cope with them … that's why I founded Families for Depression Awareness."

One way the organization hopes to enlighten families is through its new Web-based tool that helps identify certain behaviors that are often associated with bipolar disorder. Because patients tend to seek treatment for the depressive episodes while often ignoring the manic periods, the disorder can easily be misdiagnosed.

"People with bipolar disorder often can't recognize the symptoms of mania themselves," says Totten. "When the patient goes to the doctor by themselves, they may not report their manic symptoms even if asked, because they don't realize anything is unusual. They don't know their behaviors are extreme, but the family members see this."

Eric A. Youngstrom, PhD, who has authored several papers on evidence-based assessment of bipolar disorder and links to family history, is an associate professor of psychology at the University of North Carolina at Chapel Hill and was one of the professionals the FFDA consulted to create the family tree builder tool.

Referencing the Lish survey from 1994 (commissioned by the National Depressive and Manic-Depressive Association, which has recently been rechristened the Depression and Bipolar Support Alliance) and a Case Western Reserve University study by Joseph Calabrese, Youngstrom notes the lag time between when symptoms start causing problems and when a patient gets an accurate diagnosis of bipolar disorder can be anywhere from 11-19 years. A follow-up to the Lish study in 2003 by R.M. Hirschfeld showed little improvement, with more than one-third of patients waiting a decade or more before receiving an appropriate diagnosis.‡

"When we're talking about bipolar disorder, we have a whole lot to be humble about. It appears it's more common than we realized," he says, adding that textbooks typically cite 1-in-100 suffer from the disorder but that research suggests it's probably more like 4-in-100.

Further complicating the problem of under-diagnosis … and adding to the confusion of the general public … is the name change from manic-depression to bipolar disorder. Youngstrom notes that a patient may know that his or her grandmother was manic-depressive but not realize that's the same thing as a diagnosis of bipolar disorder and therefore inadvertently answer incorrectly when asked about family ties to the disorder.

Additionally, adds the licensed clinical psychologist, families may have just said that "Grandma was having a spell" or that "Auntie was in one of her moods."

Totten adds the National Institute of Mental Health estimates that two-thirds of people with bipolar disorder also have a family member with either bipolar disorder or depression.

"Bipolar disorder is one of the most heritable mental illnesses," says Youngstrom. "If Mom, Dad, a full brother or sister have bipolar disorder, it increases the risk by a factor of five … that's more than the link between smoking and heart disease or smoking and lung cancer."

To uncover the "invisible symptoms," Youngstrom says the family tree focuses on specific behaviors that can clue doctors into the fact that they are seeing a patient in the depressed cycle of manic-depression. On the flip side of depression, the manic symptoms may include increased energy, mood swings, extreme irritability, working or cleaning excessively, staying up late without needing to eat or out-of-control spending.

By focusing on specific behaviors, the Web site builds a personalized family tree that can be shared with a healthcare provider and provide additional insight.

"The reality in primary care is that you have so little time to talk with patients that you're trying to find the smoking gun … to seek out the two or three key issues to address … so this (bipolar disorder) doesn't even make it onto the radar screen," says Youngstrom.

While Totten says the mental health family tree is an outstanding tool to uncover a family's history, she stresses that this is a not a diagnostic tool, but rather it is an educational tool.

Without all the information in hand, a misdiagnosis of depression is more likely. Youngstrom says that when that happens, on the best end, providers are not as helpful to their patients as they might have been. In the worst scenario, the medications used for depression could make a person's moods more unstable.

Having a family history in hand, however, gives patients a leg up when it comes to trying to get the right diagnosis.

"If it works the way it is intended, then it's very empowering for both parties," says Youngstrom. "To me, it seems like a win/win situation."



‡ Lish, J. D., Dime-Meenan, S., Whybrow, P. C., Price, R. A., & Hirschfeld, R. M. (1994). The National Depressive and Manic-Depressive Association (DMDA) survey of bipolar members. Journal of Affective Disorders, 31, 281-294.

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