Report highlights challenges of caregivers of adults with mental health issues

Recent findings indicated more than half of caregivers of adults with emotional or mental health issues felt left out of care conversations with providers.

“Mental illness is a condition that affects the whole family,” Gail Gibson Hunt, president and CEO of the National Alliance for Caregiving, said in a press release. “These findings illustrate that gaps in the health care 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.”

As part of the study On Pins and Needles: Caregivers of Adults with Mental Illness, researchers evaluated 1,601 caregivers aged 18 years and older who provided care to an adult with serious-to-moderate emotional or mental health issues. Data were collected in September 2015.

According to previous findings, 8.4 million Americans care for an adult with an emotional or mental health issue.

Mental health caregivers provide care for an average of 8.7 years, compared with an average of 4 years among caregivers of an adult with any condition or illness.

The majority of adults receiving care (58%) are aged 18 to 39 years, and often receive care from a parent (45%).

Of adults receiving care, 25% have bipolar disorder, 25% have schizophrenia, 22% have depression and 11% have anxiety.

More than half of caregivers (55%) reported feeling less involved than they should have been in care conversations with providers.

Caregivers reported mental health service coverage parity (31%), care navigator (30%) and caregiver education (15%) would be the most helpful policies or programs.

Approximately half of caregivers reported their relative was sent home “too early or too quickly” from the ED, hospital or other facility after a mental health crisis.

Forty-nine percent of caregivers reported their relative was financially dependent on family and friends, and 48% reported it was difficult to discuss their relative’s mental or emotional health issues with others.

“The study confirms what [the National Alliance on Mental Illness (NAMI)] hears every day on its helpline and in its family classes and support groups,” Mary Giliberti, JD, executive director of NAMI, said in the release. “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.” – by Amanda Oldt

For more information:

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