Why Supporting Caregivers Could Make a Difference in Dementia Care

Note: This transcript has been created with a combination of machine ears and human eyes. There may be small differences between this document and the audio version, which is one of many reasons we encourage you to listen to the episode above!

Dan Gorenstein: Learning you have dementia is devastating and scary – both for the patients and for the family or friends who become caregivers.

Spouses or adult children have to grapple with managing a loved one’s money, medications, hygiene, taking over their lives, keeping them safe.

Rosanne Corcoran: I absolutely adored my mother. I would have carried her on my back if I had to. And it was still the hardest thing I’ve ever done.

DG: For the first time ever, Medicare is acknowledging the heavy burden that falls on the more than 11 million caregivers by funding services to support them. 

Today the bet that caring for caregivers will also help the patients and slow down spending. 

From the studio at the Leonard Davis Institute at the University of Pennsylvania, I’m Dan Gorenstein, this is Tradeoffs.

*****

DG: Rosanne Corcoran’s mom, Rose, worked as a hair stylist and also ballroom-danced every weekend into her 80s. 

RC: So she would work three days a week, and then she would dance Friday night, Saturday and Sunday.

DG: Rose was charming and social. 

But as the dementia got worse, Rosanne says her mother struggled to remember to eat dinner, pay her bills and take her blood pressure medicine. Standing all day at the salon got too hard. She retired. She stopped dancing.  

Rosanne, 47 at the time, decided her mom needed to move in with her after she had fainted in the summer of 2015. 

RC: To scoop her up and bring her back to my house and say,”Mom, you can’t go home again” is heartbreaking because I’m taking something away from her. I’m not. The disease is, but it sure does feel like I am.

DG: Rosanne’s husband traveled a lot for work, and her siblings were unable to help much. 

So Rosanne quit her job as a real estate agent and became her mom’s full time caregiver. That meant getting her to the doctor; helping her bathe and dress. All on top of raising two kids. Every day, fresh chaos. 

RC: It’s the complete and utter, overwhelming feeling of never being on top of it, of never knowing enough and not thinking that you know enough.

DG: Rose would go days without sleep – that’s common with dementia – which meant Rosanne was up all night, too. 

In November 2020, after four sleepless nights, mother and daughter were both spent.  

Every half hour, Rose was calling out ‘I want to go home.’ Rosanne tried to distract her. Didn’t work. She told her mom that she was safe. Didn’t work. Afraid her mom would bolt for the door. Rosanne, desperate, called an Alzheimer’s helpline at 2 am. 

DG: The call taker repeated all the tips Rosanne had just tried. Validating her mom’s feelings, distracting her. Pat advice that made Rosanne feel that much more isolated.

RC: After I was put on hold. It was almost like they were reading off the sheet of what to do when someone asked to go home. It’s not helpful.   

DG: Rosanne is just one of 11 million family and friends who provide the vast majority of hands-on care for the nearly 7 million Americans living with Alzheimer’s disease and other dementias. 

All that unpaid work totals 18 billion hours a year according to the Alzheimer’s Association.  And yet even with all that, people with dementia still cost Medicare almost three times as much as other patients. 

They’re more likely than others their age to end up in the hospital after taking the wrong medicine, refusing to eat, wandering into traffic or falling at night.

RC: I can tell you every caregiver is drowning for more help. They just. They need more help. They need more support. 

DG: For Rosanne, the moment has passed. She struggled with caring for her mom for six years in her home, until Rose’s death in 2021 at age 92. 

But for other Americans– at least some relief is finally on the way. This summer, Medicare is launching an 8-year pilot study with a groundbreaking plan. 

The government will pay for programs that support the caregivers of people living with dementia – caregivers like Rosanne. 

Liz Fowler: It is a big f’ing deal, frankly.

DG: Liz Fowler directs the Center for Medicare and Medicaid Innovation which is leading this project. It’s called Guiding an Improved Dementia Experience – or GUIDE.

Medicare is placing a bet that investing in caregivers like Rosanne will pay off by helping keep patients with dementia healthier and happier without exhausting them emotionally and financially. 

LF: It has the potential to improve the quality of life for those living with dementia and alleviate the significant strain on their loved ones, while helping people remain in their communities. We’ve never tried anything like this before.

DG: Here’s how the program will work. Each family member will get a care coordinator – sort of a coach – who is trained in dementia care, they know the patient and the caregiver and can troubleshoot. 

