What If Dementia Wasn’t Inevitable?
Why what you do today could change everything. Just give yourself permission to start.
Am I a sitting duck?
As this week is Dementia Action Week, I’m taking a slight diversion of topic, but an important one I think.
I have been learning more about dementia this year as it pops up every increasingly in my world. It has really made me ponder. I think we’re asking the wrong questions.
55 million people worldwide are living with dementia today. By 2050, that number is projected to more than double. 139 million people. Think of that. That’s a civilisational challenge; and we seem to be responding to it as if it’s inevitable.
The system is backwards
I was excited that AI can really change situations and so I dived in to learn more. AI is doing extraordinary things in the dementia space. Early detection. Drug discovery. Helping families whose lives are upended to take on the caring role, and providing company via bots, that can reduce anxiety in sufferers. These matter enormously to the people living inside that reality right now.
But what doesn’t sit well with me is this realisation: the ‘system’ — the research funding, the pharmaceutical incentives, the AI applications getting the most investment, feel overwhelmingly oriented toward people who already have dementia, or are close to it, rather than removing it.
This makes a certain kind of sense as the need is urgent. However, that perhaps not coincidentally, that seems to be where the money is.
Get this. A daily drug that treats Alzheimer’s generates revenue for years. A drug that could delay onset by five years will generate far less. Nobody gets spectacularly rich from prevention. And so despite the science being robust, despite the evidence being clear that lifestyle factors can meaningfully shift the odds, we leave the prevention conversation for the background.
What can we all do?
We know many things can help. Sleep, social connections, staying curious and learning, cognitive stimulation, cardiovascular health, managing stress, diet, even getting your hearing tested. These things move the dementia dial. The knowledge exists. Yet the system incentives don’t reward acting on it.
So are we setting up to solve this or just to manage it?
The sad reality is that incentives wont change anytime soon? Pharma companies are not going to walk away from treatment revenues for the greater good. So if the system wont change, perhaps we can.
Our fear responses close down the prevention route
Many people really fear the loss of their mental capability. Given the statistics, dementia is on the cards for many of us so how are we preparing?
Some don’t think about it at all. Either the fear is too large, the horizon too distant, and so it gets filed under “things I’ll deal with later.” This is denial, and it’s very human.
Others, and this is the one that really strikes me as I am seeing it first hand; focus their energy on planning for the aftermath. From discussions of euthanasia (yep I heard that one) to getting their affairs in order be that deciding where to live, having conversations with family about what they’d want or simply organising the powers of attorney that are a common thing, there’s wisdom in this. But sadly also underneath it, is the acceptance that the outcome is fixed. That somehow the die is cast.
Both responses skip something entirely. The middle reaction. The one that says: the trajectory is not fixed. There are things I can do now, today, this year; that will genuinely change my odds. The idea of health futures, where we actively shape what life looks like isn’t completely new, but here it feels absent.
That middle option, prevention, gets very little airtime. And I think it’s the most important conversation we’re not having.
Why this isn’t abstract for me
Dementia runs in my family. Both sides. The risk factors I’ve watched up close early retirement, social isolation, stress, lack of exercise, a sedentary lifestyle, untreated hearing loss — are the same ones the research flags as most significant and most modifiable.
I’m 56. I’m building something new, in a country where my social connections are still growing. By the standard risk checklist, I’m not in a great position.
I’m also an extrovert who needs connection like oxygen and so I am actively building it. Ensuring I do cognitively demanding work every day. I’m curious. I’m learning. I’m paying attention to my sleep, my exercise and my diet. Not perfectly but I am becoming aware, and avoiding ultra processed foods which will no doubt get connected to this at some point! I am thinking in a way I never used to.
I’m writing this, which requires me to think carefully and argue clearly, and I am trying to use AI to expand my thinking, not to allow cognitive atrophy - that is an ongoing area to monitor.
None of that is accidental. It’s a choice. A deliberate choice to address the part of the equation I can actually influence, and be aware of the things that don’t work in my favour.
It’s not just the big things either. Did you know this? The meetings you didn’t want to sit in this week also corroded your brain. Stress built by being somewhere you don’t want to be is also a dementia risk. Listen to your instincts, there is lots we can do.
I’m not frightened. I’m challenged to own this, and you can be too.
Can I help?
Given the genetics are not stacked in my favour, and I feel like a sitting duck, helping myself seems a no-brainer, but perhaps I can help beyond that. I wonder if I am a potential walking case study of how to prevent? And so I’m looking and genuinely open to a baseline assessment of my brain health. Not because I expect bad news. But because I would know where I’m starting from. I think there’s something useful in being a living, documented case study of someone who has the genetics and family history working against them, and who decides to take active, evidence-based steps to change the odds.
If you’re a researcher, a clinician, or working on prevention-focused programmes — I’d genuinely love to talk.
The question I want to leave you with
I think it’s the most clarifying question in this space, and I don’t hear it asked enough:
If you knew you were going to get dementia — where would you put your energy?
Into planning what happens after? Or into doing everything in your power to push that moment as far into the future as possible and perhaps avoid it altogether?
The science says the second option is real. It’s available. It requires no waiting for a drug approval or a diagnostic breakthrough. It requires the decision to act, now, while the window is wide open.
That’s the missing option. And I think it’s where the most important work of the next decade needs to happen.
The important question isn’t will you get it, but what are you doing about it now?
Have a good week.
Fiona
Look again. See what was always there.
If this resonated, share it with someone who needs to hear it. And if you’re working in dementia prevention — find me. I want to help.