(subtle music) - [Man] One of the big reasons why we're stuck with the long-term care system we have is a very widespread belief that it can't be any better than it is.

- I wish policymakers would really sit down and talk to families like us, really listen to what we're saying.

We need help.

Well, we need somebody to advocate for us.

- [Narrator] Many seniors who cannot access services, lose a sense of purpose.

- Loneliness brings you down.

It messes with your whole health system, causes stress, anxiety, panic.

- [Kathy] We have to start paying attention to human need and put money in places and in services that address human need, not just throw away certain populations.

- The United States faces a rapidly aging population.

We and our loved ones are living longer on average, yet we're not always living healthier.

60% of older adults have at least two chronic conditions.

Over time, that can increase the need for costly long-term care.

In fact, 70% of us will need long-term care at some point during our lives, yet a majority say they've done little to no planning.

Family caregivers are often left to shoulder a majority of that burden, yet Tennessee ranks 49th for support of family caregivers and 43rd in delivery of long-term care services.

Hi, I'm Kathy Mattea.

And on this edition of "Aging Matters", we're gonna look at the long-term services and supports that exist today while re-imagining the longterm care of tomorrow.

Stay tuned.

- [Announcer] Major funding for "Aging Matters" is provided by the West End Home Foundation, enriching the lives of older adults through grant making, advocacy and community collaboration.

The Jeanette Travis Foundation dedicated to improving the health and wellbeing of the middle Tennessee community.

The HCA Healthcare Foundation on behalf of Tristar Health, Cigna together all the way.

Additional funding provided by Jackson National Life Insurance Company, The Community Foundation of middle Tennessee, and by members of NPT, thank you.

- Okay.

So take out Sunday.

Okay.

Yeah, take out.

As a professional and long-term services and support for decades, I had absolutely underestimated what's required of a family member in a supportive and caregiving role.

Do you wanna go ahead and set up for next week?

I had absolutely no idea of how complex that family caregiving role was and how it impacted an individual's entire life.

- [Narrator] Vicky Harris launched professional career as a nursing home administrator, and prior to becoming a family caregiver, she spent decades working in long-term services and supports, a field that benefits by some explanation.

- [Harris Voiceover] One of the first things that people need to understand that when we talk about long-term services and support, it is not just nursing homes by any means.

There are really three major categories, one is the facility base, which are nursing facilities.

And then we have what we call community-based services, those are your adult daycares, your assisted living facilities.

And then the third is home, which is what everyone is migrating toward these days.

And those are the personal care aides that come in and help with bathing and dressing.

- [Narrator] Despite Harris's vast knowledge of long-term services and supports it wasn't until her own parents began needing care that she realized how few resources are actually available.

- There is a huge deficit around that middle income bracket as far as funding and programs available to meet their needs.

So what we have is people having to shift that burden to their family.

The family taking on that responsibility.

There was a point where I was simply overwhelmed and certainly I had what I considered to be a well sourced library of knowledge on long-term services and support, as well as a network of folks that I could call and ask questions and was very familiar with how the system worked.

But it moved me from being a professional, to being a daughter with the emotions, but still needing to make sure that their needs are being met.

One evening, driving back from Lewisburg, I actually concluded that no one knew how challenged I was and that I was the equivalent of a tree falling in the forest and no one knew.

- [Narrator] Here in the United States, nearly one in five people are unpaid family caregivers, and they're providing 80% of long-term care at home.

That unpaid care comes at a cost.

In 2017, most family caregivers spent an average of $7,000 out of pocket, and that doesn't account for thousands in lost wages from missed work.

- We fail family caregivers because we don't provide enough support that allow them to remain viable in the community as they were and a contributing member of the community because of the time that is associated with the family caregiving role.

And so we see chronic conditions become a problem or exacerbated or new conditions are identified as a result of the stress and the lack of sleep that goes with family caregivers.

- [Narrator] Like Harris, many families are unprepared for the real cost of long-term care.

And some assume that Medicare will pick up the tab, but according to Grace Smith with AgeWell Tennessee, that's largely false.

- There are two things that I think are important to keep in mind as we talk about paying for long-term care.

One is the misperception that Medicare covers long-term care expenses.

It covers some expenses on a limited basis.

For example, nursing home care, for rehab after a fall or hip replacement surgery, limited care for a limited amount of time.