Exactly the kind of person Rosanne wishes she could have called at 2 am that terrible night back in the fall of 2020. And the coach or other member of the care team will be available, 24/7. Coaches will also help with doctors visits and help identify some adult day care or in-home aides.  

Liz says Medicare will cover $2,500 dollars a year of those day care costs for patients with moderate or severe dementia – enough to pay for a few hours a week. 

LF: It is really addressing this critical role that caregivers play in the lives and outcomes for people living with dementia.

DG: This is the first time Medicare has paid for a whole package of support specifically aimed at caregivers.

The program is based on the success of programs up and running at a handful of hospitals. UCLA, UC-San Francisco, Emory and Johns Hopkins –  have all been experimenting with something like this for years, with promising results.

Malaz Boustani: The magic comes from the care coordinator who works with the patient outside the office. 

DG: That’s Dr. Malaz Boustani, a geriatrician at Indiana University. He helped pioneer this approach in the early 2000s. 

MB: The care coordinators work with them in the home, in the community, with the caregiver.

DG: Each study was a little different, but overall the evidence found that patients in these programs had fewer emergency room visits, fewer symptoms of dementia and were able to continue living at home longer. 

And for the caregivers they reported lower levels of stress. After the break, what it’s like to be enrolled in one of these programs and why they seem to be working so well.

MIDROLL 

DG: Welcome back. 

Before the break we heard about Medicare’s big bet that helping caregivers will pay off. Tradeoffs reporter producer Alex Olgin has been talking to physicians and care coordinators at these university-based programs. So Alex, what’s the secret sauce? 

How are these programs lowering caregiver stress, improving patients’ lives and keeping them at home? 

Alex Olgin: So Dan, as we just heard a few minutes ago the doctor at the Indiana hospital – Malaz – called the care coordinators the “magic” of the model. 

And that’s really stuck with me. They are specially trained in how to care for dementia patients. 

They spend lots of time getting to know the caregivers and the situation. Over the phone or in person. Basically they are building trust. They’re really in the trenches with these folks.

DG: It sounds like a caregiver for the caregiver. And how is this actually helping patients with a progressive brain disease? 

AO: Malaz explained it to me this way. Regardless of the program, patients with dementia are on a long, slow mental decline.  

What the program does do is help manage other symptoms that come along with dementia – like agitation, depression, sleep disturbances. 

If you can ease those symptoms, you’re improving the quality of life for the patient and you’re probably making the caregiver’s life a lot better too. 

DG: That makes sense. My grandmother had Alzheimer’s and it was really hard for her and our whole family. Brutal, actually. So what exactly are the care coordinators doing?

AO: It’s a real mix of things. I talked to Lauren Sullivan who does this job at Eskenazi Health – that’s the hospital in Indianapolis where Malaz pioneered this approach to dementia care. She walked me through a few standard ways she helps the families.  

First, she says she’s almost introducing the person with dementia to the caregiver.  

Lauren Sullivan: The hardest thing, I think, for a lot of people that have a loved one with dementia is they see the changes in that person, and they’re not the same person that they knew and loved. And that’s the hardest thing. In the beginning, that’s kind of what we’re working through…that grieving process, coming to terms with what is now, and how to deal with that person.

AO: Second, Lauren likes to teach caregivers how to talk to their loved one. She helps them come up with activities to keep patients engaged like puzzles or games. 

For a patient who was a bit obsessive, for example, she suggested the caregiver get them to try paint-by-numbers. It worked. 

And then third, she’s like a health care system navigator. She helps caregivers figure out if patients need to go to the hospital or maybe their primary care doctor. She goes with them to regular appointments at the clinic and helps them manage medications. 

DG: Alex, what you’re describing is clearly hand-holding practical support for caregivers and patients. I can see why studies found this lowered caregiver stress. 

AO: Yeah, you know here’s a story that puts a fine point on that, Dan. 

Lauren introduced me to one of the caregivers she works with, a woman named Cindi Hart. Cindi cares for her 80-year-old mom, who has dementia, and is also a retired nurse, and was really reluctant to give up control over her own medicine. 

One day Cindi heads over to her mom’s and sees pills scattered all over the floor.

Cindi Hart: She is walking through her apartment with the pills falling out of her hands. And I’m looking, seeing the pills all over the place. And she’s like, oh, no, I take them, I take them. I was a nurse. I know what I’m doing.

AO: Cindi tried to appeal to her mom’s sense of reason. That didn’t work. 

