Dementia and Soul
This article first appeared in the Minden Times and Haliburton Echo in July 2026.
In case you missed the last two deep dives into Michael Pollard and the nature of consciousness as relates to dementia, no worries – I’m taking it in another direction.
I’m going to call ‘soul’ what Pollard called consciousness, by which I mean the combination of identity and agency that makes us who we are. And I’m going to say that when we no longer have agency (the ability to act), the identity part of the soul, aka the observing ego, the ‘I’ that manages the mechanism, will guide us to whatever comes next.
So I’m going backward in time to before modern medicine promised a cure for everything. Or maybe I’m embracing nature. Certainly I’m rethinking death. I’m familiarizing myself with death as a natural end to life as we know it. I’m not looking forward to it – although I can absolutely envision a time when I will, and I have seen that in other people. For now I’m embracing it as an inevitable experience and one I’d rather be prepared for as best I can.
My faithful readers will recognize my dedication to identity plus agency, an ‘I’ that can ‘do’, as the crucial components of human life (and, as Pollard has humbled me, many other life forms). I’m adding ‘soul’ as the something that makes these two components work together (which may, but maybe not, be unique to humans). Soul, like identity and agency, is value neutral: it can be used for good or evil. (Which we’ve always known, which is why we created religion and law.)
Soul and dementia. What I’m after here is whether and at what point in the deterioration of the brain does the soul depart. I have to say ‘brain’, not ‘mind’, because we don’t have any empirical evidence of the mind so we can’t measure where or what it is, only what it does. And that, as we absolutely know, is very variable. And so far what we know about dementia (which isn’t much) is what it does to the brain.
My research is based primarily on my experiential N of 1, the death of my husband who had dementia. (Probably, although his brain was never explored; maybe it just aged out.) Here’s what I ‘know’: He had a peaceful death. He appeared to walk purposefully, with curiosity, through the portal that divides this earth from whatever the alternative is. He prepared for his death in a planful way, the most active part 25 years previously when he thought he was going to die of cancer and his mind (before the morphine got him) still functioned well. But also, in a more patient way, through his long romance with dementia -- I’d say, but it’s arguable, for the 15 years after we accepted that dementia was our room-mate, until he died.
He decided it was time to die when he no longer had the energy to find joy and purpose in his day. That was a week before he died. He did his last Facebook post on Tuesday (farewell to the community), got it together for his last meaningful engagement with medical staff on Wednesday, pulled himself together with difficulty to pass a literary cloak to his oldest grandson on Thursday. Then he lapsed into a place not accessible to us to undertake what I imagine was an active engagement with the last stages of life and/or acquaintance with death. On Sunday he died. A good death, as I’ve mentioned. Meticulously timed to coincide with his daughter, who was not ready for his death, to be out of the room.
So where does my N of 1 get me in talking about soul and dementia? It re-affirms my confidence in the Three Commandments that I learned at the Green Care Farms in the Netherlands:
Live till you die: that’s pretty self-evident.
Do with not for: It’s the job of the person whose death it is to manage it. The rest of us can only create the conditions under which they can best do their job.
Find joy and purpose every day: When, to use Pollard’s description of consciousness, you open your eyes in the morning and a world appears, but you don’t have the jam to embrace that world, it’s time to go. The agency gas-tank reads empty. Identity changes, from someone who’s living to someone who’s dying. The soul? I think that’s what guides the body through the process.
And where does the soul go when that job is finished? I dunno. My experience is it hangs around, is readily available for consultation, sometimes offers unsolicited advice. For how long? I dunno. For as long as it has joy and purpose, maybe.
