Ep 115 - The Calls You Can't Answer: Building a Voice Bridge for Dementia Caregivers with Kirstin Thomas

Caregivers of people with dementia know the toll of repetitive, anxiety-driven phone calls — sometimes dozens or even a hundred a day. On this episode of BrainStorm, host Meryl Comer talks with Kirstin Thomas, co-founder of KindredMind, about the personal crisis and pivotal moment that led her to build a voice-companion app that answers those calls in the caregiver's own cloned voice. They dig into dementia separation anxiety, validation therapy, privacy safeguards, and why Thomas insists the technology is meant to be a bridge for caregivers — never a replacement. You don’t want to miss this informative episode of linking caregiving and technology. 

Support for BrainStorm by UsAgainstAlzheimer’s comes from Genentech. Genentech is committed to pushing the boundaries of scientific discovery in Alzheimer's disease by researching and developing treatments to preserve what makes us who we are.

Transcript

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Kirstin Thomas (00:00):

It was a pivotal moment for me where I had to choose between my daughter and my mother. My daughter was on stage at a dance recital and my mom phoned. And so in that moment, I had to decide, do I take the call to ensure that my mom doesn't continue to sit in fear, sit with her anxiety, her agitation?

Introduction (00:21):

Welcome to Brainstorm by UsAgainstAlzheimer's, a patient-centered nonprofit organization. Your host, Meryl Comer, is a co-founder, 24-year caregiver, and Emmy Award-winning journalist, and the author of the New York Times bestseller, Slow Dancing with a Stranger.

Meryl Comer (00:40):

This is Brainstorm, and I'm Meryl Comer. Welcome to the new reality of dementia care, smart home technologies from caregiver robots to AI companions that promise to enable older adults, including those with early stage dementia, to live independently longer. Our guest is Kirsten Thomas, co-founder of Kindred Mind, a voice companion app built to manage the repetitive anxiety-driven call from a loved one with dementia that no smart home device has been able to solve. Kristen, welcome. Thank you for joining us.

Kirstin Thomas (01:23):

Thanks for having me, Meryl. 

Meryl Comer (01:25):

Kristen, you've been quoted as saying that Kindred Mind was built because you needed it caring for your own mother, Sharon, who has frontal temporal and vascular dementia. Share your personal story.

Kirstin Thomas (01:37):

 I get choked up when I hear her name mentioned, sorry. , It's always just been my mom and I raised by,  a single mom. I'm an only child. , So it was just the two of us. , So there's a strong I guess, codependency that's built in inherently in that dynamic. , My mom, if I were to describe her, social butterfly, boss lady, hustled wore you know, the, the classic shoulder pads in the 80s and early 90s did very, very well for herself. , Complimenting her business acumen, she also had a really sensitive, empathetic side. , So wow, this is unexpected. I'm sorry. <Laugh> ,

Meryl Comer (02:24):

So - It's always, it's always painful.

Kirstin Thomas (02:28):

I actually noticed a slow burn cognitive decline over, you know, now the rear view mirror is, is hindsight and I could see it more clearly now, but I would say at least a decade, maybe even more. And it was slow. There were signs of some sort of cognitive change simple, simple tasks like executive functioning, you know, she would have more trouble with. So it wasn't the classic , memory that we always kind of look for the way we've been kind of , I guess taught to be trained to look for and what I saw in my grandmother. So this pattern of repetitive calling too was another kind of clue that really signaled that that was, she was, and we can go into this in depth, that reassurance from me, given that I was her only familiar voice, the trusted voice, the, her person.

Kirstin Thomas (03:30):

, So it was across this two generation, and I can go into when I was in high school my mom was working, I was out of the house, and we would come home and field hundreds of calls from my grandmother. So that signaled to me she was, you know, calling from the moment she woke up to the two actual moments as we were retrieving those calls. , And I used to field a lot of those because my mom, you know, she passed the baton to me only because of exactly that, caregiver burnout. , I hate to say I mean, it, it, it, it pains me to say that it becomes a burnout, but it's the reality of, for a caregiver fielding all of those repetitive calls with the repetitive questions and, you know, offering that reassurance in the same way each time as if it's the first time.

