The first national study to give a voice to family caregivers of veterans reveals that they are twice as likely as family caregivers of adults overall to consider their situation highly stressful, and yet 94 percent of them are proud to serve.
The study, released by the National Alliance for Caregiving (NAC) and funded by United Health Foundation, finds that family caregivers of veterans face a higher burden of care, both in intensity and duration, often supporting a spouse or partner over a longer period of time than typical family caregivers. These caregivers also are predominantly women (96 percent) compared to the national average (65 percent), and many make sacrifices to their own health and jobs to care for their loved ones.
The “Caregivers of Veterans - Serving on the Homefront” study is the first in-depth look at family caregivers of veterans and provides unique insights into the effects of caregiving for a veteran on the caregivers' own health, work and home life. The study also provides a look at caregiving across the age spectrum representing caregivers of veterans from World War II, the Korean War, the Vietnam War, Desert Storm, Operation Enduring Freedom and Operation Iraqi Freedom.
"The family caregivers who serve our country's veterans are making huge sacrifices in terms of their own health, careers and home life," said Reed Tuckson, MD, United Health Foundation board member and executive vice president and chief of medical affairs, UnitedHealth Group. "The data indicate that these 'homefront heroes' are proud to serve in the role of caregiver for their loved ones. Yet it is incumbent upon all of us to help them find support and solutions to preserve their own health and well being, as well as that of the veteran. It is important that relatives, friends and neighbors seek out opportunities to provide respite and other supportive services to these caregivers."
The US Department of Veterans Affairs projects that there are more than 23 million US veterans. A previous NAC study on caregiving nationwide found that more than 10 million people are caring for a veteran, and nearly 7 million of them are veterans themselves.
"The care of a veteran is unique, and in many ways these caregivers are facing even greater challenges than other family caregivers," said Gail Hunt, president and CEO of the National Alliance for Caregiving. "This report serves as a reminder that we need to come together to make sure caregivers have adequate resources and support."
Major findings of the report:
The responsibilities of caring for a loved one have traditionally fallen to women. The “Caregivers of Veterans - Serving on the Homefront” study found that 96 percent of caregivers of veterans are women, and 70 percent provide care for a spouse or a partner. Most of these women are the sole providers of care—only one-third has received help from paid caregivers.
The study also found that 30 percent of these caregivers are part of the classic sandwich generation, balancing caring for their veteran and caring for children under the age of 18. This situation can take a toll on family dynamics. Of the caregivers with children in their home, 69 percent report spending less time with their children than they would like and 57 percent report that their children or grandchildren have experienced emotional or school problems as a result of their caregiving or the veteran's condition.
Compared to caregivers nationally, caregivers of veterans are twice as likely to be in their caregiving role for 10 years or longer (30 percent vs. 15 percent). They also are twice as likely to be in a high-burden caregiving role and to consider their situation highly stressful.
One contributing factor to these caregivers' stress and burden is the veteran's health conditions. These often include:
Study respondents also report feeling stressed say they avoid situations that could be stressful for their veteran and trigger anxiety or antisocial behavior. Eighty-six percent report that they need to remind or give cues to the veteran about what he or she should be doing.
One caregiver in the study said, "We moved the [family reunion] to an outdoor venue so the walls won't be closed in around him...I talk him through scenarios…that kind of prepping does help him reduce his stress overall."
Caregivers of veterans make sacrifices to their own health and work to care for a loved one, but are overwhelmingly proud to serve.
Many caregivers of veterans report that their own health has been impacted due to the intensity of their caregiving responsibilities. A majority of caregivers of veterans report declines in their own healthy behaviors, such as exercising (69 percent), good eating habits (56 percent) and going to one's own doctor and dentist appointments on schedule (58 percent) and previous studies have shown that caregivers tend to neglect their own health and well-being when they become a caregiver. Similar proportions have weight gain/loss (66 percent) or experience depression (63 percent); 88 percent report feeling increased stress or anxiety and 77 percent report sleep deprivation.
Women are half of all US workers, and mothers are the primary breadwinners or co-breadwinners in nearly two-thirds of American families. Yet caregivers of veterans often are forced to make tradeoffs with their careers and financial stability in order to take care of their loved ones. Forty-three percent of caregivers of veterans report that they provide more than 40 hours a week of care, the equivalent of a full-time job.
Of the 68 percent who were employed while caregiving:
One caregiver in the study stated, "It was said that [my caregiving activities] were not my responsibilities and that I should vacate that role or I would lose my job. I took another job that is very accommodating, but I took a severe pay cut of 25 percent to 30 percent, and I lost my health and dental [benefits]."
Despite the sacrifices, caregivers of veterans are overwhelmingly proud of the service they provide to their loved one:
Caregivers turn to professionals, online resources and support groups for help.
When looking for support or advice, caregivers most often depend on word-of-mouth (70 percent), which 63 percent find helpful. In addition, 65 percent of caregivers of veterans who have a care manager say their care managers have been helpful locating, arranging and coordinating care and resources for the veteran; 43 percent feel the care manager has been helpful finding support for the caregiver her/himself.
Online forums, groups or blogs are rated as helpful (74 percent) by the 48 percent of caregivers of veterans who turn to them. Caregivers taking care of younger veterans are more likely to turn to these online resources by a wide margin, followed by the Department of Defense military system and Military OneSource, whereas those caring for an older veteran are more likely to turn to local government or community organizations. Other sources of information rated as particularly helpful include disease-specific organizations and in-person support groups.
This report is based primarily on a quantitative online survey with 462 self-identified family caregivers, age 18 or older, who provide care to a veteran whose injury, illness or condition is related to military service.
In addition, the report includes findings from six focus groups that were held to guide the development of the questionnaire and 45 in-depth telephone interviews conducted with respondents to the online survey.
Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. The Alliance was created to conduct research, do policy analysis, develop national programs, and increase public awareness of family caregiving issues. Recognizing that family caregivers make important societal and financial contributions toward maintaining the well being of those for whom they care, the Alliance's mission is to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients. For more information, visit www.caregiving.org.
Guided by a passion to help people live healthier lives, United Health Foundation provides helpful information to support decisions that lead to better health outcomes and healthier communities. The Foundation also supports activities that expand access to quality health care services for those in challenging circumstances and partners with others to improve the well being of communities. Since established by UnitedHealth Group [NYSE: UNH] in 1999 as a not-for-profit, private foundation, the Foundation has committed more than $176 million to improve health and health care. For more information, visit www.unitedhealthfoundation.org.