Erin: I'm Erin Young and you're listening to Designing for Dignity, Innovation in Brain Change, AgeTech and Care, a podcast from Slide UX. And in this series, we spotlight innovators and people with lived experience in aging, brain health and care with the goal of helping all of us shape better experiences for people who are navigating these spaces. And today I'm so excited to talk with Kunal Parikh, a consultant in AgeTech and health technology innovation who helps founders bring thoughtful solutions to market. He trained as a physician in India, completed a post-graduate program in digital health ⁓ and earned a master's in aging and health from Queen's University where he received the award of excellence for his research on virtual caregiver interventions. He spent five years at Trualta joining as the first full-time employee and growing through product, client success, implementation and innovation roles. And he teaches the Bachelor of Technology program at Algonquin College as an adjunct professor, leads speaker experiences for TEDx Ottawa and is himself a TED speaker. Kunal, thanks so much for being here.
Kunal: Thank you for having me.
Erin: I'm really curious about your training. So you started your career as a physician in India before moving to Canada and pivoting into digital health. What pulled you out of clinical practice?
Kunal: The reason I went into medicine was I loved working with people and my notion of what practicing medicine would be like was inspired by three shows, House, Scrubs and Grey's Anatomy. And turns out medical practice is not like any of these. But at its core, I loved working with people. And an integral part of medicine for me was patient education and rehab care and preventative measures. And there just was not a lot of time for that because I was practicing at a tertiary care center, also a publicly funded hospital where the masses go to. So while I got a lot of exposure, while I learned a lot in that time, I just didn't get to do the things that I really was passionate about. And through all of those years, the common invisible string that connected those experiences was the frustration that medicine treats episodes. Our health and specifically aging is such a continuous holistic experience. And we are structurally, by design, blind to what happens between those visits. So I really wanted to explore technology because it had this promise of patient safety and increasing access and improving the quality of care that we provide. But the pull towards tech was less about the tech itself and more about the temporality of our health. I wanted to really be able to impact not just that 1 % of the episodic care, but the 99 % that happens outside of the hospital or outside of the clinic. And I see that that's a pattern that exists even in Canada. We're transposing acute care models onto the chronic care needs of today. The acute care model worked really well in the 70s and the 80s. It increased our lifespan. But now that infectious diseases are no longer the leading cause of death, we now need to adjust how we approach healthcare so that we're able to treat the chronic conditions and control them a lot better. So I really think technology can play a pivotal and integral part in some of those things.
Erin: Right, there's so much opportunity. That's really compelling. So you've talked about long distance caregiving as the experience that really crystallized your commitment to the space of aging and care. Can you take me back to the stretch of your life where you were exposed to the long distance caregiving and how it shaped the work you do now?
Kunal: The second wave of COVID, I got a call from my mom that my grandmother has contracted COVID and my dad was still recovering from it. My mom had recovered from it and my sister was still going through the treatments and everything. And all three of us, my parents and myself, we're all healthcare practitioners, but still the coordination of the care that I was doing from Canada was chaotic. I had this newfound appreciation for air traffic control because it felt like I was doing something as important and involved and like moment to moment. And I could not help but think that caregiving is a lot of logistical labor as much as it is emotional labor. We have a lot of tools that serve the logistical labor, but not so much of the emotional labor. Around the same time, my grandmother was in the ICU and she was given a blood transfusion. She had an anaphylactic reaction and she was 81 at the time. And my mom and I were just bracing for the impact. I was trying to talk to my mom about, you know what, this is it. She would have wanted to go in peace. She would not have wanted really invasive procedures. I was providing a lot of emotional support, my mom and I were like constantly each other's caregivers almost. And then my grandmother snapped out of it and she recovered from it. And we're like, my gosh, that was, that was a whirlwind. That was like such a tornado of emotions and lots of logistics. I found myself constantly going back and forth with my priorities from like what is the decision that we're making with the treatment right now? And then at the same time, five years from now, how are we managing the estate planning and everything for my grandmother when she does eventually pass away? So it's a very telescoping phenomenon where you're constantly shifting your mindset from the here and now to the there and then, and all of this contributes to what I truly believe about caregiving is that the morphology of your caregiving really depends on multiple variables. The most important ones being presence and proximity. And to that effect, caregiving support needs to also shapeshift based on these unique caregiving contexts. It needs to be malleable, personalized, and multi-component. And this is one of the core principles I apply to how I approach, conceptualize and evaluate AgeTech.
Erin: One thing that your experience highlights is that because there is such a large logistical component to caregiving, that a lot of work really CAN be done remotely, because it is orchestrating. And while that's a disadvantage and it takes away certain information that you might have if you were able to be closer, it is very possible, especially with the tools that we have today. But you also highlighted the emotional weight of caregiving and how important the support that you all were able to provide to one another was in your situation. Every family has a different mix of personas, but I find that those that have support and fluidity between multiple people so that they can lean on each other, and collaborate on decision-making are at a huge advantage when it comes to caregiving, whether it is remote or local, because it is so difficult and it can be so heavy.
Kunal: You're so right. I think it's the differing perspectives or the divergent vantage points that we shared that contributed to a good caregiving experience almost because it's impossible for one person to see everything about one person all at the same time. So I have access to X, Y, and Z. My mom brings the A, B, and C. And then together we make decisions that ultimately honors of my grandmother's wishes. To your description about being able to do a lot of caregiving remotely, there's actually a lot of research that shows that the way men and women approach caregiving is fundamentally different. Women care for and men care about. This is obviously not, bulletproof, it obviously is variable, but in general, research shows that women engage in the relational care for the person and with the person, whereas men tend to have a perspective of caring about. So they get engaged in more of the instrumental tasks of caregiving, I don't believe that this is a hard boundary, but it does provide clues as to how AgeTech can use this information to market and promote their products to the caregivers.
Erin: Right. Another clue that you mentioned earlier caught my attention because it's something that I've heard in several podcast interviews that I've done, which is this concept that you did not see yourself as a caregiver. That seems to be a really, really common thing.
Kunal: It absolutely is. One of the things that I learned through Trualta was any caregiver intervention can only be as successful as how people see themselves. Do they see themselves as caregivers or do they see themselves as, ⁓ I'm just a good son or a good daughter or a good spouse? Because If you think about parenting, as an example, when you have the birth of a child, that marks a very clear and ceremonious transition into your new role of, I'm a dad now. But caregiving begins so gradually and it begins so incrementally. You might begin with, I'm just ordering groceries and I'm gonna drop them at your place. Before you know it, you're also managing the medication schedule, you're going to doctor's appointments with them, you're... advocating for them in those appointments. So because it's so gradual, people don't really realize that they are caregivers. And then there's the societal perception of what our roles are. Women are regarded as a natural nurturers. I have such a problem with that imposition. But because we have inherited that from society, what you do as very hardcore caregiving duties often get conflated with, you're just doing what you're supposed to do to be a good family member or a friend. So the self-identification of caregivers is a really really big barrier and because I learned this and I wanted to go deeper into it, I did a lot of research on it which led to my TED talk on this topic and it just the title is as self-explanatory as it could be, Did You Know You Are a Caregiver? Because ultimately, caregiving is going to touch every single one of us. And it is really important and critical that we acknowledge our caregiving roles. Only then can we actually advocate for ourselves and access the benefits and supports that we're trying to create.
Erin: And I can understand how a son who's mowing the yard for his grandmother doesn't necessarily consider that a caregiving task, but it is, right? It's all just about how you think of it. Okay, so I want to set this up with a story from my own life. My dad had advanced Alzheimer's disease and he was really agitated when he had to go to the nursing home after a seizure and he wanted to fiddle with the mechanics of his wheelchair, which can be risky. We were worried that he was going to pull a screw out or something like that. And when we went looking for fidget products to help with his agitation, almost everything that we found was primary colored, oversized, very much like toddler design. And that's I think the physical version of something that we see happen a lot in software for older adults. Can you walk me through this pattern? How would you describe that?
