More than 1.1 million parents, spouses and friends are caring for the disabled who have served in the U.S. military since Sept. 11, 2001, often doing so without a formal support network and putting their own well-being at risk.
This is according to a new RAND Corporation study. The largest-ever study of military caregivers -- commissioned by the Elizabeth Dole Foundation -- finds that Americans who are taking care of veterans who served after 9/11 are younger than other caregivers, are usually employed outside the home and are more likely to care for someone who has a behavioral health problem.
Caregivers who assist post-9/11 veterans provide an estimated $3 billion in care annually and the work of all military caregivers saves the nation substantial sums in avoided long-term care costs. But despite these contributions, researchers found there are few public or private programs that directly support the needs of military caregivers.
"After more than a decade of war, the toll faced by the nation's caregivers who aid veterans and military members is large and can be expected to grow in the decades ahead," said Terri Tanielian, the study's co-leader and a senior social research analyst at RAND, a nonprofit research organization. "Until now, the needs of this group have been poorly understood."
As injured veterans recover and reintegrate into civilian life, many are aided by the supportand assistance of nonprofessional or informal caregivers, individuals who providea broad range of care and assistance with activities of daily living. That care can include activities such as bathing and eating, as well as making medical appointments, managing finances, caring for children and helping manage situations that could exacerbate mental health symptoms.
While caregiving for the elderly and the disabled has been well studied, little has been known about the population of those who care for military personnel and veterans.
"This study provides compelling details behind the incredible stories of selfless duty and sacrifice being demonstrated by millions of military caregivers across America," said U.S. Sen. Elizabeth Dole. "The findings confirm this is an urgent societal crisis and will serve as a call to action in galvanizing communities and inspiring individuals and organizations to raise awareness and increase support for our nation's hidden heroes."
The RAND report is based on the largest and most-comprehensive survey conducted of military caregivers in the United States. Researchers surveyed a representative sample of more than 1,100 military caregivers and compared their experiences to both civilian caregivers and noncaregivers.
In addition, researchers searched for public and private programs that may either directly or indirectly aid military caregivers, such as efforts that provide respite care or caregiving training. This effort included interviews with 82 organizations to understand the history, funding and objectives of such programs.
The RAND study estimates there are 5.5 million military caregivers across the United States, with nearly 20 percent caring for someone who served in the military since the terrorist attacks of Sept. 11, 2001.
Compared to older military caregivers, those who care for post-9/11 veterans tend to be younger, diverse and are more likely to care for someone with a mental health or behavioral health problem, be a veteran themselves, be employed and not be connected to a support network that aids in caregiving.
The caregivers who serve post-9/11 military members typically assist with fewer basic functional tasks than other types of caregivers, but are more likely to help a veteran cope with emotional and behavioral challenges.
Researchers found the time demands on military caregivers are substantial. Twelve percent of post-9/11 caregivers and 10 percent of pre-9/11 military caregivers report spending more than 40 hours per week providing care.
While civilian caregivers reported missing one day of work per month, post-9/11 military caregivers report missing 3.5 days of work per month. The report estimates the value of this lost productivity at $5.9 billion annually. The lost wages add to the financial strain faced by these caregivers.
Researchers found that military caregivers consistently experience more health problems than noncaregivers, face greater strains in family relationships and have more workplace problems than noncaregivers. The issues were most acute among caregivers who assist someone who served in the military after 9/11.
"Caring for a loved one is a demanding and difficult task, often doubly so for caregivers who juggle these activities with caring for a family and the demands of a job," said Rajeev Ramchand, the study's co-leader and a RAND senior behavioral scientist. "These caregivers pay a price for their devotion."
Military caregivers who assist a post-9/11 veteran face elevated risks for depression that is four times that of noncaregivers. RAND researchers found that more than 30 percent of these military caregivers lack health care coverage, suggesting they face added barriers to receiving help for their own health needs.
Researchers identified more than 100 programs that report offering services to military caregivers, but few target their services directly to caregivers. Most of the programs targeted the veteran, with family members who serve as caregivers invited to participate. Programs that do target caregivers typically are focused on older caregivers, not the younger caregivers who aid post-9/11 military members.
"There is an acute shortage of efforts to provide services directly for military caregivers," Ramchand said. "There is a particular need for programs that focus on the younger caregivers who aid the newest veterans."
Researchers say changes are needed to both provide assistance to military caregivers and to help them make plans for the future.
Priority should be given to strategies that strengthen and empower caregivers, such as training to help caregivers better understand their roles and develop the skills necessary to provide care and navigate social support networks. Efforts are needed to create caregiver-friendly environments, such as workplaces that can adapt to the flexible time needs of military caregivers.
In addition, more programs should focus specifically on the needs of military caregivers, providing support based on the duties they perform rather than their relationship to the care recipient. Those services include respite care that provides caregivers a short-term break and better access to health services.
Future planning efforts should help caregivers create financial and legal plans to ensure caregiving continuity for care recipients. Such services should be integrated into existing services and organizations through formal partnerships.