- [Narrator] Well, some Medicare advantage plans are now offering a limited variety of supplemental home and community-based services.

Traditional Medicare does not cover long-term services and supports.

- They're basically three main ways you can cover those costs.

It's private pay, long-term care insurance but only 7% of people 50 and older have long-term care insurance.

And then there are state Medicaid programs, which you basically have to spend down your resources and qualify medically to be covered by Medicaid.

And for the majority of us, we're not going to qualify for Medicaid.

- [Narrator] In Tennessee Medicaid is provided through TennCare, Tennessee's managed Medicaid agency.

For older adults in need of long-term services and supports there's the Choices Program, which covers both nursing facilities and home and community-based services.

But to qualify a person needs to meet both the medical and the financial criteria.

- In Tennessee, it's rather difficult to become eligible for Medicaid services because the bar is pretty high and the income is pretty low.

You have to be eligible for nursing home placement to be eligible for the Choices Program.

And then you have to have a very low income to qualify on the financial side of Medicaid.

And low income is defined as not having more than $2,000 in assets.

- [Narrator] For many, the cost of long-term care can come as a shock.

- It's staggering to see statistics that the average cost to someone needing long-term care is around $266,000.

And at least half of that is gonna be out of pocket cost.

Contrast that to the fact that the majority of families, the average household savings for retirement is $10,000.

People are not retiring with enough money to pay for long-term care and that is a huge issue that's going to drive more people to try to qualify for Medicaid.

- [Narrator] One potential solution has been Tennessee's options for community living program.

- The idea behind options was if we can offer people a basic level of support, such as homemaker services, such as meals delivered to the home, such as transportation, they're gonna be happier, and it's also gonna save the state money.

The problem is that there are more people on a waiting list for the options program than there are being served and state funding for that program has not kept pace with the demand.

- [Narrator] While a majority of Americans over 50 would like to remain in their homes as long as possible, fewer than half believe that will be achievable.

For Harris, the deficits in long-term care have been a sobering reality personally and professionally.

- You know what's been so revealing for me is that it is the middle class, people like my parents who worked hard all their life, didn't sharp, certainly did not waste, who are falling through the cracks.

And then there are individuals like me who are in that role of providing supportive and caregiving services, who are the trees falling through the forest, and guess what our health and wellbeing is being impacted that has a future negative impact as we continue to age.

- [Narrator] It's an issue that hits close to home for Jimmy and Velma Jackson.

At 63, Mr. Jackson hadn't foreseen a future where he'd need long-term services and support so early.

And he and his wife were unprepared to meet the challenges ahead.

- I had a heart attack last year.

It kind of very difficult for me to do anything because I get out of breath real easy.

I walk with a cane now because I fell about three times without the cane, you know, coming up the steps, in the bathroom, or here on the floor.

- When he came home he needed lots of help.

And so I had to transition quickly and learning how to help him.

My husband is six five, over 200 pounds, and I'm a little bit lady (laughs) So I had to figure out the logistics of that.

He could hardly walk.

His legs were so weak and he couldn't hardly walk.

And so I had to help him to the restroom.

I had to help him to take a shower, get dressed, of course, I had to fix all of the meals he just wasn't mobile for a long time.

Trying to work I work at home, and so trying to work and then navigate his needs at the same time, it became very challenging for me.

I did the best that I could, try to get resources to help have someone to maybe come in, like home health to come in and kind of help him and do tasks with him.

- [Narrator] Unfortunately for the Jackson's help was just out of reach.

- And we applied for a couple of programs and we were always denied because we were just a little bit over the income, or they didn't have funding.

I mean, there was always, you know, something where we couldn't get the in home assistance that we needed.

Definitely the country.

- Yeah.

- And you won't be able to use your phone.

- Paying for home health care nurses was not an option for us.

It's very expensive and we just could not afford that.

I don't know who can, but we couldn't afford that.

- [Narrator] In Tennessee the average cost for a home health aid is $21 per hour, on a full-time basis that's more than $4,000 a month, compared to nursing homes which average more than $7,000 a month, it's a bargain.

But it's still unreachable for the vast majority of families.

So for now, the Jackson's are on their own a scenario that's all too common according to Vanderbilt, social worker, Pam MacArthur.

- What I wish for when I send somebody away from my office is, I wish that I could give them my card and a list of resources that I know that they could access.

