|A CULTURE OF CAREGIVERS|
December 24, 1999
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
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.
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.
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
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.
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.
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.
A. Signs of depressive symptoms.
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.
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.
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.