Kunal: First of all, I'm so sorry that you weren't able to find proper appropriate devices, but that is such a clear example of how we have internalized the stigma surrounding dementia and cognitive decline. It is an asinine extrapolation that if someone has impairments to their cognitive function, it means that their agency and personhood is diminished. And the origin of this can be traced back to the obsession of our society with productivity and youth. As the very famous satirical song goes, you're only as hot as your last hit, so if you're not actively contributing to society's capital or productivity, if you're not actively the hamster on the wheel producing your words, and paying the civic rent for the space you occupy in our society, you're treated as less than. And that is what leads to the infantilizing primary color design. And I've seen this emerge in a lot of different ways in software in four main areas, in four main shapes and forms. First is the visual design, right? Like you'll see oversized buttons, a very primary palette or... cartoon iconography and we're showing this to people who may have been professors for 55 years of their life. It is insulting. The second is language. It's very second person diminutive. There's a lot of exclamation points. There's a lot of baby talk reassurance. Great job. And it is ridiculous. Then the third is more of the interaction or the interface of the software where you see gamification, but I'm such an advocate and a proponent for gamification, but then when it translates to rewards and stars and confetti and great job, that is not gamification. That is lazy. And the fourth then becomes form factor. This is the device. Essentially announces ⁓ to the room that, hello, I am actually frail or I have cognitive impairment. So it manifests in these four ways. And I have a hypothesis that this is symptomatic of a deeper underlying issue. Infantilization is what AgeTech manifests when the creators have not talked to enough users, it becomes a substitute for understanding like a large enough sample. Your parents and a few friends is not a robust sample size.
Erin: I love the insight that you just provided about the way that society applies value to people. For me, it's really personal. I carry a genetic mutation that will cause Alzheimer's disease and knowing that that might happen, especially with my particular background, which is always being, you know, the person who made good grades, who led a company, who was all of the value came from my intellect. And knowing that that someday won't be there really forced me to reckon with my own biases around identity and the value of a human. And I'm glad it did. I feel like that reckoning allowed me to correct some things and watching my dad decline with Alzheimer's showed me that he was every bit as worthy to me in his final days as he had been when he was a super productive citizen of the world. So I love the way that you attribute the cause of that and the opportunity that we have to correct those four areas of infantilization.
Kunal: But I actually have a follow-up question to you. How are you planning on preparing for the future where you may have cognitive impairment?
Erin: Yeah, there is a huge question and there's so many different avenues of answering it. One of the primary things is by participating in a clinical trial that aims to prevent the onset of Alzheimer's disease because that would be ideal. But at the same time, really preparing things like estate planning, advanced directives, all that good stuff, to try and make sure that should it happen that I leave as little of a burden as I possibly can to my family knowing that there's only so much that you can do, right? So like I could just, I could talk for hours and hours about all of the ways to try and prepare. But Even though in my case, it's more of a certainty due to these really rare genetic mutations, I think that this segment of people who need to prepare, for cognitive decline is a growing segment because we can now do things like genetic testing and biomarker testing. And we're not really entirely prepared for it because up until now it's been like, hope that doesn't happen to me. And I think for the most part, you know, let's not think about it because it's hard to imagine.
Kunal: I'm glad you're being so proactive about it. I'm sure it must have felt like a shock when you found out about it.
Erin: Absolutely. Yeah. And it was a really crazy situation too, I tried to use my 23andMe data to get the answer before I talked to a professional genetic counselor. And 23andMe isn't FDA approved for those things, but you can access your raw genomic file. I did that. And I lived for about four months thinking I didn't carry the same mutation that... we learned that my dad had and then learned that I did. So real whiplash. But it's changed the trajectory of my life and given me a lot of purpose. And that kind of leads us to today's conversation. Something that you just said caught my attention. I know that this is something that you're really big on, that there's an opportunity to use gamification. for older adults, but it's not the form of gamification that we typically see. Do you want to talk a little bit more about that?
Kunal: Yes, gamification is applied human psychology at its core, right? Our motivation is very hardwired and calibrated and conditioned by the characteristic incentivization. Somewhere the purpose and goal of gamification got lost in translation from, hey, let's make healthy habits stick to let's make this playful. And therein lies my pet peeve. Apart from the fact that stars and rewards and confetti are juvenile, they're completely oblivious to the fact that adults have self-directed intrinsic motivation. If your product is good enough, you most likely do not need to resort to cheap gimmicks. But let's talk about what sophisticated gamification could look like. By applying game-inspired design, we give end users a scaffold that support habit building and skill practice and resilience, and they can transform small wins into sustainable behaviors. There's a few mechanisms that I'm particularly partial to. One is progression systems, like progress trackers that make effort visible and give you a clear idea of how you're doing on a scale or like what you still need to do. Then there's challenges and goals that drive consistency. Small structured goals, incrementally challenging but never prohibitively difficult. This is actually the theme or the motto of Lumosity which has brain training games and they've done gamification super well. Then there's simulations that build real-world skills like an acted out scenario or a role-play practice. And there's social elements or social play like leaderboards that reduce isolation by low-key opening you up to a community of other people in similar situations like yourself. So the idea is let's use game-inspired UX elements. It is not, let's make a game. Very different interventions.
Erin: I think that fitness apps and wellness apps offer good models for sophisticated and respectful patterns in gamification, things like Strava or Oura, treat the user like the adults that they are while using some of those game mechanics to encourage good behaviors.
Kunal: Exactly. When you see that you're supposed to do 7,500 steps, or that's a goal that you set for yourself, and then you're still missing just 2,000 steps at 7 p.m., there's something motivating about it. There's something that tells me, oh, you know what, I'm just gonna go for a walk. Maybe I'll get ice cream when I'm out, But then I'm still completing my steps. I think that is what, as you said, Apple, Strava, they do really well. And FitBit.
Erin: Yep, that's right. And on the topic of fitness apps, wearables and alert systems are another area in AgeTech that's really hot. And you've pointed to medical alert bracelets and wandering alarms that are so clunky that people refuse to use them. Flip side, of course, visually stigmatizing tracker is the invisible one, something like a GPS install or some sort of passive monitoring, maybe an ambient sensor. But in that case, the person who's being tracked may not be consistently aware of the fact that they're being tracked. So where do you land on this spectrum of options from really overt tracking to covert?
Kunal: This is a very nuanced question and there's a couple of layers that we need to get into before we get to that particular question. So first we must begin with what is the purpose of the tracking? Why are we using it? Is it because of wandering? Is it because of a fall risk? Is it for the caregivers peace of mind? Is that reason symptomatic of something else? I could be hungry, I could be stressed, I could be disoriented, I could be bored, I could, I might be in pain, I might have anxiety. There's so many reasons that could ultimately manifest as wandering. So when we use passive tracking, does that substitute for this investigation or relational care? Once we've answered that, then the second thing we need to think about is what happens when the tracking reveals something untoward, right? Like, is there a clear action-oriented pathway? Are there any distinct next steps that we have in mind? As an example, I get an alert that my watch has detected abnormal heart rhythm. What's my game plan now? How do I weed through the false positives? What do I do if there has in fact been a fall? Without these next steps and considerations, passive tracking is just noise under the thin veil of false reassurance. And then the third, is overt versus covert. I'm in general not a fan of overt clunky devices that basically just label the person as soon as they enter the room that there's some kind of monitoring that's happening with them. People most likely will not consent to wearing the diagnosis on their wrist or around their neck. Now, having said that, I'm not in general against passive monitoring. However, the caveat is there needs to be explicit ongoing renegotiated consent and it needs to have a lot of guardrails in place. There has to be minimal monitoring by default. It should be geofenced. So it must be active only in a certain place or must not be active in a certain place like your home. It should be time-based instead of this constant surveillance. And then the tracking needs to be part of a broader care plan. It's not something that's isolated. The care plan should identify distinct prevention and response roles when you find something through the tracking. Then you need to have like a dignity mode. As an example, when you're going for a walk with someone or at night or at private times, you don't need that tracking. And then most importantly, arguably, it needs strong data governance. How is the data stored? How is it retained? Who has access and so on and so forth. So there's a lot of thought that needs to be put into wearables and overt and covert monitoring.
Erin: You know, the number of times that I've found myself in a room of product innovators who have gotten really excited about data that could be dashboarded is just way too many to count. I don't know what it is about the temptation to dashboard the data, but it's like, we could put this on a dashboard and... The question is always "Cool. We can invest in that. And then what are we going to do with it?" And that's almost always the harder part of the question where it turns out that all the data does is it exposes the need for a plan on the flip side. And the work to establish that plan is like way harder than the dashboard itself. It's a temptation that product teams from all industries seem to have.
Kunal: It's, whenever-- there's a Beyonce song, I don't remember the exact lyric, but it's like, put a ring on it. And that ring is a metaphorical like dashboard ring for me. If you really like it, put a ring on it. It actually has a detrimental impact too, right? Because it, it then engages the end user in profiling. Like, If I have a high risk of falls, as an example, I'm gonna be monitored differently. There's gonna be more surveillance, there's gonna be more treatments, there may be like a different treatment plan, so to say, and it leads you into this rabbit hole of profiling and stereotyping.
