Newsletter 4: June 2026

At some point during the dementia journey, relationships often begin to change. Sometimes this shift is so gradual that it goes unnoticed, while other times it happens suddenly after a diagnosis, a hospital stay, or a tough experience. A husband may find himself taking on new roles, like giving reminders, organising, advocating, and protecting. A daughter might start handling appointments, medications, finances, and safety. A close friend could become the one who checks in often, offers reassurance, and worries every day.

Often, people do not realise when their role as a partner, child, or friend slowly blends into that of a carer.

For many, this change can feel very unsettling. 

Most relationships are based on give-and-take. We comfort each other, share ideas, split responsibilities, laugh together, and help each other through tough times. Even if one person is stronger in some ways, there is usually a feeling that love, understanding, and support go both ways.

Dementia slowly changes this balance.

Someone living with dementia might not be able to offer reassurance, remember important talks, notice emotional needs, or take part in the relationship as they used to. Conversations can become repetitive or confusing. Making decisions together may happen less often. Routines, humour, closeness, or companionship may start to change.

Many carers say they feel emotionally alone, even though they are still physically with their loved one.

This is often one of the hardest and least discussed parts of dementia care. People usually notice the practical side of caring, like appointments, tiredness, and responsibility, but talk less about the emotional changes that happen in the relationship.

A wife might really miss talking things over with her husband like she used to. A son may feel guilty for losing patience with a mother who no longer notices his efforts. A friend might stop visiting because conversations are hard, leaving one person to carry the emotional load alone.

These experiences can bring up mixed emotions that many carers find hard to talk about. Along with love and loyalty, there can also be sadness, resentment, frustration, loneliness, guilt, or even anger. People sometimes judge themselves for these feelings, thinking they should just be grateful their loved one is still here.

But grief does not only happen after death.

In dementia care, grief often starts long before any physical loss. Some people call this ‘living grief’ or ‘ambiguous loss,’ which means grieving the slow changes in someone who is still physically there.

You may grieve the conversations you no longer have.
The plans you once shared.
The equality within the relationship.
The personality traits that seem to fade.
The sense of being emotionally recognised or understood.

Sometimes carers feel like they are losing small parts of their loved one bit by bit. One day, it may be mutual memories that fade. Another day could be a change in personality, more confusion, or the loss of routines that once shaped family life.

This kind of grief is especially hard because it usually lacks a clear ending. There is no funeral, no set time to mourn, and often little recognition from others. Instead, carers are expected to keep going, coping, organising, and supporting others while carrying a quiet sadness in the background of everyday life.

And yet, within all these painful changes, love often remains remarkably present.

Love may not look the same as it once did. It might not show up in long talks, shared holidays, deep conversations, or emotional comfort. But love can change into something quieter, steadier, and very strong.

Sometimes love becomes patience.

It means answering the same question many times without getting annoyed. It is sitting together in silence when talking is hard. It is gently helping someone get dressed while respecting their dignity. It is learning to join their reality instead of always correcting them.

Sometimes love becomes protection.

Managing difficult decisions. It means making tough decisions. It is speaking up during medical appointments. It is noticing signs of distress that others might not see. It is taking on responsibilities your loved one can no longer safely handle on their own.

It means simply staying. It is showing up emotionally and physically, even when you feel tired, unsure, or heartbroken.

Many carers do not realise how much they do because it has become normal to them. Still, there is something deeply human about caring for someone who may no longer be able to give back in the same way.

This does not mean carers should always put themselves last or ignore their own needs. In fact, noticing how the relationship is changing is often the first step toward being kinder to yourself. When people see that they are not just caring for someone but also grieving, it can help explain why they feel so tired, conflicted, or overwhelmed. Also, it becomes easier to seek support without shame.

Talking openly with trusted friends, support groups, counsellors, or other carers can help ease the loneliness many people feel. Hearing others talk about the same emotions often brings a huge sense of relief. Feelings that once seemed wrong or selfish suddenly make sense and feel shared.

Importantly, adapting to the changing relationship does not mean giving up on connection.

Connection can still be there, even if the way you communicate changes. Listening to a favourite song, holding hands, sitting together in the garden, sharing a meal, looking at old photos, or laughing at a small moment can still bring real closeness.

Dementia changes relationships, but it does not take away the history, meaning, or emotional importance of a life shared. The relationship may no longer look as it once did, and acknowledging that loss is important. Pretending nothing has changed often increases emotional strain. But alongside grief, there can also be moments of tenderness, resilience, and deep humanity that persist in new forms.

One of the hardest truths in dementia care is that two things can be true at once: deep sadness for what is changing, and lasting love for the person who is still here.

Both are real.
Both deserve recognition.
And both are part of the caring journey.