- [Narrator] "Flatland in Focus" is brought to you in part through the generous support of AARP, the Health Forward Foundation and RSM.

Produced with the generous support of the William T. Kemper Foundation, Commerce Bank, Trustee, Husch Blackwell, and by viewers like you.

Thank you.

- Hi, I'm D. Rashaan Gilmore, and welcome to season three of "Flatland in Focus."

Today we're diving into a topic that affects millions of families across the generations.

Caring for family members wishing to age in place at home.

(upbeat music) As baby boomers approach retirement age, they're faced with a significant decision.

Should they remain in place in their homes as they age?

Or should they explore alternative living arrangements?

Additionally, many find themselves in the role of caregivers suddenly, and oftentimes having to significantly alter their lives to care for a family member.

The idea of aging in place is strongly preferred by most people, and it holds deep emotional ties.

It's about preserving the comforts of home, where memories are made, and maintaining a connection to community and independent living.

But it also presents challenges that extend beyond just pure nostalgia.

Let's hear from those who are wishing to age in place at home, as well as the people who are taking care of them and helping to make that possible.

- All the elders, they need a lot of love.

So only the family can do that more closely.

I do more of the washing clothes and all that.

Taking care of her room, and she does most of the meals.

(speaking foreign language) (speaking foreign language) (speaking foreign language) (speaking foreign language) (speaking foreign language) A lot of people don't get this way of taking care of their own parents.

So we are glad we can do it.

We get more life value.

(speaking foreign language) (speaking foreign language) - We know there are 53 million unpaid family caregivers in this country.

That's 10 million more than there were in 2015.

A vast majority of those folks are individuals caring for older adults.

We see more family caregivers are experiencing difficulty in coordinating care for loved ones.

About 40% are in high-intensity care situations.

That's measured by the number of hours of care that they provide a week and the number of activities of daily living.

Things like helping to get a loved one in and out of bed, changing them, bathing them, and also complex medical and nursing tasks.

So helping to address colonoscopy care, changing feeding tubes.

It's becoming more complex.

It's becoming more inequitable.

We see that more caregivers of color, particularly women of color, are shouldering the responsibilities of care with worse health and economic outcomes compared to other caregivers.

They're stopping their savings, they're going into debt, letting bills go unpaid.

They're not paying rent, they're not able to afford food.

- Honestly, a lot of it is just logistical challenges.

Because we also work full-time.

She has an MRI at two o'clock.

Who can get her there?

It's becomes those things that sound so little in comparison to what my mother needs, but all of it adds up to this overwhelming, how am I ever going to do this?

- [Justin] So we expect the reliance on unpaid family caregiving only to increase in the coming decades.

So really seeking out community and support from others and not being afraid to talk about caregiving is an important step.

- The expectation that any of us can do that alone isn't fair or kind or realistic.

So that's why I love the support group that JFS has put together, because it creates a sPACE for people to feel less alone.

- It is extremely helpful to be able to sit and talk to someone who is in the throes of it also, at the same time.

To be perfectly honest, it was an opportunity to complain about it.

This is hard.

It's not fun, and there's no happy face to put on it.

Except sometimes you have to.

So in that room, you don't have to do that.

- One of the results of the pandemic was that 39 states introduced new programs and pathways to provide direct financial support to unpaid family caregivers to help assist in the care that they provide.

With the end of American Rescue Plan dollars, we know that of those 39 states, only 20 states will sustain those programs.

So we've seen progress at the federal level and at the state level, but it's been fragmented.

And we haven't seen the whole scale investment in unpaid family caregivers, the extension and strengthening of home and community-based supports.

A national paid family and medical leave policy.

Really looking at and investing in home and community-based supports is really essential to enabling people to age in place and stay within communities.

- So PACE stands for Program of All-Inclusive Care for the Elderly.

And it really is centered on the belief that it's best for older adults and their family members and loved ones for them to be able to age in place in their home and their community whenever possible.

So, PACE programs are able to provide wraparound, highly-coordinated health and wellness services by a team of interdisciplinary medical professionals to ensure that they're able to remain as independent and at their highest level of function possible.

PACE programs are able to significantly reduce preventable hospitalizations, preventable ER visits, and the satisfaction of both PACE beneficiaries, or participants, as we refer to them, and their family members is extremely high.

Again, participants are able to come to the PACE Center as frequently as they need, or is as determined through their plan of care.

PACE participants can receive all primary healthcare, see their physicians, see their nurses, see their physical therapists.

It really gives them an option, other than institutionalized care to age where they would like, with grace and dignity in their homes.

- I care for myself.

And they assist me in caring for myself.

I have a nurse that comes to my home once a week to check on me and to help me with whatever I may need.

I have a social worker who comes once a month and she gives me therapy and advice and helps me if I have any troubles.