Kirstin Thomas (04:18):

And I, I cite this example because it was it was, it was a pivotal moment for me where I had to choose between my daughter and my mother. , My daughter was on stage at a dance recital and my mom phoned. And so in that moment, I, I had to decide, do I take the call to ensure that my mom doesn't continue to sit in fear, sit with her anxiety, her agitation, you know, maybe she's disoriented, forgets where she is, or do I sit and watch my, you know, daughter on stage? I chose to step out of the theater in that moment. , But it was then that I was like, "How can I be in two places at once?" And so we leaned on, my partner and I leaned on familiar voice technology and were able to develop what we're gonna talk about next Kindred Mind and how that really solves two things, but the impetus was to solve for those calls that I, I missed because that weighed on me, knowing that my mom was sitting in fear.

Kirstin Thomas (05:16):

, But also there's kind of a byproduct and that is it, it gives the caregiver a bit of a reprieve, a bit of a moment to get through their day focused without having to feel, you know, I've heard stories of upwards a hundred calls a day.

Meryl Comer (05:33):

Please, any caregiver can relate to the story you just shared. , You know Kristen, many of these new smart home devices, whether it's a wall-mounted radar sensor, so it detects falls without cameras or GPS tractors that pingly alert when someone wanders beyond safe boundaries, it simplifies tasks and enhance safety, but they're built for productivity, and it doesn't meet that emotional need of the person with dementia. So is that the space that you're focused on?

Kirstin Thomas (06:12):

Yeah. , I mean, there's lots of great products out there, but there was a gap in the, in the market specifically, and we realize this is very niche where you're solving for those repetitive reassurance calls. , So that's a very specific pain point for caregivers. And also, interestingly a stat shows to the older children, it's a predictor of sending their, their, their loved one living with dementia into long-term care faster. Back to your question about the, the products on the market yeah, there's, there's some great ones, but none of them met that pain point for the caregiver, but conversely, and more importantly, for the person living with dementia.

Meryl Comer (07:03):

You know, we've all shared our stories as caregivers about those incessant calls and you're in a work meeting and, and the guilt about leaving or what's happening because it adds to your own tension, but you've written about something that is behavioral that I really hadn't focused on before, experienced it, but not focused on it, and that's what's called dementia separation anxiety. Can you explain what that is and why it matters?

Kirstin Thomas (07:34):

Yeah. Well, there's a cognitive component and an emotional component, specifically with the separation anxiety in people living with dementia, is, is they're feeling fearful, agitated, disoriented, all of these feelings of confusion, and their only go-to is the person that's always likely, or maybe arguably, made them feel comfort and trust and familiar on many levels. And, you know, what's interesting is a lot of things are lost as far as memories are concerned, but it's that audio voice, even if it's not in, in person, but over the phone, is, is one that ca - has been documented, studied many trials to show the reduction in agitation and anxiety.

Meryl Comer (08:24):

So at the basis, every call is, is an act of trust and every unanswered call carries guilt with it.

Kirstin Thomas (08:32):

Well, carries guilt for the caregiver, but also for the person living with dementia it, it, it can actually escalate their levels of anxiety. And what I've observed is the more the calls go unanswered, they come with more urgency. With a device like Kindred Mine or, or an app like Kindred Mine having that, you know, that, that fear being met on the other end of the, with someone who sounds familiar and, and is your loved one, chosen person, your lifeline, then those calls come with less frequency.

Meryl Comer (09:05):

Well, you know, 60% of dementia caregivers report high levels of stress, 40% experience clinical depression, so call blocking and voicemail doesn't resolve that anxiety, right?

Kirstin Thomas (09:20):

Yeah. No, and I, I did look to the alternatives prior to developing this. , The person is met with a recording and leaves the message and the beep, but it doesn't have what we're offering, which is taking it into a modern time where you can have a two-way generative exchanged conversation based on relevant information. , So the alternatives were just, they were dead ends. , And in some cases, in most cases, actually, the, the adult child will remove the phone entirely. And I don't, I, like, I, there's no judgment. I mean you do what you got to do to get through your workday, to get through, you know, caring for your family and all your other obligations. , So that is a common one. And then one other one that, you know, I mean, some medicate, medicate the symptom of that anxiety.

