What the "second patient" needs: Katie Brandt on caregiving, Alzheimer's, and what founders need to know

I am so pleased to have Katie Brandt back. She originally spoke to our community back August of 2024, so almost two years ago, which is hard to believe. She has participated in a number of our Alzheimer's Moonshot Showcases, providing feedback to the presenters, so I'm sure a number of you have seen her on some of our sessions. Katie is open and warm and batteries included, and a really great asset to founders.

I think no one really knows the caregiver journey quite like you. I think you've been from every step, from diagnosis through loss, and you're kind of in the middle of another care journey again. Katie lost her husband to FTD in, I believe, 2012. Yeah.

And then her father, who's a veteran, is now late-stage Alzheimer's. And so Katie is taking kind of that work, and for the past number of years has been in charge of caregiver support at Mass General's FTD unit. So a mix of personal and professional, kind of being focused around caregiving and Alzheimer's and related dementia research. So Katie, I would love to pass it over to you.

Everything that Jen said is correct. She has a steel trap memory. And so today I am the director of caregiver support services and public relations for the Massachusetts General Hospital Frontotemporal Disorders Unit. So we care for patients that have young onset and atypical forms of dementia.

So when you hear about people talk about funding for Alzheimer's and related dementias, our director, Dr. Brad Dickerson, is a globally known neuroscientist, really a lot of focaging- focus on around imaging. And I think what's interesting about my experience is I get to work in a clinic where I support people from diagnosis all the way through passing. Just this morning I helped two families coordinate brain donation for their loved ones.

And I get to work in the community. So after I had those brain donation phone calls, I then went to a local outdoor museum, the deCordova, where we led a community event for people living with posterior cortical atrophy, which is a rare form of Alzheimer's that affects your vision. And at the beginning of the visit, I was talking with one of the patients who told me she was a nurse in her past life, and today no one would hire her because of her condition. And she said, "I've tried to do everything right in my life, and now I keep wondering if I've done something wrong."

And she started to cry. Her husband came over, and we were there with about 30 caregivers and partners together. I'm a fundraiser for the unit, and I run the largest FTD caregiver support group in the country. We meet every Tuesday for an hour on Zoom.

I've worked with hundreds of families through many different stages, and my personal experience is as a totally unprepared young onset caregiver at the age of 29 for my husband, who was diagnosed with behavioral variant FTD. And we- two-thirds of our family caregivers in the United States are women, and oftentimes you're gonna hear statistics that say unpaid family caregivers. And what we need to remember is that those family caregivers are unpaid, but care is not free. It comes with a cost.

It comes with an actual physical, emotional, and financial cost to the family caregiver. Family caregivers are more likely to be sick, have chronic health conditions, substance abuse, and even higher rates of mortality. They are more likely to turn down promotions, reduce hours at work, and leave the workforce entirely. Women who are family caregivers are significantly more likely to live in poverty, and that's what happened to me.

And then I have been an Alzheimer's caregiver for my dad, who is a veteran, for the past 18 years. And so I've navigated care through the VA, adult day health programs, Medicaid, Medicare, memory care, assisted living, private pay. I've spent over a million dollars out of pocket on my dad's care, and hospice multiple times. So I challenge you to ask me a question that has not been asked of me before, and I wanna thank you for being a part of this community, because our families really need you.

So thank you for that. Thanks for that intro, Katie. And actually, my first question hits really onto the point where you talk about how often caregivers are really the second patient, and the different health and physical and mental side effects that happen for caring with a loved one. So if you could expand a little bit.

I know you've touched on some of the things about women and poverty, worse health conditions. But both from your work at Mass General and then also having been a caregiver yourself now for what? Close to over 20 years at this point? Yeah, 18 years.

Yep. What, what do you think the healthcare system gets wrong? What do you think is good advice for founders? Love to hear a little bit of your thoughts and expand a little more on that whole second patient piece around caregivers.