I know that they would be approved for meals on wheels within a week.

I know that they can get help with their housekeeping.

I wish that I would know for a fact that these vulnerable individuals that still have life in them, that they would leave my office knowing that they would receive what they need.

That's not the case.

I can give them the resources, but I pretty much know it's gonna be a waiting list.

- (indistinct) about it, a disabled and had this same issue that we have.

And I'm not gonna lead them out because we are part of society too you know, we need help.

- [Narrator] Well, many home and community-based services are unaffordable for lower income older adults, adult day services at Fifty Forward attempt to fill that affordability gap by offering a sliding scale fee as well as grant funding for those who qualify.

For folks like Bonnie Peter's adult day services became a lifeline to better physical and emotional health.

- Well, that's part of the reason I started going to Fifty Forward was to get out and socialize with other people because I was confining myself just to me and Gizmo.

- [Narrator] Gizmo was Peter's emotional support dog after he passed the isolation began taking a toll limited human contact during the pandemic has only made things more difficult.

- Loneliness plays a big part in it.

It brings you down.

It messes with your whole health system, you know, causes stress, anxiety, panic, and all of that.

When you get around other people, because you're so used to just withdrawing into yourself.

- We got a little free time.

- Really we empower the older adults to get from the day what they would like to get from it, according to their functional level.

So after a morning meeting, we go into an activity like you saw today.

So it might be an arts and crafts activity, it might be trivia, it might be a physical exercise activity.

It might be just a fun game.

Then we have a nice nutritious lunch.

And that's very important.

We recognize the importance of nutrition as people age so that is built into our program as well.

- It's very hard to control my diabetes here at home.

Part of that is because again of the food, I can get the food I can afford.

It's not always the best thing for me to be eating.

Getting meals at Fifty Forward helps because I'm not stressing on where I'm gonna get my meals from.

They give nutritious meals.

- We really do think of adult day as a community-based service that is an alternative to in-home care or to residential institutional settings.

Our program compared to in-home care might be a third of the cost, less than that.

And the benefits of interacting with so many different people as opposed to one in-home caregiver are really great.

- [Narrator] For older adults in need of long-term care, a combination of home and community-based services offers a customized and affordable alternative to nursing homes.

And the desire for alternatives to institutionalized care has become even more acute during the COVID-19 pandemic.

- COVID really did show us where the pieces of our system that are fractured within long-term care.

You have the overstressed over the stretch then nursing assistant and nurse, and now providing care for older adults who have COVID.

And there are various studies that show how COVID entered these facilities and it's typically through a worker, a caregiver that is there in the facility, and it's really hard to contain COVID in these long-term care facilities.

- [Narrator] By May of 2020, 42% of all COVID deaths had taken place among 0.6% of the population, that tiny fraction being those who lived in nursing homes and assisted living facilities.

Today, vaccines have gone a long way toward protecting both residents and workers, but the shortage of paid caregivers is only growing worse thanks in no small part to the pandemic.

- [Jennifer] We do see a lot of turnover in longterm care of nurses and nursing assistants.

The last statistic that I saw said that nursing assistants have a 70% annual turnover rate.

We know that nursing assistants provide almost all of the care in long-term care facilities.

It's a physically demanding job.

It's emotionally demanding as well.

They're taking care of residents, and they're also really there for families.

We also know that they are the lowest paid professional they're in a long-term care facility.

People that might think about working in long-term care can make more money going to work for Amazon or Starbucks or Target.

(subtle music) We cannot meet the need and provide long-term care without the workers providing that care.

And this very much is a women's issue because the majority of those direct care workers are women and they're often persons of color.

So we have to recognize that this is also about pay equality and valuing women, and valuing people of color who were in the workforce.

- [Narrator] While the need to pay professional caregivers a fair and competitive wage is crucial to re-imagining long-term services and supports, the effort is often hindered by a lack of funding.

- What we do know is that oftentimes we lose some nurses and nursing assistants in long-term care facilities to other institutions that can provide higher pay and more benefits.

So I would definitely want to increase their pay as well as their benefits.

I also would want to be able or have the freedom to introduce different innovative styles of care, such as the Eden concept.

It's such a different paradigm of care where facilities look more like gardens and they don't look like hospitals.

They look like home.

- [Narrator] Just outside the City of Ithaca New York, Dr. Bill Thomas is hard at work.

