Ambiguous loss
When a loved one is still here, yet so much has changed. We call this The In-Between Space. It is one of the hardest parts of dementia, and one we rarely talk about. You are not alone in it.
What is ambiguous loss?
Ambiguous loss is the grief we feel when someone we love is physically present, but changed by dementia. There is no funeral, no clear ending, and often no words for it. The person is here and not here at the same time.
Because the loss has no clear shape, it can be confusing. You may grieve the person they were while still caring for the person they are. Both feelings are real. Both are allowed.
Why it can feel so heavy
- There is no closure. The loss is ongoing, and it changes over time.
- Others may not understand. Friends might say "but they're still here," which can leave you feeling alone.
- Your role keeps changing. You may move from partner or child to carer, and that shift carries its own grief.
- The feelings come in waves. Good days and hard days can sit close together.
Naming it helps
Putting a name to this experience can bring relief. It tells you that what you feel makes sense, and that many other carers feel it too.
Gentle ways to cope
- Hold two truths. You can grieve and still love. You can feel sad and still find moments of joy.
- Let go of being perfect. Caring is hard. Doing your best is enough.
- Stay connected. Talk with people who understand. Our Living Hub is one place to do that.
- Keep meaning alive. Small rituals, music, photos and shared activities can still create connection.
- Care for yourself too. Rest, support and time for you are not selfish. They help you keep going.
"Looking back, moving forward." We make space for grief and love to live side by side.
Questions carers often ask
Gentle answers to the feelings that come up in The In-Between Space. Tap a question to read more.
I feel guilty all the time as a carer
Guilt often shows up because you care deeply, and because the situation keeps changing without clear answers. In ambiguous loss, there is no perfect way to care, so carers often judge themselves harshly.
When guilt arrives, try gently reframing it: "This is a sign I care, not a sign I'm failing." Taking a short break or asking for help does not reduce your love for the person.
I feel like I'm grieving someone who is still alive
This is one of the core experiences of ambiguous loss. You are not imagining it. The relationship is changing, and your mind is trying to make sense of that.
Grief does not only happen after death. It can happen during change. Love and grief can exist at the same time.
Why do I feel angry at the person I care for?
Anger is often a sign of exhaustion and emotional overload. It does not mean you do not love them.
It usually means you have been carrying too much for too long, without enough support or rest. In The In-Between Space, emotions often come in mixed layers: love, grief, frustration and fatigue, all at once.
I don't recognise my partner anymore
This is a very painful part of ambiguous loss. The person is physically present, but changes in memory, behaviour or personality can make the relationship feel unfamiliar.
It can help to shift focus from "who they used to be" to "what connection is still possible now."
Is it normal to feel relief sometimes?
Yes. Relief is a human response to pressure being reduced, even briefly. Feeling relief does not mean you are uncaring.
It means your nervous system is getting a moment to rest.
I feel alone even when people are around
Many carers describe this. Ambiguous loss can feel isolating, because others often do not fully understand the emotional complexity.
You may be surrounded by people, yet still feel unseen in your role. Talking with others who understand can help.
Why does this feel so hard compared to what others think?
Because the loss is not visible or socially recognised in the same way as a death. There is no clear ending, which makes it emotionally ongoing.
I feel like I've lost my identity
Caring can slowly take over roles, routines and your sense of self. You are still you, but your role has grown a great deal.
Reconnecting with small parts of your identity outside of caring can help restore some balance.
Why do I feel guilty asking for help?
Many carers feel this because they link care with responsibility. But asking for help is not failure. It is sustainability.
Without support, carers burn out. Help lets you keep going.
I feel exhausted all the time
Long-term emotional and physical strain is common in caring. This is not just tiredness. It is sustained stress.
Rest is not optional. It is part of care.
The In-Between Space is a place for support and understanding. It is not a medical service. If you need help, please speak with your doctor.
Understanding the brain helps too
When we understand what is happening in the brain, the changes in our loved one can feel less frightening, and easier to respond to with patience.
It is the illness, not them
Changes in memory, mood and behaviour come from changes in the brain, not from choice.
Connection still matters
Even as words fade, a calm voice, touch and familiar music can reach someone you love.
Research brings hope
Studies keep improving how we support people with dementia. We share what works with our community.
This page offers general information and support, not medical advice. If you or someone you care for needs help, please speak with your doctor. In an emergency, call 000. For dementia support, the National Dementia Helpline is available 24 hours on 1800 100 500.
You do not have to carry this alone
Come to The Living Hub, or reach out. We are here to listen and to walk alongside you.