Yeah. So I just presented at the Harvard Medical School dementia course last week. So this is where I get to speak to hundreds of mostly neurologists from local communities, they're not from specialty clinics, and primary care physicians, some social workers, where I talk with them about imagine that you give this diagnosis and now you have two patients in front of you. But one of the patients, you don't get to see their chart, you don't get to make any notes, you don't get to bill the health insurance company for any of your time with them.

And so you don't know anything about the family caregiver who is in charge of the health and wellbeing of your patient. So as a clinician, this family caregiver is incredibly important, and their health and wellbeing is incredibly important. So I've talked a lot with physicians and other healthcare professionals about what role can you play in writing prescriptions for family members? And they're like, "What does that mean?"

And- I start with talking about that family caregivers should have their own mental health provider. So talking with those family caregivers about can we get you connected with a social worker? Do you have a mental health provider yourself? And when people say, "I don't have time for that," that should be a red flag that they also need respite.

So really thinking about what does respite mean? Bill, I have to tell you, I talked about Zinnia in one of our lab meetings at MGH. People were very interested, because Zinnia could be respite so that someone could take a shower, right? People need to do things even when they're at home.

We have caregivers who are not eating well. I had this one caregiver, she was able to get Meals on Wheels for her husband with dementia, but they didn't bring a meal for her, and she said to me, "It's so great. I just eat one of those protein bars at night, and now I don't have to cook or do the dishes." And the thought of this caregiver just shoveling down a protein bar instead of sitting down and eating a balanced meal, it just really made me think about what support are, and the vulnerabilities of our family caregivers.

Let's talk a little bit, so it's been almost two years since you joined us officially for an expert AMA, and love to hear what progress have you seen? Obviously, you've heard about the different drugs that have been approved in Alzheimer's, but what are... It can be a sad space to be in, so let's think about what are some of the, a couple of the advancements or things that the group should be optimistic about? Okay.

Yes. This is really exciting, actually. Last year, I was at the Massachusetts Alzheimer's Advocacy Day at the Mass State House, and Dr. Dan Press talked about what do the current, the new drugs, the monoclonal antibodies, what does that mean?

And he said, "Right now, imagine that you're in a car going 40 miles an hour. These drugs can slow it down to 30 miles an hour." And you could feel the room feel a little bit low. But he said, "But remember, for decades we've been driving a car that didn't even have a brake pedal in it."

Now, especially with the FDA approval of blood tests, more than ever before, I've started to have conversations with people around, "Oh, I'm starting to be worried about my mom, but I don't really think that she has memory loss, and we don't wanna talk about Alzheimer's." And I've been giving people scripts to say at the primary care, "Oh, I've heard that there's new medications for people in early stage. What can we do together to monitor my brain health so that if this drug is right for me, I could get it early?"

So I think the new blood test, there's work to be done there, but it opens the doorway for conversations. Treatment gives people hope so they're not as afraid to become connected, and I think it also emboldens me to try to have these care conversations at a much earlier stage with families. It's been, let's see, we're 19 minutes in, and we have yet to say the phrase AI, so I would be remiss if we didn't talk about AI. And there's a wave of tools that are marketed to families and caregivers, apps and companion robots and care coordination platforms.

You talk to caregivers every day. What do they find is most helpful? Where do you think some of the gaps are, and then any ways that you see AI being additive versus it just being a buzzword? I think I have two, uh, uh, it's important stories about that.

So one support group showed up, and one of our husband caregivers said, "I wanted to talk tonight about how AI has been helping me with caregiving." And he shared a story about how his wife woke up wet again, and so he went to ChatGPT and explained what happened, and ChatGPT suggested products and the steps to take, and he implemented, and then he reported that his wife has been dry at night. Now, we have had experience where a husband will show up at group, and I say husband because these were the actual things that happened, but I think also the men in the group are uniquely practical, and they really love having, "I use this product, I do this formulation, I have this schedule," and they wanna share it with others, and i- it creates this opportunity for bonding.

So we had a family caregiver who did that just by a lot of bouncing ideas back and forth. The caregiver said, "I liked being able to go to ChatGPT because I just felt all alone, so I felt like I could..." And we said, "You also could have called the Alzheimer's Association. The 1-800 number is available at 2:00 AM."

