One of my favorite ways to do this is to attend an Aging 2.0 conference. So next week, I’ll be going to Optimize, their flagship conference which will be taking place in San Francisco.
Like me, Anne has a particular interest providing practical help to those helping aging parents. She’s also an experienced health policy analyst, with a special focus on long-term care, and a nationally known speaker on aging and caregiving issues.
In this conversation, we talk about some of the problems that are most pressing for older adults and families. We also talk about some particular innovations and ideas that will be presented at Aging 2.0.
To listen to this conversation, visit the episode page:
Or read the transcript below.
Then let me know in the comments: Will you be Optimize 2017 next week? What kinds of innovations and solutions are you hoping to hear about?
Transcript: GeriTech & Daughterhood talk about needed innovations & Aging 2.0 Optimize
LK: Today we’re going to be talking about a topic that both Anne and I have been following for a while, which is practical innovations to help older adults thrive and to make family caregiving more manageable.
Anne has attended some really interesting conferences recently. She was actually featured at the Aspen Ideas Festival this past summer, as part of a panel on caregiving, and she’s also going to be on stage at the upcoming Aging 2.0 Optimize conference, which is a major aging innovation conference that will be taking place in San Francisco later this month.
So I’m really pleased to have her back on the show today to talk about what kinds of solutions and innovations might help family caregivers manage the practical problems that they face every day, and also what kinds of innovations might make it easier for older adults to keep thriving as they age.
LK: Before we get into the innovations that you’ve heard about, or the kinds of problems that you’re especially looking forward to hearing solutions about: from your perspective, what are the problems that seemed most pressing and urgent for your caregiving community? What are you hearing about the most from families?
AT: You know, it’s hard to know where to start because the challenges that caregivers face don’t fit neatly into one bucket. But I guess if I had to summarize that, I would say: feeling overwhelmed balancing everything.
Every day brings just a raft of challenges, from day-to-day kinds of hands-on caregiving, all the way to navigating the healthcare system, to figuring out how to pay for everything. So just the sheer volume of things to do.
And then emotional overwhelm of the person that you’re doing it for being your parent. The other thing that comes up time and time again is are the conflicts.
From dealing with siblings, or with the person you’re taking care of.
It’s like an added layer of challenge on top of everything else.
LK: So, lots of overwhelm about where to start, what to do; challenges navigating the healthcare system, challenges in figuring out how to pay for things and what are the options.
And then challenges negotiating the conflicts, not only with one’s aging parents but also with siblings and others in the family. So yes, definitely a lot going on for family caregivers.
Let’s talk more about navigating the healthcare system for a moment. What seems to be so hard about it, from your perspective and your caregiver community’s perspective, and what’s being done to make it all more manageable?
AT: The healthcare system is basically just a way of saying all of the different types of providers and organizations that deliver healthcare: hospitals, doctors, clinics, labs, etc.
You know, that system was not designed in a thoughtful way, it’s just what we have as a result of the ways in which we have paid for this care historically. So it’s not a rational organized system. It’s really not a kind of system.
So everything that is delivered is done in this very kind of bureaucratic and siloed way. By siloed, I mean, every organization only deals with what’s happening in that organization. The hospital deals with what happened to the hospital, rehab deals with what happened in rehab.
And the reason this is so hard for the family caregiver, is that they become the de-facto navigator and manager, and the bridge across all these different organizations. And they’re not trained healthcare professionals.
Here’s one of the things that I hear people say. A friend of mine said: “It doesn’t make sense that I’m in charge of all of this, because it’s actually clinically complex and confusing.”
[Family caregivers are] essentially being asked to play the role of nurse care manager from a hospital stay to the rehab stay to back to the doctor’s office. It’s all on you. And that’s what makes it so hard.
LK: I think it’s often an unpleasant surprise when people get more involved, and start to realize that all these things that they just assumed would be coordinated and communicated between their primary care doctors office and the hospital, or with the rehab facility, are often not coordinated at all or barely coordinate. Or are coordinated much later than they think it will be.
And they realize that on top of everything else they’re coping with, they might have to take a more active role in making that communication coronation happen.
