WASHINGTON, September 10, 2018 – Twenty-seven percent of people living with depression or bipolar report that their symptoms began before age 12 and two-thirds reported that symptoms began prior to age 18. These preliminary findings are the result of a survey fielded by the Milken Institute Center for Strategic Philanthropy and the Depression and Bipolar Support Alliance (DBSA). 

Milken Institute and DBSA teamed up to elevate the voices of people living with depression and bipolar in research and therapy development. As part of these efforts, they fielded a first-of-its-kind survey in August 2018. By September 7, the survey garnered more than 3,000 responses from across the country, including family members or caregivers of those with a diagnosis of depression or bipolar. 

“As the country and the world grapple with the effects of a worsening mental health crisis, it is imperative that care and treatment be informed by those who are actually living with these conditions every day,” Melissa Stevens, executive director of the Milken Institute Center for Strategic Philanthropy observed. “Given that mental illness is the third most common cause of hospitalization in the U.S. for those aged 18-44 years old, and adults living with serious mental illness die on average 25 years earlier than others, it is critical that care and treatment be calibrated with their input.”

The survey asks participants about their diagnosis, goals for wellness, and what research priorities they would recommend based on their personal experiences. The survey was crafted with assistance from volunteers with “lived experiences.” To date, the responses suggest that treatment should begin at a younger age than is currently the norm.

“By sharing the treatment outcomes they seek, people living with mood disorders have the opportunity to effect real change in the way mental health care is delivered,” explained Michael Pollock, chief executive officer of DBSA. “The entire healthcare ecosystem can use this data to develop more person-centric care from the development of new therapies, through clinical practice to appropriate third-party reimbursement.”

In addition to the preliminary results cited above, responses have shown that depression or bipolar has had a significant impact on the lives of more than 80% of respondents with 42% reporting that the conditions have had a persistent and constant impact in their lives.

Responses challenge the traditional understanding of how people experience depression and bipolar. Depression and bipolar are typically characterized as cyclic, where over time the affected individual switches between different moods and the ability to concentrate or sleep varies. Early findings suggest this may not capture the actual lived experience of mood disorders.

Based on these results, researchers suggest that delaying treatment for depression and bipolar disorder can lead to significant difficulty managing the condition later in life. Although current understanding maintains that as few as 1% of pre-pubescent children and 5% of mid-adolescent individuals experience depression, early results showing the high prevalence of childhood depression and bipolar in adults with the conditions highlight the importance of recognizing mood disorders in children and adolescents.

The survey’s comprehensive findings, expected in December 2018, will drive change in research about understanding and developing therapeutics for mental health.

Learning from a community with lived experience, the Milken Institute Center for Strategic Philanthropy is working toward formulating research agendas that can be supported by philanthropy and align to the priority areas of those living with depression and bipolar.

The Depression and Bipolar Support Alliance will use the data from this survey to inform a November 16, 2018 meeting in Silver Spring, Maryland to share what it’s like to live with depression. This public meeting, which will include FDA regulators, drug and medical device developers, and researchers, is open to all people living with depression.

The survey will remain open to adults over the age of 18 through November 2018. Those diagnosed with depression and bipolar or their caregivers are encouraged to take the anonymous survey, which can be found through the following link: SUPPORTING WELLNESS.

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About the Milken Institute Center for Strategic Philanthropy

The Milken Institute Center for Strategic Philanthropy believes philanthropy has the opportunity and obligation to take on big risks to test bold ideas. We conduct deep due diligence across a range of issue areas, promote creative and well-informed giving strategies, and advise families and foundations on where and how to channel their philanthropy to maximize a return on their investment. For more information, visit philanthropy.milkeninstitute.org 

About the Depression and Bipolar Support Alliance (DBSA)

The Depression and Bipolar Support Alliance (DBSA) strives to improve the lives of people living with mood disorders. The organization fosters an environment of understanding the impact and management of these life-threatening conditions by providing up-to-date, scientifically based tools and information; supports research; and works to ensure that people living with mood disorders are treated equitably. Assisted by a scientific advisory board comprising leading researchers and clinicians in the field of mood disorders, DBSA has more than 600 peer-run support groups across the country. Hundreds of thousands of people are assisted each year with in-person and online peer support; readily understandable and current information about depression and bipolar disorder; and empowering tools focused on an integrated approach to wellness. For more information, please visit www.DBSAlliance.org or call (800) 826-3632.