Even though I enjoy being home alone, I needed the socialization.

I needed the opportunity to grow and to become a better person.

And this helps me to do that.

We go on field trips, I socialize with my friends.

We do arts and crafts.

We just have a nice time.

There's many reasons to put yourself in this type of environment and come here.

And - - And she's a wonderful woman.

- Oh, Jackie, you're so, - And we're best friends, and I love her to death.

- PACE is fully at risk for all health and wellness services of an individual once they're enrolled in the program.

It's based on your level of income.

States like PACE organizations because it saves them money.

And it also provides a better quality of care.

So PACE KC should be coming online in the fall of 2023 to offer PACE services to older adults who meet the requirements of Kansas City, Missouri for the first time.

We really wanna make sure that we're working with the family caregiver system and with the individuals that already know the baseline and they know what makes their mother or their grandmother tick and they know what makes 'em happy.

Maybe their family caregiver system works until seven o'clock.

So they come to the day center from eight to five, and then we supplement from five to seven with some home care services.

That can be anything from a nurse, providing care on wound care at home, or changing leg wraps, or providing education on oxygen therapy or the physical therapist showing them how to use some of the techniques or the exercises that they use here at the center.

I think that's gonna be a really powerful piece for a lot of family caregivers, is knowing that they have a trusted support system outside of themselves that they can rely on, and they can count on for the care of their loved one.

- Caregiving will always be with us.

We'll always have a need to support family caregivers.

So there's still a long road ahead when it comes to making the policy change that we need to see.

But we are making incremental progress.

And we have really strong momentum to build on moving forward.

- One really important thing is to know that I can't fix it.

You have to have the people who can help you navigate the healthcare system.

'Cause it isn't a thing you fix.

It's a thing that you go through.

And everyone in their way, to whatever degree of severity, or whatever circumstance, will go through it.

And you just go through it and you find the people that can help you.

And you ask them for the help.

- Welcome back to the discussion portion of today's program.

With me around the table, we have Heath Rath, the Executive Director of PACE KC.

Derek Phillips, who's looking after his mother, and Laura Loyacono, Public Policy Consultant specializing on aging.

And Rachel Hiles, former family caregiver, and founder of Sandwiched KC, a support group for family caregivers.

Derek, I'm gonna throw out the first question to you.

I know that you're looking after your mother and that's to be distinguished from caregiving, in what way?

- The biggest reason, or the biggest difference, is that my mother doesn't have any serious medical issues.

She's very independent.

And so I like to give her the space that she needs.

So I don't feel like I'm taking care of her.

I feel like I'm just there, to be around for the things that she might need.

But she's independent enough that she doesn't need anybody taking care of her.

But it's clear that she shouldn't be by herself, so - - Very good.

Then, so what happens when the time comes when she's not able to care for herself as independently as she might now?

Are you having those conversations with her?

And by the way, your mother is how old?

- [Derek] 93.

- 93.

So presumably at some point, there may be a need for additional assistance.

Are you then planning to transition more to a caregiver role?

- It's been a very difficult discussion.

- Okay.

- One that we really have not had.

It's something I don't think she wants to truly approach.

- Heath, I imagine in your work, you're seeing a lot of that.

All these stories are probably not at all uncommon to you.

What is usually the advice that you have for families?

- I think it's really about right sizing the level of support that the individual needs with the services that are available in the community.

And it's about really ensuring that it's an individual-specific preference or care plan.

- Talking about community services that are available being a caregiver, in your experience as a caregiver for your grandmother, that inspired you to create supports for others.

Can you talk a little bit about Sandwiched KC, and how it's impacted families in our area?

- Sure.

Well, we launched Sandwiched KC in 2018.

Was midway through my caregiving mission with my grandma.

And as a millennial, I was having a hard time identifying with the supports that were out there for caregivers.

Lots of the support groups met during the day, or strange times, and just didn't make sense for somebody like me who, at the time, was working a full-time career, and also caring for my grandmother.

So at the end of the day, I was exhausted.

I did not have the energy to get ready, get in the car, drive around town to go meet a room full of strangers I didn't know.

It could be a very taxing experience.

So that's why we launched Sandwiched.

We've been meeting virtually since 2018 before anybody had heard of Zoom.

And I think meeting that way gives caregivers anonymity.

- [D.] Yeah.

- If you will.

And they don't even have to show their face if they don't want to.

They could drop in, they could come every time.

It's flexible, which is what caregivers need.

- You were caring for your grandmother at a time when you had a life of your own and you're trying to, you said that it could be exhausting.

But I'm curious to know what sort of self-care tools or resources or even strategies did you employ so that you could find some balance in your own life?

- That's a great question.

I gotta be honest.