Meryl Comer (10:10):

No question about that. But, you know, as the dementia progresses, we also know that the short-term memory that allows someone to hold information is deteriorating. So it also is a signal at the same time. , Can you give us an example, because you're the first tool that will deliver responsive simulated presence therapy through a voice rather than a static recording. Yeah. So give us an example of what that conversation sounds like. Yeah.

Kirstin Thomas (10:42):

Yeah. So during the onboarding I'll just go quickly into that the caregiver will, it's a Q&A in exchange for, like, you're, you're cloning the voice while at the same time offering a platform or foundation of relevant information so that when the loved one calls Kindred Mind, the unique dedicated phone line, it will pick up on not only, you know the initial, or in some cases, professional voice companion. , It depends on how much time you commit to that, that voice cloning. , But it's all based on the information that you provide. Very surface level, no medical, no last names no financial details, of course, but it's enough for Kindred Mind to have that two-way conversation. So for example, my mother will call and ask about the kids, and I can update this on the fly as much as I want or not at all, but based on that onboarding session and an- anything I add on into the, to the dashboard afterwards, it will pull from.

Kirstin Thomas (11:41):

So I can update and say, "Yep, Caden's camping in Algonquin with his girlfriend, so if my mom's asking after the kids, it will answer with relevant information."

Meryl Comer (11:50):

, what if she asks, "Where's my husband who may be de - , deceased?" I mean, do you correct or what kind of validation therapy is in play here?

Kirstin Thomas (12:00):

Kindred Mind is based on pillars of validation therapy, the simulated, you know, voice, in this case, voice therapy, and we're also based in, on the Alzheimer's Society of Canada's Dementia Friendly Guidelines. So all of that, all of those pillars woven in strictly, strict guardrails, but in answer to your question, how it, it validates, it meets my mom in the moment. It doesn't, it doesn't fix or correct facts. Of course, my grandmother is not, is not alive. I mean, she's passed some 30 years ago. So we would never introduce that truth to her because she wouldn't be able to pr - A, process that, and then on top of that, she would end up feeling all the feelings for having lost her mother, so she'll be grieving. And to your point about the short-term memory, she could probably ask this question truthfully, like 50 times in a day.

Kirstin Thomas (12:49):

So that means you're having her go through that grieving process 50 times in a day. So instead, it will draw, it won't, you know, create an elaborate lie either, but it will draw upon some nice, you know, it might say, "What, what's a fond memory you have of you and your mom?" Or, or, "What was something you, you loved your mom to bake?" If I knew the, the conversation might swing there, I would add that into the dashboard, but I s - but Kindred Mind doesn't concoct new information. It just knows how to validate in the way it's been trained and to then, so it answers my mom, validates my mom, and then gently redirects to something that, you know, is more pleasant.

Meryl Comer (13:33):

The whole thing, conversation raises issues about ethics and privacy. How do you ensure that whatever conversation is being had is caregiver authorized and not a deception?

Kirstin Thomas (13:46):

This is a really, really good question and up for, like, a lengthy debate, certainly. , But if I were, you know, the, the alternative would be to inform my mom and be transparent and say, "Yes, the, the voice you're hearing sounds like me, but isn't actually me. It's AI." First of all, she wouldn't be able to even comprehend that, retain that, make an informed decision on that. So if you're looking at all of the options, my goal for my mom is to feel calm, to reduce the fear. And I know she sits in fear. I know this. So if that, if Kindred Mind can do that with my voice when I can't answer, and I, I want this message to be loud and clear. I, I visit her almost every day. I try to get to every call. But for example, like right now, I, I couldn't feel the phone call from her or anyone.

Kirstin Thomas (14:42):

, So if I know that, you know, there's, there's a voice companion that can answer my mom with the goal of reducing that a- agitation, answering any questions about when I'm coming, and, and, and she gets off the phone and those phone calls come with less frequency, then I feel like it's done what it's, what it's meant to do. With people living with dementia, that is your goal, is to give them peace.

Meryl Comer (15:06):

You know, Kirsten I used to be upset having been a caregiver for many, many years about the notion of a robot caregiver that I believe could replace me, right? <Laugh> , and I think the goal is not to replace me with your voice app at all, right? No. You're really supporting me.

