Report of Study Findings
November, 2010
They count on you 24 hours a day, so you are never able to relax because you are always worried about them.—Focus Group 6
It’s really affected our son tremendously...he’s been depressed and had severe anxiety...there needs to be a resource that we can be able to reach out to other people, especially for the kids so that they understand that they’re not alone...I’ve heard my kids say several times, “Nobody else gets it. Nobody else understands what I’m going through, especially at school.”—Interviewee #26
Impact of Caregiving
Perhaps because of their increased burden of care, caregivers of veterans report a greater impact of caregiving on their lives than caregivers in general do. Moreover, the caregivers of veterans who have PTSD, TBI, or mental illness such as depression or anxiety are even more likely to suffer many impacts of caregiving—on health, emotional stress, feelings of isolation, the caregiver’s marriage and children, and finances. The heightened impact of providing care to a veteran is manifest in a number of ways. Overall, twice as many caregivers of veterans consider their caregiving situation to be highly stressful than do caregivers of adults nationwide (68% vs. 31%) and three times as many say there is a high degree of physical strain (40% vs. 14%). Of those who are currently married, separated, or divorced, three‑quarters say caregiving or the veteran’s condition placed a strain on their marriage (74%). Among the 30% who have children under the age of 18 in the household, two‑thirds report having spent less time with their children than they would like (69%) and 57% report that their children or grandchildren had emotional or school problems as a result of their caregiving or the veteran’s condition.
Providing care to a veteran with a service‑related condition has widespread impacts on the caregiver’s health. Large proportions report increased stress or anxiety (88%) or sleep deprivation (77%). Healthy behaviors—such as exercising, eating habits, and going to one’s own doctor and dentist appointments on
schedule—decline for roughly six in ten, and similar proportions have weight gain/loss or experience depression.
Of the caregivers of veterans who were employed at some point while serving as a caregiver, a large share experience employment changes that result in a loss of income or benefits. Six in ten (62%) cut back the number of hours in their regular schedule. Half (47%) stopped work entirely or took early retirement, while fewer than one in ten nationally reported either of these impacts. Half of caregivers of veterans feel a high
degree of financial hardship (50%), compared to 13% nationally.
The conditions for which veterans need care differ greatly from the typical care recipient population. Large proportions of caregivers of veterans say the veteran has mental illness such as depression or anxiety (70%) or post traumatic stress disorder (PTSD) (60%), whereas nationally, mental or emotional health problems are reported by only 28%. Other top conditions reported by caregivers of veterans include traumatic brain injury (TBI) (29%), diabetes (28%), and paralysis or spinal cord injury (20%).
Of note, eight in ten caregivers (80%) report their veteran has two or more of the ten specific conditions asked about, and two‑thirds (67%) name additional conditions such as bone, joint, or limb problems (24%), hearing or ear problems (12%), heart conditions (9%), neuropathy/nerve issues (9%), etc. Thus, strategies to inform, educate, and support caregivers must address multiple needs.
Caregiving Challenges
The top challenges faced by caregivers of veterans—each experienced by at least two‑thirds of caregivers—are:
- Not knowing what to expect medically with the veteran’s condition
- Not being aware of Department of Veterans Affairs (VA) services that could help
- Not knowing how to address PTSD or mental illness
- Difficulty getting through bureaucracies in order to obtain services
- Not knowing where to obtain financial assistance
- Not knowing where to turn to arrange a break from caregiving
- Not knowing where to obtain specialized care
Recommendations
1. Provide Training and Information for Common Veteran Conditions
- Create condition‑specific caregiver information packets and training, and provide them to caregivers when they first take on their caregiving role.
- Offer a toll‑free 24‑hour phone line with support, information, and referrals.
- Develop a central website for caregiver support groups, forums, and blogs.
- Establish a caregiver peer mentoring program.
- Ensure that all caregivers receive a directory of VA programs and services as well as other governmental and community caregiver resources.
- Teach caregivers about advocacy resources and methods.
- Create a list of financial assistance resources available to veterans and their caregivers.
- Direct caregivers to legal assistance.
- Facilitate caregiver searches for specialized care facilities.
- Develop programs that connect caregivers of veterans with volunteers.
- Help caregivers find respite care.
- Improve veteran transportation services.
- Package existing information in a way clearly meant for family caregivers, with “family” defined broadly to include those who are neither spouses nor parents of the veteran.
- Review existing materials to ensure that they meet caregivers’ needs, involving caregivers in the review process.
- Improve methods for connecting caregivers to existing information.
- Periodically sensitize health providers about the important role that caregivers play in providing care to veterans.
- Ensure that caregivers are shown how to properly administer medical treatments, care, or medications.
- Empower care managers to provide services for the caregivers themselves.
- Help caregivers plan for veterans’ transitions.
- Explain veterans’ condition to other family members.
The friends and family that I had before the incident don’t understand…his mom said to me recently, “He’s not in the hospital anymore. I don’t understand what’s so difficult for you guys. He’s all better, right? If he was sick, they would have kept him in the hospital.” Uh‑huh, yeah...I barely have the energy to keep my family afloat as it is. I do not have the energy to have to convince you that your son is damaged beyond repair.—Interviewee #14
The best way to describe it would be that you know something is attainable. You know that a program is out there, but you’re in a maze. You just can’t figure out how to get there and at every turn somebody says no...I would call the VA locally, and they wouldn’t know anything about it. They would tell me that I must be wrong because that doesn’t exist. I would quote the regulation that it exists under, and they would say, “I have to look into it,” and then you wouldn’t hear from them for six months.—Caregiver #29
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