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As many as 8.4 million Americans are providing care to an adult with an emotional or mental health issue. As some have said, mental illness is a disease that affects the whole family. Family caregivers feel the impact of the disease as they struggle to care for their loved ones and to bridge health care systems, mental health providers, and community supports.
The National Alliance for Caregiving, in partnership with Mental Health America and the National Alliance on Mental Illness, is honored to release a new study on the obstacles and opportunities facing caregivers of adults with 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.
The study provides new data on 1,601 family caregivers of persons with moderate-to-severe mental illness including people caring for a loved one affected by bipolar disorder, schizophrenia, major depression or another mental illness. Findings include gaps in existing coverage and potential solutions. The report also includes public policy recommendations. The study was made possible through generous sponsorship from Allergan, Eli Lilly, Novartis, and Janssen Scientific Affairs, LLC.
Final Report and Related Materials
- Dear Colleague Letter from Senators Ayotte and Blumenthal (PDF)
- Final Report – On Pins and Needles: Caregivers of Adults with Mental Illness (PDF)
- Final Report Policy Recommendations – On Pins and Needles: Caregivers of Adults with Mental Illness (PDF)
- Final Report Appendix A – Questionnaire (PDF)
- Open Data File – Caregivers of Adults with Mental Illness (SPSS)
- Missed the webinar? Watch the replay here.
Congressional Briefing & Release
The National Alliance for Caregiving was honored to release the On Pins & Needles report in a special briefing on Capitol Hill in February 2016. Speakers and notable attendees include:
- Senator Kelly Ayotte (R-NH)
- Senator Richard Blumenthal (D-CT) (Via Video Remarks)
- Gail Gibson Hunt, President/CEO, National Alliance for Caregiving and Member of the Patient-Centered Outcomes Research Institute Board of Governors
- Debbie Plotnick, Vice President for Mental Health and Systems Advocacy, Mental Health America
- Marilyn Ricci, National Board President and Family Caregiver, National Alliance on Mental Illness
- Dawn Brown, Family Caregiver
Methodology & Advisory Panel
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. Data was collected through an online survey instrument in September 2015.
Our Advisory Panel included:
- Richard C. Baron, MA, Director of Knowledge Translation Activities, Temple University
- Sita Diehl, Director of State Policy and Advocacy, National Alliance on Mental Illness
- Tamar Heller, Ph.D., University of Illinois at Chicago
- Karen Hirschman, Ph.D., University of Pennsylvania
- Carol Levine, Director of Families and Health Care Project, United Hospital Fund
- Victor Molinari, Ph.D., University of South Florida
- Debbie Plotnick, MSS, MLSP, Vice President for Mental Health and Systems Advocacy, Mental Health America
- Rosalyn Roker, MBA, MA, University of South Florida
- Donna Wagner, Ph.D., New Mexico State University
- Kelly Niles-Yokum, MPA, Ph.D., University of La Verne
The National Alliance for Caregiving conducted this study in partnership with Mental Health America and the National Alliance on Mental Illness. Learn more about MHA and NAMI by clicking the logo below.