Sometimes I didn't really pay attention to that aspect of my life.

It's really not easy when you're caring for a loved one, especially if you weren't very good at it to begin with.

For me, it meant lining up caregivers that I knew and trusted to be with my grandma when I needed to take a break.

Or finding activities that she could do out in the community, like at church, or the senior center, so that I didn't have to be with her every waking moment.

- Fair enough.

One of our viewers submitted a question of their own through our Curious KC initiative.

And they asked, "Are we prepared in the world of healthcare and affordable housing for the boom of older folks who are choosing to age at home in the coming years?"

And so Laura, I ask you, "Are we ready for what's coming?"

I mean, just the fact that in Kansas City, the number of people 65 and older are set to double between the years 2010 and 2030.

How prepared are we?

- We are not prepared.

- Okay, well, there's an answer, okay.

- We are not prepared.

- [D.] Why not?

- Well, we depend on family caregivers.

It's about a $600 billion industry, unpaid labor, that we provide for aging adults.

Usually the person who provides that care is a woman.

A 49-year-old woman is the statistic.

And it perpetuates a cycle of feminization of poverty, let's say, because women live longer.

Women are usually 70% are likely to be female caregivers.

And so they just do not have the support that they need.

And we don't have the resources that we need, or the policies in place to support what's coming for all of us.

We're all getting older, right?

It's here.

- Is that if you're fortunate enough to live long enough, right?

You're gonna get older.

And so that makes me just really kind of concerned about folks having awareness of, and then access to resources within the community, both for their own individual self-care, but for a person who may be aging in place, with or without a family.

And certainly if you do have a family, they're all incorporated into that.

And so Heath, I'm sure every day, you're faced with the situation as Laura just said, that we don't have the resources.

But PACE is attempting to address some of that.

I'm interested to know how?

- Yeah, so PACE really was founded on the belief that it's best for older adults with a skilled nursing level of care need to age in their community and in their homes, as opposed to being institutionalized.

So many times, that's the answer.

And it's premature.

With additional supports or wraparound services, so many older adults could remain independent in their home for a significant amount longer, if not indefinitely.

And it shouldn't be the standard or the automatic response, that as soon as someone needs some additional care, we move for an institutionalized setting such as assisted living or skilled nursing.

There's other options out there that are home and community-based services that we just really have not invested in.

- Is this a uniquely American problem or an American issue?

I talk to so many of my friends who live in other parts of the world, different cultures.

They would never even consider having their elders live any place or age any place, but home.

Is this something that we are not getting right as a culture and society?

- We haven't made the public policy investment to support people that can take things like family and medical leave act.

So other countries may have arrangements for their parents to be able to go and age either in place, or in a residential facility.

More countries around the world have policies that support me being able to take time off from work to care for not just a child, but for an aging or disabled family member.

And that is something that is constantly being debated, getting caught.

- [D.] Yeah.

- Caught in political and partisan wrangling.

This is something that was proposed last year in the Build Back Better plan that - - [D.] Right.

- The president proposed it was, he was proposing a lot of support for family caregivers, for stipend or support for people to help their families and loved ones age in place.

And it just got caught in politics.

- So I was just gonna say, it really is not only a policy issue, but it's the politics of the issue that are really sort of, it sounds like hindering us from making some significant change and being able to properly fund the resources that you talked about, Heath.

And so how can caregivers and family members create an environment that respects the independence and the, even the autonomy of elderly family members while still ensuring that they're able to be well cared for, that they are safe, as they age in place?

- I think, well, at least part of the answer is observing, listening, if you will, and knowing what your loved one really needs.

What they like, what they enjoy, and what can you do to provide that for them.

Or maybe provide the support system so that they can do those things that they want to do, love to do.

And at the same time, what do you need to do to have their back?

- Can you say more about that?

What does it mean?

Or what do you mean when you say to have their back?

Just in terms of reinforcing the support of the decision to age in place or something else?

- That's definitely part of it.

- Okay.

- Reinforcing the decision.

I also think that a lot of it just has to do with supporting the activities that the loved one likes to do.

Say, "Oh, you like to do this?

Okay, we will do that."

How do I get you to the shopping center?

Or to church?

Or to whatever it is that you like to do.

And I think a lot of it really is just listening.

- What is your answer to that question of how do you create that environment that respects their autonomy and their independence, but also puts in place whatever appropriate systems, tools, protocols, whatever, to ensure their safety and wellbeing as they age in place?

- Certainly, I think Derek's right about a lot of those things.

A lot of it is behind the scenes.

Sometimes I kind of felt like the Wizard of Oz behind, pay no attention to the man behind the curtain!

There were lots of things that I did for my grandma.

Of course, her needs were very different, - [D.] Sure.

- And every situation is unique, like he said.

