A CULTURE OF CAREGIVERS

December 24, 1999
		Ezekiel Emanuel, M.D., Ph.D., chair of the Department of Clinical Bio-ethics at the Magnuson Clinical Center, National Institutes of Health. Health Correspondent Susan Dentzer talked to him the increasing need for care givers.

Focus: Exploring Eldercare Forum: Caring for our Caregivers Dec. 24, 1999: Learning from Eldercare, in RealAudio or RealVideo Extended Exerpts: Ezekiel Emanuel Extended Exerpts: Suzanne Mintz Dec. 13, 1999: Living with Mental Illness Sept. 28, 1999: Fighting Parkinson's Sept. 10, 1999: Dying with Dignity July 8, 1999: Research for Alzheimer's Jan. 4, 1999: Helping families with long-term care. Complete NewsHour coverage of health.   National Family Caregivers Association National Institutes of Health

Q. Now, the National Family Caregivers Association estimates that there are 25 million active caregivers, obviously not just to people in the terminal phases of an illness, but broadly people with chronic disease. Can we extrapolate from your survey to that number? Could we suggest that perhaps as many as 16 million American women are actively engaged in care-giving responsibilities? A. It's probably a little less than that because among the elderly, from the data I've looked at, it seems that men have a slightly higher responsibility, and that's probably because if you look at the breakdown, men tend to be good at arranging care and sort of care management, and women tend to do a lot more of the hands-on care, the actual feeding, cleaning of the house, taking the patient to the bathroom, and among the elderly it may be that there's more arranging to do when people get sick and are dying. There's probably a lot more that you have to do just for the patient themselves that really falls on that family member. So among the dying it's probably true that we would tend to take an even bigger burden. Q. You've described this as a major national issue. Why is it a major national issue? A. Well, I think it's a major national issue for three reasons predominantly. The first one is if you look, project out as the baby boom generation ages, by 2030 one out of every five Americans is going to be over 65. A significant portion of them are going to need assistance. So the number of people needing assistance is going to rise. Secondly, each family, as we know the birth rate has declined, so each family has fewer children. So that responsibility for the elderly is going to fall on fewer people. In addition, we have many more women going into the work force, so their ability to provide this care, the free time in which they could do it is going to decline. Similarly, we have a huge amount of divorce in our society, and what might be called fragmentation of families. And if we're relying heavily on families to provide this care, and the family structure and the bonds aren't as tight, that could create a big problem, and mean that we're going to have to have a lot more paid assistance to step in. Finally, I think another major factor is we're a very mobile society, and now you have Mom and Dad maybe living in Florida or Arizona, one set of kids in Portland, another set of kids in New York, and that geographic dispersion also may make it very difficult for the family to be present, especially if the illness is over a longer period of time. So I think all of these factors - it's more than three factors - all of these factors probably are going to exacerbate the problem of caring for the elderly and dying in this country over the next 30 years. Q. In addition, just in the past couple of weeks we've had new data suggesting that what we think of as the traditional family is no longer the norm by any stretch of the imagination, which I would gather also complicates this. A. Right. We have no idea really how firm the ties are that aren't built up by marriage and by formal legal arrangements, and whether they're really going to survive. And people who aren't related in this way are going to come to the call of elderly and dying patients who need care. And since this care does impose a burden on the family, and there are responsibilities, and those responsibilities are very constant, especially when patients get sick, it's going to be a big question as to whether our alternatives are going to be as reliable for elderly and dying patients in the next generation. Q. Similarly, a study just out today shows an enormous loss of income among, in particular, women who take on care-giving responsibilities. You can almost track how much income people will lose as they get called away from work in order to care for loved ones. A. Well, I think there is this interesting dynamic that as people get sicker and, say, become bed-bound or can't do things for themselves, the amount of needs they have goes up, the demands on the family go up, and the pressures go up. So what you might have been able to do maybe an hour after you came home from work, if that person is getting sicker is now going to require more time for you, and the juggling act will make people have to choose between not only their parents, their kids, their work, lots of their activities, and this is a big responsibility and burden. And in the field there is this phrase, this is informal assistance. Well, it's informal only in the sense that society doesn't pay for it. That doesn't mean it's not serious and an important part of people's lives, and an important part of their calculation in terms of the jobs they take, how they're going to manage, and the stresses that their families face. Just because we don't pay for it means it's sort of off the economic calculation. It does not mean it's not real, and it does not mean it's not a major factor in how families feel just because the economists notice that when people's earnings go down, does not mean it's