Anne Tumlinson is the nationally recognized eldercare expert who founded Daughterhood, an online community providing support and advice to adult children caring for their aging parents. She is also the founder of Anne Tumlinson Innovations, a research and advisory firm focused on transforming the way care is delivered and financed.

With more than 25 years of research and consulting experience, Tumlinson has often testified in Washington and written on innovation in aging services. Previously, she led Medicaid program oversight at the federal Office of Management and Budget.

Recently she talked with Gerontology Institute Director Len Fishman about the evolution of Daughterhood, practical problems facing caregivers and policy issues that affect innovation in the field. The following is an edited version of their conversation.

Len Fishman: You were and are a respected policy wonk and insider on aging issues, and then you decided to start this public-facing but also highly personal website and business to help the children of parents in need of care. What made you do that?

Anne Tumlinson: As I got into my middle age, I had close family members and friends who started interacting with the health and aging care system for the first time, in real time on the ground level. I was sort of shocked by how hard it was and also just how little even my expertise could help. I thought it was important to start a national conversation around the experience of being the adult-child caregiver of parents in the context of our aging and healthcare systems, which are largely broken, and to talk about how can we help each other do that better.

LF: You got some pushback from male colleagues about the name “Daughterhood.” In fact, parents are far more likely to be cared for by their daughters than their sons. But, as you acknowledge, sometimes men do the heavy lifting. Even so, you’ve written that women experience this responsibility differently. Would you explain that?

AT: There are many men doing this job heroically and contributing to the lives of the people they take care of. I think in some cases they’re actually more lonely than women and they need resources as much as anybody. But there are three things, I think, that make the woman’s experience different.

The first is that women are much more likely to be the hands-on caregivers. They are much more likely to be that day-in, day-out, bathing, eating, dressing support. That is physically demanding and demoralizing and challenging in a way that nothing else is.

Second, when men encounter a broken system they’re just culturally and sociologically programmed to kind of look at that and say “Oh, that is a broken system. It’s hard, but it’s not about me.” Women are culturally programmed to say, “My mother is suffering because of this hospital or this physician.” And she tends to react by saying, “I should be doing something better. It’s my failure.” It’s much more likely to be internalized. A lot of the work that we do in Daughterhood and our message is around, “You’re doing the very best that you can. It’s not about you. It’s about the system in which you are operating.” This message I think is particularly important for women. I want them to hear it.

The third thing is that women have already experienced this life-long set of challenges around balancing work and family. They’re doing that in a way that is profoundly more difficult than what men experience. That’s well-documented in the literature.

LF: Over the years Daughterhood has been around, what have you learned from the women, and I’m guessing the men, too, who write to you and join Daughterhood’s online community? Things you might not have learned as a professional that are troubling people in this position.

AT: I had always assumed that the primary problem we faced as a country was that people didn’t have enough money to pay for care. If you need a lot of care, you’re going to need Medicaid and that’s not a great system. I thought that if we could just figure out a way to pay for things better we would be home free. But I was getting emails from people who had plenty of resources and were still struggling. And people who don’t have any resources obviously face even more challenges. I think it’s just a really hard set of life circumstances for anybody, no matter what.

The other thing that really struck me is just how incredibly challenging the family relationships are —  how hard it is even for the most high-functioning of families to find productive ways to work together. No matter what you do, there’s a lot of hurt feelings. It’s incredibly stressful.

And, finally, most of the questions I get around how the system works are usually about what happens during the transition from hospital to home and what happens when that goes wrong. The transition home from the hospital and having the right amount of support and what’s going to happen next is a huge pain point in families.

LF: Are there any special areas of misinformation that you encounter when people are contacting you?

AT: People are confused about Medicare. Most think Medicare covers everything. It’s like all your problems are solved once you have Medicare. They don’t realize the gaps, which are huge. For example, someone on our Facebook page had commented on an article that I had shared about how a person dealt with $15,000 in medical debt, asking how that person could have all that medical debt when they’re on Medicare? And I was like, “Oh, let me explain.” Medicare requires that you have other kinds of insurance in place to fill the gaps. That’s where there’s the most confusion.

LF: When you launched Daughterhood, I remember you explaining that while we expect to take care of our children, the realization we will have to set some period of life aside to take care of our parents is not something we expect. Do you see this possibly changing as more people have that realization?

AT: I think that in the next five to six years we’re going to see a pretty major shift where more people are going to be grappling with caregiving. It’s going to feel a lot more common in society.

LF: Do you see this growing recognition possibly fueling political demand for some kind of a long-term services and support (LTSS) benefit? There has been some action on this at the state level.

AT: I don’t know, I hope so. If there is going to be that kind of demand, I think it will happen in the next five to 10 years. We have a lot of work to do on the policy side to help. People tend to personalize this and make it more about family and don’t see it as a political issue. Even as more people start to struggle with it, I think we’ll see a lot of lovely community responses. We’ll see some more state responses around better infrastructure and better information hubs and delivery modalities. But that financing piece requires people to make a link between something that is part of the most personal aspect of their life and a government program and taxes. I just don’t know how that will all come together.

LF: When we talk about an LTSS benefit, obviously it can take many forms. In your opinion, what are the essential features of such a plan if we were to enact one on a national level or if you were giving advice to a state about how it might tackle this problem?

AT: You have to figure out a way to include as many people in your risk pool as possible. Insurance only really works when everybody is in it. If all that can be sustained politically is a small tax and a small benefit but you’ve got everybody in the risk pool, then I would say do that. I’m not a fan of government programs over private market or vice versa. I think there are ways in which a public-private partnership can work but the government has to be driving.

Beyond that, there’s a really broad variety of ways in which you can set it up. I’m kind of a fan of the way that Hawaii and Washington have set it up where everyone has access to these benefits. It creates a marketplace for things that we need and that means we can create better things that we need.

LF: You have spent most of your career in Washington interacting with public officials. Do you see a difference between male and female legislators when you talk about this issue?

AT: Actually I don’t. I see a difference between people who have been through it and people who haven’t. If you’re talking to a legislator who has been personally affected by the experience of caregiving or watching one of their loved ones go through this situation, they tend to be a lot more interested in talking about solutions than someone who hasn’t had that experience.