Nearly 44 million people in the United States, three-quarters of whom are women in their late 40s, spend at least 22 hours a week providing unpaid care to loved ones with a disability, illness, or terminal diagnosis, and one in four spend at least twice that amount. Typically, they assist with the activities of daily living such as bathing, dressing, toileting, and feeding their loved one, as well as taking care of shopping, finances, and transportation to and from medical appointments.
These responsibilities generally last at least three years, with demands increasing as the loved one nears death. Caretaking offers emotional and other personal rewards, but when added to other family and personal responsibilities, it can impact the caregivers’ employment and their own personal well-being. Depression and burnout among caregivers can often lead to poor health choices, including turning to unhealthy use of substances.
How can we support these unpaid millions who are themselves hurting? There are steps that can mitigate, or at least control, some undue stress for the caregiver.
With attention focused on the patient, it is easy to overlook the needs of the caretaker. Because of their outsized responsibilities, caregivers report a reduction in the ability to experience positive activities in their own daily lives by almost a third in comparison to non-caregivers. It is estimated that between 40 percent and 70 percent of caregivers have clinically significant symptoms of depression and up to half meet the diagnostic criteria for major depression. As the loved one’s functional status declines, levels of caregiver depression and perceived burden tend to increase. New stresses arise for those who try to locate appropriate end-of-life care for their loved ones. They may also question whether the services their loved one is receiving are of high quality and properly integrated with other health care and social services.
Sensitizing communities to the mental health risks these caregivers face and increasing understanding of the importance of mental health is a good place to start. A terrific resource to accomplish these goals is Mental Health First Aid, an eight-hour course that gives people skills to help someone who is developing a mental health problem or experiencing a mental health crisis. It was created in Australia by Betty Kitchener and Anthony Jorm, and brought to the United States by the National Council for Behavioral Health. Mental Health First Aid teaches individuals how to identify, understand, and respond to signs of mental illness and substance abuse disorders in their community.
With more than a million people trained in mental health first aid across the country by 11,800 instructors, the impact has been invaluable. Mental health first aiders include teachers, first responders, veterans, parents, friends, students, mayors, and first ladies including former First Lady Michelle Obama. First responders who have completed the training report that it has changed the way they do their jobs. They have learned to approach people differently, responding to calls equipped with the “right tools” or questions to ask and ultimately connecting individuals to the help they need. Students completing the youth mental health first aid training report they have learned to be better friends, feel more comfortable knowing what to do in difficult situations, and can now apply principles learned in their lives. This is making a difference in high schools and college campuses.
This program has improved and saved lives by increasing awareness in communities about behavioral health. Mental health first aid for older adults is a special program that addresses the unique risk factors and warning signs of mental health problems in adults older than age 65 and provides the tools to recognize them and respond.
Taking this course can help caregivers and people who know caregivers develop a better understanding of how to help an older adult who is in crisis or experiencing a mental health challenge. It also empowers the caregiver with knowledge about how to select an intervention and provide initial help. More than one million volunteers in the United States have completed the training and many report that just knowing they have the skills to assist someone experiencing a mental health crisis gives them a feeling of confidence and a heightened sense of responsibility to their community.
An essential element of mental health first aid is self-care. Just as mental health first aiders become more aware of their role in mental health within their families and communities, they are reminded that maintaining their health is key to helping others. This “care for the caregiver” aspect of mental health first aid training is critical for the population of caregivers.
In addition to sensitizing communities to be aware of mental health risks for caregivers, it is important to note that caregivers also have a higher risk of losing employment while caring for loved ones with complex care/end-of-life support needs. Helping caregivers stay employed is an important support strategy in decreasing caregiver burden. However, with limited protection under the Family Medical Leave Act, the caregiver may be forced to work fewer hours or drop out of the workforce altogether. Research illustrates that the economic toll on caregivers can be devastating. A 2013 study shows the overall unpaid value of caregiving contributions is around $470 billion—up $20 billion from 2009 and double the impact of paid caregivers and nursing homes combined. For caregivers who remain employed, lost productivity is estimated to average more than $25 billion annually, on top of a rate of about one week of absenteeism annually per caregiver.
Loss of employment can not only create financial hardship, one study found that employment had a protective effect on women caregivers who reported that work provided a buffer from the stress of caregiving. The additional income also provided them with the financial and social resources to maintain a higher level of self-care and embrace a healthier lifestyle with greater access to more fresh fruits and vegetables, medicines, and health care than their unemployed counterparts. Workplace policies that offer employees flexibility around their caregiving also have been shown to help reduce rates of depression in this group. The National Alliance for Caregiving study of Best Practices in Workplace Eldercare identifies current trends and innovations in workplace policies and practices that support employees with eldercare responsibilities including individuals with complex care needs.
Navigating the complex health system is the last thing overburdened caregivers need to deal with; understanding the protections afforded under the Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008 can help alleviate the burden. The MHPAEA requires group health plans and health insurance issuers to ensure that financial requirements and treatment limitations applicable to mental health or substance use disorder benefits are no more restrictive than the predominant requirements or limitations applied to substantially all medical and surgical benefits.
What this means for the caregiver is that there must be comparable copayments for mental health and substance use disorder care and physical health care. If there are no limits on the number of outpatient visits for physical care, there can be no limits for outpatient mental health or substance use disorder care, and prior authorization requirements for mental health or substance use disorder services must be comparable to those for physical health services.
We can all make a difference by increasing awareness in our own communities and sharing resources with local community organizations, caregivers, and people who may know someone who is struggling. As an example, “Know Your Rights: Parity for Mental Health and Substance Use Disorder Benefits” is a consumer-oriented brochure that provides an overview of the MHPAEA and provides resources for additional information about state and federal parity laws. It discusses which health care benefits should be covered under a patient’s health plan or insurance. These include clinical treatment, health care services, and medications.
While policy-driven programs to support the mental health of caregivers are important and should be pursued, there are interventions we can implement immediately, without waiting for legislators to act. The first step is to adopt a caring attitude for our caregivers and to educate ourselves about the simple but effective ways we, as community members, can help.