Kirstin Thomas (15:37):

It's a bridge, not a rep- replacement framework. It's and I want that message to be loud and clear. This is, it would, it would be a failure for me if I found that people were using it to replace themselves as c - as caregivers to their loved ones. This is to amplify your voice. This is a bridge. It's, it's to fill those gaps that you truly can't be available for, you know, 2:00 AM phone call when you're in the shower, when you're at your daughter's dance recital, whatever it is for you it's, it's meant to just bridge the times. And I, I mean, this, I still visit my mom, like I said, almost every day. I try, I try to get there every day. , And I, I try to field all of those calls, but it's, it's those calls that I just can't get to.

Kirstin Thomas (16:25):

So it would never, ever, I would never want this to be a replacement for the true caregiver. You know, some people might think, oh, you know, you just, you just get 20 calls a day. That might just be an inconvenience or maybe you're annoyed, but it's not. No. When you live it and you have the same question posed and the same response and you, and you ha - you can't be unwavering with your voice because they pick up, they absolutely pick up on the feeling that you're projecting through the phone, it's, it's exhausting. It, it absolutely. And I ha - I hate to admit it. Like I hate that it, it's an exhausting thing to, to, to deal with, but it's, it's, you have to reframe it and see it as not a behavior to manage, but truly a need to be met.

Meryl Comer (17:09):

You know, the earlier we go in the disease now, you're really trying to help someone live independently for as long as possible. And this is almost like a safety valve for them emotionally because they always turn to you for comfort. Even after my husband forgot my name, I was the safe place. Yeah. So I think emotionally, there are so many issues. So how do you manage the privacy issues? Is it encrypted?

Kirstin Thomas (17:43):

As the caregiver, as you're onboarding and, and, and it's taking your airtime, essentially cloning your voice, you have given consent as a caregiver. It never records your loved one living with dementia's voice ever. With the caregiver, it then deletes once it's made the voice companion. , The account holder, the care, the caregiver, can delete the account. It is wiped out entirely. , I mentioned earlier, we, we follow strict PIPEDA laws in Canada. Well, this

Meryl Comer (18:15):

Is a privacy issue because hearing something in my mother's voice, there are nuances that you pick up on because of the intimacy of the relationship. Aren't those valuable to hear? I mean, why can't I hear that voice? Is that regulated?

Kirstin Thomas (18:35):

It's an excellent point because there, to the nuance to the nuances, you can actually detect and AI can do a very good. And in fact, there are AIs out there that are listening in for those changes in conversation, if it's repetition, if it's a subtle, you know, paraphagia, or if it's like , you know, an in- inter - in- in - , interrupting word play, all of those things, or exchanging words rather. , So all of that can be detected, maybe not so easily by the actual, you know, adult daughter, but AI knows what to listen for. So absolutely some - that data is a goldmine, absolutely something that's in our pipeline. It's on our radar. But currently, because we are very strictly following privacy laws, we haven't dabbled in that as yet. , So there's no recording that's ever preserved.

Meryl Comer (19:28):

You've also added something I thought was quite clever, outbound feature, the check-in calls and reminders. Give us an example.

Kirstin Thomas (19:36):

It is a new feature. , And what's great about that is we try. We see this as trying to get ahead of the anxiety. So if we see patterns, say, you know, sundowning early. And sundowning, we realize can happen at any time of day, but we see it happening at time of sundown, so early evening. , Sending an outbound call to the loved one with that reassurance just to try and get ahead of the anxiety built. , So there's that usage. , But also as a companion, you know, to make conversation, to exercise language skills but. And also, as a reminder. So depending, again, where your loved one, you know, sits on the dementia, you know, journey reminder to, if they are aging in place take your medication, you know, reminder to take the. Today's garbage day. One other great feature here is for those families who elect to not clone their voice, they can choose to have an assistant.

Kirstin Thomas (20:37):

And I see this being something great in the early, like the mild cognitive impairment world, because with the assistant, they would obviously know it's not, it's not your voice, it's your assistant. And they can, they can field those inbound calls when you're in a meeting and just say, "Hey, you know, Kirsten's in a meeting. She will be out in an hour and we'll give you a call." Then that's another thing is Kindred Mind offers the summary. First of all, you have the transcript summary and a little. It's like calls notes for their mood and if there's any call to action. So, you know, if you've missed those calls, you can always refer to those notes. So all of those dis- distressed keywords, like the universal ones, are built in, and you can actually add any that you know are unique to your loved one.

