What it means to age in place—for the individual and for caregivers

Dr. Ellen Beckjord: Stronger communities begin with good health—for everyone.

You’re listening to the “Good Health, Better World” podcast from UPMC Health Plan. This season, we’re exploring the joys, challenges, and opportunities associated with healthy aging. We’ll talk about what it means to age well; how to care for body, mind, and spirit as we get older; and the tools and programs available to ensure a good life, throughout life.

I’m your host, Dr. Ellen Beckjord. Let’s get started.

Today, we'll explore the experience of both caregivers and those who are aging in place. Joining us is Dr. Pamela Toto and Dr. Beth Fields. We'll discuss what it means to age in place, the impact on aging adults and their caregivers, and new resources and technology that offer support.

Dr. Toto, welcome to “Good Health, Better World.”

Dr. Pam Toto: Thank you so much for having me.
  
Dr. Ellen Beckjord: Dr. Fields, thank you for joining us today.

Dr. Beth Fields: It's great to be here. Thank you.

Dr. Ellen Beckjord: I'd like to start with the term “aging in place.” And Pam, if I could ask you to talk a little bit about what that term means and why it's so important.

Dr. Pam Toto: Sure, I'd be glad to. So, aging in place is the idea that as we grow old in life that we have the right and the opportunity to be able to live in our own home and community. And I emphasize the word home and community because it's really more than it being about the house, or the familiar place. But it's really all about for a person to be able to have the right to do the things that they want to do—from the mundane activities of laundry, which we all think we would like to welcome not doing until you can't do it, to going grocery shopping in your familiar store, to being able to worship in whatever place that you choose to worship, to watch the kids across the street in the school.

So, it's all about this idea that, as humans, we have this desire to be able to still be part of those things that are important to us. And what we also know is that people not only have the right and want to do that, but it's really, ultimately a better way to age and also a more affordable way to age than some of the alternatives of ending up in an institution because someone's not able to remain independent and safe.
  
Dr. Ellen Beckjord: So place is really a term that's referring to more than just the home. It's sort of all of the places where people have been living their lives and been in community. Can you talk a little bit about why aging in place is important at this moment in time, given the aging population? And what are some of the critical factors that enable the opportunity to age in place?

Dr. Pam Toto: Sure. So, we all know that the world, thankfully, is growing old. Technology and advances in health care have allowed us to live longer than ever before. So, we're changing that paradigm every day. Because of some population and demographics such as the baby boomer generation, for example, people are living longer, and there's a lot of people that are growing into that segment. And so, what we know is that that's a large group of people who, if they live long enough, may age into finding some difficulty with daily activities or age into some level of disability. And so, it becomes imperative for us to be able to figure out ways to allow that large group of people to be able to live in the most independent, safest, and also most affordable way.

Unfortunately or challengingly in the United States we know that only about 10 percent of homes are age ready or easy for people to age in place. And what that means is that we have an aging housing infrastructure. So oftentimes bathrooms and bedrooms are on the second floor, there’s stairs, there's steep stairways to get to the basement or to exit the home. And that puts a lot of challenge on persons as they're aging to be able to remain and to remain healthy and independent and meet their needs.
  
Luckily, though, we have a growing knowledge and also number of resources, both simple modifications that we can do to people's homes and also some advancing technology. And those technologies are really just, every day, shifting what was an impossibility yesterday into a possibility now that people can remain in their homes. And again, not just remain in their homes, but maximize their independence and their safety and their participation in the things that make home “home” to them, that are meaningful.
  
Dr. Ellen Beckjord: That's really exciting and really encouraging. And if I'm not mistaken, part of that equation is caregiving. Someone who's on the other end of that equation. So, Dr. Fields, if I could ask you to talk a little bit about what caregiving is, how it shows up at different stages in life, and how it is instrumental to supporting people to age in place?
  
Dr. Beth Fields: So family caregivers’ responsibilities can really vary across the care continuum. And care continuum includes aging in place efforts. So the level of family caregiver involvement, the duration of caregiving, and really this degree of control is dictated by the level of care an older adult requires.
  
You know, an example I often like to give is that family caregivers of older adults with chronic conditions that are more predictable, like Alzheimer's disease, may start by providing occasional daily care, such as management of finances and scheduling health care appointments. However, as Alzheimer's disease worsens or progresses over time, the older adult will require more intensive caregiving. And it can span the course of several years. So the family caregiver in this situation is more likely to help older adults transition in and out of various care settings. So thinking about those who want to age in place, but may experience a fall and would have to go into a skilled nursing facility for rehab, the caregiving is going to look very different depending on the setting and the needs of that individual.
  