Erin: Right. And it may not result in valuable changes to a person's outcomes. So going back to that concept of ongoing consent for monitoring, you've talked about consent thresholds and how they get murky as cognition changes. I think this is really, really important because It's so hard to know the moment or moments at which a person is of the capacity to provide consent if they're dealing with cognitive decline. So in your view, what does meaningful consent, where does it live for someone with a progressive cognitive condition?
Kunal: I am of the firm belief that consent is not a single signature on day one. It is this contractual relationship between the person who signs it and the person who is collecting data or providing a service that must be renewed as cognition changes because the phenomenon of consent decay is so important and pertinent when we're dealing with someone with dementia. There should be three layers or three levels to this, the most baseline is anticipatory consent. What the person agrees to when they're able to articulate their preferences clearly. Then there's supported consent and this is the moment to moment consent that is possible with scaffolding even as cognition declines. And then there's substituted judgment. This is what someone who knows a person really well would say that they would have wanted. This is again shaky ground, right? Because let's say I know my mom and I know that she would not want aggressive treatment. But I know this outside of the context where she actually has to make that decision. So let's say that we are at a point, God forbid, where that decision needs to be made and I go by my perception of my mom from back then where she would not have wanted it, but then in the moment, maybe she did want it. There is no way for me to know. So this is very fluid. This is very shaky ground and the most difficult one to maneuver around. This is why we ask people with dementia to have very thick directives set up so that it does not put the caregivers in a place where they will have to make the decisions without any knowledge of what the person would have wanted. Where most AgeTech companies would compromise on is they collapse all of these into like a single checkbox at onboarding. And it is often signed and subscribed without ever revisiting that again. And a once given consent is taken as a permanent yes and it outlasts the very capacity that made that consent possible. I do love the EU and the GDPR direction on this. It requires that withdrawal must be as easy as giving consent. There's a cancel now button that is mandatory in Germany and in clinical practice, we advocate using like a sliding scale of capacity, decision by decision. It's not a binary and AgeTech needs to inherit that pattern. Right now, I don't think this is being done well in our field.
Erin: The field of medical ethics is very well established. And although that doesn't mean that every ethical question has been answered, there's constantly new ones popping up, but it is a whole space. And the field of ethics around technology is in its earliest stages. And it's not something that a lot of attention is paid to. But when you talk about this episodic intervention structure and the fact that technology is what might hold the other 99 % of these interactions, it really highlights how ethics should need to come closer to one another, right?
Kunal: Exactly. Ethics is such a it's a right versus right a consideration and the verdict you reach in my case would not make sense in your case. It's so individual, it's so unique, it's so close to everyone's lived realities that it's impossible to have like this one defined answer which is why you need ombudsman in the context of hospitals, in the context of AgeTech, because the ombudsman will allow you to see things that you're currently not seeing.
Erin: Going back to the emotional weight of caregiving, I found that at the end of my dad's life, it seemed like the day was filled with decisions that were rooted in what would he want at this particular moment. And it's incredibly heavy to navigate that. But then also the metaphor you provided of bouncing between the here and now and future planning as a caregiver. or as an individual contemplating their own mortality. Watching my dad's journey through the end of life filled me with ideas for what I want to define for my own future. But at the same time, there are so many possible splits and permutations of what one's future might hold that we could probably spend our entire lives documenting what we would want in each case only to have our our wants changed the next day, you know?
Kunal: Absolutely. It's fascinating, it's complex and it's ongoing.
Erin: Mm-hmm. Yeah. I'm curious if a founder came to you tomorrow and they were building a passive monitoring tool for someone with dementia. What questions do you think that founder should answer before they start building the
Kunal: So who uses this product and who purchases it? The user and buyer split needs to be very explicitly defined upfront. Second, what does the person being monitored gain? Not the family, not the healthcare system, not the providers. What does a person whose home and body this device lives on get out of it? And if you cannot answer that question without using the word safety, you have not designed for them. You have designed around them. And then what's your kill switch? If the person no longer wants to use that device, what are the mechanisms to adjust? Is it a binary yes and no thing or are there different levels of usage that are possible? It should be around data. How do you handle the data being collected? Governance in AgeTech is hard. It is taken way too lightly right now, but it needs some real work put into it upfront.
Erin: You've mentioned in the past that the best design keeps users off the platform. And Hinge is a great example of an app that says it's designed to be deleted. Love that. So can you walk me through how the best designs in AgeTech will keep users off the platform?
Kunal: What a heartwarming tagline for Hinge, right? ⁓ It wants to make itself redundant. I think the same applies to AgeTech very clearly because the basic core of an AgeTech product is to strengthen the self-management skills of the individual. Now, self-management essentially means that you're able to regulate your emotions, thoughts and behaviors. And with respect to health, it involves five things. Problem solving, taking action, making decisions, partnering with providers and accessing community resources. This is a framework I have not created. This is a framework that has been created by Dr. Lorig and Dr. Holman, excellent pioneers. Now, AgeTech interventions either address one or more of these tenets directly, like skills-based training programs that help older adults adapt their nutrition to better control their diabetes, or the interventions replenish their confidence and self-efficacy. Self-efficacy is the internalized belief that, I can do this. I can manage this. And an example of this is gonna be peer support groups that connect you with a community of support. Now, this does not directly help you manage your condition, but it gives you a good time. It gives you the support from these other people and... It improves your self-efficacy, which implicitly improves your self-management skills. Either way, the goal of an AgeTech product is to help the end user get there, to make itself redundant. Teach the skills, connect them with the people. That said, the goal is not to optimize the product to keep the users on the platform. It is to deliver the user to a reality where they don't need the product at all. Dissonance in goals is oftentimes causative to overly complicated UX. Now, of course, self-management and self-efficacy are not linear by any means. There may be a new diagnosis or maybe a new symptom. And this is when it's natural that the users will go back to the product, but only if the initial appraisal of the product was positive. So this is where ambitious and overzealous tactics to maximize user attention in the first place might backfire because they turned the user off. And I get why that happens. This is a business model problem, more than a design problem. AgeTech revenues structured around continued use. So to incentivize push against design philosophy. But this is so clearly important to have the vision to keep users off the platform.
Erin: So I think that it can be oftentimes difficult for businesses to acknowledge that the reality that a decline in usage can mean that the needs have been met and to architect a business that works even when that's the case. You've talked about the exchange of value that's necessary. And I think that this is particularly true for this overwhelmed, stretched caregiver. And I believe that in the past, you've worked on caregiver education platforms where features like frequent check-ins assume that users the time to log in and and you know input information regularly. But you explain that if a caregiver gives us five minutes we need to save them 15. So talk to me about that rule of thumb in designing for AgeTech.
Kunal: And you can relate to this because you have been a caregiver. Your day is so packed. There are so many things that you are doing. And then on top of it, every caregiver program and intervention asks for your attention in addition. Every caregiver is already stretched thin. Caregiver interventions tap into the intrinsic reserves of caregivers. You think of it as a finite tank of fuel that will be used to care for the recipient, to care for themselves, to go to work, to manage your day-to-day. Now, when interventions layer on new devices, modules, surveys, check-ins, every new expectation of engagement, whether it's cognitive or emotional or administrative, spends from this finite budget. So the mismatch between short-term expectations and long-term gains is the key invisible barrier to impact. So to make this objective, when I work with caregiver interventions, I like to adopt this methodology called engagement load units. It's a very easy way to make this very objective. We measure the cost of an intervention or a new feature the same way clinicians measure medication doses. So an engagement load unit or an ELU is a currency of attention. Every intervention should set a cap for themselves for the weekly allowable ELUs that they need the caregiver to spend. There need to be ELU neutral trade-offs as well. So if an intervention adds a feature that requires expenditure of five ELUs, you're removing something else so that you keep it at a net zero. And also, ELUs are spent differently based on your equity considerations. You and I are great with technology. It might take us one ELU to finish this check-in survey. But let's say someone who is not comfortable with a smartphone or they have tremors because they have Parkinson's. Completing that survey on the phone, it's gonna be more difficult for them because of the tremors. So they may require three ELUs. So there needs to be this equity consideration in the design and UX of caregiver interventions as well. And I think this is the bare minimum set of considerations to keep in mind for UX and workflow optimized AgeTech.
Erin: I think that is a really, really cool concept. I like that a lot. But I think about like my mother versus me in the process of caring for my dad. And my mother projected that she wouldn't be able to use technologies because she'd been frustrated by them in the past. She was also skeptical about the value that they would deliver. So inherent views of one's own technical capacity and their level of optimism about the potential for value to be delivered can vary tremendously between people and that's even within just the same care team. But for many of the products we might have considered, adoption was necessary across the board for it to actually work, which is another consideration.
