The grief of dementia

Losing someone while they're still here

By Olivia Andrews

PACFA Clinical Registrant · Palliative & Bereavement Psychotherapist · Llumus

There is a particular grief that comes with dementia. It does not arrive with a death certificate or a funeral. It arrives in the moment your mother doesn't recognise your face. In the conversation that goes in circles. In the person who sits in the same chair as the person you love, but who somehow isn't quite them anymore.

It is grief without the usual permission to grieve. There is no coffin, no flowers, no casserole at the door. The person is still here. And yet something — many things — have already been lost.

In my clinical work, I sit with this grief regularly. It is one of the most common forms of loss I encounter — and one of the most invisible. This resource is an attempt to name it, because what is named can be held. And what can be held can begin to be grieved.

A loss without a name

The psychologist Pauline Boss coined the term ambiguous loss to describe grief that occurs without the clarity of a death — grief that has no clear endpoint, no social ritual, and no widely recognised permission to mourn.

Dementia is one of its purest forms. The person is physically present but psychologically absent in ways that deepen over time. They may forget your name, or your relationship, or the shared history that formed the ground of your bond. They may be frightened of you, or not see you at all. And yet they are alive. They are sitting across from you. They may reach for your hand.

The cruelty of ambiguous loss is that it offers neither the finality of death nor the comfort of the person's continued presence — only a sustained, private grief with nowhere to land.

Without a socially recognised loss, people grieving through dementia often find themselves without the support that typically surrounds bereavement. Friends don't know what to say. Family members may be at different stages of their own grief — or in denial entirely. And the person doing the caring often has no time or space to grieve at all, because the work of caring fills every hour.

The losses accumulate

One of the things that makes dementia grief so relentless is that it is not a single loss. It is a long sequence of losses, each one arriving before the previous one has been absorbed.

You may lose, in no particular order:

•         The conversations you used to have

•         The person who knew your history — who remembered your childhood, your failures, your name

•         The relationship you had built over decades — its texture, its shorthand, its mutual recognition

•         The parent, partner, or friend who once knew how to comfort you

•         Your own sense of being known by this person

•         The future you had imagined — shared, and now uncertain

•         And, often, the version of yourself that existed in relation to them

Each of these losses deserves to be mourned. Most of them never are — at least, not at the time. People grieve them quietly, privately, in stolen moments, or not at all. The grief gets deferred, accumulated, carried forward until it becomes something that is very hard to put down.

Why this grief is so hard to carry

Part of what makes dementia grief so difficult is the absence of resolution. With death, there is an ending — painful, but definite. Grief has a clear object. The mourning can begin.

With dementia, the ending is indefinite. You may grieve your mother for years before she dies. And when she finally does die, the grief often doesn't lift — it shifts, or deepens, or takes an unexpected form. Some people find they cannot grieve the death because they had been grieving for so long already. Others find that the death releases something they didn't know they were holding.

There is also often grief about the caring itself — about the years given, the sleep lost, the self set aside. About the moments of anger or resentment that came with exhaustion. About the times you couldn't be patient, or couldn't hide your own fear. Carers often carry enormous guilt about these moments, and the guilt compounds the grief.

Grief and guilt in this context are not signs of failure. They are signs of love, under conditions that were never designed to be borne alone.

When the person is still there, but differently

Many people who come to me describe a particular, unresolved tenderness: the experience of their loved one still being present in some ways — a laugh, a gesture, a moment of unexpected recognition — even as so much has been lost.

These moments of presence within absence can be among the most disorienting things to hold. They are also, sometimes, among the most precious. The relationship does not disappear with the diagnosis. It changes, becomes unfamiliar, requires a kind of grief-alongside — a mourning that coexists with love, with care, with the continued act of showing up.

This is not something that grief looks like in films or books. It does not have a tidy arc. It sits alongside ordinary life, sometimes very quietly, sometimes in ways that suddenly overwhelm. It asks for a kind of attention that is rarely modelled and rarely supported.

What helps

The most important thing that helps is having the grief witnessed — by someone who understands that the losses you are carrying are real, even without a death.

Psychotherapy can provide this. Not to resolve the grief, or to move you through it on a predetermined timeline, but to give it space — to let it be named, felt, and held alongside everything else you are carrying.

In my work, I also find that it helps to:

•         Name each loss individually, rather than holding them as an undifferentiated weight

•         Attend to what is still present in the relationship — not only to what has been lost

•         Make space for the guilt and the anger, which are almost always also grief

•         Allow the grief to exist without needing it to be resolved or explained to others

•         Find moments of genuine connection with the person, even as they change — a hand held, a piece of music, a shared silence

If you are in a caring role, it also helps, where possible, to find some respite — not as self-indulgence, but as a condition of sustainability. Grief that is never given any room tends to find its own ways out.

After the death

When someone with dementia finally dies, the grief that follows can be complicated in ways that catch people off guard.

Some people feel relief — and then guilt about the relief. Some feel an unexpected renewal of grief for the person they knew before the dementia, as if that earlier loss can finally be mourned. Some feel numb, having grieved for so long already. Some feel, for the first time, genuinely bereft.

All of these are normal. The grief of dementia does not follow a single path. It is as individual as the relationship that is being mourned.

What I would say to anyone in this position: the grief you have been carrying, often silently, for years — it deserves to be acknowledged. Not just after the death, but throughout. You have been grieving a real loss. It was always real.

About Llumus

Llumus provides specialist psychotherapy for grief, loss, and end of life — for individuals and families, in any setting, at any stage of life. If you are navigating the grief of dementia — as a family member, a carer, or someone with their own diagnosis — you are welcome to reach out. Sessions are available in clinic (Sydney), by telehealth across Australia, or in residence at palliative and aged care facilities.