CH: She was uncharacteristically belligerent and irate, to the point where she was screaming and her eyes were bulging.

AO: The arguing was going nowhere. After Cindi left her mom’s place she called Lauren. Lauren said, “Stop trying to reason with her. ”

As hard as it was, Cindi’s mom was losing her own ability to problem-solve and organize herself, even though she’d prided herself on those two qualities.

Cindi says understanding that was a breakthrough for her.   

CH: In my heart I thought that my mother still had the ability to be logical, that she still was logical, and then I could deal with her logically. And, um, it was a huge step that the program helped me understand that her logic has gone bye bye.

DG: And how are the two doing now? 

AO: Cindi no longer argues. She set up a new system.  

AO: With Lauren’s help, Cindi created a set of alarms and automatic pill dispensers to keep her mom on her medication regimen, while still letting her take the pills on her own. Preserving some of her independence.

It worked for years.

Recently her mom moved from her own apartment to a nearby assisted living facility. And a nurse comes by, to  help her take her meds. Cindi visits her mom several times a week and they go on walks. Lauren’s been there for Cindi at every turn. 

CH: Essentially she was teaching me how to swim, how to tread water, how not to to gulp in the water of my mother’s illness, um, and drown

AO: Cindi attributes her ability to keep her mom out of a nursing home to the help from Lauren and the Eskenazi program. 

DG: And that’s a key goal of this new federal program from Medicare, right? Keep patients in their homes and out of nursing homes. 

AO: That is one of the ways Medicare will be measuring if this approach is working. 

When you consider all the money the government is spending on dementia care, this year it’s going to be $231 billion. That includes hospital visits, drugs and nursing homes. 

Medicaid pays for most of the nursing home costs. And that care is so expensive, Dan, that the program actually spends 22 times as much on dementia patients as it spends on other patients. 

DG: Oh, so that’s why the GUIDE program, which aims to keep patients out of nursing homes could save taxpayers money. 

AO: Right, we don’t have a specific number for how much this pilot could save. 

But at scale, Dan, one estimate suggests a program like this could save as much $21 billion over the next decade. 

DG: OK. That’s real money. So again, there are nearly 7 million dementia patients. How many will get access to Medicare’s pilot program that starts in July?

AO: Not that many at this point. First of all, the patient has to be eligible. Which means they have a formal dementia diagnosis. They also need to have traditional Medicare insurance – that’s only about half of people over 65. Seniors on a Medicare Advantage plan aren’t eligible.  

Also, the patient has to be living in their own home, in a family member’s home, or – like Cindi’s mom – in an assisted care facility. But bottom line they cannot be living in a nursing home. 

And lastly, even if they meet all those criteria, they have to live near one of the Medicare-approved programs. Medicare expects to announce those locations sometime this summer 

DG: And while this seems like a small experiment, it’s a big deal that Medicare is taking this step. I mean, lots of people in health care tend to follow Medicare’s lead. 

AO: Yeah, that’s exactly right. Medicare’s Liz Fowler told me their pilot project is getting other hospitals excited.  

LF: Where goes Medicare, goes the rest of the country. And we’re already hearing from providers who aren’t in the model saying or who weren’t accepted into the model saying, ‘Well we’re going to be looking at implementing some of these new policies anyway.’ Um, that’s great news because it means an expansion of this approach to care. 

AO: Medicare will be analyzing the results over the next 8 years Dan – that’s 2032. And they’re looking for three things:  reducing caregiver stress, improving the quality of the patient’s life and keeping people out of nursing homes. 

DG: And Alex, what about saving money? We talked about how this could – in theory – save Medicare and Medicaid billions of dollars over the next decade. Will that be how Medicare decides if this whole thing is working? 

AO: Well, so, Liz Fowler said the statute defines success as improving quality without increasing costs. 

DG: In other words, they don’t have to necessarily save money but want to make sure they’re not spending more.  

AO: Exactly 

DG: Thanks for your reporting on this Alex 

AO: You’re welcome Dan. 

DG: One thing we know for sure: Caregivers like Rosanne are excited to finally get some recognition and support. 

RC: I hope it becomes the biggest program in the country because I know it’ll help caregivers. Every one of them would benefit from it. Every one of them.

DG: Since her mom died three years ago, Rosanne’s worked with caregiver support groups and started a podcast on how to help them help their loved one through dementia. 

She says while the Medicare program is limited, it’s more support than she had –  or that millions of other caregivers have right now. 

I’m Dan Gorenstein. This is Tradeoffs.