Kirstin Thomas (21:24):

Everyone's different. , But there are the universal baseline keywords, fallen, fight, hit, fire, all of those. And if, you know, for example, if my mode is to cover for me and I'm, you know, I'm not able to take those calls, but, but my mom mentions a word that's in that, you know, library of keywords, then it will break that mode, alert me by SMS and a phone call in real time to say, "Hey, your mom just said fire. You might wanna call, you know, the care, the care home and, and look into that."

Meryl Comer (21:56):

That's really critical. You know, what I like is that you have framed this as more than an app. It's sort of about caregiver sustainability. <Laugh> So tell me why that matters at a systems level, because when you look at the stats, it's really both distressing and astounding.

Kirstin Thomas (22:16):

Yeah. One in four caregivers who are fully employed, like working full-time they, they have a high proportion of absenteeism, and they also call it presenteeism when you're actually at your desk but you're not producing. And if you were to aggregate that, that's in the billions of loss for US companies alone, that if you were to add up all those caregivers. And, you know, HR. I mean, there's a business case for this. HR would need to know, and sometimes they're not in the know because employees don't always say, "I'm a caregiver."

Meryl Comer (22:52):

Listen, I think for human resources and a company, when you look at the stats that they're losing $60 billion annually to caregiver interruptions and absenteeisms you know, it, it. And for employees, you know, they either go in late or leave early. I mean, there, there is always an issue, and in fact, I think if we don't give caregivers support, we lose them in the workplace.

Kirstin Thomas (23:19):

That is a fundamental ethical principle, for sure. The autonomy, as much as you can preserve safely. So we have 15 languages offered. , We did that because we were hearing stories of people regressing or, you know, reverting back to their childhood and then adopt their native tongue where it made conversa- conversations between their, you know, grandchildren, for example, and sometimes even their own children more difficult. So you could have your voice now in, <laugh> in a language you may never have spoken. Now,

Meryl Comer (23:54):

A lot of people like to test something before they commit to it. <Laugh> Are you test worthy? <Laugh>

Kirstin Thomas (24:01):

Yes, of course. There's a 14-day free trial, and what I actually suggest people do is start with that eight-minute onboarding where you clone your voice, add to the da, like, the knowledge base, and then actually call the dedicated line as if your, your loved one, and speak to your own self in your own voice. And then you can throw it curve balls. , You can see how it handles all of these, you know, scenarios that you wouldn't otherwise think to include in the knowledge base. And because it's, you know, strictly built on these pillars of validation and simulated presence therapy in the Alzheimer's Society of Canada's guidelines, is that it, it does an excellent job of being able to. It has its, it has its guardrails, and it knows how to, you know, as I said, answer, validate, redirect to a place of calm.

Meryl Comer (24:57):

You've been so creative in a very painful and emotional space for everyone, both the person living with dementia and then for the family, because this impacts the entire family.

Kirstin Thomas (25:10):

Oh, 100%. Thank you.

Meryl Comer (25:12):

Thank you.

Kirstin Thomas (25:13):

Thanks. That means, that means so much coming from you. Thank you so much.

Meryl Comer (25:17):

Our guest has been Kirsten Thomas, co-founder of Kindred Mind. And don't forget, join us for the 11th annual National Alzheimer's Summit on September 16th and 17th. This year's theme, The Time Is Now: Advocating Alzheimer's policy for every generation that highlights the importance of caring for the brain at every stage of life from childhood through the older adult years. Go to usagainstalzheimers.org/alsummit to learn more and register there for this virtual event. That's it for this edition. I'm Errol Comer. Thank you for brainstorming with us.

Closing (26:04):

Support for Brainstorm by Us Against Alzheimer's comes from Genentech. Genentech is committed to pushing the boundaries of scientific discovery in Alzheimer's disease by researching and developing treatments to preserve what makes us who we are. Subscribe to Brainstorm through your favorite podcast platform and join us for new episodes on the first and third Tuesday of every month.