And he said, "I didn't think of that." And I thought that was interesting 'cause we mention it all the time. So then last week we were talking about our newsletter, our podcast, all the resources, and one of the caregivers piped up and she said, "I know you have all these wonderful resources, but I just, I can't even open the emails you send me. I'm so overwhelmed."

She said, "I love just showing up here at support group 'cause I can ask my one specific question. I trust you guys to give me an answer, and then I go try it." So I guess I would say, as you're thinking about caregivers, and especially if you have an app or new technology, I really notice it's not uniform across the board that, like, caregivers all have the ability to easily integrate technology. I- it's varied.

Now, of course, I also work with younger caregivers, so I get to see both elderly and young. And of course, I do notice that the young folks are more looking for the app, and the older caregivers are like, "I don't wanna take out my phone. I want you to just tell me what to do." So I don't know how to reconcile that, but I will say our caregivers are just, they're just drowning oftentimes, and so it's hard for them to learn something new.

That's a good segue, Christopher Ju. I believe you've met Katie, but just reintroduce yourself to the group and, uh, ask your question. Katie, thanks for being here. Really appreciate your time.

I'm Christopher Ju. I'm co-founder of Caregivers Insight. We have created a mobile platform that allows caregivers to answer diagnose-based questions that can be personalized, whole-person questions. In your experience, your lived experience, and current experience, what are the most important caregiver observations that care teams tend to miss, and how could those observations be better integrated into person-centered care planning?

Let me just back up and say that a caregiver who comes in without documentation is not a reliable reporter. So if a caregiver comes in with a notepad or a digital note, like they've been keeping track, we can trust. Like, we ask them to take contemporaneous notes, like September 9th, woke up three times. It's, we need some data, because I've seen this happen over and over again.

If the clinician just asks the caregiver, "How has your loved one been sleeping?" They're gonna get like a blanket statement, but it's not granular, so you can't identify, like, trends. We're not able to match it with, like, how did they hydrate that day? What did they eat?

What was their exercise level? We're not able to make any real overlaps. Our clinicians have a short amount of time. So what work I've been doing lately, and I hope this answers your question, Christopher, is when I know a caregiver is gonna have 15 or 20 minutes with a neurologist, I coach them before the visit to write up a summary of what they're concerned about, and to print it out and hand it to the nurse or whoever checks them in, so then the physician can scan it.

Because what tends to happen is the clinician says, "How have things been going?" And the caregiver gets to about here i- in their verbal output of how things have been going, and they usually save the toughest and most embarrassing things for the end, because they need a warm-up. So they get seven minutes in to stuff that's not even really the thick of it, and the clinician now is like, "Okay, I've got 11 minutes left. I gotta do a neuro exam.

I gotta write the note. Do I need to update their prescriptions?" And so what I notice is that, like, things get missed. So I think when Christopher was talking to me, we were able to meet, and when he shared more about what that app can do, I thought, oh, Dr.

Dickerson would love this if somebody came in with trends. So what I think clinicians miss is this idea that it's, like, complex. So it's trying to train the caregivers at how they can be good reporters, and we have to really acknowledge privilege in this space. Because if English is not your first language, if your education level is lower, if you don't have access to caregiver coaching, it's harder to learn that skill.

Thanks, Christopher. And I guess, too, to your point around if it's a verbal question, they're gonna think of maybe the most recent. Mithul, let's go over to you, if you can ask your question. I know I caught you mid-bite, but introduce yourself and ask your question.

Yes, thank you. Sorry, I haven't had a chance to eat all day. Nice to meet you, Katie. I'm Mithul Desai.

I'm CEO and co-founder of The Care Hack. We have a digital platform that provides evidence-based tools and training to what we call cognitive caregivers, so caregivers of loved ones with behavioral and cognitive disabilities. So my question for you is, one of my many dreams in supporting caregivers is in-person support, right? Sending some form of support to the home, which we don't do yet, but if we did do that, where do you think would be the best place to focus for that in-home support for caregivers?