Kunal: So it is so natural for self-efficacy to be low at the beginning. And then what you said earlier makes so much sense. We overcomplicate onboarding into these interventions unnecessarily. Like, what are we doing by asking them about what race or ethnicity are you? Or like, what is your income range? What are we doing with that information? Why do we need that upfront? It is adding on to the ELUs upfront and it is eroding the self-efficacy which is already at a low right now. So onboarding is one of the most attention-requiring elements of an intervention
Erin: So you've consulted with a lot of AgeTech founders across the full arc from validation through go to market. What are the patterns that you see in the founders that are genuinely ready for outside help versus those that might approach you for help, but they're not actually ready for it?
Kunal: The strongest founders are the ones who can tell you exactly who they're building for and exactly what problem they're solving. And tech and AI just happen to be the most efficient way to solve it. So in my clinical days, patients would, I had a lot of patients who would come in with chronic pain and they would just ask for a refill of a prescription and the most difficult conversation invariably used to be, well, pain is a symptom of an underlying issue. It is not a sign that your body has painkiller deficiency And good AgeTech is no different. The problem statement, the pain points, the opportunity, they come first. Nobody's life is suffering from a deficiency of AI in their lives. Another signal is that the product does not try to outshine the day-to-day of the end user. It somehow tries to blend in and merge seamlessly with their lives as much as possible. As an example, there are so many really fancy, sophisticated, slick care coordination platforms available right now, but a vast majority of them cannot hold a candle to the family WhatsApp group. Right? I like to call this workflow a shadow workflow. And shadow workflows are here to stay. They're sticky, they're community owned, they're low friction. Don't fight it. So if you're trying and tapping into a problem that is already being solved by a shadow workflow, you try and respect the anchor tool and scope in the shadow to formal bridges upfront and not as an afterthought. Yet another signal. Founders are aware that the long-term adoption and utilization of AgeTech products is going to hinge heavily on the trust nodes and trust anchors in the community. These are the places that older adults and caregivers have already placed their trust. This is where they frequently go to. So getting buy-in from these... without hijacking the enclave, it's gonna be such a chain reaction of adoption. So this is not something that you can do only with technology. This is what requires relationship building. Then also becomes a part of your job. So it's not just creating the product and delivering it. You also need to actively engage in category creation and advocacy. And you need to be passionate about social justice in general. And then the most important, what I try to talk about a lot, what I try to advise on a lot is that the older adult and the caregiver are not a monolith. A 65 year old is not an 85 year old. A caregiver of a spouse is not a caregiver of a parent. Segmentation is important. Founders who do segmentation correctly find a lot of traction. And all of this is why you need to partner with a gerontologist. This is literally the job of a gerontologist. And this partnership allows you to do things right upfront and set your product up for success and in this at the same time help older adults and caregivers with a meaningful product.
Erin: Right. Like you said, don't fight the systems that are already in place, but instead learn to work with them. You have to understand what they are in order to do that. And there's a lot to learn. There are a lot of variations and permutations of This is in person. This person is 85 with cognitive decline. This person is 65 with mobility issues. I mean, completely different. spaces. And so I think all of those are really, really important insights. Thank you for sharing those. We've talked a little bit about the things that you're excited about with where the field is heading, but then also the places where AgeTech as a field could use more progress. I'm curious, think about where the field is heading. What keeps you up at night? What are we missing?
Kunal: I am afraid that we're innovating way too fast. Now, a fast velocity of innovation is not a problem in and of itself, but then you also have to consider the speed at which people's mindsets will adapt to a certain technology, how quickly people can... utilize and get accustomed to and familiar with a technology. Even right now, there's a very clear divide in the use of AI. There's very real research that shows that older adults who see AI as a core piece of marketing for an AgeTech product are actively dissuaded from using that product. But at the same time, there's a school of thought that there's a lot a higher adoption of AI and technology among this population. And then we have the mechanisms of funding and grants and systemic support. They move at a glacial pace. So it's going to be a long while before we're going to be able to use the funds available from the government to increase the adoption of these products. So the fact that there is this temporal mismatch impedes on the success of products. So I'm not saying that we should not be innovating fast. I'm saying we should be cognizant of this fact and at the same time building with this in mind.
Erin: Right, it's possible to move too fast for your own good.
Kunal: Exactly. That's exactly it. It's very important to, at the same time that you're innovating, invest time and money and resources into advocacy, like I said, because you think that it's not going to have a direct impact on your product, which may be true, but indirectly, it is setting you up for success. It is making sure that your talking about the right things, you're fueled by the right intentions and people know that and they can trust you and your product.
Erin: Right, right. There's a lot of room and opportunity for very satisfying careers helping people in this space. And I think the founders that are committed to helping from a big picture standpoint, are more likely to have the stamina to make it in this space. Maybe with the thing that they're currently trying, but maybe with an evolved version of that, that better meets the market where it is in a couple of years.
Kunal: Exactly. There's a lot of times when your product is ahead of its time, where the category is still nascent, which is why creating that category, making sure that you're explaining to people why they should pay attention to this problem that you're solving, that is also a part of your job.
Erin: Absolutely. In AgeTech in particular, the triggers, the active pain points, they spring up suddenly. It's not a thing that everyone likes to think about in advance. So the challenges of actually having awareness at the right time with the right people so that your product is even being considered when it's applicable are They're so much harder in this particular space than they are if you're doing a general consumer product.
Kunal: Certainly.
Erin: So I know you work on a lot of different things simultaneously as we covered with your introduction earlier, but I'd love it if you could share maybe one project that you're most excited to be working on right now.
Kunal: I'm so psyched and pumped and stoked and all of those superlative, excited words that I'm actually writing a book on AgeTech. Well, it's technically a book on AgeTech, but at its heart, it's a book about the ethics and equity of aging and caregiving, how it manifests in how we design and use technology for those individuals, I don't know if you've... I've seen my articles and posts on LinkedIn, but I'm not afraid to question the direction that AgeTech is going in right now. I want critically interrogate the assumptions that we hold to be true and the stereotypes we reinforce when we design AgeTech the way we do right now. Are we intentionally doing this? Absolutely not. But the hidden and unintended consequences and risks of AgeTech, warrant this critical discussion right now. Because with the rate that tech and AI are advancing, as we said, this is a conversation we need to be having right now. There is no undo button here. So I'm writing this book for the older adults and caregivers in my life, but I'm acutely conscious of the fact that it will be really useful for the creators of AgeTech as well. The people who buy it, the people who fund it, the people who evaluate it, as well as frontline staff. So I'm really excited about this project. It's been a long time coming and I'm enjoying the creative process.
Erin: That's so exciting. You certainly have the experience to contribute to such a piece. And I'm so interested in all of these topics. So I can't wait until the book comes out. This is something that I'm definitely going to have to read on day one. I'm glad that you're addressing these topics head on.
Kunal: Thank you, appreciate it a lot. I am very hopeful and optimistic that these are just blind spots right now. And once this information is available, it can really help change how we incorporate ethics and equity considerations into how we design technology. I don't think anyone has a malicious intent that, we're gonna marginalize someone. But understanding how technology inadvertently does that will allow us to better use it and mitigate that risk, eliminate it completely where possible. So I'm very optimistic about this.
Erin: One thing I'd like to ask is who you're looking to meet right now and where people can find you and your work if they're interested in finding you.
Kunal: So let me begin with who I'd love to meet right now. In general, everyone I love working with people, anyone who wants to chat, I'm always available for a chat, but in particular, AgeTech founders who really want a critical friend, not just someone who will agree to them and their idea. I love working with aging services leaders. like AAAs, ACL-adjacent organizations, regional health systems, navigating AI and tech procurement decisions. One of the blind spots that I've discovered is a lot of organizations do not have an AI strategy. Senior serving organizations do not have an AI strategy, and that's something that I can really help with. The voice of gerontologists is sorely missing from this discourse around AgeTech and I am resolute to not let all of my academic work, my experience and my expertise in this space sit on a shelf. I am keen on knowledge mobilization and sharing my ideas at events and conferences and symposiums and forums where we can collectively move the needle. And you can always find me on LinkedIn.
Erin: Thank you for all of that you're talking about the topics that are really, really important. I think that the founders that inquire with you should be ready to be challenged and it will only do them good. I'm so glad that you've made the decision to put your expertise and experience to use in this space. Again, I can't wait for the book.
