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Connecting Caregivers to Support

Informal caregivers—including family members, partners, and friends—provide regular care or assistance to individuals with illness or disability. These caregivers play an important role in the U.S. healthcare system by reducing care recipients’ use of long-term services and other healthcare expenditures, yet caregiving can take a toll on caregivers’ psychological and physical health, and financial status. Thus, the development and evaluation of  interventions to support caregivers, as well as strategies to incorporate caregivers as part of their care recipient’s healthcare team have become a national priority. This is evidenced by the bipartisan Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act. Signed into law by President Trump in January 2018, the RAISE Act mandates a national caregiver strategy.

Conducted by Caregiver Support (VA-CARES) QUERI investigators, this study evaluated a national VA Caregiver Support Program (CSP) established in 2010 under the Caregivers and Veterans Omnibus Health Services Act (Public Law 111-163) to meet the needs of informal caregivers of Veterans receiving VA care. Under the law, two programs were established:

• The Program of General Caregiver Support Services (PGCSS), which provides training and other supports available to caregivers of Veterans of all service eras; and
• The Program of Comprehensive Assistance for Family Caregivers (PCAFC), which provides expanded services (i.e., education and training, stipend, healthcare, travel, respite, and mental health services) to eligible post-9/11 Veterans.

The MISSION Act of 2018, signed into law by President Trump in June 2018, ends the disparity of limiting PCAFC to post 9/11 Veterans and enables these services to all era qualifying Veterans. This law also adds financial and legal services to the menu of supports available to approved family caregivers. Focusing on how PGCSS caregivers value and use its services, investigators examined data for 50 caregivers who completed interviews and 160 survey respondents. Findings showed that caregivers who had used PGCSS services valued the emotional, functional, and healthcare navigational support that the program offers. For example, one caregiver said that her support group served as a “lifeline” because she had no other source of support; she reported that family members did not understand her situation and that mental health services were too expensive. Another caregiver described how she valued having her Caregiver Support Coordinator to talk to in times of distress or uncertainty: “I’d go into the garage and I would cry it out, she would just listen to me crying it out, and it was like okay. I’m okay now. I can go back into the house. It’s just a phone call that people need in a rural area…” However, many caregivers also described a lack of connection with the program—not knowing about or successfully engaging in program services—and needed more information about available resources. In addition, caregivers in rural areas or those caring for Veterans with specific diseases reported needing tailored services to meet their unique needs.

Results of this study have implications for both VA mental healthcare and the Mission Act. Caregiver support was particularly valued by caregivers in regard to their mental health, feeling less alone, and understanding how to better navigate the VA healthcare system. Interactions with Caregiver Support Coordinators were particularly valued. However, one size does not fit all for some caregivers who help Veterans with conditions such as ALS (Amyotrophic Lateral Sclerosis) or Parkinson’s Disease – or for Veterans residing in rural settings. Working on better matching the needs and preferences of caregivers (i.e., group versus one-on-one training/supports) will be very useful as VA moves forward with the Mission Act requirements. Under this new law, VA is required to provide, “access to community care if VA does not offer the care or services the Veteran requires, VA does not operate a full-service medical facility in the state a Veteran resides, the Veteran was eligible for care in the community under the 40-mile rule in the Veterans Choice Program” and when the Veteran meets certain requirements. Thus, VA will likely need to provide support for many more caregivers in the future, and healthy caregivers will be best able to provide optimal care for our Veterans.

For more information about VA-CARES QUERI and/or this study, please contact Courtney Van Houtven, PhD, at CourtneyVanHoutven@va.gov .