And then, another example I like to give is that some family caregivers will more abruptly step into their caregiving shoes, so to speak. For example, older adults, they are at an increased risk of falling, and many do fracture their hip and may need more episodic care or temporary care just until they get past that injury situation. So the caregiving will look different depending on the situation.

Dr. Ellen Beckjord: We happen to be recording at a time when Pam, you've just come back from visiting Europe, [on a] work-related trip, and it just made me wonder if either of you care to speak to the degree to which in the United States, we are leading or lagging when it comes to both aging in place and how we support family caregivers?
  
Maybe Pam, if I could start with you, how are we doing in the U.S. with respect to supporting people to age in place, and are we behind or ahead of some of our counterparts in other parts of the world?

Dr. Pam Toto: I did just have the pleasure of coming back from the Nordic Congress of Gerontology, which was in Stockholm, Sweden. And so there were researchers from all over Europe and all over the world really talking about some of these important topics. And it was affirming, and not surprising, to realize that every country is experiencing these same challenges because aging and this longevity of life is a wonderful thing that's happening all over the world.
  
So I would say that we are certainly not behind in terms of recognizing the challenges and developing solutions. What's different between the United States and some of these countries is that they're very homogenous countries, right? Like they are, they have similarities, and their cultural tendencies and challenges are pretty similar across the whole population for the country, whereas we're really a melting pot. And so, we collect a lot of different people who have different beliefs and different thoughts and even like the definition of caregiving. The moral or ethical responsibility that comes from family caregiving varies by country [and] location. And so, I think some of those variations in the United States are much more prominent than you see in those other countries.
  
I think the good news is that we're all learning. There is a theme: Caregiving is hard. People don't always want to do it. There's an interplay between the older adult’s right to make choices and have some risk and some level of independence and the caregiver’s desire for safety. And I also think that everyone's finally recognizing and learning that we have to find things that work, but allow people to adapt how you implement those programs to be able to allow for the variation and uniqueness of each culture. And so that's, I guess—we're not behind. I think our research and our knowledge is rich. I just think we have a little bit more of a challenge sometimes in implementing the solutions because we have so much diversity in our country.

Dr. Ellen Beckjord: Dr. Fields, could you speak to the point about how various aspects, maybe of American culture in particular, can challenge the caregiver relationship? Do we know about either best practices or best approaches for how people who are either being asked to or who are being required to step into a family caregiver role? What are some ways that caregivers can navigate resistance that they might encounter or some of those challenges that Dr. Toto just alluded to? What do we know about how to best support people to do that?

Dr. Beth Fields: Within the United States, the family size is declining because divorce and childlessness rates are increasing. Our health care systems are experiencing workforce shortages, and states are expanding home and community-based services. So all of these things really interact and help explain why so much care for, in particular, older adults are falling on family caregivers whether the family caregiver is able and willing to step into that role.

Some of the resources to help family caregivers once they have stepped into a caregiving role: There are so many resources out there. It really is dependent on the state. There's lots of different eligibility requirements based on who the care recipient is and what the condition they may be experiencing [is]. Being in Wisconsin, through our Area Agency on Aging and perhaps other area agencies on aging across the country have access to this resource as well, but one that our National Family Caregiver Support Program really highlights and gives access to family caregivers is the Powerful Tools for Caregivers. And that's an online website you can go to. And another one is Trualta. And these types of resources are really important because it helps caregivers identify what their needs are based on the circumstance. And they'll provide quick sheets, fact guides, videos–if you're not sure how to do some type of complex medical or nursing task that you may have been charged to do after a loved one discharges from a hospital, for example, and is now back in their home.
  
You know, there's also a lot of condition-specific resources out there. For those living with some form of dementia, there's the Benjamin Rose Institute, and they have vetted all of the different types of programs and services that are evidence-based. So they've gone through different types of studies to show impact on different types of caregiving outcomes, including, you know, to your point, resiliency, stress, burden. So you can really search those resources and figure out what is going to be most beneficial for you.

Dr. Ellen Beckjord: Thank you. That's a great list of resources. And we'll make sure to link to them in the show notes. So let's talk about the CAPABLE program. Pam, if I can start with you, tell us about the research that you and Beth do, and anything you'd like to share about it, we'd love to know.

Dr. Pam Toto: So, I would be remiss if I did not first say that CAPABLE stands for Community Aging in Place, Advancing Better Living for Elders. And Beth and I did not create the program. The program was created by Dr. Sarah Szanton at Johns Hopkins University and her colleagues. And the original program was designed to target older adults, providing person-centered care, working on goals that they identify, and through a combination of an inter-professional team (which would include occupational therapy, nursing, and low-cost home modifications through a handy person)—the idea and intent would be to increase independence, increase safety, extend someone's ability to age in place.