Kunal: Thank you, you're so kind.
Erin: Thank you for taking the time to talk with me today and for helping me explore these ideas around dignity and the design discipline.
Kunal: It was a great conversation. Had so much fun.
Erin: I didn't too, and I could keep talking for ages. So for our listeners, Slide UX is a user experience design firm focused on brain change, AgeTech, and care. And you can subscribe to our newsletter at slideux.com slash newsletter to be sure that you don't miss the next episode.
Kunal: Thank you for having me.
Erin: I'm really curious about your training. So you started your career as a physician in India before moving to Canada and pivoting into digital health. What pulled you out of clinical practice?
Kunal: The reason I went into medicine was I loved working with people and my notion of what practicing medicine would be like was inspired by three shows, House, Scrubs and Grey's Anatomy. And turns out medical practice is not like any of these. But at its core, I loved working with people. And an integral part of medicine for me was patient education and rehab care and preventative measures. And there just was not a lot of time for that because I was practicing at a tertiary care center, also a publicly funded hospital where the masses go to. So while I got a lot of exposure, while I learned a lot in that time, I just didn't get to do the things that I really was passionate about. And through all of those years, the common invisible string that connected those experiences was the frustration that medicine treats episodes. Our health and specifically aging is such a continuous holistic experience. And we are structurally, by design, blind to what happens between those visits. So I really wanted to explore technology because it had this promise of patient safety and increasing access and improving the quality of care that we provide. But the pull towards tech was less about the tech itself and more about the temporality of our health. I wanted to really be able to impact not just that 1 % of the episodic care, but the 99 % that happens outside of the hospital or outside of the clinic. And I see that that's a pattern that exists even in Canada. We're transposing acute care models onto the chronic care needs of today. The acute care model worked really well in the 70s and the 80s. It increased our lifespan. But now that infectious diseases are no longer the leading cause of death, we now need to adjust how we approach healthcare so that we're able to treat the chronic conditions and control them a lot better. So I really think technology can play a pivotal and integral part in some of those things.
Erin: Right, there's so much opportunity. That's really compelling. So you've talked about long distance caregiving as the experience that really crystallized your commitment to the space of aging and care. Can you take me back to the stretch of your life where you were exposed to the long distance caregiving and how it shaped the work you do now?
Kunal: The second wave of COVID, I got a call from my mom that my grandmother has contracted COVID and my dad was still recovering from it. My mom had recovered from it and my sister was still going through the treatments and everything. And all three of us, my parents and myself, we're all healthcare practitioners, but still the coordination of the care that I was doing from Canada was chaotic. I had this newfound appreciation for air traffic control because it felt like I was doing something as important and involved and like moment to moment. And I could not help but think that caregiving is a lot of logistical labor as much as it is emotional labor. We have a lot of tools that serve the logistical labor, but not so much of the emotional labor. Around the same time, my grandmother was in the ICU and she was given a blood transfusion. She had an anaphylactic reaction and she was 81 at the time. And my mom and I were just bracing for the impact. I was trying to talk to my mom about, you know what, this is it. She would have wanted to go in peace. She would not have wanted really invasive procedures. I was providing a lot of emotional support, my mom and I were like constantly each other's caregivers almost. And then my grandmother snapped out of it and she recovered from it. And we're like, my gosh, that was, that was a whirlwind. That was like such a tornado of emotions and lots of logistics. I found myself constantly going back and forth with my priorities from like what is the decision that we're making with the treatment right now? And then at the same time, five years from now, how are we managing the estate planning and everything for my grandmother when she does eventually pass away? So it's a very telescoping phenomenon where you're constantly shifting your mindset from the here and now to the there and then, and all of this contributes to what I truly believe about caregiving is that the morphology of your caregiving really depends on multiple variables. The most important ones being presence and proximity. And to that effect, caregiving support needs to also shapeshift based on these unique caregiving contexts. It needs to be malleable, personalized, and multi-component. And this is one of the core principles I apply to how I approach, conceptualize and evaluate AgeTech.
Erin: One thing that your experience highlights is that because there is such a large logistical component to caregiving, that a lot of work really CAN be done remotely, because it is orchestrating. And while that's a disadvantage and it takes away certain information that you might have if you were able to be closer, it is very possible, especially with the tools that we have today. But you also highlighted the emotional weight of caregiving and how important the support that you all were able to provide to one another was in your situation. Every family has a different mix of personas, but I find that those that have support and fluidity between multiple people so that they can lean on each other, and collaborate on decision-making are at a huge advantage when it comes to caregiving, whether it is remote or local, because it is so difficult and it can be so heavy.
Kunal: You're so right. I think it's the differing perspectives or the divergent vantage points that we shared that contributed to a good caregiving experience almost because it's impossible for one person to see everything about one person all at the same time. So I have access to X, Y, and Z. My mom brings the A, B, and C. And then together we make decisions that ultimately honors of my grandmother's wishes. To your description about being able to do a lot of caregiving remotely, there's actually a lot of research that shows that the way men and women approach caregiving is fundamentally different. Women care for and men care about. This is obviously not, bulletproof, it obviously is variable, but in general, research shows that women engage in the relational care for the person and with the person, whereas men tend to have a perspective of caring about. So they get engaged in more of the instrumental tasks of caregiving, I don't believe that this is a hard boundary, but it does provide clues as to how AgeTech can use this information to market and promote their products to the caregivers.
Erin: Right. Another clue that you mentioned earlier caught my attention because it's something that I've heard in several podcast interviews that I've done, which is this concept that you did not see yourself as a caregiver. That seems to be a really, really common thing.
Kunal: It absolutely is. One of the things that I learned through Trualta was any caregiver intervention can only be as successful as how people see themselves. Do they see themselves as caregivers or do they see themselves as, ⁓ I'm just a good son or a good daughter or a good spouse? Because If you think about parenting, as an example, when you have the birth of a child, that marks a very clear and ceremonious transition into your new role of, I'm a dad now. But caregiving begins so gradually and it begins so incrementally. You might begin with, I'm just ordering groceries and I'm gonna drop them at your place. Before you know it, you're also managing the medication schedule, you're going to doctor's appointments with them, you're... advocating for them in those appointments. So because it's so gradual, people don't really realize that they are caregivers. And then there's the societal perception of what our roles are. Women are regarded as a natural nurturers. I have such a problem with that imposition. But because we have inherited that from society, what you do as very hardcore caregiving duties often get conflated with, you're just doing what you're supposed to do to be a good family member or a friend. So the self-identification of caregivers is a really really big barrier and because I learned this and I wanted to go deeper into it, I did a lot of research on it which led to my TED talk on this topic and it just the title is as self-explanatory as it could be, Did You Know You Are a Caregiver? Because ultimately, caregiving is going to touch every single one of us. And it is really important and critical that we acknowledge our caregiving roles. Only then can we actually advocate for ourselves and access the benefits and supports that we're trying to create.
Erin: And I can understand how a son who's mowing the yard for his grandmother doesn't necessarily consider that a caregiving task, but it is, right? It's all just about how you think of it. Okay, so I want to set this up with a story from my own life. My dad had advanced Alzheimer's disease and he was really agitated when he had to go to the nursing home after a seizure and he wanted to fiddle with the mechanics of his wheelchair, which can be risky. We were worried that he was going to pull a screw out or something like that. And when we went looking for fidget products to help with his agitation, almost everything that we found was primary colored, oversized, very much like toddler design. And that's I think the physical version of something that we see happen a lot in software for older adults. Can you walk me through this pattern? How would you describe that?
Kunal: First of all, I'm so sorry that you weren't able to find proper appropriate devices, but that is such a clear example of how we have internalized the stigma surrounding dementia and cognitive decline. It is an asinine extrapolation that if someone has impairments to their cognitive function, it means that their agency and personhood is diminished. And the origin of this can be traced back to the obsession of our society with productivity and youth. As the very famous satirical song goes, you're only as hot as your last hit, so if you're not actively contributing to society's capital or productivity, if you're not actively the hamster on the wheel producing your words, and paying the civic rent for the space you occupy in our society, you're treated as less than. And that is what leads to the infantilizing primary color design. And I've seen this emerge in a lot of different ways in software in four main areas, in four main shapes and forms. First is the visual design, right? Like you'll see oversized buttons, a very primary palette or... cartoon iconography and we're showing this to people who may have been professors for 55 years of their life. It is insulting. The second is language. It's very second person diminutive. There's a lot of exclamation points. There's a lot of baby talk reassurance. Great job. And it is ridiculous. Then the third is more of the interaction or the interface of the software where you see gamification, but I'm such an advocate and a proponent for gamification, but then when it translates to rewards and stars and confetti and great job, that is not gamification. That is lazy. And the fourth then becomes form factor. This is the device. Essentially announces ⁓ to the room that, hello, I am actually frail or I have cognitive impairment. So it manifests in these four ways. And I have a hypothesis that this is symptomatic of a deeper underlying issue. Infantilization is what AgeTech manifests when the creators have not talked to enough users, it becomes a substitute for understanding like a large enough sample. Your parents and a few friends is not a robust sample size.
