New Report Finds Families Struggle Over a Decade to Get Help for Mental Illness

Posted on February 23, 2016

WASHINGTON, DC—Feb. 23, 2016—At least 8.4 million Americans are providing care to an adult with an emotional or mental health issue, and nearly three quarters report that caregiving causes high emotional stress, finds a new study from the National Alliance for Caregiving in collaboration with Mental Health America and the National Alliance on Mental Illness.

The study, On Pins & Needles: Caregivers of Adults with Mental Illness, identifies startling inadequacies in the U.S. health care system in meeting the needs of families who manage moderate-to-serious mental illness.  Four in 10 caregivers struggled to find an accurate diagnosis for their loved one. Families whose loved one had found an accurate diagnosis reported that it took 11.8 years, on average, to get there.

Treatment is also an issue. A majority of caregivers found that it was difficult to find the right drug and dose, and fewer than four in ten caregivers (37%) reported that their loved one’s medication was effective in providing the help they need. Caregivers noted several barriers to accessing health care services and long-term services and supports, including day programs, peer support, case managers, in-patient treatment centers, and low availability of services in rural areas.

“Mental illness is a condition that affects the whole family,” explained Gail Gibson Hunt, President and CEO of the National Alliance for Caregiving. “These findings illustrate that gaps in the healthcare system can impact a family caregiver as well. Caregivers noted that they felt isolated by the stigma of mental illness. They reported high levels of emotional stress and worried that their loved one would self-harm. It’s time to bring these families out of the darkness and get them help.”

In addition to identifying common challenges facing caregivers of people with mental illness, the study offers a number of solutions to help families struggling with mental illness. Providing greater access to high-quality healthcare services and assistance with care coordination are two of the suggestions offered. Healthcare providers should examine ways to include caregivers as part of the care team, improve access and reimbursement for medications, and provide education, the authors suggest.

“We often forget that caregivers themselves are enduring trauma, anxiety, and depression as they work on behalf of a loved one,” explains Paul Gionfriddo, President and Chief Executive Officer of Mental Health America, a partner on the study. “Surveys like this help us to focus not only on the inadequacies in our system of services and supports for people with mental health conditions, but also on the inadequacies of the support we give to those who care for them.”

“The study confirms what NAMI hears every day on its Helpline and in its family classes and support groups,” said NAMI Executive Director Mary Giliberti. “It reveals a glaring gap in support for caregivers that is one more example of the inequality between mental illness and other health conditions. The report provides an agenda for action by policymakers and they should act quickly to provide caregivers with needed parity in access to mental health care and to provide for their overall needs.”

The report and related materials can be found at www.caregiving.org/mentalhealth.

Highlights – On Pins & Needles: Caregivers of Adults with Mental Illness:

• 8.4 million Americans care for an adult with an emotional or mental health issue (from Caregiving in the U.S. 2015, National Alliance for Caregiving and AARP Public Policy Institute).
• Caregivers have typically provided care for an average of 8.7 years, in contrast to caregivers of an adult for any condition or illness who typically provide care for 4 years on average.
• The majority of people receiving care (58%) are between the ages of 18-39 and it is often a parent taking on care of the adult child (45%).
• The main conditions requiring care are bipolar disorder (25%), schizophrenia (25%), depression (22%), and anxiety (11%).
• A majority of caregivers (55%) reported that they were included less than they felt they should have been in care conversations with their loved one’s providers.
• Caregivers indicated that the most helpful policies or programs would be mental health service coverage parity (31%), care navigator (30%), and caregiver education (15%).
• About half of mental health caregivers reported that their loved one was sent home “too early or too quickly” from the emergency room, hospital, or other facility after a mental health crisis situation (49%).
• Nearly half (49%) of caregivers said that their loved one is financially dependent on family and friends.
• Nearly half (48%) of caregivers said it was difficult to talk with others about their loved one’s mental or emotional health issues.

The research study was conducted by Greenwald & Associates, with guidance from the National Alliance for Caregiving, Mental Health America, the National Alliance on Mental Illness, and oversight from an independent advisory committee.

The study was made possible through generous sponsorship from Allergan, Eli Lilly, Novartis, and Janssen Scientific Affairs, LLC.

Methodology

The On Pins & Needles: Caregivers of Adults with Mental Illness study gathers data from 1,601 family caregivers age 18 or older who provide care to an adult with serious-to-moderate emotional or mental health issues. Data was collected through an online survey instrument in September 2015. The full study and questionnaire can be found at www.caregiving.org/mentalhealth.

About the National Alliance for Caregiving

Established in 1996, the National Alliance for Caregiving is a nonprofit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance supports a network of 80-plus state and local caregiving coalitions and serves as Secretariat for the International Alliance of Carer Organizations. Learn more at www.caregiving.org.

About Mental Health America

Mental Health America is the nation’s leading community-based nonprofit dedicated to helping all Americans achieve wellness by living mentally healthier lives. Our work is driven by our commitment to promote mental health as a critical part of overall wellness, including prevention for all, early identification and intervention for those at risk, integrated health, behavioral health and other services for those who need them, and recovery as a goal. Learn more at www.mentalhealthamerica.net.

About the National Alliance on Mental Illness

NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.

About Greenwald & Associates

Greenwald & Associates is a leading full-service research firm with industry expertise in healthcare, financial services, & employee benefits. Conducting customized research for over 30 years, Greenwald & Associates has earned a reputation for extensive research knowledge, industry expertise, and commitment to serving the needs of our clients. For more information, please visit www.greenwaldresearch.com.