And Dr. Szanton found remarkable results. She targeted a population who were dually eligible for Medicare and Medicaid, and by offering this brief duration, preventative intervention, her research really profoundly identified that people could live in their homes longer and safer. Because of all the challenges that Beth had highlighted earlier about just a growing population, limited home and community-based services, less caregivers, CAPABLE has really become a sort of an icon and a goal for many places across the United States. And Beth and I had the opportunity to be able to implement CAPABLE here through our National Caregiving Center grant.

We were interested in implementation. So we were interested in, how do you get a program like that in the real world? How do you deliver that to western Pennsylvania? And so we were able to partner with the Allegheny County Area Agency on Aging from the get-go. And they are the front-facing reason why this program has been working and it has been working.
  
And then we were also interested in what about that population that doesn't quite qualify for Medicaid but still has limited resources? And so we targeted a population that was above the threshold for Medicaid, but still, again, had limited resources to be able to implement in their home to age in place. And then last but not least, we really were interested in how can the caregiver—or in our situation, we actually learned that the word “care partner” was a more useful term—to how could we involve the care partner but still keep it a person-centered intervention?
  
So oftentimes we think of the older adult and the caregiver as a dyad or a team. But CAPABLE has very widely and broadly been known to be a person-centered—the older adult is the center of that intervention. So how could we include the care partner? Could we make a better model or better outcomes without kind of challenging the integrity of what the program's supposed to be about? So that's really what we've been doing for the past five years here in western Pennsylvania. It's been really fun. We've learned a lot, and I think we're having some great success.

Dr. Ellen Beckjord: That's wonderful. Dr. Fields, would you like to add anything to that?

Dr. Beth Fields: Yeah, I mean, we really learned the caregiver involvement, you know, it varies depending on the situation. No caregiving context is the same. So, we really learned that older adults—and this speaks to the person centeredness of this evidence-based program—that older adults really wanted more choices when it comes to how their care partners are going to be involved.
  
So making sure that roles are defined up front and that sharing of information throughout the CAPABLE program is done in a collaborative manner and that care partners really have this opportunity because this is a program that can be delivered up to four months, up to 10 visits over that period of time. So, care partners have this opportunity to reinforce the knowledge and the skills that they learned during that time span, to help the older adult maintain those skills.

Throughout our time today, we've been using family caregiver and care partner interchangeably. And I really think the identification depends on the care context. So, thinking about like, does the task at hand require more of a partnership between this care recipient and the family member or friend, or is a care recipient requiring this family member or friend to really give the care to them?

Dr. Pam Toto: So, Beth and I are both occupational therapists and within our work with CAPABLE, and in occupational therapy, when you think about caregiving or a care partner, it's this idea of with older adults and aging in place, you can “do for” the person. You can help them and support them to do more for themselves, which is a lot of what CAPABLE is. And then there's also “do with.” So even when people are declining, there still is rich importance in engaging, making those pierogis for Christmastime or wrapping a birthday present. So even though it might be easier for a caregiver to do those things, there's still a rich reward in helping the older adult “do with.” And so, I think this “do for,” “do for self,” and “do with” ties right into what Beth was alluding to in terms of caregiver versus care partner.
  
Not everyone wants to be a caregiver. And sometimes in health care we just assume we're going to keep giving more skills for that person to be a better caregiver. And the truth is they don't want to be a caregiver. And what they really need from us is a way to have more respite. We can, as health providers, do a much better job at realizing what the needs of the caregiver are, and then maybe if there's approach A, approach B, approach C, we choose that based on what the tolerance or the capacity of the caregiver is for long term.
  
Also too like, you know, all of us can do anything for a little bit, right? But if you're caregiving for like forever or it's indefinite, I mean, that's a big difference, too.

Dr. Ellen Beckjord: Yeah, it sounds like the context of the relationship and the needs, preferences, and values of both the recipient of the care and the person who's helping to provide or facilitate the care is of paramount importance, and that every situation will be unique and have its own features, and understanding what those are and how to align things with them is really important.

Tell us about some of the latest innovations that are either supporting caregivers and care partners in their work or that are maybe, I'm guessing largely, but perhaps not all, new technologies that can be used to help people age in place.
  
And so, Beth, if I can start with you, what are some of the most innovative things that maybe you're the most excited about in the caregiving space? And then we can talk, Dr. Toto, with you about how new innovations are supporting aging in place. But let's start with care partners.