Erin: I love the insight that you just provided about the way that society applies value to people. For me, it's really personal. I carry a genetic mutation that will cause Alzheimer's disease and knowing that that might happen, especially with my particular background, which is always being, you know, the person who made good grades, who led a company, who was all of the value came from my intellect. And knowing that that someday won't be there really forced me to reckon with my own biases around identity and the value of a human. And I'm glad it did. I feel like that reckoning allowed me to correct some things and watching my dad decline with Alzheimer's showed me that he was every bit as worthy to me in his final days as he had been when he was a super productive citizen of the world. So I love the way that you attribute the cause of that and the opportunity that we have to correct those four areas of infantilization.
Kunal: But I actually have a follow-up question to you. How are you planning on preparing for the future where you may have cognitive impairment?
Erin: Yeah, there is a huge question and there's so many different avenues of answering it. One of the primary things is by participating in a clinical trial that aims to prevent the onset of Alzheimer's disease because that would be ideal. But at the same time, really preparing things like estate planning, advanced directives, all that good stuff, to try and make sure that should it happen that I leave as little of a burden as I possibly can to my family knowing that there's only so much that you can do, right? So like I could just, I could talk for hours and hours about all of the ways to try and prepare. But Even though in my case, it's more of a certainty due to these really rare genetic mutations, I think that this segment of people who need to prepare, for cognitive decline is a growing segment because we can now do things like genetic testing and biomarker testing. And we're not really entirely prepared for it because up until now it's been like, hope that doesn't happen to me. And I think for the most part, you know, let's not think about it because it's hard to imagine.
Kunal: I'm glad you're being so proactive about it. I'm sure it must have felt like a shock when you found out about it.
Erin: Absolutely. Yeah. And it was a really crazy situation too, I tried to use my 23andMe data to get the answer before I talked to a professional genetic counselor. And 23andMe isn't FDA approved for those things, but you can access your raw genomic file. I did that. And I lived for about four months thinking I didn't carry the same mutation that... we learned that my dad had and then learned that I did. So real whiplash. But it's changed the trajectory of my life and given me a lot of purpose. And that kind of leads us to today's conversation. Something that you just said caught my attention. I know that this is something that you're really big on, that there's an opportunity to use gamification. for older adults, but it's not the form of gamification that we typically see. Do you want to talk a little bit more about that?
Kunal: Yes, gamification is applied human psychology at its core, right? Our motivation is very hardwired and calibrated and conditioned by the characteristic incentivization. Somewhere the purpose and goal of gamification got lost in translation from, hey, let's make healthy habits stick to let's make this playful. And therein lies my pet peeve. Apart from the fact that stars and rewards and confetti are juvenile, they're completely oblivious to the fact that adults have self-directed intrinsic motivation. If your product is good enough, you most likely do not need to resort to cheap gimmicks. But let's talk about what sophisticated gamification could look like. By applying game-inspired design, we give end users a scaffold that support habit building and skill practice and resilience, and they can transform small wins into sustainable behaviors. There's a few mechanisms that I'm particularly partial to. One is progression systems, like progress trackers that make effort visible and give you a clear idea of how you're doing on a scale or like what you still need to do. Then there's challenges and goals that drive consistency. Small structured goals, incrementally challenging but never prohibitively difficult. This is actually the theme or the motto of Lumosity which has brain training games and they've done gamification super well. Then there's simulations that build real-world skills like an acted out scenario or a role-play practice. And there's social elements or social play like leaderboards that reduce isolation by low-key opening you up to a community of other people in similar situations like yourself. So the idea is let's use game-inspired UX elements. It is not, let's make a game. Very different interventions.
Erin: I think that fitness apps and wellness apps offer good models for sophisticated and respectful patterns in gamification, things like Strava or Oura, treat the user like the adults that they are while using some of those game mechanics to encourage good behaviors.
Kunal: Exactly. When you see that you're supposed to do 7,500 steps, or that's a goal that you set for yourself, and then you're still missing just 2,000 steps at 7 p.m., there's something motivating about it. There's something that tells me, oh, you know what, I'm just gonna go for a walk. Maybe I'll get ice cream when I'm out, But then I'm still completing my steps. I think that is what, as you said, Apple, Strava, they do really well. And FitBit.
Erin: Yep, that's right. And on the topic of fitness apps, wearables and alert systems are another area in AgeTech that's really hot. And you've pointed to medical alert bracelets and wandering alarms that are so clunky that people refuse to use them. Flip side, of course, visually stigmatizing tracker is the invisible one, something like a GPS install or some sort of passive monitoring, maybe an ambient sensor. But in that case, the person who's being tracked may not be consistently aware of the fact that they're being tracked. So where do you land on this spectrum of options from really overt tracking to covert?
Kunal: This is a very nuanced question and there's a couple of layers that we need to get into before we get to that particular question. So first we must begin with what is the purpose of the tracking? Why are we using it? Is it because of wandering? Is it because of a fall risk? Is it for the caregivers peace of mind? Is that reason symptomatic of something else? I could be hungry, I could be stressed, I could be disoriented, I could be bored, I could, I might be in pain, I might have anxiety. There's so many reasons that could ultimately manifest as wandering. So when we use passive tracking, does that substitute for this investigation or relational care? Once we've answered that, then the second thing we need to think about is what happens when the tracking reveals something untoward, right? Like, is there a clear action-oriented pathway? Are there any distinct next steps that we have in mind? As an example, I get an alert that my watch has detected abnormal heart rhythm. What's my game plan now? How do I weed through the false positives? What do I do if there has in fact been a fall? Without these next steps and considerations, passive tracking is just noise under the thin veil of false reassurance. And then the third, is overt versus covert. I'm in general not a fan of overt clunky devices that basically just label the person as soon as they enter the room that there's some kind of monitoring that's happening with them. People most likely will not consent to wearing the diagnosis on their wrist or around their neck. Now, having said that, I'm not in general against passive monitoring. However, the caveat is there needs to be explicit ongoing renegotiated consent and it needs to have a lot of guardrails in place. There has to be minimal monitoring by default. It should be geofenced. So it must be active only in a certain place or must not be active in a certain place like your home. It should be time-based instead of this constant surveillance. And then the tracking needs to be part of a broader care plan. It's not something that's isolated. The care plan should identify distinct prevention and response roles when you find something through the tracking. Then you need to have like a dignity mode. As an example, when you're going for a walk with someone or at night or at private times, you don't need that tracking. And then most importantly, arguably, it needs strong data governance. How is the data stored? How is it retained? Who has access and so on and so forth. So there's a lot of thought that needs to be put into wearables and overt and covert monitoring.
Erin: You know, the number of times that I've found myself in a room of product innovators who have gotten really excited about data that could be dashboarded is just way too many to count. I don't know what it is about the temptation to dashboard the data, but it's like, we could put this on a dashboard and... The question is always "Cool. We can invest in that. And then what are we going to do with it?" And that's almost always the harder part of the question where it turns out that all the data does is it exposes the need for a plan on the flip side. And the work to establish that plan is like way harder than the dashboard itself. It's a temptation that product teams from all industries seem to have.
Kunal: It's, whenever-- there's a Beyonce song, I don't remember the exact lyric, but it's like, put a ring on it. And that ring is a metaphorical like dashboard ring for me. If you really like it, put a ring on it. It actually has a detrimental impact too, right? Because it, it then engages the end user in profiling. Like, If I have a high risk of falls, as an example, I'm gonna be monitored differently. There's gonna be more surveillance, there's gonna be more treatments, there may be like a different treatment plan, so to say, and it leads you into this rabbit hole of profiling and stereotyping.
Erin: Right. And it may not result in valuable changes to a person's outcomes. So going back to that concept of ongoing consent for monitoring, you've talked about consent thresholds and how they get murky as cognition changes. I think this is really, really important because It's so hard to know the moment or moments at which a person is of the capacity to provide consent if they're dealing with cognitive decline. So in your view, what does meaningful consent, where does it live for someone with a progressive cognitive condition?
