Study Spotlights Challenges Faced By Caregivers Of Veterans

The National Alliance for Caregiving's study "Caregivers of Veterans — Serving on the Homefront" offers an 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. 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. Host Michel Martin speaks with Reed Tuckson, executive vice president and chief of medical affairs for UnitedHealth Group.

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MICHEL MARTIN, host:

I'm Michel Martin, and this is TELL ME MORE, from NPR News.

Coming up, making peace with the past. We speak with descendants of founding father Thomas Jefferson about efforts to bridge divides in that family.

But first, we stay with matters military on this Veteran's Day. We're going to take a look at the toll of war on families. A study released yesterday by the National Alliance for Caregiving has found that caregivers of veterans face some unique challenges. For example, they are twice as likely as others to be in their caregiving role for 10 years or longer, and they're far more likely to be women.

Joining us now to talk more about this is Reed Tuckson. He is a board member of the United Health Foundation. It's the nonprofit arm of the United Health Group, which is a health insurance and health services company. He's executive vice president and chief of medical affairs for United Health Group. And he's with us now in our Washington, D.C. studio.

Welcome. I should say Dr. Reed Tuckson. Thank you for joining us.

Dr. REED TUCKSON (Board Member, United Health Foundation): Well, thank you. It's a pleasure. And we at United Health Foundation, we're really pleased to fund this first-of-a-kind study that was done by the National Alliance of Caregiver. And we also thank you for shining a light on a problem that really is - deserves much more attention and much more notice.

MARTIN: Before we actually started this part of our conversation, you were actually very surprised by some of the findings. What were the things that surprised you?

Dr. TUCKSON: Amazingly, I think that the fact that these warriors who are coming home - and we know that they are suffering from some extraordinary issues such as post-traumatic stress disorder, anxiety, depression, but also traumatic brain injury, spinal cord injuries, really horrific problems. But what I don't think I really appreciated was the relatively small number of people who are shouldering the burden of caring for those people. These are -96 percent of them are women.

MARTIN: And that's compared to - caregivers nationally are 65 percent women.

Dr. TUCKSON: Exactly. So, these are spouses. These are partners and sometimes members of families.

MARTIN: But why is it disproportionately women? They're almost exclusively women. Why is that?

Dr. TUCKSON: I think it's the nature of the age population and the fact that these are, in fact, veterans who have families, who have wives, who have partners who have dedicated their lives to them and who remain loyal to them. So they come back to an environment that is, in fact, a family. And so I think that's sort of the reason.

But these women are taking on a burden that is so extraordinary, and I think we take for granted what it means day in and day out, year after year, to devote your life - quite frankly, without enough resources or support - to trying to manage the full spectrum of issues, whether it's bathing, dressing, transportation, feeding. I mean, there are so many issues that they have to negotiate on a day-to-day basis.

MARTIN: The study also notes that people who are giving care to veterans are likely to be giving care for much longer than people who are giving care to other people for 10 years or more.

Dr. TUCKSON: These are young people.

MARTIN: And because they're young.

Dr. TUCKSON: Exactly.

MARTIN: Because people who tend to be affected are young. Now, talk about the fact that many of these caregivers experience a level of stress - I mean, everybody knows that caregiving is stressful, okay? But you're saying that this study indicates that the level of stress is really at a whole other level. Why is that?

Dr. TUCKSON: A couple of reasons. First of all, it is, again, the intensity of the challenges that so many of these women are facing. But it's also, they are - they're isolated. It's very difficult to talk to other people about something called post-traumatic stress disorder. You know, most of us, when we think of that, we trivialize that. Well, I can't see the wound, so, you know, how sick, really, are you? And how desperate is your problem, for real?

And so what we don't understand is that they can't, after a while every day, that can't - that's their life. And they can't make that the subject of lunchtime conversation.

MARTIN: But let me ask you this. One of the reasons I think many people who are not connected to the military are surprised by these findings is that we have this impression that the military is a family, and that there is a community where people understand these things in a way that perhaps other people do not. And so I'm interested to hear you say that there is also a feeling of isolation that is profound. Why is that?

Dr. TUCKSON: I think - and, again, it's because, first of all, they're also -these women are people that used to work or have regular jobs. So many of them now had to drop out of the workforce. They've lost their jobs because the intensity and time required for caregiving causes them to either reduce their hours or take early retirement. So they're no longer working. They're not socializing in that larger world that they did before.

They have to leave their social relationships, because you go out on a - out in the world and go to the restaurant, and all of a sudden, your husband suddenly goes from being engaged and aware to needing to leave immediately, and they have to separate themselves. So they lose their friends, their relationships.

No question the military is a caring community. And thank God for how heroic they are and their support. But the needs that they have so overwhelm even the supports of a caring military family and community, that we've got to respond.

MARTIN: Do you think that the demands of caregiving in this era are different than those in earlier eras?

Dr. TUCKSON: I think, Michel, you've been covering, and NPR does a great job of covering the seriousness of the wounds that are suffered by our soldiers, and also the extraordinary talent of our medical care system to save life.

MARTIN: So people are surviving...

Dr. TUCKSON: Exactly.

MARTIN: ...wounds that they would not have survived a generation ago.

Dr. TUCKSON: That's exactly it.

MARTIN: And - but then they have to live with the consequences and injuries.

Dr. TUCKSON: Exactly. That's exactly it. And not only just one thing. It's a combination of things. So it may be the combination of the psychiatric issues, combined with a significant physical impairment. So it's a cascade effect.

MARTIN: Dr. Reed Tuckson is a board member of United Health Foundation. It funded a new national study called "Caregivers of Veterans - Serving on the Homefront." If you want to read the study in its entirety, we'll link to it on our Web site. Go to npr.org, then click on Programs, then on TELL ME MORE.

And Dr. Tuckson joined us in our Washington, D.C. studio. Thank you so much for joining us.

Dr. TUCKSON: Thank you for shining a light.

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