I think when it comes down to it, like Derek said, is focusing on what they enjoy but not perseverating on what is being lost.

- [D.] Yeah.

- Medical conditions, abilities, but instead focusing on strengths.

When you focus on a person's strengths, then you're able to bridge that gap behind the scenes.

Then also able to open doors to conversations about those gaps with your loved ones.

- What role does community engagement play in enhancing the quality of life for elderly people who wanna remain in their homes?

- Yeah, so great question.

'Cause it's really important to remain socially engaged.

'Cause isolation and loneliness are just as detrimental to someone's health as other risky behaviors.

- Yeah, many would say that accelerates the deterioration of the body and mind.

- Yeah, absolutely.

So just that simple fact of doing things that continue to make sure that you have meaningful experience.

It's not only going through the motions of Bingo, or whatever it may be.

Don't get me wrong, there's lots of fans of Bingo out there, and we will not remove that any time.

- But experience them right.

- No, no.

But it's really about a meaningful experience and meaningful activities.

Because reducing that social isolation is gonna help reduce depression, anxiety, and a whole host of other not psychosocial issues.

- [D.] Yes.

- Actual physical manifestations of that isolation and loneliness.

- What are some of the disparities between the resources available across different demographics and counties just in this area?

And I will add to that question, if you can opine on this a little bit.

What is the singular greatest need for policymakers to really focus their attention on?

- Actually, Heath and I have been doing some work in this area.

Missouri, luckily, has resources available to counties, and senior centers and other providers.

Counties can vote to pass a senior levy, for example.

The problem is here in Kansas City, where we span across three counties, our neighbors to the north, Clay and Platte County, both have senior levies that take a portion of property tax, a very modest portion, and it goes into support programs like Meals on Wheels, minor home repairs, transportation.

And that helps undergird and give a little respite to family members so the person can be independent, get themselves to the doctor, have meals delivered when they need them.

But also supports low-income people that don't have those family members ready to step in.

Unfortunately, we don't have the resources we need, in the highest poverty part of Kansas City, which is Jackson County.

And that's something that we're really looking at what we can do to support.

- A lot of calls we get are from families who don't qualify for those types of programs because of financial criteria.

Perhaps their loved one makes too much money, or has too many assets.

And so I think there's a great need across demographics, as far as that goes.

And I think expanding all of the programs so that anybody who really is eligible for them, that would be a great move forward.

- If there are specific stories, or maybe incidents, or occasions or moments, that highlight the importance of your role as a caregiver and a looker-afterer, as in the case of Derek and his mom.

But how's that experience shaped your perspective of aging and caregiving?

And does it trickle into your head a little bit about, "Okay, what happens when it's my time?"

- Yes, I made a face.

I made a face because one of the statistics that you quoted, Laura, is I'm in that age group.

- Mmm.

- Yeah.

I'm pushing 70, so I know that, "Uh oh, I need to step it up too."

But, and maybe this experience will aid that one.

- [D.] Okay.

- But I'm not at the point where I can even think about that yet.

I have something more immediate to deal with.

So my focus right now is really on the caregiving role, on the caretaking role, on the looking after role.

- [D.] Right.

- I'm more there.

But it is informing.

The fact that I'm gonna need to deal with this myself somehow.

What am I gonna have to put into place to make sure that I'm looked after when it's time for me to be looked after?

One day, this thing isn't gonna work as well.

- [D.] That's right.

Yeah.

- Yeah.

And I'm aware of that.

I'm trying to keep it in shape.

But, yeah, what's gonna happen?

And I don't know the answer to that, I truly don't.

But I think I'm getting some information that may help me answer it when I need to.

- There we go.

And I'm hoping that conversations like these are continuing to happen outside of this context, obviously.

But I feel really privileged to be able to take an opportunity to highlight both the need, but also the resources that are available and the work that's being done to, from a systemic level, be able to support the community as well.

And there's so many families who are finding themselves in that space.

And just one final statistic is that in 2020, 48.9 million people were caregiving for an aging adult.

So that means just about every family or household, in some way or another, at some point in time, is gonna be faced with the same dilemma.

That's where we wrap up today's conversation for this episode of "Flatland in Focus."

You've been hearing from Derek Phillips, Heath Rath with PACE KC.

Policy Consultant, Laura Loyacono, and Rachel Hiles with Sandwiched KC.

Be sure to check out the rest of our reporting on aging@flatlandkc.org.

You can also join us on Instagram at FlatlandKC to join our livestream discussion on aging in place and family caregiving.

I'm D. Rashaan Gilmore, and this has been "Flatland in Focus."

As always, thank you for the pleasure of your time.

- [Narrator] "Flatland in Focus" is brought to you in part through the generous support of AARP, the Health Forward Foundation and RSM.