Family caregivers fill a critical need in our nation’s health care system by providing essential services and support for chronically ill and disabled persons. Yet their physical, mental, and emotional well-being are often compromised due to their caregiving roles and responsibilities. Several nationally representative surveys of military caregivers have highlighted differences that are unique to caregivers of veterans.1,2 According to a RAND Corporation report, caregivers of veterans differ from other family caregivers in that they are younger with dependent children, often live with the person they are caring for, and provide care for up to a decade longer than do other caregivers.3 While most caregivers experience similar stressors, caregivers of veterans face distinct challenges, partly because veterans’ illnesses can be markedly different from the general population of disabled and/or chronically ill individuals.
Veterans and their caregivers also must navigate within large and complex health care, legal, and financial systems.3 Recently, the VA has begun to institute a number of programs and services to support veterans. One of these is the Building Better Caregivers (BBC) program. Building Better Caregivers is an online 6-week workshop aimed to equip caregivers of persons with physical and cognitive impairment with the knowledge, skills, and support to boost self-confidence in their ability to maintain and lead active and fulfilling lives. Developed at Stanford University and tested in partnership with the VA, BBC has shown significant improvements in caregivers’ health and health-related behaviors. Moreover, its online format allows for caregivers to access support and information when it is most convenient to them.4
The National Council on Aging (NCOA) has more than a decade of experience disseminating evidence-based solutions in partnership with a variety of organizations. Previously NCOA held an exclusive license to disseminate the BBC program (Canary Health now holds the license). Following a pilot study of the program, the VA partnered with NCOA to implement and sustain BBC. By integrating the program into clinical practice, NCOA and VA have positioned this program under the VA’s Caregiver Support Program (CSP). Caregiver support coordinators have referred > 5,000 caregivers to date, and > 2,654 of those caregivers expressed interest and were assigned to a workshop. Seventy percent of participants attended 4 out of 6 sessions, which is considered completing the workshop.
In the original pilot study with Stanford University, caregivers taking BBC showed significant improvements in depression, pain, stress, caregiver burden, and 63% completed at least 4 of the 6 sessions.4 Current BBC outcomes continue to show reductions in stress. In addition, participant completer rates are even greater than the original study outcomes with 75% of caregivers completing 4 out of 6 sessions. Additionally, > 50% of workshop graduates elect to participate in a BBC online community that continues to support them in their role as caregiver. Nearly half of all U.S. adults and 80% of adults aged > 55 years have more than 1 chronic condition and/or disability.3 Unlike acute care, the majority of care for chronically ill individuals is provided outside of the medical system and in homes by family caregivers. Family caregivers provide assistance with routine, daily activities, such as bathing and meal preparation, as well as more specialized tasks, such as meeting with health care providers and administering medications.
The amount of weekly care provided averages 21 hours per week for persons with physical impairment, and 22 to 47 hours per week for persons with cognitive impairment.5,6 According to the National Alliance of Caregivers, there are > 65 million individuals in the U.S. who provide care to a family member or friend who is chronically ill and/or disabled.1 As the U.S. population continues to age, so will the proportion of individuals with chronic conditions. That means a growing need for caregivers. And due to advancements in health care, more individuals are aging with disabilities, resulting in a prolonged need for caregivers.
Caregiver Challenges
Family caregivers represent a very diverse segment of the U.S. population, cutting across most demographic groups. While research indicates that living arrangements, hours of care provided, and money spent may vary by race/ethnicity, socioeconomic status, and gender, most caregivers provide similar types of care and experience similar stresses.7 However, many caregivers of veterans face a unique set of challenges and subsequently experience disproportionately poor mental and emotional health than do caregivers in the general population.3 These findings are also supported by nationally representative surveys of caregivers, one of family caregivers in general and other of caregivers of veterans.
In addition to providing assistance with daily activities and specialized tasks, caregivers of veterans usually have added roles and responsibilities that are markedly different from the general caregiver population due to the severity of veterans’ illnesses and disabilities. Many veterans experience mental illness, with > 70% of those who require caregivers having reported anxiety and/or depression, and 60% having been diagnosed with posttraumatic stress disorder (PTSD). In addition, almost half of all veterans have cognitive impairment, and nearly one-third experiencing traumatic brain injuries (TBI).8 These “invisible wounds” often require caregivers to spend a significant amount of time providing behavioral care (ie, avoiding certain triggers and providing cues), as well as emotional support, along with standard physical care.1 Behavioral care and emotional support are ongoing and more challenging than physical care, and thus more taxing on the caregiver.
Profile of Caregivers of Veterans
Caregivers of veterans also face the additional challenge of navigating large and complex systems across multiple government organizations. There are a myriad of services and benefits available to veterans, and their caregivers typically serve as care coordinators—facilitating care, services, and benefits for their loved ones. Caregivers of veterans may also handle all financial and legal matters, such as drafting wills and advance directives.3 Coordinating care and handling financial and legal matters can prove to be extremely difficult and time consuming.
It is, therefore, not surprising that caregivers of veterans experience higher levels of physical strain as well as poorer mental and emotional health. Six out of 10 caregivers of veterans report their health has declined due to their caregiving role, and the majority find themselves socially isolated and depressed (Figure 1).1,2,8
VA Support for Caregivers
The VA has long supported family caregivers of veterans through services such as home health care and programming, such as home-based primary care, teaching, and support. Following the passage of Public Law 111-163, the Caregivers and Veterans Omnibus Health Act of 2010, the VA has been able to increase its support to family caregivers to an unprecedented level. The programs and services established under this act include a national CSP and caregiver support line, as well as placement of caregiver support coordinators at each VA medical center. The VA has also developed a VA caregiver website (http://www.caregiver.va.gov), rolled out a national Peer Support Mentoring program and a number of self-care courses. Other additional supports for caregivers of veterans injured in the line of duty on or after September 11, 2001, include monthly stipends, mental health services, insurance coverage, and enhanced respite care. These caregiver programs and services utilize a variety of models to assist in the engagement of the diverse caregiver population across the military service eras.
Why Building Better Caregivers?
The VHA piloted a number of programs for caregivers prior to the implementation of the CSP. In 2009, VHA partnered with Stanford University to pilot the BBC self-management workshop for caregivers of veterans. The online pilot addressed the needs of those looking after their family members or friends with cognitive difficulties, such as dementia, TBI, PTSD, memory problems, and other care needs. The online format provided an additional option for caregivers to access support in a nontraditional format outside of their local VAMC. This format also allowed caregivers the flexibility to access support and information in the convenience of their home, based on their availability and schedule. This feature was especially important due to the challenges some caregivers experience, whether it is their rural residence, limited ability to travel to a medical center, or lack of support to leave their loved one to attend a support group.