Dr. Beth Fields: Yeah. So, I mean, this is a really exciting time in our history, in particular for caregiving policy.
  
So I'm not going to speak directly at like, specific tools, but the policy that can support some of the technology and tools that are out there for the first time, really ever. So in 2018 the RAISE act was passed and that essentially mandated the Department of Health Services to create councils to develop a national strategy. And the national strategy was released to Congress in 2022, and it outlines different types of recommendations. And those recommendations are really centered around five different goals. And one goal is directly related to health care and the need to better engage and actively involve family caregivers, care partners, in delivery processes across settings.
  
So now that there's policy in support of some of these evidence-based practices, tools and resources that have been out there forever, I really think we're going to start seeing in the next few years more support for caregivers than ever before. And caregivers are going to have access to these things because of the policy that's been put in place most recently.
  
Dr. Ellen Beckjord: That's really exciting. And policy developments that drive, sort of, system-level change are always so important for helping more individual level interventions have an impact. So, Pam, can you tell us about some of the innovations that are happening around aging in place?

Dr. Pam Toto: Sure, I'd be delighted to. Before I jump into that, I do want to add one more thing to what Beth was sharing—when we're working with older adults to age in place and their care partners or their caregivers are an important part of it, they are the extension. They are the carryover. So, when we train an older adult how to use new technology or a new technique, part of that is making sure their environment is ready to support them. And in that example, their caregiver is part of their environment.

Recognizing that, the United States actually made a big change. And starting in, I think it was just this year, 2024, Medicare created codes that allow for reimbursement of caregiving training in absence of the client. So historically, I wouldn't really be able to train a daughter or a son unless the client were, the older adult were present.
  
And now there actually is some reimbursable coding that allows health care providers or people who are providing services to help people age in place the opportunity to spend that extra time with the caregiver. And I think that that really is an example of what has come out of some of the policies that Beth was referring to. So, I think that's really probably one of the biggest changes that I've seen in my 30-plus year career is I've never seen a new code. So that's pretty impressive.

But to go back and answer your question about technology, one of the interesting things about CAPABLE is that CAPABLE really demonstrated that we don't need a lot of expensive technology to help people age in place. The national research that originally happened and actually our work, when we look at it, we're talking about things like installing a grab bar, fixing a hole in the floor, fixing a doorbell, improving lighting, securing a rug.
  
The reality is that we can do a lot of small changes and really make a big impact. A lot of the research that's been happening across the United States, outside of CAPABLE, have really found that the number one thing we can do to help older adults age in place is to improve lighting.
  
Smart technology is creating just interesting, new and wonderful means to help people age well and age in place. Everything from providing the caregiver with some remote monitoring abilities to using technology as a means to reduce social isolation, and then also to be able to compensate for people who have mobility problems or cognitive problems. So, we have the gamut of everything from smart pill dispensers to smart locks to smart lighting. There is some digital divide in terms of digital literacy and learning, but there's sometimes misconception that older adults can't or won't use smart technology. And we're finding in our work that that is just not true. We certainly don't want to force that technology on people who aren't ready for it. But if with the right training in the right time and really setting it up for success, we're finding that older adults really can embrace that technology and then the sky's the limit.

Dr. Ellen Beckjord: I love hearing that there is a real sort of full gamut of options, some of which are very low-hanging fruit, easily accessible, and some of which are leveraging some of the most innovative things happening in technology today. That's really exciting. It's encouraging.

Dr. Pam Toto: There's no reason why someone can't move the needle forward and live more independently and more safely. Maybe not like the maximum for every single person, because of all those different factors, but there's enough out there that every single person who wants to age in place can improve their likelihood of aging in place through some solutions

Dr. Ellen Beckjord: I want to say thank you so much, Dr. Toto and Dr. Fields, for being a part of this season of “Good Health, Better World.” Your input and sharing your thoughts and the resources that you've talked about today have been very helpful. Thank you for being with us today.

Dr. Pam Toto: Thank you. Great pleasure.

Dr. Beth Fields: Yeah. Thank you so much.

Dr. Ellen Beckjord: We heard about a number of great resources today from both Dr. Toto and Dr. Fields. Everything from resources that might help people who are navigating caregiving in their personal lives, to folks who might want to learn more about what their research is showing about how this field is evolving and the latest innovations in it. And for listeners who would like to learn about any of those things, you can visit our show notes for the resources that were mentioned today.

Dr. Ellen Beckjord: We hope you enjoyed this episode of “Good Health, Better World.”

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