AT: Exactly. And then on top of it, there’s this expectation that somebody will know what they should do, or where they might be able to find help with the different types of things.
So you might be at your doctor’s office or at the hospital at the point of discharge, and you say: “You know, what we really need is to find a different place for my mom to live,” or, “We really need to bring in ongoing care into the home, who do you recommend?”
And usually, they just get blank stares. And at best, a family caregiver might get a list of something like a hundred different agencies. Here you go! Good luck choosing!
So there’s a sense of being completely isolated, of having to figure it all out on your own.
LK: Given that so many older people are going through this, there’s been a lot of interest in innovation, both in healthcare and then to help older adults and families. What’s come up in the past few years? Has anything come up to make this a little bit easier and more manageable for people?
AT: Absolutely. It’s really exciting to see these organizations that are on the cutting edge, really truly trying to develop something that will center care in one location and be kind of like the rationalizers of the system for older adults and their families.
One of the trends that we’re seeing is this the emergence of what I’ll call “enhanced primary care.”
The idea is that older adults especially really benefit when there is one primary physician who is informed and educated about the needs of older adults, in particular. And who can really help service that point of contact for clinical care and clinical decisions.
It sounds perfectly logical, but it’s actually much harder to find than it should be. Oak Street Health is a really good example.
LK: You’re going to be moderating a panel on this at Aging 2.0. Tell us a little bit about CareMore, which is innovating in this area.
AT: The difference between Oak Street Health and CareMore really is that Oak Street Health is at its core a healthcare provider. And what they’re trying to do is work with insurers to say, “hey, give us a set of dollars and we will manage the care for your enrollees better.” Or, “We’re going to try to take the dollars in the healthcare system and reorganize them to make a lot more sense.”
CareMore has the same philosophy, but they’re actually the insurer. So, what they do is they try to find the Oak Street Healths in communities, and empower them as primary care providers. They also, through a kind of a function called “intensive care management,” go out and try as much as possible to serve the role of the
adult family caregiver, and take responsibility for ensuring that care is smoothly coordinated across all these different parts of the system.
They’re actually at risk, it’s a Medicare Advantage plan.
LK: So it’s a special type of Medicare HMO that takes on that responsibility, and so then helps create the infrastructure and the services to provide more of that coordination. Because as we know, insurance companies often lose money when older people are hospitalized, so they might be natural allies for families and for innovators,
who want to address this issue.
AT: Exactly. Also, in addition to CareMore, on the panel we’re going to have somebody from Wellby, which is a new organization that is operating as what’s called a Program for All-Inclusive Care for the Elderly (PACE).
PACE programs exist all over the country. They are like CareMore on steroids. They’re like an insurance company and a provider all rolled into one, and they operate Adult Day Care Centers where older adults come, two or three times a week, and much of the healthcare is actually delivered on site by this team, that coordinates together because they are all onsite together.
LK: Yes, the original model for PACE was here in San Francisco, it’s called On Lok. And we talked about PACE with Amy Berman [of the John A. Hartford Foundation], when we discussed age-friendly health systems, because these integrate a social center for older adults with adult day health care, which means some more sort of “skilled health services” like nursing and physical therapy and occupational therapy. And then they also provide a medical clinic there, so you can see the doctor or nurse practitioner or pharmacist. And the care is provided by a whole team.
A team is better able to address all these different angles of what’s going on and help families with all those angles.
That’s exciting, I didn’t know that Wellby was going into providing PACE-style care. PACE has been around for a while, but has never quite taken off. But maybe now is the time when they’ll be enough incentives and energy for more new companies to take on the PACE model and expand it and improve it, right?
AT: I really hope so. The federal government just said about a year ago that they’ll allow PACE programs to be for-profit. Before that, only not-for-profits could be PACE.
And the outcome of that is been that some of the private investors have gotten really interested in the model and so, maybe with some private dollars getting invested into it, we will see some growth finally, because it is a wonderful model.
LK: Yes, it is a wonderful model. How do you feel about that it becoming for-profit?