I think it depends. I think it depends, period. Yeah. Because we need to acknowledge that the care recipient, they have different levels- Sure...

of needs, and then we have to acknowledge that the caregiver has different cultural, societal, right, like how comfortable do people feel? So recently, I had two caregivers in support group, both in the guide program. One of them is thrilled because he was assigned a social worker who knew about FTD, and then got paired with an in-home support person who's just really intuitive and go with the flow, and their wife just adores this caregiver. So they're able to leave the house and come back, and the mood is chill.

Yeah. The second person, their social worker never heard of FTD. The giver- Yeah... that was assigned does not speak English, does not speak the same language as the patient.

So the caregiver felt, "I don't know if it's safe to leave the house." Yeah. "Because what if my loved one tries to leave? What if they need to call 911?"

They didn't even- Yes... trust. So we have to think about, what are all the needs? And I think what caregivers need the most is space, a way to have a break, like the refuel.

Yeah. Mm-hmm. And so for some, it's going to that mental health appointment. For others, it's, like, exercise.

For others, it's, like, the ability to take a walk and talk with a friend. Yeah. So I think it's that the healthcare provider has to be competent. Bill, over to you.

You already did your intro, so just hop into your question. Of course. Katie, thank you for the plug for Zinnia and your recent speaking engagement. So you began by talking about the lack of necessary supports for caregivers and the toll it takes on them mentally, physically, financially.

There... Yeah, and then we just brought up Guide, right? There are things in place today, and also efforts to get caregivers paid by certifying them. There's a piecemeal efforts that seem to be moving in the right direction.

But in your view, what is keeping these things from large scale adoption, and what would you like to see for large- Mm... scale caregiver support? If we think about how to get caregivers paid and things like that, what are one of the barriers is, A, paperwork, even knowing that they exist and if you're eligible. And then let's think about, like, all of the families who might have reasons that they would be afraid to go into a government agency or to fill out forms.

What would I love to see? I would love to see if we could even just think about adult day health programs being free, covered in the way that public school is covered for children. Like, why do we not have a model where families can go to their local senior center and just because you're a senior in the community or living with a debilitating condition, you can just get support during the day? That would be incredible.

I suppose I have similar feelings about childcare. But what would I like to see is the caregivers to have resources. So resources are free or affordable respite that is consistent. And then when we think of cash benefits, recently, I know we, there was a bill for a caregiver tax credit, but caregivers have to work in order to be eligible for the tax credit, so that's not the same.

And then I was horrified thinking about myself, because of recent requirements now to prove if you're on Medicaid, that you are truly not able to work. And if you are able to work, then you need to show that you're working, otherwise you can't get Medicaid. Think of me. When Mike was diagnosed with FTD, I was 29 and Noah was one year old, and then my mother died and I became responsible for my dad.

So I was caring for two adult men with progressive dementias and an infant. I, able-bodied and well-educated, I was able to work, but absolutely not able to work. But Medicaid was critical for myself, my son, and for Mike's long-term care insurance. So the horror of thinking about that I would've been required to work to have health insurance, I don't even know how I would've made that happen.

How would I have paid for coverage for two people with dementia and an infant? So there are, like, forces that are making it a lot harder for families. That mention of when you, I think you said you were 29, and I think Mike was 32, told me that story, took my breath away. I'm like, how much more...

I think the word to put next to your name is resilience, both from your lived experiences, but then also through your work. What are some of the differences this group should be aware of in the caregiver journey when it's something like what happened to you in your late 20s versus what is happening to somebody who maybe is retired and able to have some more bandwidth? Love to hear that compare and contrast. Yep.

Okay, so two things come to mind. So there is a 2017 study in the American Journal of Neurology, written by Dr. Jim Galvin, where he talks about that the cost of care for a young onset dementia is almost twice that of a later stage dementia. And then recently, in support group, we had 30 caregivers, and we had a presentation from the Alzheimer's Association about the cost of care, and all the statistics are from older onset, like 70s on.

And the amount of care our group of young onset caregivers, they overestimated everything. And I thought, they're not overestimating, they're reporting their young onset experience. Why is it more expensive? It's more expensive because young onset caregivers, young onset families, typically the primary caregiver is working full time when the loved one is diagnosed, and they tend to employ out-of-pocket care earlier.

