When Grief Arrives Too Soon: Naming the Unspoken Loss in Dementia Care

We often think of grief as something that comes after death — the sharp, unmistakable pain that follows when someone we love is no longer with us. But for those walking the dementia journey, grief rarely waits for the final goodbye. It arrives quietly, unexpectedly, and long before the physical end.

It can feel confusing because your person is still here. They may smile at you, hold your hand, laugh at a familiar joke, or share a meal with you. And yet, woven into these moments of connection is the ache of absence — the absence of how things once were, of shared memories now faded, of the roles and relationships that are shifting in ways you never anticipated.

This is grief, too.

The Many Faces of Grief

Grief in dementia care is not one singular feeling. It wears many faces. Sometimes it’s sadness, the kind that settles heavy in your chest. Other times it’s anger — sharp, sudden, hard to explain. At times it looks like guilt: Am I doing enough? Did I miss something? And then there are the moments of numbness, when you feel like you should cry but can’t.

These emotions are not signs of weakness. They are signs of love. They are evidence that you are fully human, carrying something profoundly heavy while still choosing to show up day after day.

The challenge is that these emotions often go unnamed. When grief is not spoken about, it can turn inward. It can become isolation, exhaustion, even burnout. Care partners are at a higher risk for depression, anxiety, and health struggles — not because they lack resilience, but because the emotional toll of dementia is relentless and rarely acknowledged.

Naming grief is the first step toward healing.

Anticipatory Grief

One of the most common forms of grief in dementia care is anticipatory grief — the grief that surfaces long before loss. It’s the ache that comes when memories fade, when conversations grow shorter, when the person you knew begins to feel both familiar and unfamiliar at the same time.

It is mourning someone who is still physically present. It’s holding their hand at dinner; while realizing they no longer know the recipe you cooked together for decades. It’s celebrating a birthday, while wondering how many more they will recognize.

Anticipatory grief is complicated because it doesn’t follow a straight line. There’s no funeral to mark it, no rituals to honor it, no clear start or finish. And yet, it profoundly shapes the caregiving journey.

Ambiguous Loss

Pauline Boss, in her groundbreaking book Ambiguous Loss, gave us the language to describe what many care partners intuitively feel: the pain of being in two places at once. Your loved one is both “here” and “not here.”

With dementia, this ambiguity is ever-present. You may see your spouse every morning, but the conversations that once anchored your relationship are slipping away. You may visit your parent in a memory care community, but they no longer recognize you as their child. The person you love is still alive, but the relationship you know is shifting beneath your feet.

Ambiguous loss is particularly hard because it offers no closure. The brain craves certainty, but dementia provides anything but. We search for solid ground, but the terrain keeps changing.

Naming this as ambiguous loss gives us permission to stop searching for clarity where none exists. It allows us to grieve without feeling guilty for grieving “too soon.”

Denial and the Progression of the Disease

For many families, denial is an early companion on this journey. It shows up in phrases like:

• “It’s just normal aging.”

• “They’re just tired today.”

• “He’s fine — he still knows who I am.”

  
  

Denial is not failure. It’s a form of protection, a way of shielding the heart from pain before it’s ready to bear it. But denial also delays acceptance. And acceptance is what opens the door to healing, support, and the ability to live fully in the present moments we still have.

Part of grief in dementia care is learning to face reality, even when it hurts. This does not mean giving up hope. It means shifting hope — from cure to comfort, from restoring the past to cherishing what is still possible today.

The Grief Cycle in Dementia

You may have heard of the stages of grief: denial, anger, bargaining, depression, and acceptance. In dementia care, these stages rarely arrive in order. They often loop, repeat, overlap. One day you may feel acceptance, the next you’re pulled back into anger or sadness.

• Denial might sound like: This can’t be happening. Surely, it’s just forgetfulness.

• Anger might erupt when your person lashes out at you, or when the disease feels unfair and cruel.

• Bargaining often whispers in thoughts like: If I find the right treatment, maybe it will stop.

• Depression comes with the weight of realizing how much has already changed, and how much more will change.

• Acceptance arrives in moments of peace, when you choose to meet your person where they are, rather than where they once were.

  
  

Grief in dementia is cyclical, not linear. It is not something to “get over,” but something to live alongside.

It Is Okay to Grieve

Too often, care partners hear: “Be strong.” “Don’t cry.” “At least they’re still here.”

But the truth is: it is okay to grieve.

You can love someone deeply and still feel sorrow for the losses along the way. You can be grateful for the moments you still share and still mourn what has changed. These emotions can co-exist.

Your grief does not make you weak. It makes you human.

Reaching Out for Support

No one should carry this grief alone. Support may look like talking with a trusted friend, joining a caregiver support group, or working with a counselor trained in grief and loss. Sometimes support is as simple as someone listening without judgment, acknowledging the weight you carry.

Dementia is a long journey, and you will need companions along the way. Seeking support is not a sign of failure. It is an act of strength and of love — for yourself and for the person you care for.

Grief as a Pathway to Healing

When we name grief, we begin to release it. When we share grief, we lighten the load. When we allow ourselves to feel grief, we also open ourselves to moments of joy, connection, and meaning that can still be found.

Grief, paradoxically, is not only about endings. It is also about love. We grieve because we have loved deeply. And within that love lies the strength to heal.

Healing does not mean the pain disappears. It means we learn to carry it differently. It means we find ways to honor both the sorrow and the beauty of this journey.

A Final Word

If you are caring for someone living with dementia, know this: your grief is real, it is valid, and it deserves to be named.

You are not alone.

By acknowledging grief — anticipatory grief, ambiguous loss, denial, anger, sadness — you create space not only for pain but also for healing. You honor your own heart, and in doing so, you honor the love that continues even in the face of loss.

As Pauline Boss reminds us, living with ambiguous loss means learning to hold two truths at once: your person is here, and not here. Both are real. Both deserve to be grieved.

And in that space of honesty, support, and compassion, we find the possibility of healing — not because the journey is easy, but because love makes it worth walking.