Grief Without Loss: Shrien Dewani on The Quiet Burden Families Carry in Dementia Care

By Shrien Dewani 

As National Grief Awareness Week begins, I find myself thinking about a form of grief that sits quietly within our care communities every day. It is not the grief that arrives with loss, but the grief that comes long before it, the grief that appears gently, then lingers, as dementia reshapes relationships and familiarity begins to shift. 

For many families, dementia introduces a slow unravelling of what once felt certain. It is the experience of losing parts of someone you love while they are still here. It is subtle, often unspoken, and rarely acknowledged in the language we traditionally use around bereavement. And yet, it is real, human, and deeply felt. 

The Weight of Living Grief 

Dementia changes the very fabric of connection. Conversation shifts. Shared memories become uneven. The map of “us” starts to look different. Families often describe this grief not through large moments, but through the quiet accumulation of smaller ones: 

• Stories that no longer land where they once did. 

• Recognitions that fade and return. 

• Rituals that lose their anchor. 

• A togetherness that feels altered, even when the love remains. 

This is living grief, continual, gentle, and threaded through day-to-day life with someone whose sense of self is changing. 

What Families Carry into Our Care Communities 

Over the years, I have sat with many families who carry this grief without naming it. I have seen the weight of it in their eyes and heard it in the pauses between their words. 

There is sadness in witnessing change. 

There is guilt in the decisions that feel impossibly heavy. 

There is loneliness, because this type of grief is rarely recognised by those outside the experience. 

And yet, through all of it, there is profound love, steady, enduring, and present. 

Simply giving language to this grief does not remove the pain, but it does create space for understanding, for compassion, and for families to feel seen. 

The Responsibility of Care Teams 

In social care, our responsibility extends far beyond supporting the person living with dementia. It includes walking alongside the family who loves them. 

At @Evolve, we hold this as a central part of our work. Care teams can make all the difference by: 

• Offering reassurance that grief is a natural response to change 

• Creating safe spaces for families to share what feels heavy 

• Honouring the personhood of the individual, even when expression shifts 

• Working in partnership with families rather than standing at a distance 

When we do this well, the journey becomes less isolating. Moments of connection gain new meaning. 

Finding New Pathways to Connection 

Dementia may alter what is familiar, but it does not remove the possibility of connection. Instead, it invites families into new ways of recognising it: 

A smile that appears unexpectedly. 

A song that sparks a moment of presence. 

A gentle glance of recognition. 

A quiet ritual that brings a sense of belonging. 

These moments, often small, always meaningful, allow families to hold on to the essence of their relationship, even as its form continues to change. 

Accepting Living Grief 

Grief that unfolds over time can be difficult to acknowledge. Yet acceptance can bring a surprising sense of peace. 

It is not giving up. 

It is not letting go. 

It is compassion, for yourself, for your loved one, and for the journey you are both on. 

It is recognising that sorrow and love can co-exist, and that both deserve attention. 

A Reflection for National Grief Awareness Week 

As this week begins, I hope we widen the conversation around grief. It is not always tied to death. Sometimes it emerges in the spaces where love stays constant, but familiarity shifts around it. 

To every family walking this path: 

Your feelings are real. 

Your grief is valid. 

You do not have to carry it in silence. 

Within our care communities, we witness the courage it takes to love someone through change. We see the resilience, the tenderness, and the quiet strength families bring. And we remain committed, not only to providing care, but to offering compassion, partnership and steadiness throughout the journey. 

In dementia care, grief and love often sit side by side. And with the right support, families can still find meaning, connection and dignity, even through the most challenging chapters.