So what happens is, those people, they're working full time, so they need care coverage so they can work. So then they don't have any coverage for respite, because they're barely eking out the coverage. They're spending the retirement accounts of the person with the diagnosis. They're spending down to just keep afloat and keep their health insurance, and many of them have minor children, teenagers, and folks, kids in college in their household.

So they are using memory care assisted living at an earlier stage than people who are retired. So when a family caregiver is not working and they're the primary caregiver, they're okay with the local adult day health program for three days a week from 9:00 AM to 1:00 or 2:00 PM. But when you think of the family caregivers working 40 hours, then that means there's not even any commute time built in. So I had a caregiver who told me that once a week he skipped his lunch and didn't eat so that he could use his lunch hour to go to the grocery store, because he didn't have coverage to do that.

And we were like, "Why don't you get it delivered?" And he was like, "It's my one time where I feel like I get a break." A break? You're doing a chore at the grocery store.

So just know that your young onset caregivers are a lot more stressed. They have less bandwidth, they're spending more money, and they're fighting for eligibility. So even though they're technically eligible through the Older Americans Act that was revised for the young onset group, I feel like it happened in 2022. It was the reauthorization of the Older Americans Act to include people under the age of 65 if you're diagnosed with dementia, meaning you could access services at the local adult day health program or through the area agency on aging.

What I find is that in reality, when they call and they say, "My husband's 50, my husband's 42," the program says, "We don't provide services to people of that age." So then sometimes I call and say, "Actually, let me talk to your director. You do. You're required to."

[laughs] But so just think about the social stigma and who can help your loved one. I wanna talk a little bit, you know, you have this framework around the care plan trifecta where it's medical, home, and advocacy in the community. What should founders be thinking about as they're building businesses in the care space and how to tap in to all three of those versus maybe only focus- pleasing on one or the other? I'd love to hear some insights there.

The care plan trifecta is a framework that I try to help families think about how to care plan in a way that's simple and can meet their values, their goals of care, their culture, their community. So for founders, you wanna think about one of the things that families need help with is connecting their medical providers. So how does the, what the podiatrist sees get transferred to the primary care? How does the prescription for mood that the primary care's suggesting get transferred up to the neurologist?

So families need a lot of help. They feel overwhelmed getting providers to talk. They all tell me, "No provider knows what the other is doing," number one. And then they also don't know the value that their home health aides can provide in reporting to these medical professionals.

So really encouraging families that data capture should be done by the family caregiver, if you have an app that does that, but also by the professional caregiver. They should be invited to contribute to reporting. And then I think third, it's family caregivers just feel so alone. They say that all the time.

They use all this language with me: lonely, my world is shrinking, isolated, I've lost friends. One caregiver today at the tour, he was like, "I just wanna meet other caregivers and just have someone to talk to who knows what I'm going through." And support group is a great way for that, but anything that can help people feel like I'm not the only one experiencing this. Katie, I have to say, I think hearing all of your anecdotes of real things you're hearing and seeing and stories as recent as three hours ago, I think helps frame things really well versus talking in generic.

So that's my biggest insight, is just hearing the specifics of what different caregivers and their loved ones are going through your work there. But Dale, I'd love to turn it over to you. Sure. So Katie, every time I hear you, and- [laughs]...

I learn something new, and I'm just struck by how you've taken this wealth of experiences that aren't great, and you've really turned it into being so meaningful for the caregivers you support. It's like a firefighter who was, like, out of a burning building and runs back in to help. And so thank you for bringing your lived experience to the people you help and serve and to us to help us better understand how we can do that too. And thanks again, Katie.

Bye, everyone. Bye-bye. [upbeat music] And finally, an invitation to all of the extraordinary health transformers, whether you are a startup, someone building the future of health, or whether you are an investor, funder, or buyer of the solutions out there in the marketplace, this is an invitation to you to join the StartUp Health member community. Learn more at startuphealth.

com. Look forward to hopefully seeing you soon.