Kunal: I am of the firm belief that consent is not a single signature on day one. It is this contractual relationship between the person who signs it and the person who is collecting data or providing a service that must be renewed as cognition changes because the phenomenon of consent decay is so important and pertinent when we're dealing with someone with dementia. There should be three layers or three levels to this, the most baseline is anticipatory consent. What the person agrees to when they're able to articulate their preferences clearly. Then there's supported consent and this is the moment to moment consent that is possible with scaffolding even as cognition declines. And then there's substituted judgment. This is what someone who knows a person really well would say that they would have wanted. This is again shaky ground, right? Because let's say I know my mom and I know that she would not want aggressive treatment. But I know this outside of the context where she actually has to make that decision. So let's say that we are at a point, God forbid, where that decision needs to be made and I go by my perception of my mom from back then where she would not have wanted it, but then in the moment, maybe she did want it. There is no way for me to know. So this is very fluid. This is very shaky ground and the most difficult one to maneuver around. This is why we ask people with dementia to have very thick directives set up so that it does not put the caregivers in a place where they will have to make the decisions without any knowledge of what the person would have wanted. Where most AgeTech companies would compromise on is they collapse all of these into like a single checkbox at onboarding. And it is often signed and subscribed without ever revisiting that again. And a once given consent is taken as a permanent yes and it outlasts the very capacity that made that consent possible. I do love the EU and the GDPR direction on this. It requires that withdrawal must be as easy as giving consent. There's a cancel now button that is mandatory in Germany and in clinical practice, we advocate using like a sliding scale of capacity, decision by decision. It's not a binary and AgeTech needs to inherit that pattern. Right now, I don't think this is being done well in our field.
Erin: The field of medical ethics is very well established. And although that doesn't mean that every ethical question has been answered, there's constantly new ones popping up, but it is a whole space. And the field of ethics around technology is in its earliest stages. And it's not something that a lot of attention is paid to. But when you talk about this episodic intervention structure and the fact that technology is what might hold the other 99 % of these interactions, it really highlights how ethics should need to come closer to one another, right?
Kunal: Exactly. Ethics is such a it's a right versus right a consideration and the verdict you reach in my case would not make sense in your case. It's so individual, it's so unique, it's so close to everyone's lived realities that it's impossible to have like this one defined answer which is why you need ombudsman in the context of hospitals, in the context of AgeTech, because the ombudsman will allow you to see things that you're currently not seeing.
Erin: Going back to the emotional weight of caregiving, I found that at the end of my dad's life, it seemed like the day was filled with decisions that were rooted in what would he want at this particular moment. And it's incredibly heavy to navigate that. But then also the metaphor you provided of bouncing between the here and now and future planning as a caregiver. or as an individual contemplating their own mortality. Watching my dad's journey through the end of life filled me with ideas for what I want to define for my own future. But at the same time, there are so many possible splits and permutations of what one's future might hold that we could probably spend our entire lives documenting what we would want in each case only to have our our wants changed the next day, you know?
Kunal: Absolutely. It's fascinating, it's complex and it's ongoing.
Erin: Mm-hmm. Yeah. I'm curious if a founder came to you tomorrow and they were building a passive monitoring tool for someone with dementia. What questions do you think that founder should answer before they start building the
Kunal: So who uses this product and who purchases it? The user and buyer split needs to be very explicitly defined upfront. Second, what does the person being monitored gain? Not the family, not the healthcare system, not the providers. What does a person whose home and body this device lives on get out of it? And if you cannot answer that question without using the word safety, you have not designed for them. You have designed around them. And then what's your kill switch? If the person no longer wants to use that device, what are the mechanisms to adjust? Is it a binary yes and no thing or are there different levels of usage that are possible? It should be around data. How do you handle the data being collected? Governance in AgeTech is hard. It is taken way too lightly right now, but it needs some real work put into it upfront.
Erin: You've mentioned in the past that the best design keeps users off the platform. And Hinge is a great example of an app that says it's designed to be deleted. Love that. So can you walk me through how the best designs in AgeTech will keep users off the platform?
Kunal: What a heartwarming tagline for Hinge, right? ⁓ It wants to make itself redundant. I think the same applies to AgeTech very clearly because the basic core of an AgeTech product is to strengthen the self-management skills of the individual. Now, self-management essentially means that you're able to regulate your emotions, thoughts and behaviors. And with respect to health, it involves five things. Problem solving, taking action, making decisions, partnering with providers and accessing community resources. This is a framework I have not created. This is a framework that has been created by Dr. Lorig and Dr. Holman, excellent pioneers. Now, AgeTech interventions either address one or more of these tenets directly, like skills-based training programs that help older adults adapt their nutrition to better control their diabetes, or the interventions replenish their confidence and self-efficacy. Self-efficacy is the internalized belief that, I can do this. I can manage this. And an example of this is gonna be peer support groups that connect you with a community of support. Now, this does not directly help you manage your condition, but it gives you a good time. It gives you the support from these other people and... It improves your self-efficacy, which implicitly improves your self-management skills. Either way, the goal of an AgeTech product is to help the end user get there, to make itself redundant. Teach the skills, connect them with the people. That said, the goal is not to optimize the product to keep the users on the platform. It is to deliver the user to a reality where they don't need the product at all. Dissonance in goals is oftentimes causative to overly complicated UX. Now, of course, self-management and self-efficacy are not linear by any means. There may be a new diagnosis or maybe a new symptom. And this is when it's natural that the users will go back to the product, but only if the initial appraisal of the product was positive. So this is where ambitious and overzealous tactics to maximize user attention in the first place might backfire because they turned the user off. And I get why that happens. This is a business model problem, more than a design problem. AgeTech revenues structured around continued use. So to incentivize push against design philosophy. But this is so clearly important to have the vision to keep users off the platform.
Erin: So I think that it can be oftentimes difficult for businesses to acknowledge that the reality that a decline in usage can mean that the needs have been met and to architect a business that works even when that's the case. You've talked about the exchange of value that's necessary. And I think that this is particularly true for this overwhelmed, stretched caregiver. And I believe that in the past, you've worked on caregiver education platforms where features like frequent check-ins assume that users the time to log in and and you know input information regularly. But you explain that if a caregiver gives us five minutes we need to save them 15. So talk to me about that rule of thumb in designing for AgeTech.
Kunal: And you can relate to this because you have been a caregiver. Your day is so packed. There are so many things that you are doing. And then on top of it, every caregiver program and intervention asks for your attention in addition. Every caregiver is already stretched thin. Caregiver interventions tap into the intrinsic reserves of caregivers. You think of it as a finite tank of fuel that will be used to care for the recipient, to care for themselves, to go to work, to manage your day-to-day. Now, when interventions layer on new devices, modules, surveys, check-ins, every new expectation of engagement, whether it's cognitive or emotional or administrative, spends from this finite budget. So the mismatch between short-term expectations and long-term gains is the key invisible barrier to impact. So to make this objective, when I work with caregiver interventions, I like to adopt this methodology called engagement load units. It's a very easy way to make this very objective. We measure the cost of an intervention or a new feature the same way clinicians measure medication doses. So an engagement load unit or an ELU is a currency of attention. Every intervention should set a cap for themselves for the weekly allowable ELUs that they need the caregiver to spend. There need to be ELU neutral trade-offs as well. So if an intervention adds a feature that requires expenditure of five ELUs, you're removing something else so that you keep it at a net zero. And also, ELUs are spent differently based on your equity considerations. You and I are great with technology. It might take us one ELU to finish this check-in survey. But let's say someone who is not comfortable with a smartphone or they have tremors because they have Parkinson's. Completing that survey on the phone, it's gonna be more difficult for them because of the tremors. So they may require three ELUs. So there needs to be this equity consideration in the design and UX of caregiver interventions as well. And I think this is the bare minimum set of considerations to keep in mind for UX and workflow optimized AgeTech.
Erin: I think that is a really, really cool concept. I like that a lot. But I think about like my mother versus me in the process of caring for my dad. And my mother projected that she wouldn't be able to use technologies because she'd been frustrated by them in the past. She was also skeptical about the value that they would deliver. So inherent views of one's own technical capacity and their level of optimism about the potential for value to be delivered can vary tremendously between people and that's even within just the same care team. But for many of the products we might have considered, adoption was necessary across the board for it to actually work, which is another consideration.
