On Pins and Needles: Caring for Those with Mental Illness

As many as 8.4 million Americans are providing care to an adult with an emotional or mental health issue. Often, these 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 (NAC), in partnership with Mental Health America (MHA) and the National Alliance on Mental Illness (NAMI), recently released 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, provides new data based on a study of 1,601 family caregivers of persons with moderate-to-severe mental illness, including those caring for a loved one affected by bipolar disorder, schizophrenia, major depression or another mental illness. Data was collected through an online survey instrument in September 2015.

Last week, NAC, MHA, and NAMI convened members of Congress, policy makers, family caregiving advocates, mental health professionals, and others for the release of the research study. The following were some of the findings from the report that were presented at the meeting:

  • Caregivers of those with mental illness 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.
  • 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.

In addition to identifying common challenges facing caregivers of people with mental illness, the study offered 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. In addition, the report suggested that healthcare providers 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.”

Resources for Caregivers of Loved Ones with Mental Illnesses

Family caregivers for adults with mental illness face remarkable challenges providing appropriate support for their loved ones. Family members often feel responsible, or may be held responsible by legal and social service systems. The burden of care can be substantial, and often lasts a lifetime for committed family members, including parents of adults with mental illness, spouses, partners, siblings and, with later onset disorders, children. Here are some resources:

  • A summary of interventions available to assist caregivers for adults with mental illness and other family members has been developed by the Family Institute for Education, Practice and Research
  • Education, training, and support services are available through the National Alliance on Mental Illness (NAMI).
  • A website for children in a household with a mentally ill member from the Mental Health Association of Southeastern Pennsylvania.
  • The University of Illinois at Chicago offers the Journey of (JOH) Family Education Course.
  • Caregivers and Mental Illness: Living with Schizophrenia (World Federation for Mental Health, 2014) considers caring for those with severe mental illness across the lifespan, including a section on caregivers of older adults.

Special Needs Planning

A special needs trust is often an essential tool to protect a disabled individual’s financial future. Also known as Supplemental Needs Trusts, this type of trust preserves legal eligibility for federal and state benefits by keeping assets out of the disabled person’s name while still allowing those assets to be used to benefit the person with special needs. Read more here.

When it comes to special needs planning and guardianship, we can guide families through this process and discuss the best strategies/alternatives. Please call us to make an appointment for a consultation:

Fairfax Special Needs Planning: 703-691-1888
Fredericksburg Special Needs Planning: 540-479-1435
Rockville Special Needs Planning: 301-519-8041
DC Special Needs Planning: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

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