The Firefly Concept: Dementia Pain or Panic?

A man raises a glass for two people he's loved for sixty years. A woman stands in a car park, looking up at the sky, saying, "I don't know what you're trying to tell me." A baby cries, and no one knows why.

None of it looks broken. But something is being lost in translation.

This episode introduces The Firefly Signal, an original biomimetic design concept inspired by one of nature's simplest communication systems.

It sits inside the quiet, relentless task of trying to read someone who can't tell you what they need. Of making calls with incomplete information. Of choosing a direction and not knowing if it's right until much later, when you're already tired, and they're already more distressed.

Using a biomimicry lens, Pia explores what happens when signals blur. Not just in dementia care, but at both ends of life, before language arrives and as it starts to leave.

From the rhythm of fireflies to the people trying to read the room, this episode explores the job carers at home are actually doing.

Not to diagnose. Not to cure. Just to find a better first move.

Because when something's wrong, and you don't know what kind of wrong it is, where you start matters.

Nature owns the patent. We get to copy it.

Biology: Fireflies use bioluminescent light patterns to communicate through rhythm, allowing individuals to recognise meaningful signals even in low visibility.

Principle: When direct communication breaks down, meaningful changes become easier to detect when there is a clear baseline and a recognisable pattern.

Application: The Firefly Signal re-imagines how carers might recognise whether distress is more likely to be physical or environmental, helping guide a better first move when someone can no longer explain what they need.

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Created and hosted by Pia Williams
Clever by Nature. Feral by Design.