AT: I’m hopeful and optimistic. It’s been not for profit for a really long time and we haven’t seen it grow very fast. We may have to compromise a few things in the for-profit model. It’s just a different set of incentives, but maybe it will be worth it, if we can bring the model to more people as a result of having real capital poured into it.
LK: Yes, and when Amy Berman was talking about age-friendly health systems, she said the “Four Ms” were really important, that healthcare should address mentation, mobility, medications, and then what matters.
So yes, if bringing in more for-profit organizations helps more older adults and families being able to access a provider who can provide that kind of help and help knit together all the complexity of what goes on in healthcare, it would probably be a really good thing.
AT: Yes, especially when you think about this aging population. My dad’s going to be 80 next year and he just bought a convertible, and a puppy, and we’re going skydiving for his birthday.
Everybody says “I’m going to be that 80 year old.” Well okay, my dad’s 80 and he’s doing great, but he’s probably going to live to be 95, or older.
And in fact, maybe from the time he’s 95 until he’s 100, he will be in need of tremendous amounts of assistance, and he’ll have a very complex medical and kind of fragile situation.
So the challenge that the PACE sites and Oak Street Health and CareMore and other organizations face is that they need to take a really complicated person, and deliver these four M’s that Amy Berman talked about.
They are the intermediary between a complex person and the complex system, trying to make it all work, and so it’s really hard. But I’m really excited about what they’re trying to do.
LK: Well, it’ll be fun to hear more about that at the conference. Let’s now talk about some of the other challenges that come up. To a certain extent, family caregivers end up having to step in and help their parents because often, older adults don’t get enough access to certain services, and supports, and other things that help people age more successfully, or cope with whatever age-related problems they might develop.
Often when I’m at these innovation conferences, I find myself thinking about my short list of what’s most important for older adults to have.
Something that often comes up is, a suitable place to live, so a place where they can either age in place, or really “age in the right place,” meaning a place that allows you to be the best you can be and also gives you a good shot at maintaining that for the future. Sometimes people also use the phrase “thriving in community.”
So what is a good place to live as you’re aging? Have you heard of any good innovations that address this core need? Families often ask us “Where should my older parent live?”
AT: If there’s one industry that’s not been particularly innovative, it’s what we call senior housing. We’ve got essentially the very top tier of the income distribution being served by very expensive facility-level care. So assisted living facilities, independent living, to the tune of $60,000-$70,000 a year.
Your choice is basically that, or live at home with either paid home care brought in or as is usually the case, simply the support of unpaid family caregivers. Or you’re living with your family members at that point, as an older adult who needs a lot of services and supports.
So, we don’t have great options right now for just regular affordable housing that is really set up and designed and supportive of the needs of older adults. Having said that, a really good friend of mine, his name is Ryan Frederick, and he has started a company called Smart Living 360.
And what he’s trying to do is kind of take that housing model and put it in in dense communities where older adults can age in place, supported by a lot of technology in the home, and also connected to lots of resources in the community. And also intergenerational social engagement and support. I highly recommend going to his website.
LK: That really sounds like an interesting model to explore and develop.
AT: And then Bill Thomas, who will also be at Aging 2.0, is always working on innovative and interesting things. Whether it’s a nursing home, the Green House model, he’s trying to design the living environment to be not just safe and medically suitable, but also enriching for the person’s day-to-day life.
LK: Yes I was interested to see that. Bill Thomas is the geriatrician who was featured in Atul Gawande’s book, Being Mortal, because of the innovations that he brought first to nursing homes, which was called the Eden Alternative, and then he came up with the idea of a smaller facilities for people who need nursing home care which are called Green Houses, which were much smaller and more house-like.
But now apparently he started a new project called Minka which is about making affordable customizable small houses, which I guess you could order affordably and then… either plunk them close to your adult children or maybe you could get a bunch of them as older adults and live together in community. I think we’re all still waiting to hear more details about it. But he’s apparently been thinking deeply about the housing question for older adults and thinks this might be part of the solution.
AT: Yes. He’s always thinking of innovative things, he’s always about 10 years ahead of everybody else, so I hope is that that this idea will get some traction because, we need to be testing a lot of things right now, we need to be trying lots of things.