He and his wife Jude, co-founded the Eden alternative back in the early 1990s.

And while he's still in the business of re-imagining long-term care, his work in geriatrics has moved from a traditional doctor's office to a less conventional laboratory.

- Today we're sitting in a place called, Make Peace Studio.

In this research lab, we're trying to make housing that fits elders.

The house you live in is powerful medicine and it can do great things for you, and it can do great harm to you.

So living in a house that's actually designed to fit you is some of the best most powerful medicine we have.

- [Narrator] It's a concept that fueled some of his earliest innovations, like the Eden Alternative, but a singular approach wasn't enough.

- Around the turn of the century, my wife, Jude and I were getting frustrated that the work we were doing to transform nursing homes was not going as fast as we wanted.

So we started work on designing a new approach to long-term care, literally from the ground up.

Different concept of the building, of the staff, of the elders, change everything.

And that concept really became something called the green house, which is a house where about 10 elders live together.

They have a kitchen and a big wooden table where they share meals.

Everybody has a private room.

And it's on a street.

And people get to live a life with a lot more privacy, a lot more independence and more dignity.

- [Narrator] Ave Maria in Memphis, Tennessee has nine greenhouse homes designed to look and feel like a real home.

The goal is to provide older adults or elders as they're referred to in the greenhouse ecosystem, a meaningful and connected existence.

- Mr. Jerome, what about you?

- We'll always have it to house.

- [Narrator] For 97 year old Jerome Selvaggio having his own space and a caring staff, are top priorities and the things he values most about the greenhouse.

- I like my own room and then I can do what I want to, and then, and I don't have to worry about nobody not liking what I do or what they do and things like that.

And I feel like I've got a lot of privacy that way.

It's real nice here.

And I like all of the staff and they are all nice to me.

I don't have no problems.

- [Narrator] Today there are more than 350 greenhouse homes in 32 states.

- It's a better way of delivering that kind of care that we used to think of as nursing home care.

However, if you look at the numbers after now, almost 20 years, a very, very, very small number of people in America have an opportunity to live in a greenhouse.

And here's the thing, research on this subject has shown that it costs about the same to operate a greenhouse as it does a nursing home, roughly equivalent, but to build a greenhouse costs 10% more, and why does it cost more?

Everybody gets a private room and that's not true in nursing homes.

So when builders look at this and they say, I can save 10% building the building, and people have to share a room, that's the price, they opt for the cheaper construction even though the operating costs are about the same.

- [Narrator] The full extent of that tragedy however, is now backed up by data.

- We recently had a test of the greenhouse model related to the COVID pandemic.

And here's what we found, when researchers looked at the number of illnesses and deaths among elders living in a little house with a regular staff and a private room, what they found is that rate of illness and death was highly statistically significantly less in the greenhouse compared to the conventional nursing homes.

And I have to tell you, if you do the math, if America had spent the last 20 years building greenhouses, it would have saved 100,000 lives.

That was the price of not acting, and it was elders who paid the price.

- [Narrator] When all is said and done, Dr. Thomas believes the key to improving long-term care is about more than any one approach.

What matters most is the welfare of older adults and that means taking into account what they want.

- Actually, it's no secret what people want.

The research is really clear, they want privacy.

They wanna call their own shots and they want to be treated with dignity.

And that's not a super high bar, but these are things people really want.

And we have to start creating a longterm care system as if elders matter, as if they were fully human beings with intense and important needs that can't just be filled with a prescription.

- As we and our loved ones age we'll have to make some critical choices about long-term care, but in order to do that we'll need to improved access to long-term services and supports, financial help for the middle-class, increased pay and benefits for caregivers, and a way to better leverage available resources.

Going forward it's all together clear that now is the time to re-imagine long-term care.

You can watch the entire Aging Matters Series at our website, wnpt.org/agingmatters.

(subtle music) - [Announcer] Major funding for Aging Matters is provided by the West End Home Foundation, enriching the lives of older adults through grant making advocacy and community collaboration.

The Jeanette Travis Foundation dedicated to improving the health and wellbeing of the middle Tennessee community.

The HCA healthcare Foundation on behalf of Tristar Health, Cigna together all the way.

Additional funding provided by Jackson National Life Insurance Company, the community foundation of middle Tennessee and by members of NPT.

Thank you.