Transcript

SPEAKER_00 0:05

Have you ever been with someone with dementia when something clearly isn't right? They're agitated, unsettled, you're trying to work out is this pain? Is this anxiety? Is it just the time of day, the noise, the light? And you can feel that frustration building on both sides. And you're making that call in real time with someone you care about, care for, who can't tell you. That's not a failure of attention. That's a design gap. What if nature could help us nurture? My parents just celebrated their 60th wedding anniversary. A big group of us around a really long table, many from the original 1960s wedding party. Which is amazing when you think about it. All mid-80s, still standing, some better than others, still raising their glasses. The day was super steamy, classic humidity post-rains vibe. The restaurant was loud with lots of other groups of long lunch diners. There was music and laughter, and at one point a shark alarm went off at the beach behind the dunes. All very on brand for our family get-togethers. I was seated next to one of my parents' oldest friends. I'll call him Tom. He has dementia. On his other side was another family friend. Let's call her Kate. She knows Tom really well and was quietly, expertly keeping him included, involved. I'd never really spent time with someone with dementia before. Not properly. So I just followed Kate's lead, kept it light, stayed in the moment. Then the French fries arrived, in a bowl with those giant tong things. You know the ones in the fancy restaurant tongs that look like they belong in an operating theatre. Opposite me was my sister-in-law, highly skilled nurse, steady hands for a living. And for the life of her, she could not get those tongs to cooperate. Without thinking I teased. Look at you over there. Trained for precision, defeated by chips. We all laughed. Tom laughed along, too. And then it was his turn with the tongs. I felt terrible. He clearly struggled, and I felt the joke slide into completely tone-deaf territory. He was getting a little frustrated. At least, I think that's what was getting to him. So I just leaned in, put my hand straight into the bowl, and theatrically dumped a mitful of those chips on my plate and laughed at myself. He grinned, and then he did the same. We grinned at each other like Cheshire cats. It was this tiny moment of rebellion against the whole white tablecloth restaurant vibe. Sometime later I noticed Kate lean over and quietly prompt Tom to stand. He stood, he raised his glass, and led the toast exactly as he had all those years ago. For two people he'd loved for more than half a century. The whole table cheered, and just for that moment, just for a nanosecond, I felt like we'd all gone back to that same original moment 60 years before. Some of us, obviously, for the very first time. Anyway, later, walking back to my car, I heard a baby full-on screaming, like the kind that makes you say, Oh yes, please, can I sit right next to you on a long haul flight? said no one ever. You know what I'm talking about. I looked at the vehicle behind mine, and there was this woman standing, door open, trying to console her baby. And the last thing I noticed was her look straight up at the sky. Her shoulders were almost heaving, and she said just loud enough for me to hear through my window, I don't know what you're trying to tell me. And I'm sure all the mothers listening right now will know that moment a thousand times over. Driving home, eyes on the road, thoughts on the day, then my mind pulled on this loose thread, on Tom and on the mother with the baby. Two moments in the same day. A baby who hasn't found words yet, and an older man whose words are leaving him. And the people beside them doing something quietly, exhaustingly extraordinary with almost no tools. Reading faces, interpreting restlessness, making calls with incomplete information and even experience, all under pressure. Often alone. Because that's what home care actually is. It isn't a sophisticated system. It's usually one person, a daughter, a partner, a friend. And the weight of it isn't just physical, it's the relentless cognitive load of trying to read someone who can't tell you what they need, of making the wrong call and not knowing it was wrong until 20 minutes later when nothing has helped and you're both even more distressed than when you started. The question that kept surfacing wasn't dramatic, it was just when something's off, when someone is unsettled and you don't know why, where do you even start? You know, do you adjust the environment? Do you dim the lights? Do you reduce the noise? Change the room? Or is this more physical? Are they uncomfortable? Are they in pain? Because those two paths lead to completely different directions. And going down the wrong one first doesn't just waste time, it costs something. It costs the carer, it costs the person being cared for, it adds to the distress it was trying to solve. Give pain meds to someone in emotional distress, and that can make things worse. Miss actual pain because you think someone's just a bit stressed out. I mean that's some suffering right there. When I started speaking to people working in this space, here's what really surprised me. Of the 55 million people living with dementia worldwide, half experience pain every day. It's actually a frequent symptom of this condition, but it's completely overshadowed by the memory loss that everyone talks about. Here's what makes it so hard. Many people with dementia lose the ability to show pain the way we'd recognize it. No wincing, no grimacing. What's left is this acting out, this agitation and negative behaviors and withdrawal. Behaviors that look exactly like anxiety, frustration, or just having a bad afternoon. The signals all get blurred into one black hole of distress. And untreated pain makes everything even worse. They withdraw further, and that means carers have even less to read. Even people who can still speak, studies show many can't reliably self-report pain. You can't just ask and trust the answer. And you know what? Pain is only part of what needs reading. Alongside it, you get the full emotional landscape of someone losing themselves, every bit of it landing on the carer to interpret alone and in real time. This is a lot. One of the people I spoke to, she's a daughter caring for a father at home. She said she's getting to the point where she's not sure she can keep going. I asked her whether she could tell when he was in pain. She said, No, that's exactly what makes it so hard. I have no idea. Wearables that track stress already exist. Garmin, Apple Watch, or a ring. They're tracking heart rate variability, movement, skin response, those sorts of things. And some of them are doing it pretty well. But they're built for one thing. A person who's monitoring themselves, someone who can look at their wrist and decide what to do next. They weren't built for this, for someone who can't interpret their own data, for the person beside them trying to read the room with no signal at all. And that's the gap. It's not traumatic, it's just quietly exhausting, meaningful. From other work, I know that separating pain from anxiety in terms of signals is still incredibly difficult. While that's being solved, there's a smaller space here, but it still matters. Helping carers at home navigate that moment. So, the Firefly. Not the