LK: Right. So, another issue that also comes up often related to housing and the question of where to live as you get older, and where could you live that support you properly even if you develop age-related challenges, is transportation.
Many older adults lose the ability to drive safely – although they don’t all stop driving — often because of vision difficulties or because they’re just having difficulty with their memory and thinking skills, which certainly affects driving. So this comes up a lot as a need for an aging population.
Have you heard of any interesting innovations that might address that need to help people manage their transportation and mobility needs?
AT: There’s a lot of discussion about how autonomous vehicles or self-driving cars basically will revolutionize the ability of older adults to get around. And I think that’s extremely exciting and I’m very much looking forward to.
But I think for right now the innovations and changes that I think has the most promise are the ride-sharing services like Lyft and Uber.
To go back to the examples of Oak Street Health, CareMore, PACE: those organizations have incorporated ride-sharing services into the larger program of care that they’re designing for the people that they’re serving, just to ensure that transportation isn’t a barrier to you getting socially integrated at your community or a barrier the medical care that you need.
Or ensuring that because you can’t go grocery shopping anymore, are you getting the meals in the food delivered in a way that you will be likely to eat healthfully and not neglect your nutrition, just by virtue of the fact that maybe you don’t feel like preparing meals, or you don’t feel like going out and getting food.
And transportation and food delivery are two sides of the same coin, and both of them are really critical components and often missing. This is what the caregivers so often end up filling in for because it doesn’t happen for so many people, those who aren’t served by Oak Street Health or PACE or some of these other organizations.
LK: Right, so even though Google’s self-driving cars get a lot of hype and interest, maybe it’s more Uber and Lyft and these ride-sharing networks that might end up playing a bigger roll in both helping older adults get to where they need to go, and also in bringing them groceries or things that they need.
A nice thing about that too: we know that a lot of older adults are quite isolated, people often end up aging in the home where they lived for decades, which may be somewhere where you don’t have a lot of people coming by, if it is in a suburban area. And so for some of those older adults, especially they stop driving, it ends up being just the Meals-on-Wheels person who comes a few times a week, this was their main social contact.
And so when I think about the robot cars, I think “wow, that could be good,” but then again, you’re kind of taking away an opportunity for the older person to have a brief conversation with another human being, and is that really the route that we want to go? So it’s interesting to think about how Lyft and Uber might work out with that.
Now in a similar vein: another thing that that helps people thrive as they’re getting older, regardless of their underlying health conditions, is social contact. And having purpose and meaningful activities, such as continuing to work, or to volunteer, or to contribute to the extent that you’re able to.
And so there is a group that’s going to be presenting at Aging 2.0 called AgeWell Global. And they’re proposing to recruit older adults as peer community health and aging resources for other older adults.
Can you tell us a little bit about this program, and do you see this as having good potential to relieve the pressure on family caregivers and also help older adults?
AT: I’m going to confess that I had not heard of this organization until I was looking at the Aging 2.0 conference agenda. And it’s crazy, because I’m also based in Washington DC, and a lot of what I do with Daughterhood is that we basically try to create community at the local level to support not only caregivers but also the people that they’re caring for.
So I love the purpose of this, from what I’m learning about it. This just does so many great things because it gives adults who are older middle-aged adults, like me, in their fifties, and older adults even, an opportunity to actually work, caring for the more frail older adults in the community, like community health workers which is an incredibly great model.
These are individuals whose job it is to connect the dots between all the different community resources that are available — so for example, Meals on Wheels, or paid home care services — with the individuals who need the help. So there they are again, they are like that unpaid adult daughter, and also providing a lot of socialization at the same time.
If we can create jobs for people, doing the work that older adults really need done for them, then I’m just all for it.
LK: Right. And you know, there are 80 year olds who need some help, and some of them even need a lot of help, but there are others who are like your dad, who might be actually quite happy to learn a little bit more about aging, and be visiting other people who need a little bit more assistance, and be contributing to their well-being.
And it could even keep somebody like your dad doing well for longer than if he didn’t have that kind of opportunity to participate and work or volunteer. Because we know that having something to do and having people counting on you is actually really powerful in keeping older adults engaged and doing better.