real only when it affects earnings. It is very real for many families way before the earnings get affected. Q. On a scale of one to ten, nationally, how upspeed do you think we are as a society on recognizing the dimensions of this issue? A. I don't like one to ten scales, but I think it's a major issue that we have not looked at seriously in part because it does not fall within any particular groups focus, and this is especially true with dying patients where they don't have a big advocacy group. But I think, unfortunately, many parts of our society see it as a cost. When care-giving or home care goes up, Medicare sees it as a cost to be controlled rather than us being able to look at the underlying issues and trying to find the most effective way of handling it. Unfortunately, and sometimes this overwhelms families, you end up seeing people go into nursing homes, and then costs really do go up dramatically, but I don't think our country has really focused on the best way of getting assistance to families and mitigating the very heavy responsibilities that are required. Q. As I mentioned, we met today with a good size sub-group of the 14 friends group who have written this book. They described themselves as being told by other people that they are very unusual. They're a group of 14 people. They have provided an enormous amount of support for one another as they have sequentially gone through this issue of caring for dying parents and so on, and they have been led to believe that this is not the norm, that having this kind of support from a network of friends as people go through this is not the case. What, in the survey, would bear that out or not bear that out? A. We actually didn't ask that directly, how much support they have from others. One of the things, as I mentioned, we do know is that in about a quarter of cases families do need paid assistance to come in and supplement them. But we do have a - we do know that the more needs people have, the more adverse effects there are on families, so that there is a - those caregivers have higher levels of depression, they have higher levels of adverse health outcomes, increased health needs themselves over time, so that the burdens are higher. We also have some sense that when doctors are sympathetic and when doctors are encouraging and actually worry about this, it's better for patients. And so I think this support probably has been helpful for the 14 women you interviewed, and it's generally a good thing. Q. Overall, what do we know about the rate of care-giver burnout as evident in this survey? A. I don't have that statistic exactly at my hand, but one of the things we know is that about a quarter to a third of people have some depressive symptoms from this caregiver. Caregiver burnout is a much broader issue than just depressive symptoms in the sense of interference with life, and with their own life. But there is a not insignificant rate of stress and burden from this. The vast majority of caregivers actually find caregiving fulfilling, but as the demands of the patient go up, because they are sicker, the burdens and the responsibilities get much higher. And it's in that group where they really have a lot of responsibility. That's where you see most of the problems and most of the stresses. Q. And you said between a quarter and a third actually exhibit symptoms of depression? A. Signs of depressive symptoms. Q. Which would include - A. Well, feeling blue is a major one, changing their own attitudes and outlooks on life can also lead to vegetative - what doctors call vegetative symptoms. Changes in sleeping habits, changes in eating habits. Q. So this isn't necessarily full blown cases of clinical depression; nonetheless, serious signs that things are not going well. A. Right. For some it is a full blown case of clinical depression, and that's been well documented in a number of studies, that there are higher rates of depression among caregivers, but even more subtle findings that aren't full blown depression, but are signs of stress and burden are there, yes. Q. Another interesting piece of information that surfaced was the great dependence of low income women in particular on nonfamilial caregivers. They basically don't have a lot of family to care for them. Let's talk a bit about that. How big an issue is that, how big a problem is it? A. Well, one of the things that we found, which is interesting, is the fact that lower income women in particular have to rely on paid assistance to a much larger extent. Indeed, women, even when they're married, have to rely on paid caregiving assistance more than men, and I think that we found about a 15 percent group that really had to rely on paid assistance almost exclusively to meet their care needs, and I think that this is a very vulnerable group in our population. They're vulnerable to changes in policies, to restrictions on home health care services, and they're not very good just because of their vulnerability of advocating for themselves and being able to navigate the system if something adverse happens to them. And we think policy makers need to be particularly attuned to how their changes in policies, which they may be doing for very good reasons, affect this group, especially the terminally ill, because it's not a group you're likely to hear from. They're battling so many other issues, and then eventually they end up dying. And yet changes, as I said, in home health assistance or in hospice care, or in the skilled nursing facilities can have a very major effect on this group.

REGIONS TOPICS RECENT PROGRAMS ABOUT US FEEDBACK SUBSCRIPTIONS / FEEDS:

Support the kind of journalism done by the NewsHour...Become a member of your local PBS station.
PBS Online Privacy Policy Copyright ©1996- MacNeil/Lehrer Productions. All Rights Reserved.