flashiest creature I've brought to this show, some might say. Not me, love it. Small beetle, warm nights, and on the surface, seemingly not much to it, just a light that blinks. But of course, there's more to it than that. Each species has its own light fingerprint. The number of flashes or the duration and the pause between them. Even the colour. Yellow, green, orange, each one is distinct. A signature so reliable that in total darkness, across a field of, I know, hundreds of different species, all blinking at once, you can find your own kind. And in some species, thousands of them gather in the same trees, and a synchronized pulse emerges from it. So in total darkness, thousands all pulsing to the same rhythm at once. Nobody leads it, they just synchronize. Typically, the male flies around broadcasting their signature. And the females sit on the foliage below. She's not watching for the brightest flash or the loudest signal. She's watching for the rhythm that matches hers. And that's the signal. So these twinkle, twinkle little rock stars use rhythm to signal. Very low-energy system. Doesn't disrupt the world around it, sends messages by varying the rhythm from its baseline. Now, this language evolved for mating, sure. Finding your own kind in the dark. That's their brief, not ours. But the underlying strategy, that is game on for us. Rhythm carries meaning. A known pattern makes deviation visible. And you don't need more information, you just need to know what normal looks like. The fireflies use it to find their own in the dark. We can steal it to help carers find their way in a different kind of dark, a little more easily. Humans don't read rhythm, they feel it instinctively. Faster than they can read charts and data. Instinct is faster than analysis, especially under pressure. So we borrow that. Not to diagnose, not to monitor, just to point us. And we do it in the firefly way. Low energy, minimal disturbance, and we're signaling only to those who need to read it. Not because the system knows exactly what's wrong, but because it can make a shift visible early enough to change what you do next. Picture this. Maybe it's a small patch on your chest, like a glucose monitor for visualization purposes. It picks up heart rate, sweat response movement, that kind of thing. How the body is behaving. It learns the patterns, the baseline of the individual. It then Bluetooth connects to a smart bulb that uses its light as a rhythm signal. Just as fireflies don't scream or vibrate, a breathing light doesn't add to the sensory overwhelm of a person with dementia. It's there if you look, but it doesn't demand attention. So instead of showing you numbers or alerts, that light just changes its rhythm as something shifts. And those changes become the signal. Three rhythms, three starting points. So a slow, steady, building pulse, something in the environment, the room, the light, the noise, the time of day, start there. A shorter held pulse, something more physical may be building. So check the person first. And if neither direction resolves it, a third rhythm. This isn't settling. It needs more than you. This is not more data, it's just a different rhythm. And that changes what you do next. Once resolved, the light rhythm returns to baseline. And here's how that might come to life. It's late afternoon. Make-believe Maya is in the kitchen, her father is in the next room. He's been unsettled for about, I don't know, twenty, forty minutes, moving around, vocalizing, not distressed exactly, but just off. She's been here before, usually same time of day, light shifts or noise drops, and something changes and he goes a little inward. She knows the drill. Dim the lights, put something familiar on, sit with him and wait. And often that's the right call. So she's already reaching for the dimmer. But the new smart light, the firefly light on the wall, the one that's been breathing quietly all day, just present, just his signature rhythm, has changed its light rhythm. Not dramatically, not an alarm, just shorter, tighter, almost tense pulses. A low energy signal. So she pauses. Because it doesn't match. The rhythm has changed, and that's the message. So instead of going down the path she knows, the one that works most of the time, she actually goes in to him first, checks him physically, and she might notice he's been sitting in that same position for a while, weight pushed onto one hip and shoulders locked. So she shifts him and gets him more comfortable. And he starts to settle, and so does the light. And here's what didn't happen. She didn't spend forty minutes in the wrong lane, dimming lights, sitting with him, waiting again, wondering why it wasn't working. That particular loop that carers know too well, the one that ends with you on the couch at nine o'clock at night thinking, I don't know if I can keep doing this. She didn't waste herself on the wrong first move. And that's the whole thing. Not a diagnosis, not a cure, just don't go down the wrong road first. It's a small thing that is not a small thing at all, if you know that road. The senses already exist in clinical settings. I call this market scavenged design, feral design, basically, using what's already out there, nature style. The pattern recognition that can learn one person's physiological baseline, the heart rate movement, sweat response, and identify when those combinations start to shift in ways that may indicate some sort of physical distress might be building. That's already happening in sports science and in other fields. The parts are already out there, just borrowed from different worlds, rewired around a different brief. My favourite kind. Turns out the same problem lives at both ends of life. Because while I was deep in all of this, my brain kept drifting back to that car park I mentioned earlier, to the woman by her car and to every parent who has ever stood in a dark room at 2 a.m. holding a screaming baby and thinking, I have tried everything and I don't know what it is you need. You know, my mum has this story she tells about my brother. First baby, only a few months old. This was decades ago. She was doing her best with almost no information, and she had a baby who seemed to cry all the time. She thought she just had a difficult one. Then one weekend they left him with my grandmother while they went out. And mum came back the morning after bracing for, you know, the worst report card. But my grandmother just said he was a dream child, and he ate all his food and some. Turns out Mum had been underfeeding him, or starving him as she says now. Not from neglect, but from a first-time mother trying to read signals nobody had taught her to read. He wasn't a difficult baby. He was a baby trying to communicate something nobody in his orbit knew how to translate. Two bookends of life. The beginning, when we haven't found our words yet, and the end, when the words start to leave us. What's missing isn't the technology, it's the question. It's not how do we monitor more, but how do we turn signal into a first move from data into a simple language? One firefly, three principles. Rhythm, signature pattern, that any deviation is a signal, low energy. Nature doesn't diagnose, it signals direction. And sometimes for someone doing this alone at 4 p.m. for the hundredth time, that is everything. I'm Pia. This is Feral by Design. Nature owns the patent, we get to copy it.