Everyday Grief

Nobody prepares you for this kind of grief.

The grief most of us understand has a beginning and an end. There’s a loss, there’s a funeral, there’s a period of mourning, and then — slowly, painfully — life continues. The world around you acknowledges what happened. People show up. They bring food. They say the right things, or at least they try. This is what the world recognises as grief.

But the grief that comes with dementia doesn’t work like that. It doesn’t have a start line. It doesn’t come with a funeral or a trifle from the neighbours. The person you’re grieving is still here, still physically present, and yet you are losing someone who is still here — gradually, unpredictably, in ways that are sometimes invisible to everyone around you.

It has a name. Ambiguous loss. And once I came across that phrase, something clicked into place for me.

What Is Ambiguous Loss in Dementia?

Ambiguous loss is loss without certainty. Loss without closure. Loss that often lacks any kind of societal recognition. That’s because society, by and large, doesn’t know how to hold it. There’s no script for grieving someone who is still alive. There’s no language for the particular sadness of sitting next to someone you love and feeling the distance between you in a way you can’t fully explain.

And yet it is grief. Entirely valid, entirely real, and for many of us, entirely relentless.

The research on this is striking. Among people experiencing ambiguous loss caused by dementia, the majority report social withdrawal, fatigue, feeling regularly tearful, isolation, lack of energy, insomnia. More than half avoid places and reminders that bring the loss into focus. These are not signs of weakness. They are the body and mind responding to something genuinely, deeply hard.

Dementia Grief Comes in Layers

What makes dementia grief harder than almost any other kind is its compounding nature. You don’t lose someone with dementia once. You lose them in layers. The person who remembered your birthday. The person who gave advice. The person who could follow the story you’re telling them without every detail needing to be unpacked. Each layer takes something. And each time, you have to find a way to grieve it while still showing up, still caring, still being present for the person they are today.

I had my own moment of that, standing on a neighbour’s doorstep, watching a perfectly ordinary family evening and feeling it hit me all at once — the realisation that something I’d always assumed would happen might never happen. That grief came from nowhere and floored me. It took a week to fully surface from it.

That’s what ambiguous loss does. It ambushes you.

Why Anticipatory Grief in Dementia Feels So Isolating

The isolation that so many of us feel is bound up in this. It’s hard to talk about anticipatory grief dementia without being met with awkwardness or misunderstanding. People don’t always know what to say. Sometimes they say the wrong thing — “at least you still have them” or my personal pet hate, “at least they’re still here physically” — and while they mean well, it can make you feel more alone than before you opened up.

That’s why a lot of us, when asked how our loved one is, will default to “they’re fine, you know, doing okay.” It stops a lot of awkward conversations.

If you’re reading this and recognising yourself, I want you to know: you are not being dramatic. You are mourning someone with dementia in a way that most people around you will never fully understand. And that doesn’t make it less real. It makes it harder.

So What Do You Do With It?

There’s no clean answer. But I think there are a few things that help.

Finding small moments of joy, even on the hard days, and being deliberate about looking for them. For my mum, it was hearing Tease Me by Chaka Demus & Pliers and watching her face light up. For you, it might be something completely different. But those moments matter, even when everything else feels heavy.

Staying connected to other people who understand. This is part of why our community exists at Dementia Life — because the dementia carer grief you carry doesn’t have to be carried alone. We run online and in-person support groups specifically for families navigating this. Not clinical sessions. Just people who get it.

And allowing yourself to feel the grief without judging yourself for it. You’re not being ungrateful. You are carrying something genuinely heavy, and you are allowed to put it down for a moment and say so.

Grief and love are the same thing, just wearing different clothes.

You don’t have to have lost someone completely to mourn them. And you don’t have to wait for permission to grieve.