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Caregivers for post-9/11 vets need more help, study finds

Apr. 8, 2014 - 02:56PM   |  
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More than 1 million Americans provide care and support for injured or ill Iraq and Afghanistan war-era veterans, and they often do so at great personal sacrifice, facing social isolation, income loss and poor health, according to a new study.

These spouses, parents and friends of post-9/11 veterans save taxpayers more than $3 billion a year by offsetting the cost of home health care and medical aides.

But they often perform their services with no formal support structure and little or no financial aid or relief, the Rand Corp. said in “Hidden Heroes: America’s Military Caregivers,” released March 31.

“Once these families are home, the challenges increase tremendously. They are providing medications, establishing rehab, working with problems of legal and financial issues; they need training and they are having to deal with all this while preventing triggers [in former troops] that might cause some kind of emotional experience,” said former Sen. Elizabeth Dole, whose Caring For Military Families Elizabeth Dole Foundation funded the research.

According to the study, there are 22.6 million caregivers in the U.S. — 5.5 million of whom support veterans. Many are spouses or adult children helping the aging or disabled.

But the one-fifth of military caregivers, who support Iraq and Afghanistan veterans with complex, chronic conditions and/or mental health issues, represent a unique population with needs that may differ from their civilian, or even older military, counterparts.

To conduct the study, Rand surveyed more than 28,000 military caregivers over three months last year.

The data showed that post-9/11 military caregivers often are young — especially in the case of the one-third who are spouses. About 25 percent are parents and, strikingly, 23 percent are friends and neighbors.

More than 60 percent have jobs, 28 percent gave up employment to care for a service member and another 11 percent took early retirement.

But despite Veterans Affairs and Defense Department programs to assist caregivers financially, more than 60 percent say they endure financial strain as a result of their circumstances.

“The toll to providing this care can be high,” the study noted, adding that research showed time spent caregiving “can lead to loss of income, jobs or health care and exact a substantial physical and emotional toll.”

A surprising number of these caregivers, 32 percent, do not have health care, the study found. And nearly 40 percent meet the criteria for symptoms of depression, a figure more than double that of civilian caregivers and four times the national average.

“They are vulnerable to the lack of health support and getting their needs attended to,” Rand researcher Terry Tanielian said.

The Elizabeth Dole Foundation commissioned the research to learn more about this population, which often toils behind closed doors. Dole became familiar with the stresses of military caregivers three years ago when helping her husband, former Sen. Robert Dole, during his 11-month hospitalization at what was then known as the National Naval Medical Center in Bethesda, Md.

Her goal is to bring together government agencies, corporations, religious groups and nonprofits to improve support for these families, especially those who may not have access to programs or information because they are not considered “next of kin.”

“We see this as a holistic approach with a lot of collaborations that can make a difference and solve some of these tremendous challenges the caregivers have,” Dole said.

The report raises concerns over the future of veterans whose caregivers are now middle-aged parents who eventually may need support themselves, or are young spouses who can’t bear the strain and eventually leave.

“We predict in 15 years, this will reach a level where we need to think about continuity and what, as a society, needs to be done to provide alternative care,” Tanielian said.

The report makes several recommendations, from creating caregiver-friendly work environments to improving health care access and increasing training, education and respite programs.

Jennifer Mackinday, 42, cares for her 30-year-old brother, retired Army Spc. James Smith, injured in 2004 in a mess hall bombing in Mosul, Iraq, and again, months later, in an IED attack.

In Washington as a guest of the Elizabeth Dole Foundation, the Bloomington, Ind., resident said she was grateful for the study because it offered “concrete evidence that spoke about my life.”

But she said it saddened her as well, because the “numbers are so large.”

“I wish people could understand that you don’t have to provide a financial fix to help. Just inviting a caregiver and their veteran to dinner is something they can do. It makes a world of difference,” Mackinday said.

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