Kunal: So it is so natural for self-efficacy to be low at the beginning. And then what you said earlier makes so much sense. We overcomplicate onboarding into these interventions unnecessarily. Like, what are we doing by asking them about what race or ethnicity are you? Or like, what is your income range? What are we doing with that information? Why do we need that upfront? It is adding on to the ELUs upfront and it is eroding the self-efficacy which is already at a low right now. So onboarding is one of the most attention-requiring elements of an intervention
Erin: So you've consulted with a lot of AgeTech founders across the full arc from validation through go to market. What are the patterns that you see in the founders that are genuinely ready for outside help versus those that might approach you for help, but they're not actually ready for it?
Kunal: The strongest founders are the ones who can tell you exactly who they're building for and exactly what problem they're solving. And tech and AI just happen to be the most efficient way to solve it. So in my clinical days, patients would, I had a lot of patients who would come in with chronic pain and they would just ask for a refill of a prescription and the most difficult conversation invariably used to be, well, pain is a symptom of an underlying issue. It is not a sign that your body has painkiller deficiency And good AgeTech is no different. The problem statement, the pain points, the opportunity, they come first. Nobody's life is suffering from a deficiency of AI in their lives. Another signal is that the product does not try to outshine the day-to-day of the end user. It somehow tries to blend in and merge seamlessly with their lives as much as possible. As an example, there are so many really fancy, sophisticated, slick care coordination platforms available right now, but a vast majority of them cannot hold a candle to the family WhatsApp group. Right? I like to call this workflow a shadow workflow. And shadow workflows are here to stay. They're sticky, they're community owned, they're low friction. Don't fight it. So if you're trying and tapping into a problem that is already being solved by a shadow workflow, you try and respect the anchor tool and scope in the shadow to formal bridges upfront and not as an afterthought. Yet another signal. Founders are aware that the long-term adoption and utilization of AgeTech products is going to hinge heavily on the trust nodes and trust anchors in the community. These are the places that older adults and caregivers have already placed their trust. This is where they frequently go to. So getting buy-in from these... without hijacking the enclave, it's gonna be such a chain reaction of adoption. So this is not something that you can do only with technology. This is what requires relationship building. Then also becomes a part of your job. So it's not just creating the product and delivering it. You also need to actively engage in category creation and advocacy. And you need to be passionate about social justice in general. And then the most important, what I try to talk about a lot, what I try to advise on a lot is that the older adult and the caregiver are not a monolith. A 65 year old is not an 85 year old. A caregiver of a spouse is not a caregiver of a parent. Segmentation is important. Founders who do segmentation correctly find a lot of traction. And all of this is why you need to partner with a gerontologist. This is literally the job of a gerontologist. And this partnership allows you to do things right upfront and set your product up for success and in this at the same time help older adults and caregivers with a meaningful product.
Erin: Right. Like you said, don't fight the systems that are already in place, but instead learn to work with them. You have to understand what they are in order to do that. And there's a lot to learn. There are a lot of variations and permutations of This is in person. This person is 85 with cognitive decline. This person is 65 with mobility issues. I mean, completely different. spaces. And so I think all of those are really, really important insights. Thank you for sharing those. We've talked a little bit about the things that you're excited about with where the field is heading, but then also the places where AgeTech as a field could use more progress. I'm curious, think about where the field is heading. What keeps you up at night? What are we missing?
Kunal: I am afraid that we're innovating way too fast. Now, a fast velocity of innovation is not a problem in and of itself, but then you also have to consider the speed at which people's mindsets will adapt to a certain technology, how quickly people can... utilize and get accustomed to and familiar with a technology. Even right now, there's a very clear divide in the use of AI. There's very real research that shows that older adults who see AI as a core piece of marketing for an AgeTech product are actively dissuaded from using that product. But at the same time, there's a school of thought that there's a lot a higher adoption of AI and technology among this population. And then we have the mechanisms of funding and grants and systemic support. They move at a glacial pace. So it's going to be a long while before we're going to be able to use the funds available from the government to increase the adoption of these products. So the fact that there is this temporal mismatch impedes on the success of products. So I'm not saying that we should not be innovating fast. I'm saying we should be cognizant of this fact and at the same time building with this in mind.
Erin: Right, it's possible to move too fast for your own good.
Kunal: Exactly. That's exactly it. It's very important to, at the same time that you're innovating, invest time and money and resources into advocacy, like I said, because you think that it's not going to have a direct impact on your product, which may be true, but indirectly, it is setting you up for success. It is making sure that your talking about the right things, you're fueled by the right intentions and people know that and they can trust you and your product.
Erin: Right, right. There's a lot of room and opportunity for very satisfying careers helping people in this space. And I think the founders that are committed to helping from a big picture standpoint, are more likely to have the stamina to make it in this space. Maybe with the thing that they're currently trying, but maybe with an evolved version of that, that better meets the market where it is in a couple of years.
Kunal: Exactly. There's a lot of times when your product is ahead of its time, where the category is still nascent, which is why creating that category, making sure that you're explaining to people why they should pay attention to this problem that you're solving, that is also a part of your job.
Erin: Absolutely. In AgeTech in particular, the triggers, the active pain points, they spring up suddenly. It's not a thing that everyone likes to think about in advance. So the challenges of actually having awareness at the right time with the right people so that your product is even being considered when it's applicable are They're so much harder in this particular space than they are if you're doing a general consumer product.
Kunal: Certainly.
Erin: So I know you work on a lot of different things simultaneously as we covered with your introduction earlier, but I'd love it if you could share maybe one project that you're most excited to be working on right now.
Kunal: I'm so psyched and pumped and stoked and all of those superlative, excited words that I'm actually writing a book on AgeTech. Well, it's technically a book on AgeTech, but at its heart, it's a book about the ethics and equity of aging and caregiving, how it manifests in how we design and use technology for those individuals, I don't know if you've... I've seen my articles and posts on LinkedIn, but I'm not afraid to question the direction that AgeTech is going in right now. I want critically interrogate the assumptions that we hold to be true and the stereotypes we reinforce when we design AgeTech the way we do right now. Are we intentionally doing this? Absolutely not. But the hidden and unintended consequences and risks of AgeTech, warrant this critical discussion right now. Because with the rate that tech and AI are advancing, as we said, this is a conversation we need to be having right now. There is no undo button here. So I'm writing this book for the older adults and caregivers in my life, but I'm acutely conscious of the fact that it will be really useful for the creators of AgeTech as well. The people who buy it, the people who fund it, the people who evaluate it, as well as frontline staff. So I'm really excited about this project. It's been a long time coming and I'm enjoying the creative process.
Erin: That's so exciting. You certainly have the experience to contribute to such a piece. And I'm so interested in all of these topics. So I can't wait until the book comes out. This is something that I'm definitely going to have to read on day one. I'm glad that you're addressing these topics head on.
Kunal: Thank you, appreciate it a lot. I am very hopeful and optimistic that these are just blind spots right now. And once this information is available, it can really help change how we incorporate ethics and equity considerations into how we design technology. I don't think anyone has a malicious intent that, we're gonna marginalize someone. But understanding how technology inadvertently does that will allow us to better use it and mitigate that risk, eliminate it completely where possible. So I'm very optimistic about this.
Erin: One thing I'd like to ask is who you're looking to meet right now and where people can find you and your work if they're interested in finding you.
Kunal: So let me begin with who I'd love to meet right now. In general, everyone I love working with people, anyone who wants to chat, I'm always available for a chat, but in particular, AgeTech founders who really want a critical friend, not just someone who will agree to them and their idea. I love working with aging services leaders. like AAAs, ACL-adjacent organizations, regional health systems, navigating AI and tech procurement decisions. One of the blind spots that I've discovered is a lot of organizations do not have an AI strategy. Senior serving organizations do not have an AI strategy, and that's something that I can really help with. The voice of gerontologists is sorely missing from this discourse around AgeTech and I am resolute to not let all of my academic work, my experience and my expertise in this space sit on a shelf. I am keen on knowledge mobilization and sharing my ideas at events and conferences and symposiums and forums where we can collectively move the needle. And you can always find me on LinkedIn.
Erin: Thank you for all of that you're talking about the topics that are really, really important. I think that the founders that inquire with you should be ready to be challenged and it will only do them good. I'm so glad that you've made the decision to put your expertise and experience to use in this space. Again, I can't wait for the book.
Kunal: Thank you, you're so kind.
Erin: Thank you for taking the time to talk with me today and for helping me explore these ideas around dignity and the design discipline.
Kunal: It was a great conversation. Had so much fun.
Erin: I didn't too, and I could keep talking for ages. So for our listeners, Slide UX is a user experience design firm focused on brain change, AgeTech, and care. And you can subscribe to our newsletter at slideux.com slash newsletter to be sure that you don't miss the next episode.