AT: Also, one of the things we hear a lot in the Daughterhood.org community is that when family caregivers lose the person that they have been caring for, when their parent or spouse dies, after years and years and years of caregiving, they often feel a loss of purpose.
So they feel two things: a loss of purpose and a loss of identity, because they’ve been doing that job for so long. But also they feel like “I’ve gained a ton of skills, I know how to do this, I know where all the resources are.”
They’ve basically forged a path for themselves, and they really want to give back, they really want to find a way to share with others what they’ve learned. And I just see AgeWellGlobal as yet another outlet, potentially, for those incredibly informed, talented, and resourceful caregivers, they’re experienced caregivers who could jump back in and support other people in their community. As you can see I’m very excited about it.
LK: Yes, it’ll be fun to learn more about that at Aging 2.0.
Let’s go back to some of the common problems and challenges for family caregivers that you were mentioning at the beginning.
I’d love to know if you’ve come across anything that you’re optimistic about in terms of a solution, for instance you mentioned that working out a plan with your siblings and family can be really hard.
Any exciting innovations that might address that need?
AT: Sure. I’m on the board of an organization called the Caregiver Action Network, which is also based in DC. One of the things that they’ve been doing has been designing a training program for decision making.
So making decisions is just a really incredibly stressful part of being a caregiver. So many decisions to make and all of them are so weighty.
But also what makes decisions so hard is that you have to incorporate very divergent views from lots of different people, many of whom you have a very long history with like siblings.
And their training on making decisions — it’s called person-centered care decision making. What I have learned as a trainer, and what I’m trying to teach, is that one of the most important steps that gets skipped, is actually creating a process in your family and dedicated time for spelling out and writing down each of your individual goals for the care that you’re providing to the loved one. And also for that loved one to also write down their goals.
Even if these goals are in conflict, even if some of them are unrealistic, just getting them out in the open is really important to working towards a resolution that everybody can live with. That process of working toward a resolution occurs with the input of hopefully a great family physician or a primary care physician, but also sometimes a pastor, or even a hired social worker, or trained mediator, or counselor or someone like that.
I think a lot of people go into this thinking, “we’re just going to kind of work this out,” or “this isn’t the kind of thing we need to bring in a professional for.”
But it absolutely is. This is really hard. If you didn’t fight with your siblings before, now you are going to. It’s just so fraught and so emotionally challenging, and it brings up all of the issues that come up in families.
And so having a professional involved, being very explicit about getting your goals out, and sharing that back and forth with each other, and working consciously towards a process of making decisions together… what we’re hearing is that is working for a lot of the families that we’re training and working with. And it’s not a straightforward thing.
LK: Sounds like a fantastic training. Is it available right now to everyone? Or is it still in testing and development?
AT: The grant [that funded this] is bringing this training to four or five different communities over the course of a year. People can check out the website to see where they are but also to get in touch and say “hey we’d really like for that to happen in our community.”
Personally, I would love to adapt the training for Daughterhood circles. Many of our circle leaders are desperate for some more programming.
LK: Now that’s part of your innovation, creating Daughterhood. Tell us briefly what the circles are, they might be great for some people in the audience.
AT: So on our website Daughterhood.org, there’s a tab for “Circles.” We have about 17 or 18 now. We launched them about a year-and-a-half ago.
They’re locally based, even micro-local. So for example right now we have one Daughterhood Circle in Atlanta, but it’s in a suburb of Atlanta. We’d love to have five in Atlanta, because there are so many neighborhoods and little communities, like downtown Atlanta.
Our goal is to is to support any individual who is interested in creating community for themselves and for their friends, their neighbors, their church group, whoever, to come together and really just share information, share resources.
Also to just have fun, to get together for a meal. Because it can be so isolating to be doing this in a vacuum and, so many people will say, I just had no idea anybody else was going through this.
Well guess what, tons of people are going through this, we just have to connect to each other, so that’s what we’re trying to do.
LK: Wonderful. This is been great hearing about this, thank you so much for taking the time to talk about this. I’ll be seeing you soon at the Aging 2.0 conference!